tag:blogger.com,1999:blog-28489162932989343422024-02-07T01:39:39.729-05:0066 rosesErin Moorehttp://www.blogger.com/profile/08027766394549526193noreply@blogger.comBlogger458125tag:blogger.com,1999:blog-2848916293298934342.post-2089602403313771822017-09-21T08:19:00.004-04:002017-09-21T08:28:11.202-04:00I've landed
<br />
I’m on a small airplane, somewhere over Indiana or Ohio, Coldplay’s “Don’t Panic” is playing in my earbuds. I’m looking down on my life from 30,000 feet, as I feel I have been for the past month and a half. I’m finally on my way home. <br /><br />When I last had the chance to write, I was in an entirely different place than I am today. We deeply enjoyed our last days as Cincinnatian’s, packed our things, and went on our way. Hershey, PA was our ultimate destination, and I knew so very little of how winding that journey home would be or how much I would learn on my way there. From Cincinnati, we visited Charleston for a week with our family. Right before we were to leave, I got hit in the face with a line drive at a minor league baseball game and have been in bed ever since. Through the ups and downs of the past six weeks, my only regret is having been so consumed by my every day that I did not recognize all of the signs that were pointing me toward a slower, more purposeful life, and that it took getting smacked in the face with a line drive to really slow me down, to really wake me up.<br /><br /> A long story short, the accident caused a pretty significant concussion, and my brain needed rest. I laid in bed – tired, sad, confused, angry – the timing was bad. I’m the social organizer for our family and I couldn’t even get out of bed as we moved into a new house in a new town and didn’t know a soul. My presence online faded to black. Text messages went unanswered. Twitter carried on without me. And I laid in the dark with only my thoughts.<br /><br /> When I was able to talk to my friends and family again, the biggest question they would ask was “How are you?” I don’t know how I was. I still don’t know how I am. My brain isn’t working right. My decision making isn’t rational. I go to rehab. Sometimes I check my email. I talk to the kids. I go for a walk. I go back to sleep. There’s been lots of crying trying to understand and make sense of all of this, and as the fog starts to dissipate, it is all becoming clear to me. I’m exactly where I’m supposed to be.<br /><br /> I left my house on Thursday morning last week with the goal of attending the most soul-filling event with the most awe-inspiring strangers and friends that I’ve ever met anywhere in the world. I was bound for Palo Alto, and I hid in a stall in the bathroom at the Harrisburg international airport, alone, and paralyzed with fear. The anxiety that I’ve acquired as a result of the concussion has been profound. I took a valium, a looked at strangers searching for support and understanding, and eventually I got on the plane. I called my husband from Chicago, overwhelmed and lost, and we walked me through how to get to my gate, how to get on the next plane, what to do when I arrive. One step at a time. I thought I could do this. I felt ready. It felt to me like what I needed, the healing presence of friends. The doctors have continued to say that only I know how I feel, and I need to balance the necessary rest with the slow challenge of rebuilding the pathways in my brain that were disrupted when I was hit with the baseball. I’m doing the best I can. I had had lunch with some new neighborhood friends the week prior, and had even made a trip to Target on my own. Social situations weren’t my problem, I thought. I couldn’t focus on a computer screen, but I could certainly have a conversation. I didn’t anticipate the overwhelming nature of the many moving parts and the many conversations that happen inside of an airport, and at a conference as vibrant as Stanford’s MedicineX.<br /><br /> A friend picked me up at the airport in San Francisco and for the first time in a lot of hours I felt safe again. We made our way to Palo Alto, staying with a small group of friends in an Airbnb, the perfect place away from the normal chaos of the shared spaced at the Sheraton where I’ve stayed in the past. We wore comfy clothes and caught up. We went to bed early and, in the morning, left for the conference. It was more than I could handle. A combination of physical fatigue and emotional hyper-stimulation took over and I realized that I couldn’t handle being there. I was at MedicineX for half a day and I spend the rest of my time back in the safe embrace of my friends at the Airbnb.<br /><br /> I’ve only ever attended MedicineX as a caregiver, and now I was a patient. But I was a patient with an invisible illness. As I stumbled past old friends on my way to get a breath of fresh air, I could only force out half a smile, maybe wave my hand, and just keep going. I saw confusion in the eyes of many old friends as I blew past with a laser focus on getting to wherever I needed to be. There were less hallway conversations, fewer hugs. But very few people knew what had happened, what I was experiencing. I wanted to stop and tell them my whole story, to listen to theirs, to reconnect like we do every year in this wonderful place, but it was taking all that I had to just focus on the immediate next step in front of me. I missed the breadth of connection that usually fills my extroverted self with so much joy, but it was replaced with a depth of connection with a simple few that was just what I needed. The best part of the conference this year was the opportunity to deepen relationships with the 5 people I shared a house with.<br /><br /> I laid in bed at night so disappointed in myself. I had made the wrong decision, I thought, to leave the family that I hadn’t even really been an active part of for the past 2 months, to go see my other family, my healthcare tribe. Feeling the drain brought guilt that I would be returning home and working from a void. And the entire time I knew that my brain wasn’t working right. I wasn’t sad, I was feeling sad. I wasn’t tired, I was feeling tired. I wasn’t a disappointment, I was feeling like a disappointment. There wasn’t permanence in any of this.<br /><br /> When I woke up on Sunday morning I was faced with the daunting task of getting on a plane again. I was still recovering from my first flight three days prior, and I wasn’t heading home. They came to my bed to coax me out of it. The drove me to the airport and arranged an escort so that I wouldn’t feel alone. They gave me hugs and laughs promises of reunions sooner rather than later. They gave me their vote of confidence that this new adventure was exactly where I’m supposed to be, and the journey is a part of that. I was on my way to starting a new job, one that I was supposed to start in August prior to getting hit in the head with a baseball. I didn’t know what would happen when I landed in Indianapolis. I didn’t know if I would be able to get to my hotel, or if I would be able to make it to orientation the next morning. I was encouraged to ride the wave, one foot in front of the other, one decision at a time. Get to the hotel. Put on my pajamas. Go to sleep.<br /><br />I made it to orientation, and when the materials in front of me read, “Ask yourself everyday what you can do to improve the future” I again felt like I was just where I was supposed to be. I have a contribution to make, and I found a receptacle for it. I’m so tired of fighting, of pouring all of my energy, truly my heart and soul, into swimming against the tide. I found my wave and I’m gonna ride it for a while.<br /><br />Orientation went well. My doctor and I had discussed how only I know how I feel and how it wouldn’t be a switch that turns back on, but rather a retraining of my brain, an exercising of the muscles to regain strength, physically and mentally. I spent a month laying in bed, thinking about my life from 30,000 ft above it. I fell asleep thinking about it and I woke up thinking about it. I got to sit and watch for a while. I got to take a break. The opportunity that is before me is to start exercising my mind again, in a new place and space, with this newfound experience and knowledge, at a slower pace. My new coworkers supported me in my need for breaks on those first three days. I could sit in a conference room and ask questions and take notes. I couldn’t make it out to dinner. I could sit in the common area and engage in conversation about why I said yes to this job, and what I hope to bring. I couldn’t have the same conversation while walking.<br /><br /> I got into an Uber yesterday afternoon on my way to the airport, finally on my way home, realizing that this was, after all, exactly what I needed. On the way to the airport, we drove past a sign for Cincinnati and I was filled with memories of that time not so long ago, of my desire to be there again where it was familiar, and safe, where it was easy and where we were all happy and life was good. What I want more than that right now is to go home, and home is in a different place now, called by a different name.<br /><br /> I feel like I’ve been floating above my life ever since we made the decision to move back in May, and I’m finally about to land. A thousand things have happened between now and then that have made me question our decision, and yet the universe is putting us right where we belong. The new perspective I’ve been afforded in all of this is incredible, and it’s not something that you could have ever asked for. I wouldn’t change any of it. I’m grateful for all that has happened – the pain and the fear and the uncertainty. The kids learned agility and bravery and vulnerability through this. I learned patience and kindness and gratitude. As we began our initial descent, I can’t help but feel like I’m finally landing exactly where I’m supposed to be. I wouldn’t be as tired, or as healed as I am if I hadn’t experienced the challenges of the last 6 weeks and the last 6 days. So I’m raising a glass to you, universe. A glass of sparkling water since booze is still off the table. I’m offering a toast to my team – my family and my friends, near and far, who have stuck with us on this crazy adventure. All the love to you. I want to live a life with greater purpose - the "if it's not a 'Hell Yeah!' it's a 'No'" kind of life. I want to help other people to experience this clarity and joy of living wholeheartedly without having to experience the trauma or tragedy that is often what brings us to it. Today I will get out of bed. I will pour my coffee. I will open my computer. And we will see what life brings next. Erin Moorehttp://www.blogger.com/profile/08027766394549526193noreply@blogger.com0tag:blogger.com,1999:blog-2848916293298934342.post-69372591889746408952017-05-25T13:57:00.001-04:002017-05-25T14:02:46.782-04:00Home<div class="MsoNormal">
If you’ve spent any time reading my writing in the past, or
living as my neighbor, or being Facebook or Twitter friends with me, you know
that I’m rarely at a loss for words. I have lots of thoughts and feelings, more
than enough opinions, and passion that runs through me like a river. After Drew
was diagnosed with CF back in 2010, I remember looking at my husband and saying
to him, “I don’t know what to say. I don’t know how to tell people.” Now that
we are moving, it’s not that I don’t know what to say, but rather that I don’t
know how to start or finish.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I met my husband at a bar, or rather on the way to a bar
back in 2003. This was before Uber and practically before cell phones when
friends or friends of friends would see one another out on a Friday night and
all pile into a car, lapping up to make sure everyone fit so that we didn’t
have to walk <i style="mso-bidi-font-style: normal;">the</i> <i style="mso-bidi-font-style: normal;">block</i> to our destination. It wasn’t love at first sight, but
intrigue. We connected and then we dated before I broke up with him. He didn’t
go away though, and I’m sure glad he didn’t. He was working in Philadelphia,
having graduated from NYU with a degree in Actuarial Science - a man who didn’t
get as excited about exciting things as I did about non-exciting things, and as
a senior in college he was exactly what I was looking for – someone with money
to buy my drinks at the bar. When I graduated and moved to New Jersey, he stuck
around, taking the train to visit me on the weekends, before we eventually
moved in together. I started to commute from Philadelphia to New York every day
for work, and he quietly and kindly walked me to the train station every
morning and met me back there when I returned home, tired and cranky, every
night. We talked about our next adventure, and looked for jobs where we might
be able to both live and work in the same city. When he was offered an
opportunity in Cincinnati to do marketing research, we decided to embark on
that journey and made the move. With no new job in place for myself, I was free
to explore the great wide world of…Covington, KY. I cried most days, wanting to
go home, but put on a brave face and stood in line at the grocery store doing
this thing they did in the Midwest that I was unfamiliar with called “talking
to people”. In Philadelphia and New York we just bustle past one another, moving
from thing to thing, and this new, slower pace was strange for us. But after a
year in Kentucky and my having found myself a job and some new friends, we
decided to stay. We bought a house and a year later got married. Our parents
thought this was backward but it worked for us. Building a deck as newlyweds
would have surely been the beginning of the end, so we did things in reverse at
the start. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Then in 2007, we learned that alcohol can be a leading cause
of pregnancy. Now married and overjoyed to be expecting, we turned our second
of two bedrooms into a nursery, promptly purchased a minivan, and welcomed our
precious Ella in June of 2008. I stopped working but never lost the friends
that I made during those 3 years. We thought we might return “home” once we had
kids, but things were going well with work and we were happy in our
neighborhood. Our marriage survived a bathroom remodeling project in 2009
before we decided that we were ready for the suburbs!! <span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We moved into our new 4 bedroom home on a Tuesday, then
found out on Friday we were expecting again. About 3 weeks later we learned
that there were not one, but two babies. We were deep in the middle of a
kitchen remodel when exhaustion sunk in. Ella was one and I was enormous. This
house in the suburbs felt overwhelming. Drew and Lily were born in March of
2010, and shortly thereafter Ella broke her leg just to make sure we were
paying attention. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We were introduced to Cincinnati Children’s that year too.
The smell of the NICU isn’t something that ever leaves you. I’ll forever be
grateful that we hadn’t left Cincinnati after Ella was born, as Cincinnati was
exactly where we were supposed to be when Drew was diagnosed with Cystic
Fibrosis. I don’t remember a whole lot from 2010. Or 2011. In 2012, Jake came
along and we felt complete. And by complete, I mean completely overwhelmed. My
head was just far enough above water to breathe, and drink wine. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We had the great pleasure of worrying about how much our
preschool choice would influence our kids future, and regularly consider how
our parenting style will be described by them in therapy as adults. All jokes
aside, we landed at the perfect place for us. Immaculate Heart of Mary has
become our home. All four kids went through preschool, and some of them up to 3<sup>rd</sup>
grade, and the support and accommodations shown to us by both the staff and our
friends has been tremendous in the 8 years that we have been attending. Leaving
school is one of the hardest parts of our decisions to go. As our first graders
sang “God Bless the Open Road” to their 8<sup>th</sup> grade buddies this
morning I dissolved into a puddle. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“<span style="background: white; color: #222222;">I set out on a
narrow way many years ago</span><span style="color: #222222; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";"><br />
<span style="background: white;">Hoping I would find true love along the broken
road</span><br />
<span style="background: white;">But I got lost a time or two</span><br />
<span style="background: white;">Wiped my brow and kept pushing through<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="background: white; color: #222222;">I couldn’t see how
every sign pointed straight to you<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="background: white; color: #222222;">That every long lost
dream lead me to where you are<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="background: white; color: #222222;">Others who broke my
heart, they were like northern stars<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="background: white; color: #222222;">Pointing me on my
way into your loving arms<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="background: white; color: #222222;">This much I know is
true<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="background: white; color: #222222;">That God blessed the
broken road <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="background: white; color: #222222;">That led me straight
to you”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="background: white; color: #222222;">Oh Cincinnati, as
much as I never called you home, now that we are moving on I know that God
blessed the broken road that led me straight to you. Cue the tears.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="background: white; color: #222222;">Since moving to
Cincinnati, we bought our first (and second) house, we got married, we had 4
kids, one with a serious health diagnosis, and have made a billion memories and
friends. We’re still married and on the other side of the diagnosis and way more
home remodeling projects. People have seen us during our crazy (<i style="mso-bidi-font-style: normal;">I say that as though its past tense but it’s
very much still present</i>). I’m grateful for neighbors who alerted me to
naked wandering toddlers when I had too many to keep track of. I salute friends
who showed up with Starbucks and wine, sometimes at the same time, during our
darkest days. <span style="mso-spacerun: yes;"> </span>We’ve had so many visitors
– some who stayed for a while and some who just passed through – and every
single one of them has made a mark on our life. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="background: white; color: #222222;">I started my second
career here in health advocacy and activism, and I was introduced to a whole
new world. The opportunities afforded to me with my colleagues and mentors from
Cincinnati Childrens are innumerable. I got to see the world through an
entirely different lens and I wouldn’t change any of it. The flexibility of my
work has allowed me to share my vision for healthcare improvement with the
world while I volunteered as the leader of a girl scout troop or coached a
volleyball team in between business trips. Cincinnati pulled out my strength
and courage, and carved friends out of the woodwork when I needed them the
most. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="background: white; color: #222222;">I met my very best
friend here when our paths collided in Cincinnati nearly 11 years ago. She
moved from the west around the same time that I had moved from the east and we
both landed in this place that moved more slowly. Our shared confusion created comradery
that we’ve had to this day. She showed up at 5am to watch Ella when we went to
have the twins, and over time graciously adopted my family as her own. She is
the Godmother to our youngest and brings<s> junk</s> gifts with her every time
she shows up. She left first, about 3 years ago, moving for her husbands job, and
I cried and cried. She was the first to know that we made the decision to move
a couple of weeks ago, because I needed someone to psych me up before we told
the kids and she cheered me on. She’s been our family’s biggest cheerleader,
and I wouldn’t know her if it wasn’t for my time in Cincinnati. On this
rollercoaster of emotion that is selling a house and buying a house and
explaining to kids why we have to go, I was complaining that I was eating
nothing but junk and didn’t fit into my jeans anymore. She told me to lean in
to the fat. That’s true friendship.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="background: white; color: #222222;">I don’t know what
the best or hardest parts of living here have been, but there are lots of
memories. Marriage is exciting! Parenting requires wine. Having sick kids is
really freaking hard. Going to your friend’s kids funerals is even harder. But
is it “living here” that’s handed me these ups and downs or is this just life?
I think I’ve learned what it’s like to grow up, and that it’s not easy <i style="mso-bidi-font-style: normal;">and</i> it can be a ton of fun. I also don’t
know what it means to be “growing up” because it’s not really a thing or a
place but a process that leads us home. (<i style="mso-bidi-font-style: normal;">Does
she mean to heaven? I don’t know, let’s not get sappy.</i>)<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="background: white; color: #222222;">I have a friend who
either bails me out of every jam I’m in, or laughs with me when I forget to
wear shoes to preschool drop off and it’s a non-car line day. I’ve learned
where the best karaoke in Anderson Township is on a Tuesday night when a friend
pops in to ask if I want to go have a drink. I’m grateful for ATM’s that
dispense stamps and McDonald’s who don’t judge when I order milk alone because
it’s an easier option than dragging 4 kids into Kroger in the rain. Neighbors have
graciously tolerated us playing 90’s hip-hop in our backyard until 2am on an occasional
weekend night. I’ve learned of the generosity of my community that shows up
every time we need a Girl Scout cookie order or foodbank donation or fundraiser
for whatever cause I’ve recently gotten behind. I have friends who take my kids
at the drop of a hat when something comes up, and I’ve lost friends who were
scared away by this diagnosis that has brought more love and awareness to our
lives than I could have ever imagined. I’ve learned that I will never be good
at checking the red homework folder, especially not at the end of the school
year while trying to sell my house. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="background: white; color: #222222;">In a final quoting
of lyrics to describe this bittersweet feeling of our relocation, I was at an
event last week where a friend paid tribute to another friend that we had lost
too soon with the song “Home” by Philip Philips. It goes “Hold on to me as we
go, as we roll <span style="mso-spacerun: yes;"> </span>down this unfamiliar
road. And although this wave is stringing us along, just know you’re not alone,
cause I’m gonna make this place you’re home. Really hoping the “Settle down, it’ll
all be clear” part that comes next happens sooner rather than later, but
honestly, it just feels like what it’s time to do. Hershey is calling us now,
and it’s time to make that place our home. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
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<span style="background: white; color: #222222;">This could be a
letter to the patient man I call my husband whom my colleague respectably
refers to as a hero. Maybe this ends up as a blog post or someday I can use it
as a commencement speech when I’m a famous healthcare change agent! Or maybe
someone will be reading this as my obituary when I actually do not survive this
physical move or the days leading up to it. Either way, this is all to say
thanks, Cincinnati. You’ve given us more than we could have ever dreamed of.
Your kindness and generosity is more than we will ever be able to repay. We may
finally purchase something that says “Cincinnati”, or root for the Reds now
that we are on our way out. It’s not goodbye, it’s see you later. We’re going
home. </span><span style="mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
Erin Moorehttp://www.blogger.com/profile/08027766394549526193noreply@blogger.com0tag:blogger.com,1999:blog-2848916293298934342.post-38469268249726891172017-04-04T11:52:00.000-04:002017-04-04T11:58:13.538-04:00Where do you stand?<span style="background-color: white; color: #1d2129; font-family: "san francisco" , , , ".sfnstext-regular" , sans-serif; font-size: 14px; letter-spacing: -0.24px; white-space: pre-wrap;">Rather than using the Patient Registry data to recognize if your CF care center is above or below "average" on outcome measures like lung function, check out what's possible! Below is the data from 2015. These are the average lung function numbers at the Pediatric CF Care Centers across the US available on the CFF website. Why strive for "average" when you can see what's possible!</span><br />
<span style="background-color: white; color: #1d2129; font-family: "san francisco" , , , ".sfnstext-regular" , sans-serif; font-size: 14px; letter-spacing: -0.24px; white-space: pre-wrap;"><br /></span>
<span style="background-color: white; color: #1d2129; font-family: "san francisco" , , , ".sfnstext-regular" , sans-serif; font-size: 14px; letter-spacing: -0.24px; white-space: pre-wrap;">The range of average lung function from accredited CF Care Center to accredited CF care center spans from 105.8 to 76.8. Tri-Services Military Cystic Fibrosis Center has an average lung function of 105.8, while West Virginia University Charleston Division has an average lung function of 76.8. There are plenty of "guesses" as to why this variation exists, but it's time to learn and improve. We need to move past guessing and assumptions. I appreciate that socioeconomic differences exist. I appreciate that resources from center to center differ. The fact remains that until we focus effort on learning from one another and improving, outcomes in the CF community will not change. I'm not ok with with. Where do you stand?</span><br />
<span style="background-color: white; color: #1d2129; font-family: "san francisco" , , , ".sfnstext-regular" , sans-serif; font-size: 14px; letter-spacing: -0.24px; white-space: pre-wrap;"><br /></span>
<span style="background-color: white; color: #1d2129; font-family: "san francisco" , , , ".sfnstext-regular" , sans-serif; font-size: 14px; letter-spacing: -0.24px; white-space: pre-wrap;">This is what I'm talking about in my last post when I mention "variation". What if we could all learn from what the <i>best</i> centers are doing, the centers with the highest outcomes, to try to achieve things that aren't currently possible in other center with the current standard of care! It's time for us to become impatient, require this change, this learning, this opportunity to change the trajectory of our kids lives. </span><br />
<br />
Click on the upper righthand corner of this image below to search for your center to see where you stand. Then tell me where you'd like to go from here!<iframe height="480" src="https://drive.google.com/file/d/0B9zlwJHexMRPaWw1THBkM1hhTU0/preview" width="640"></iframe>Erin Moorehttp://www.blogger.com/profile/08027766394549526193noreply@blogger.com0tag:blogger.com,1999:blog-2848916293298934342.post-16138089383862285092017-04-04T10:08:00.000-04:002017-04-04T10:08:04.185-04:00I'm not okay with this (and you shouldn't be either!)I wish I could dedicate all of my time to writing because it's the best way for me to relax. In my head I carry 1,000 thoughts that I regularly wish to share, but in the craziness of everyday life I can't seem to find the time to sit down and write it out. I want to get better about scheduling time to do this.<br />
<br />
March was a crazy month for me. I've started to work with the FDA's Pediatric Advisory Committee in the Office of Pediatric Therapeutics. It's not a job job, just an advisory role that requires minimal time, but I did have to travel to DC for a meeting at the beginning of the month. It was a fascinating look into the decision making processes of the FDA to protect children and ensure safety of drugs and devices that go to market. I'm always eager to learn more about the complexities of this healthcare system.<br />
<br />
Following the FDA meeting, I was off to our second CF Learning Network Community Conference that was nothing short of remarkable. The dedication of the teams in this network to improving outcomes faster fills me with hope. Finally, something that I can do, something that I can be involved in that has a direct impact on improving health and care. I can't place a PICC line, or develop the next big drug to cure this disease. I can fundraise but i'm not good at it. But this is something I can do that has the potential to transform CF care and outcomes.<br />
<br />
Here's the thing that I don't think people understand: The efforts of the CF Foundation have been great, and I am grateful for advancements that we have made. But the truth remains:<br />
<br />
<ul>
<li><b>The CF mortality rate across the country has not improved over the last ten years. </b></li>
<li><b>The median survival in the US is 11 years less than median survival in Canada (at 50.9 years). </b></li>
<li><b>The rate of pulmonary exacerbations in the CF community has not changed since 2004.</b></li>
</ul>
<div>
Additionally, and we <i>all </i> know this, the variation in care and outcomes differs, not only between centers but between clinicians within the same center. I know dozens of people with CF who travel to X center because they can do <i>whatever</i> better than their primary center. Or patients who discuss online their preferences for one clinician over another to try to receive better care or achieve better health. And that's not okay by me. Let me repeat that: I AM NOT OKAY WITH THIS. We have to do better. We deserve better. Our care center data, the data used to make clinical decisions and set research priorities is two years old. We are operating with only a rearview mirror, and I'm trying to create a hypothetical dashboard so that we can look ahead and make decisions with confidence, understanding the value of our efforts. I need the rest of the CF community to recognize where we are and say with me that this is not okay, that we deserve better, and that we are committed to working together to achieve them. </div>
<div>
<br /></div>
<div>
I'm working, with 13 care centers and 30 other parents & patients to create a system that allows us to learn from every interaction so that we can reduce this unintended variation in care, get the right thing to the right person at the right time, every time, and improve care and outcomes. We are working to understand how care is provided at the best CF Centers, learning from their processes and adapting them more quickly to the needs of our center so that we can reduce the unintended variation in care and outcomes. We want to be able to seamlessly share how we are achieving the outcomes at our center so that others can learn from what we know. For example, who knows that the infection control protocol at our care center is unique to our center and has dramatically decreased the rates of infection at our center, which can leads to improvement in mortality rates and survival? I would bet that not even all of the patients at our center know this, but if they did, and if they shared that, everyone would be banging down the doors to their centers saying, 'Hey! Look at them! We want what they have! Lower infection rates, longer lives! Let us help you learn from what they did and learn together about the impact that these changes might have at <i>our</i> center!" What if I had the data to show the secret sauce for Achromobacter eradication (I don't). But what if I was able to collect my data and show the impact on my health and then contribute that data to an enhanced registry so that the next person to acquire that bastard achromobacter didn't have to go through the guessing process for how to treat it? This is what I'm talking about. And it's possible! I know because i'm doing it. This is what the CF Learning Network is and aims to do. Everyone deserves access to this information, but there isn’t a process in place for sharing it. That's what we are changing. The current lack of organization within and across CF care centers results in variations in care and outcomes, and a lot of time wasted trying to recreate the wheel. Raise your hand if your center is working on infection control? Or transition? Or adherence (<i>what does that even mean?!) </i> Now raise your hand if you're learning from or with another center who might be doing the same thing. Who knows what impact those efforts have? What exactly are you trying to change? What what are you using to determine whether those changes are an improvement? </div>
<div>
<br /></div>
<div>
Quality care and good health outcome shouldn’t be dependent upon where you receive care. In the CF Learning Network, we believe that everyone has something to teach and something to learn, and that by working together in this new way we can change the pace of improvement in the CF community so that everyone has the best chance of living their healthiest life with CF. </div>
<div>
<br /></div>
<div>
So we have this incredible Community Conference in March and are now gearing up to bring on 15 more CF centers because everyone is realizing the value of this learning model and that we cannot continue to sit by and watch things stay the same. Let me give you the example of the recent article about the life expectancy for people with CF in the US and Canada having a gap of 11 years. WHO IS OKAY WITH THIS?!?! Not me, in case that wasn't clear. Can we please get impatient? Every article written about that (like <a href="ttps://www.wsj.com/articles/cystic-fibrosis-patients-in-canada-live-a-decade-longer-than-u-s-patients-study-says-1489438800">this one</a> and <a href="https://www.nytimes.com/2017/03/20/upshot/why-cystic-fibrosis-patients-in-canada-outlive-those-in-the-us.html">this one</a> and yes, even <a href="https://www.cff.org/CF-Community-Blog/Posts/2017/Understanding-the-Differences-in-Survival-Between-Canadians-and-Americans-With-CF/">this one written by our very own CFF </a>) offer <b>guesses </b>for why this variation might exist. What I'm saying is that I'm tired of guessing, especially given that there is a way to stop the guessing and start the learning. We are in 2017. It has been 28 years since the CF gene was discovered. We collect a ton of data and our community includes a ton of smart, dedicated folks, clinicians and patients and parents, and we need to say that this is not acceptable anymore. We need to demand that we do better. We need to figure this out because our kids and our friends lives depend on it. We need to work together. </div>
<div>
<br /></div>
<div>
In another couple of weeks I should have some data from our network that I can share to show the impact of this new collaboration, of our Learning Network model, on its ability </div>
<div>
<br /></div>
<div>
This is getting lengthy so i'll wrap this up but want to try to keep writing, as "To survive you must tell stories", so says Umberto Eco. Here's the story I told following the community conference at the American Society of Clinical Pharmacology and Therapeutics about the role that patients and parents can and should play in drug development and healthcare improvement. It might sound familiar if you've been reading this blog for any amount of time, but here's what I had to say:</div>
<div>
<br /></div>
<blockquote class="tr_bq">
I was trying to think of a way to introduce myself and I thought that sharing a story would be the best way for you to get to know a little bit about me. It’s a story about my 7yo son who has cystic fibrosis. Cystic fibrosis, for those of you who dont know, is a genetic disease that primarily affects the lungs and digestive system, causing a thick sticky mucus to build up in the body which can lead to life threatening lung infections and impaired digestion. The Cystic Fibrosis Foundation recommends that people with CF be seen by their care team 4 times a year where they ask questions like ‘How’s everything going? What’s his cough been like? How is his appetite? Have you noticed any changes?” And my answers typically sound something like “Good!” and “Pretty normal” and “It was down a couple weeks ago but it seemed to improve.” It’s all subjective, and its mostly from memory. You see, i’m managing my son’s CF in the midst of parenting 3 other kids, working full time, and trying to maintain some semblance of a social life.<br /><br />As I reflected on these clinic visits, I thought about the value that could come from having a way to quantify the answers to the questions that the doctors were asking us. I went to Facebook and then to Google to see what things other people were using to track stuff about their health. I found an online platform that I could use, and I started to track things about my sons health. And to my surprise, trends began to emerge. I could do personal experiments, looking at changes in my data with the addition or subtraction of a medication or therapy. My care team didn’t seem all that interested in my data, but I found it to be a fascinating learning resource. I was sharing what I found with other patients and parents online, getting their input and feedback on what I was learning.<br /><br />Then around the beginning of March a few years ago, Drew developed a cough. It wasn’t like his normal cough, though I couldn’t put my finger on how it was different. The frequency wasn’t the same as it has been with other infections. The sound of the cough, something that I can’t quite yet quantify, was different – not totally wet and junky, not exactly tight. His appetite was down. I had talked to his doctor and we decided to try an oral antibiotic, a typical treatment for what they would call a Pulmonary Exacerbation. After a few days and little improvement, we decided that he needed to try IV antibiotics to see if we could kick this. It’s the standard next in line treatment option for an exacerbation. You’ll notice that throughout the course of Ivs his cough still didn’t return to baseline. I was working with my peer community online, and my care team, asking questions like “Did we choose the optimal combination of medications? Is there another treatment that might help better? Are we missing something?” We added a magnesium supplement about a week after we started the IVs, something that my online community of peers had suggested when his care team was left scratching their head, and then upon completion of the IVs tried a steroid to see if that would help. These were all guesses, some based on evidence and others based on anecdotes. All seemed to maybe help a little but weren’t bringing him back to his baseline. This mystery cough continues for over a month. Through all of this, both his doctor and I are monitoring his symptoms and brainstorming together, in agreement that we don’t know what’s going on. She suggests that we may need a hospitalization if these symptoms are going to continue so that he can be monitored more closely.</blockquote>
<blockquote class="tr_bq">
Desperate to not be admitted, I start digging into my data. What on earth had happened around the time that the cough had developed that may have caused this problem. The only change that I was able to note was that we had stopped Prevacid at the beginning of February, just a couple of weeks before this cough started. He had always been on Prevacid since birth, and we had decided with his care team to take him off of it to see if it was something that he needed or could do without. And when I asked the care team how we would know if it was working, they said that we would notice a change in his bowel movements if he needed it. He takes pancreatic enzymes to help his body digest food, and the Prevacid is a means to control the stomach acid, helping the enzymes pass through his stomach and make it to his pancreas to do their job. If we noticed a change in his bowel movements, then the enzymes weren’t doing their job in regulating fat absorption because they weren’t getting through the stomach intact. I wasn’t even considering how stomach acid might impact his cough. I shared my findings with his doctor and we agreed that restarting the Prevacid was not a bad idea to try.<br /><br />We restarted prevacid and within a week his cough had returned to baseline.<br /><br />This change in his care was the result of a suggestion that I had made, not the care team. And it was based on data that I had collected, data that to this day doesn’t exist in his electronic health record. And there was a cost to this! It was his health that suffered - days of school missed, infection control risks associated with PICC lines and hospital admissions, antibiotics that weren’t necessary for a kid whose threat of antibiotic resistance is a real issue. There were days of work missed for my husband and myself, and an impact on the rest of our family with the limited.<br /><br />My name is Erin Moore. I am the mother of 4 kids and work with Cincinnati Children’s in Quality Improvement related to the patient and family experience of care, and with Eli Lilly as an Patient Advisor. I’m what you might call an ePatient - equipped, enabled, empowered and engaged in my health or the health of someone i care for, I also consider myself a Citizen Scientist. Citizen science (also known as crowd science, crowd-sourced science, or networked science) is scientific research conducted, in whole or in part, by an amateur (or nonprofessional scientist. I do this out of necessity. It’s not possible for any one of my sons doctors to understand all that there is to know about CF, let alone his personal experience with it. I consider it my job to learn all that I can to offer a personalized approach to treating him and giving him the best chance at a good health outcome. I collaborate with my peers, clinicians and patients, to share what we know and change what we can, together. There’s additional benefits to citizen science. The massive collaborations that can occur through citizen science allow investigations at continental and global scales and across decades—leading to discovery that a single scientist could never achieve on their own. Have you ever tracked something about your health - logged steps via a fitbit, or documented the days you’ve had a headache or the pounds lost on a particular diet? Contributing what you know to the improvement of your own outcomes and the outcomes of others is citizen science, and you may already be involved!<br /><br />The question that I want to present today is though is what if the next person to have a problem similar to the one my son had could learn from our experience, seamlessly? What if there was a better way to learn together from every interaction, curating content from multiple sources, sharing the value that came from our individual interactions with it, building on it for the next person whose path it crosses?<br /><br />We're creating this in the work I do with Cincinnati Children’s hospital on the development of learning networks, groups of patients, clinicians and researchers working collaboratively to design and test solutions and tools that have the potential to improve care and outcomes in rare diseases. We all have something to share and we all have something to learn. There is a desperate need for us to shift in healthcare from doing things for patients to doing things with them. The experiences of our everyday lives, in caring for these sick kids, or medically complex partners, or aging parents, our experiences are our expertise and both can and should be valued as complementary to the expertise that health care providers share.<br /><br />My son has a multi-drug resistant bacteria growing in his lungs that has had us in and out of the hospital for years. The medical journals suggest that he will lose roughly 4% of his lung function every year. What I need is access to real-time, trusted, reliable information on everything from novel approaches to eradicate that bacteria, to reasons why having a certain pet could be detrimental to his health. I want to know what other parents know and have tried, and I want a doctor to weigh in on why those options may or may not be good for me. I want to hear about what tracking methods people use and how they connect with their doctor between visits, but even more, how its improving their care. I want other patients to feel empowered to ask about alternatives and suggest trying something new to their doctor, no matter how novel it may be. And then I want to work with the research team to develop the research agenda. I want the next person to ask these questions to intersect with the answers that I found, seamless. Access to information like this, to people, to life saving treatment options, should not be left to the chance of a desperate parent or patient stumbling upon it on Facebook. We really have an ethical and moral obligation to work together!<br /><br />Here we are in 2017, with a tremendous opportunity to utilize existing technologies to expedite the delivery of the right treatment to the right patient at the right time, every time - stuff that can be useful in clinical care and in clinical research - and yet we're not. There are seamless intersections between people and information in almost every other aspect of our lives – my Amazon Dash button allows me to order new laundry detergent while I’m standing next to my washing machine when I realize that we are running low. Coffee for my Keurig automatically shows up every month in the quantity that the internet has figured out that we drink on a monthly basis. Netflix can give me recommendations of shows that I may like, a starting point if you will, based on my previous viewing preferences. Yet it takes 5 phone calls and a trip to the pharmacy to pick up a MAIL ORDER prescription that we have taken every month since my sons birth and will likely take until the day he dies. We use fax machines to get pre-authorizations and share medical records, MY data, that I often have to pay to get access to, and when I receive that paper version it is often full of errors.<br /><br />You may recognize this screenshot from the movie Apollo 13 when the astronauts lives literally depended on fitting a square peg into a round hole . The NASA engineers dump everything to which the astronauts have access on the table, and are given the challenge of using what’s on the table to transform the round receptacle to fit the square filter. It’s an impossible task, but these people are solution-based thinkers and their friends’ lives are at stake. And they figured it out. They walked out victorious an hour later carrying a contraption that was once a non-existent solution. They used duct tape and cardboard and creativity and determination and never once said “we can’t do this.” They did it because they had to. And that’s exactly how the parents of children with rare disease are – innovating with cardboard and duct tape and creativity and determination and technology to save our kids lives, because if we don’t, no one will.*<br /><br />Sharing my experiences on my personal blog and at the medical centers where we receive care has opened the door to many new opportunities for me as an ePatient, like the one I have that brought me here. I work with the clinical innovation team at Eli Lilly as an ePatient advisor, blogging and helping to guide them through feedback, providing insights on how increased focus on patient centeredness and real world evidence is changing the healthcare ecosystem and how these trends may affect drug development, and keeping the patient voice front and center in clinical trial innovation.<br /><br />Patients and their families experience research and care in a way that you may never fully understand. Our expertise should be seen as complementary to the care teams and researchers, and I believe that the path to collaboration and ultimately improvement is a humble awareness of that shared humanity. There are days when I think about the fact that CF is a progressive and fatal disease that does not have a cure. Then I remember that life too is both progressive and fatal. I hope you’ll consider the value of including patients as partners, true patient integration, and the profound effect that it can have on improving health and changing outcomes.</blockquote>
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<span style="font-size: xx-small;">*This paragraph was adapted from mom-blogger Kelle Hampton </span><br />
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</style>Erin Moorehttp://www.blogger.com/profile/08027766394549526193noreply@blogger.com2tag:blogger.com,1999:blog-2848916293298934342.post-56930292308144843822017-01-01T13:47:00.001-05:002017-01-01T13:47:50.818-05:00The CF Learning NetworkThe Cystic Fibrosis Foundation has been a driving force behind research on therapeutics to increase longevity. It has a well-developed national Care Center Network, a transparent patient data registry, and long-standing quality improvement (QI) infrastructure. There are dozens of initiatives and thousands of people working tirelessly in the fight against this disease. Together, these assets have created a solid foundation on which to build a system to achieve transformative outcomes. <br /> <br />However, recent data suggest that progress has plateaued within the current CF care system:<br /><ul>
<li><b>The CF mortality rate declined from 2.1 per 100 in 1999 to 1.6 in 2004, but has not improved over the last ten years. </b></li>
<li><b>The predicted median survival rose steadily from 28.9 years in 1999 to 39.3 years in 2014. But median survival in the US is 11 years less than median survival in Canada (at 50.9 years).</b></li>
<li><b>The rate of pulmonary exacerbations has not changed since 2004. The number of days of treatment required for these exacerbations has increased slightly, with home IV treatment days declining and days in hospital more than making up for that decrease.</b></li>
<li><b>Despite the accomplishments and transparency of the CFF Patient Registry, data are reported at more than a year lag, and the existing technology has not kept pace with advances in registry technology, much of which has the potential for real-time .</b></li>
<li><b>Cost pressures continue to rise both for clinical care and therapeutics.</b></li>
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If you've followed the work I've been doing in any capacity over the past several years, you're likely familiar with the terms "C3N" or "CF Care Model of the Future". We've made it! We're there! We are now, officially, the <b><a href="https://twitter.com/TheCFLN">Cystic Fibrosis Learning Network</a></b> (supported through a grant from the Cystic Fibrosis Foundation and the <a href="https://www.cincinnatichildrens.org/service/j/anderson-center">James M. Anderson Center for Health Systems Excellence</a> at Cincinnati Children's Hospital). <div>
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We're not the first disease community to do this. The Crohn's & Colitis community became a learning network (<b>read this</b>: <a href="http://www.improvecarenow.org/purpose-success">ImproveCareNow</a>) in 2007. At the time, clinical research said something like the greatest potential for remission, an outcome measure in this disease community, was roughly 68% given the currently available medications. Once they organized themselves into a Learning Network, sharing across centers, creating a real-time data registry, involving patients and parents in the identification and creation of solutions and tools, they started to grow the number of patients in remission well beyond the amount suggested by clinical research. They now have more than 80% of their population in remission with no new medications, just simply by sharing seamlessly and stealing shamelessly what works best throughout their network; by thoughtfully testing out improvement initiatives using the Institute for Healthcare Improvements Plan - Do - Study - Act cycles; truly, by working together, learning from every interaction and spreading what works. </div>
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There's also the Learning Network for the Heart Community, the National Pediatric Cardiology Quality Improvement Collaborative (<a href="https://npcqic.org/">NPC-QIC</a>). For the past 7 years, a group of clinicians, researchers, and parents, from across 60 medical institutions have been collaborating to ensure that families of children, who receive a diagnosis of <a href="https://npcqic.org/about/hlhs">Hypoplastic Left Heart Syndrom (HLHS)</a>, and other univentricular hearts, have hope. Together, NPC-QIC and <a href="http://www.sistersbyheart.org/">Sisters by Heart</a>, a parent partner organization, have harnessed the power of quality improvement tools and methods to improve the health outcomes for these patients, promote transparency of outcomes data, and enhance communication between clinicians and parents. To date, patients have a 95% chance of surviving the interstage period, 77% of whom have satisfactory growth during the interstage period. Read their one pager, its fascinating - <a href="https://npcqic.org/sites/default/files/NPCQIC_1Pager_2016_11_15.pdf">https://npcqic.org/sites/default/files/NPCQIC_1Pager_2016_11_15.pdf</a></div>
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There are more than just these two Learning Networks doing fascinating work. In fact, t<a href="https://www.cincinnatichildrens.org/service/j/anderson-center/learning-networks/active-emerging">here are 5 well-established learning networks and 6 emerging learning networks</a>, one of which is the CF Learning Network. </div>
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Thirteen CF Programs were recruited for the first wave of the CF Learning Network in July of 2016 and each team includes <i>at least </i>one parent or person with CF on their team to collaborate on this work. Additionally, we have a team of Community Innovators, parents and people with CF who are organizing their improvement ideas and using QI methodology to grow the number of community members who are equipped and enabled with the skills they need to create and sustain strong care partnerships. We expect approximately 15 more teams will be joining the our network for the second phase of our pilot in the summer of 2017. In short, we are a group of patients, parents, clinicians and researchers working collaboratively to reduce the unintended variation in CF Care and ultimately improve outcomes by identifying and testing solutions and tools that have the potential to improve health and care in the CF Community, learning from every interaction and sharing what we've learned. Want to know if your center is participating? Ask them! Want to be a part of this? Join us! Email me (erin.moore@cchmc.org) and I'll send you the information for our monthly calls. Your center does not have to be participating for you to join us. This is about the community coming together, bringing everyone's good ideas and thinking about the impact that they have on the outcomes that are most important to the community, collectively. </div>
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Our aim is to achieve outcomes that are not possible through the current system of CF Care. We're working to take the guess-work out of CF Care. We expect that, by December 2018, the pilot of our CF Learning Network will have demonstrated progress toward improving outcomes and established an infrastructure for ongoing collaborative learning so that your health outcomes aren't dependent on your zip code or what your doctor happens to know. <br /><br />During the design phase we worked with all stakeholders in the CF Community to dream up the perfect system for CF care and then thought about what we would need to change in order to achieve that - What are we trying to change? How will we know that a change is an improvement? What changes do we need to make to see those improvements?</div>
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Check out this vision - what if we could create a system for CF care that achieved this, simply by working together smarter, in the Learning Health System Model. This gives me so much hope!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6P-2xaQWU5pnsfT81ABXzaNPHOLJyZwV6NUV0eIip4Ath723irX6YZSfQYIChgViWKy4OuWyWY9ttV1-NC7EcfCIdbqW-I1bWlRE3klBiNWTBFWrUwX-b7gHvBo-6wnryHD5kKsDH-Zsr/s1600/Picture1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6P-2xaQWU5pnsfT81ABXzaNPHOLJyZwV6NUV0eIip4Ath723irX6YZSfQYIChgViWKy4OuWyWY9ttV1-NC7EcfCIdbqW-I1bWlRE3klBiNWTBFWrUwX-b7gHvBo-6wnryHD5kKsDH-Zsr/s640/Picture1.jpg" width="568" /></a></div>
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The CF Learning Network serves as an engine for innovation that designs, tests, pilots and implements innovative ideas that have the potential to change outcomes. Together this community is working to create an immensely different health system that improves health and quality of life for people living with cystic fibrosis.</div>
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This isn't a dream anymore! It's really happening, and I can't wait to show the world what we can do!<div>
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Erin Moorehttp://www.blogger.com/profile/08027766394549526193noreply@blogger.com0tag:blogger.com,1999:blog-2848916293298934342.post-55451468719501511192016-11-30T11:14:00.000-05:002016-11-30T11:14:16.617-05:00I'd love to...It's been a while since I've found the time to write a blog post. I'm writing for Eli Lilly now, and you can check out some of those posts here ---> <a href="https://lillypad.lilly.com/?auth=76">https://lillypad.lilly.com/?auth=76</a> I find a lot of the content I'm sharing over there to be stuff that I would also share on here, so no sense in duplicating!<br />
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We decorated for Christmas the day after Thanksgiving, marking the start of my most favorite holiday and time of the year. Christmas music is being piped throughout the house (and car and headphones) and reflections of the past year have inevitably begun. We had a tough go for the second half of this year, and we're sort of still in it. If you recall, Drew lost a significant amount of his lung function over the summer before we identified the culprit - a fungal infection. We treated him with anti-fungal medication and he thankfully improved until there was a second unexpected drop near the start of the school year. He had gotten back up to 91, and then in September dropped back down to 78. We had discussions about what might be causing it and what we should do to treat him, and decided to temporarily stay the course on the anti-fungal medication until he reaches and maintains a baseline on it, giving us confidence that it is both working and that the infection is under control. You may recall (or maybe not) that he had a fungal infection last year around this time. We started the anti-fungals for 3mo and he improved, so we stopped the treatment, and then by June he had lost 30% of his lung function, maybe not so mysteriously after all. I suggested that perhaps we hadn't had the infection under control as we had originally thought and, like fungus does, it slowly crept back wreaking silent havoc. I want to make sure that we are confident that things are under control this time before we change course, as a newer <a href="https://cysticfibrosisnewstoday.com/2016/10/03/treating-aspergillus-fungus-infection-in-cystic-fibrosis-harmful-study-reports">article</a> suggests that fungus can become quite resistant if treated, if the medications used to treat it aren't used properly. The options seem to be, per this article anyway, treat the fungus and increase its adaptive skills, or not treat it and allow the pathogen to settle in the lungs. Not treating wasn't an option for us because of the impact that it was having on his lung function.<br />
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It's complicated, this disease. We seem to have the bacterial load in his lungs under control. Most research shows that bacterial exacerbations are a leading cause of lung function decline and lung damage in CF. But once we finally got the achromobacter under control with years of treatment on inhaled antibiotics and steroids, we seem to have traded it for a fungal infection. Did we cause the fungal infection? Perhaps we did, there's not really a good way to say. Is it better to have a bacterial infection or a fungal infection? I would probably argue that a fungal infection is *better* given that these is little research that shows the impact of a fungal infection on the progression of disease. I do not know if there is evidence to support the contrary, or just lack of research on this altogether. Either way, I'm interested to learn more and hope that the CFF will continue to study this.<br />
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He's got a cold now, coughing in his sleep and when he's running around and playing. We've added extra treatments which has him crankier than ever, but it's necessary. We've been going in to clinic for PFT's every two weeks and his numbers are remaining pretty consistent - 78, 81, 82 - but I'm not so sure how things will look with this new cold, perhaps something he picked up when we were in clinic for one of those appointments. Despite their best infection control practices - recently even declaring that the spread of infection among patients in our clinic had come to a halt with new infection control practices, which is great news - going into the hospital remains one of the most dangerous places for Drew to be. There are lots of sick people coming here for care, and even though we wear a mask and don't touch anything, he always seems to catch something when we have to come here. We should be able to use home spirometers to monitor our lung function. We should be able to track our weight from home, and other symptoms, and communicate what we learn with our care team, eliminating the need for unnecessary visits, saving everyone time and money, and perhaps even improving health. Machine learning can enable this, and should. While our center was using the Orchestra platform (which is no longer), we did start to see a longitudinal view of patients health shared with the care team. We did improve inter-visit communication, and intervention at more appropriate times rather than just when we happened to have a visit scheduled. It didn't reduce the number of times that we *needed* to come into clinic but it could have. I highlight the word *needed* as this is an evidence based medicine metric, a guideline put forth by the CFF for all patients, and embraced by all clinicians, regardless of whether its the right thing for the patient. The care teams aren't interested in reducing clinic visits below the required 4x a year. Or maybe they are interested but just can't becasue the CFF uses this as an accreditiation metric, requiring them to do this or find a way to improve rather than working to understand, from patients, why they aren't coming in 4x/yr and how we might work together to optimize care and outcomes according to the patient priorities. Hopefully our learning network will fix this. I digress.<br />
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I hope he's well for the holidays. I got this crazy idea to take my family to NYC to see some cousins the week before Christmas. What crazy person wouldn't want to drive 24hrs over 3 days to spend a night in a matchbox sized hotel room to see family and New York City at Christmastime?! I'm sure traffic will be delightful. At least we can stream Christmas music in the car!<br />
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I hope he feels well enough to open gifts with excitement and delight on Christmas morning, and that we don't have to pull him away from new toys to do extra treatments. I'd love to, for just one day, forget all of the medical stuff. I'd love to wake up and not have a schedule. I'd love to go out to dinner and not worry about hand sanitizer and enzymes. I'd love for him to run around outside, maybe in the snow, and not come back inside having a coughing fit, and rather than breathing treatments, have hot chocolate while all of the clothes defrost into a puddle in my foyer.<br />
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I've declined antibiotics for him since September because I don't think he needs them. Maybe I'm wrong, but I'm trusting my gut this time. We will go there if we need to, but for right now, we will do our treatment and take our medicine and listen to our Christmas music and enjoy this holiday as much as we can.Erin Moorehttp://www.blogger.com/profile/08027766394549526193noreply@blogger.com0tag:blogger.com,1999:blog-2848916293298934342.post-71100374774254226022016-11-13T22:44:00.000-05:002016-11-13T22:44:28.561-05:00Creating Space for Innovation in the Government<span style="color: #1d2129; font-family: Helvetica, Arial, sans-serif; font-size: 14px;"><iframe allowtransparency="true" frameborder="0" height="477" scrolling="no" src="https://www.facebook.com/plugins/video.php?href=https%3A%2F%2Fwww.facebook.com%2Fstanford%2Fvideos%2F10154454471778418%2F&show_text=1&width=560" style="border: none; overflow: hidden;" width="560"></iframe></span><br />
<span style="color: #1d2129; font-family: Helvetica, Arial, sans-serif;"><span style="font-size: 14px;"><br /></span></span>Erin Moorehttp://www.blogger.com/profile/08027766394549526193noreply@blogger.com0tag:blogger.com,1999:blog-2848916293298934342.post-41907553956696569632016-11-08T11:44:00.000-05:002016-11-08T11:44:07.670-05:00Collaboration and Culture Change: The Valuable Role of Storytelling in Health Care Improvement<div style="text-align: center;">
<i><b>This post originally appeared on <a href="https://lillypad.lilly.com/entry.php?e=10181">LillyPad</a>, a blog for Eli Lilly Pharmaceuticals, where I write as an ePatient Advisor</b></i></div>
<br /><i>Editors Note: Over the next few weeks we will spend some time listening to the stories of some ePatients who have been collaborating together on ways to show the value and importance of patients as partners, collaboration for improvement, and connection & learning through “the network” for healthcare improvement. It’s important that these stories be told beyond our Google Hangouts or private Facebook groups or dinner tables and pushed more deeply into prominent places in our society because you can’t have culture change without collaboration and you can’t collaborate on what you don’t know about.</i><br /><br />There’s this weird feeling that happens after I return from a health conference. I’m so full of new ideas, having spent several days away focused only on the things I’m working on, being around only people who share my passions in this space. I get to put aside breathing treatments and medication ordering and insurance fighting as I listen to amazing presenters share about the phenomenal work they’re doing, trying to translate what they’re doing to what I do, always considering ways that we might be able to help one another. I eat lunch with unlikely partners and I’m fascinated by the wealth of knowledge they bring, wondering how on earth I got so lucky to have the opportunity to learn from them. Sometimes I’m the one presenting, proud of my work, anxious to share with others the ways that I believe what I do can also help them and their communities. Then there is dinner where we pack up “work” for a while and build relationships, getting to know one another on a more personal level – our interests, passions, families and friends. There’s a buzz that fills your soul and lifts your spirit.<br /><br />Through these conversations, we realize a shared humanity and how our lives really are the fuel for the work that we do. When I hop on the plane to leave these meetings, I’m so full of energy and renewed hope. Then just like that, I am back to the rat race – preschool drop off, signing school folders, sporting events, field trips, breathing treatments and appointments and medications and worry. There’s a buzz at home too, but a very different buzz. I’m so grateful to be home to the hugs and the very important stories about who sat next to whom on the bus, trying to squeeze in dinner between homework and basketball practice, turning on a movie so that I can find five minutes of quiet to order the medication that we will run out of in three days. But no one here understands. Here, people are doing their jobs and living their lives. They didn’t get to experience what I just experienced, what changes me just a little bit every time it happens. And I realize that without this buzz at home I wouldn’t have the other.<br /><br />There’s absolutely no question that I would trade everything to take cystic fibrosis (CF) away from my son and our family. There are days when I wish more than anything that I could go back to being “just a mom,” scheduling playdates and going on nature walks, not having to sit at home waiting to sign for this month’s medication delivery or change our plans due to an unplanned illness. Yes, CF is a horrible disease that just takes and takes. I cannot change the disease, but we can control how we respond to it.<br /><br />CF has expanded my friend circle and my world view. I have such a deep appreciation for the experiences of others, and I often learn the most from the people I don’t agree with. This is what it means to be an advocate - loving so much that your heart could burst, and then channeling that love and balancing it against the fear of loss. There isn’t a right or wrong way to be an advocate, but it’s something that those of us in the trenches are uniquely qualified for. Everyone can stand up and tell their story in an empowering way, but sometimes diagnosis or disease progression pushes us closer to this. As we work in health care improvement as patient advocates, there’s a focus on data. But data, while it can persuade people, doesn’t always inspire them to act. To quote an amazing article on the power of storytelling, “To do that, you need to wrap your vision in a story that fires the imagination and stirs the soul.” This, I believe to be true.<br /><br />I’m honored to be able to share my story with the world, one that challenges the paradigm for how you can work with patients and caregivers. Our lived experiences with research can help to grow our collective understanding of the benefits and challenges of participation – what is it that each of us want, and how can we collaborate to achieve that. Together, we can make the shift from reactive to proactive care. Together, we find answers and change outcomes.<br /><br />The new musical Hamilton is a powerful story that celebrates our founding fathers, who launched a new era of government. I’d like to honor some of the “founding fathers” of a new era of patient partnership in health care. They have helped to create the foundation upon which this great community is being built. It is through our stories weaving the thread between us all that we will continue to learn and grow. Over the next few weeks, you will hear from advocates in both the diabetes and cancer communities sharing their stories related to the idea of patients as partners, collaboration for improvement, and connection and learning through “the network.” So, in the words of Lin-Manuel Miranda as Alexander Hamilton, “Let’s raise a glass to the four of us, tomorrow there’ll be more of us, telling the story of tonight.” We hope you enjoy our stories.Erin Moorehttp://www.blogger.com/profile/08027766394549526193noreply@blogger.com0tag:blogger.com,1999:blog-2848916293298934342.post-89096059380813264182016-10-10T20:14:00.002-04:002016-10-11T10:59:34.393-04:00A Letter to the CF Learning Network We all have the unique opportunity to see the world from a different vantage point. I, as the mother of a child with CF, first saw this community as one of fundraisers, patients and families with an endless hope for a cure, working tirelessly to make connections and fund research to cure this disease. The more I got to know these folks, I started to see teachers and fathers and technologists and marketers and musicians and policymakers. I got to know the care team that was helping me to care for my son, and I realized that they were also soccer moms and artists and advocates, quality improvement specialists who weren’t just caring for my son, but caring for my community. I got more involved and started to see through my work and social networks how many different groups were working on similar things – parent & patient groups, the CF Foundation, pharmaceutical companies, the government – yet all unaware of the work of the others, and I started to think about how we might help those people and that information to intersect so that more people could learn together and time could be saved.<br />
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And then I would get discouraged or frustrated – there are so many moving parts! How could I get the care center in City A to do what the care center in City B was doing that seemed to be addressing the specific issue they were having? How could I make sure that my son was getting the best, most personalized care for him, not just the best care that his care team knew about? How could I share access to all that I’ve learned so that others could benefit from it as well? I shouldn’t have to stumble upon information on Facebook at the right time to find benefit. <br />
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Sometimes we don’t know what we don’t know, but I think it’s safe to assume in 2016 that if you don’t know the answer to something, you can quickly figure out how to find it.<br />
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I see information being shared every moment of every day – doctors like Raouf sharing the success of implementation of the chronic care model and the work that he has done as the head of our pulmonary department to achieve this success; people like Emily Kramer Golingkoff starting her own research foundation with an urgency for progress because the trajectory of the science isn’t fast enough to save her life; folks like LaCrecia who understand the realities of CF centers of all shapes and sizes and the need for a standardized yet personalized approach to improvement after having served as a coach for many years. Everyone has something unique to offer, something complimentary to what the rest of us each bring. People like Jim Murphy with compassion and empathy that partner with families to understand their unique needs and work tirelessly to minimize the impact of the disease on our lives. Adrienne likes to read, cook, crochet, hike and travel the world in addition to the clinical expertise and experience she brings. Bruce’s leadership role enables him to help different groups both within and beyond the foundation to mingle for improvement and change. Breck is a fundraiser, a storyteller and an advocate, not only sharing what she knows but always eager to learn and connect. And folks like Tracey and Sophia and Sarah help us to stay on track, organizing our work and helping to create a roadmap out of the many pins we drop. Michael says yes. He encourages us to try new things, taking risks, and leads by doing. I bring and insatiable curiosity, a connection to a strong network of like-minded folks desperate for change, and a never-ending hope that people like Drew can be well, retaining the autonomy to make decisions in their life according to their own priorities, not according to cystic fibrosis.<br />
People make connections in a network all the time. It’s not something we are advocating for. It is something that happens. I could go on and on about the strengths that we all have, but I suspect that as we part ways and reflect on the time we spent together we will all be well aware of the value of the contribution that each of us is making to this work.<br />
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There is a great TED Talk by a woman named Angela Blanchard that talks about how we, as a society, as people wanting to help, are trained to look at the problems - the lacks, gaps, needs, wants - the broken stuff, and how we can’t build on broken. She suggests that perhaps instead of looking at all that people don't have, we should start to look at what they do. I think this has a lot of relevance for this learning health system model we are moving toward. I can give you the example of an ENT appointment a few months ago. When we sat down in the office the nurse said, "So we have Andrew here, a 5yr old male with a history of cystic fibrosis, tracheomalacia, pancreatic insufficiency, more bronchoscopy's than I can count, chronic sinusitis, a bowel resection, ileostomy, and airway abnormalities. His medication list is about 4 pages long but I've gotta go through it so here we go." I interrupted her to say, "There’s a lot right with him, too." She chuckled and we moved on.<br />
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What if Angela Blanchard is exactly right and we can't build on broken. What if the answer lies in our ability as a team - patient and provider and researcher and foundation - to share what we have, and build what we can to find what we need. What if we can't see the solution by just looking at the problem? It is about partnership, but a different kind. A partnership focused on what we each have rather than what we each need.<br />
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The TED talk goes on to say “We've all been in situations, as humans, raw and painful and excruciating moments, and it's hard in those moments to think about asking people what they have, talking about their strengths, what they're good at.” But much like so many of us in this room feel compelled to help, in fact were trained to help, the patients/caregivers, we want to contribute too. All of our stories matter. We want to tell you what we can do and what we do know as that's the first step on my path to a new story. This gives us all hope, meaning, a sense of belonging. Think about how we might be able to shift away from the post-traumatic stress of diagnosis or disease progression and toward post traumatic resilience, something that science has proven comes when one feels they are making a meaningful contribution. Think about how that might translate to successful transitions, adherence, sustainability, success. We all have the capacity to imagine a future different from the life we live. The job of those who want to help , those of us in this room today, is to stand together. <br />
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I believe that success of our work will be dependent upon this enhanced appreciation of what we each have. I encourage you to listen to one another, like really listen, especially when you don’t agree or you hear something unexpected, for its these moments that we can most learn from. Its something I’ve been working on and its paid off big time.<br />
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My wish for the CF Community is that we can work together to figure out how to pull our strengths together to create something better than any of us can create alone, laying the tracks for the greater CF community to see the potential in themselves and contribute to create change.<br />
We’ve had an incredibly impressive group of folks in this room for the past two days, from White House Champions of Change to esteemed scholars, members of PCORI and the Institute for Healthcare Improvement and people with CF and parents who find the time to step away from the demands of this disease to help. And that’s just whose in this room. When you think about the CF Community more broadly and consider all that they have and all that they do, there is no doubt that we will succeed in our work. Thanks for being here and for the unique gifts that you bring. Let’s do this!!!<br />
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<br />Erin Moorehttp://www.blogger.com/profile/08027766394549526193noreply@blogger.com0tag:blogger.com,1999:blog-2848916293298934342.post-73374422827333538502016-09-25T14:37:00.001-04:002016-09-25T14:37:38.988-04:00Let's talk about evidence"We don't seek the painful experiences that hue our identity, but we seek our identity in the wake of painful experiences."<br />
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I don't know where this quote came from, only that I find so much truth in it. If whoever wrote it happens to read this, raise your hand so I can learn more from you.<br />
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Cystic Fibrosis sucks so bad. You can't usually see it, yet it forces you to act - restraining your kid for necessary blood work to make sure the medication we're taking to save his lungs isn't killing his liver. Childhood playtime after school is stolen from us as we sit for hours doing breathing treatments and airway clearance instead of going to the park without an agenda. A hug allows me to literally feel a mucus plug trapped deep in his airways, something I can loosen with a few aggressive beats on his chest and I do it without warning as he would deny my offer to help because of the pain it causes him while simultaneously offering some relief. And I sit on an airplane on my way to my second conference in two weeks, having received great news in the 4 days I was home, and yet I cry because I know that the relief I feel is temporary. Hopefully optimistic but not naive. Despite our best efforts this disease will progress. I can sit by the pool at my favorite hotel in Palo Alto so incredibly grateful for these people I've met because of this disease, and cry as I walk back to my room moments later cursing the world and wishing it all away in a trade for normalcy. I don't know normalcy though, I suppose. This is our normal. It's breathtaking to see the world in this way, a gift not many people get. And I love it and hate it equal parts.<br />
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Drew's lung function tanked this summer. We saw his doctors many times, and I used my personal network to crowd source ideas for what might be wrong. Early on, there were suggestions by my peers that a fungal infection might be the culprit. With no symptoms except for a rapidly declining FEV1, we spent countless hours troubleshooting - trying everything in our "evidence-based" bag of tricks. There's not significant evidence to suggest that fungus causes lung function decline in people with CF. Or I guess I should say that there's not peer-reviewed published scientific evidence. The "evidence" that I have, the experiences of the people living with cystic fibrosis who have lived through our same uncertain hell, is often discounted. And I get it, really. I am pro evidence-based medicine. I just can't help but think about the value of the individual human experience we are missing.<br />
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Despite there being no physical symptoms of exacerbation - data that I have based on our prior experiences, things that are in fact documented in his EHR - we opted for treating this like an exacerbation because we didn't know what else to do. The "we" I speak of is us and his care team. The first step was an oral antibiotic. Drew has never responded to oral antibiotics. I was skeptical of this plan but ultimately on board. After 10 days, there was actually increased decline. He has found benefit from steroids in the past due to the wonky nature of his airways, but I can identify with accuracy the situations that will be improved with steroids and this wasn't one of them. We tried anyway. The downside was outrageous mood swings. While medically induced, I still expect certain behaviors from my kids, and its absolutely heartbreaking to watch your 6yo, who feels like he's going to jump out of his skin and not understand why, sob in his bedroom for hours because, medication or not, hitting other people is not ok. The steroid may have slowed the decline, but his lung function continued to drop.<br />
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When we have to make the hard decisions about whether or not to try IV antibiotics, more frustration and disappointment came out of fear, from all of us, that yet another treatment, another procedure would render the same results and we would be left with even fewer options. It's so hard to balance these decisions. His health is a priority, but so is his life, and living means so much more than being alive. Can I take away the joy of the pool or the promised vacation with the hope that this could put us back on track? How could I convince him that this is the right thing to do when all of the preventative medicine he takes, the stuff we tell him we must do for hours every day to keep him healthy has left him so very sick. What the fuck kind of sick logic does this disease demand?<br />
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We opt for a combination of IV medications that we hope would target the bacteria that we <i>suspect might </i>be causing the problem, weighing dosing schedules against our ability to administer them from home because there's no way we are admitting him to the hospital when he looks and feels fine. We trade sleep for this decision and our whole world pays for it. Work commitments change and home routines suffer as patience wears thin. Tired and terrified while pretending to be neither is a bad combination. And yet we continue, a constant barrage of choices in our faces, very serious ones with real consequences.<br />
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They told us when he had his PICC placed that we might want to have a conversation with our team about a port given the increasing difficulty with placement of a central line due to the fact that he's had 9 in his 6 years of life and scar tissue is getting in the way. With some ativan to take the edge off, we both cried as they stuck him, then stuck him again. His fear has scars showing the distance he's come. I have fear too, but all of my scars are on the inside. I'm a little tougher to break, and each time we do this feels a little more routine, a little more scary.<br />
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The IV meds didn't help either. With our lung function creeping closer and closer to 70%, we re-group for another team meeting. I want to know all of the options. We decide on a bronchoscopy, something that will allow them to get a reasonable sample of what might be in his lungs and enable us to target our therapy. Why didn't we start here? Everything comes with its own risks, and the care team was hopeful that we could address the problem more easily. I trust them and agreed with their plan. I also asked about the risks of treating with an anti-fungal medication. After all, we just followed the script for oral and IV antibiotics and also a steroid, each with its own risks, especially given that they seemed to be the wrong choice as they showed no clinical benefit and the risks of antibiotic resistance in this population is enormous. There is not evidence to support a fungal infection causing a decline in lung function, or "published, peer-reviewed, scientific evidence" anyway. There is a surplus of anecdotal experiential evidence.<br />
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With a family vacation just a day away, we go to the hospital for this outpatient procedure. I do my best distraction song and dance while they give him sleepy air. My husband and I don't even go to these together anymore because we've been through them so many times, and life and work don't pause for this disease. I anxiously wait to be called back to see the doctor in what I can only describe to be the purgatory that is the same day surgery waiting room. Her words have so much power to change my life and I'm terrified. But all looks good! His lungs look as good on the inside as they sounds on the outside and we are left wondering. We have to wait 5 long days to see what grows on the culture, to see what explanation we might get from another piece of data. I've convinced that I lose about a day of my life in this unavoidable worry that comes from this unavoidable waiting.<br />
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By now, his doctor has given me a prescription for the anti-fungal medication I've been asking for. I promised not to use it until after the bronch, We agree that we have nothing to lose by starting it while we go on our vacation and wait for our results. When the results do come back and show that he has a fungal infection, we exchange emails with his care team about their lack of optimism that the anti-fungal will have an impact given the type of fungus he has, a more common household name I'm told, but without other options it seems to be the last resort and we go forward.<br />
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After 4 weeks on the treatment, we wake up early, get our treatments done before the sun comes up, and head into the office for an assessment. I have a preference for the 7:30am Monday morning appointment as I believe it lowers the cross-infection risk, something that no evidence exists for. It gives me some resolve to have this time slot and I'm grateful to the team that recognizes that and works to accommodate me. He's up to 84! It seems to be working! He's re-gained more 10pts of that lost lung functions and we are elated! We decide to stay the course and after another 4 weeks he is up to 91. I express my joy to his care team who is equally delighted, admitting their early skepticism about this being the cause of the problem and acknowledging the treatment as the reason for our success. I certainly didn't set out to prove anyone wrong, only to make him well, but it's nice to hear that they are learning along with me.<br />
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This is a happy story, but it's not the end of the story. We will have treatment decisions to make again next month - stay the course? Make a change? What changes will happen that will be out of our control? Will the next culture show a bug that's completely resistant? Is there anything I can do to prevent that? To protect him?<br />
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The past two courses of IV antibiotics that Drew has had have not been needed. We treated a bad case of acid reflux and a fungal infection with hard core antibiotics. We followed the guidelines and used decision trees and made the decisions that we felt we had to make, and we were wrong. Drew has been on inhaled antibiotics - 2 different medications alternated in 15 day cycles, inhaled 3x a day, everyday for the past 3 years. In those 3 years he has not had a bacterial infection in his lungs, an "exacerbation". In 3 years he has not gotten sick. He's been on IV and oral antibiotics that he hasn't needed, and been sedated countless times. He has been admitted for central line infections for central lines he hasn't needed, all because we followed the rules. I don't think we made a mistake, we did what we knew how to do. But now that we know better we need to do better. I wholeheartedly believe there has to be a better way. We might talk about the risks of exploring medications or procedures that lack "evidence", but I also want to talk about the risks of evidence based medications and treatments that we use when we don't need them. How might we get the right thing to the right person at the right time, every time? How might we improve the mental health of our patients and caregivers who are rightfully distraught over the lack of answers to what should be straightforward questions? Why is there still so much uncertainty in medicine? What responsibility should we put on people to advocate for themselves, tracking their own outcomes and then sharing them with the rest of the healthcare system to enable personalization of treatments, and then machine learning to aggregate all of these N of 1's, improving population health through the spread of personalized solutions.<br />
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Some new opportunities have recently come my way to improve things within the healthcare system. My goals remain the same - right person, right solution, right time, every time. I think success is more than just improved outcomes just as living is more than just being alive. Success for me is influence. When more people believe that this is possible, when they challenge the status quo and try out of the box solutions, that feels like success. I know I'm making a difference. We are farther in this culture change than we were 5 years ago when I realized my purpose in all of this. As I fly to another healthcare conference, my second in two weeks - a conference where patients and caregivers are being introduced to the world as a symbol of action and influence, a conference where our participation is being fully financially supported - I know that my role is to honestly and vulnerably share these stories and ideas for change. I've figured out how to fold the worst narrative of my life into triumph, and that for me is how I measure success.<br />
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<br />Erin Moorehttp://www.blogger.com/profile/08027766394549526193noreply@blogger.com2tag:blogger.com,1999:blog-2848916293298934342.post-29876364183901156272016-09-08T20:51:00.001-04:002016-09-08T20:51:31.900-04:00Patients Included. But are we respected? <div class="im" style="background-color: white; color: #222222;">
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<span style="font-family: Arial; font-size: xx-small;"><span style="line-height: 17.25px; white-space: pre-wrap;"><b><i>This post originally appeared on my blog in October of 2013. </i></b></span></span></div>
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<span style="background-color: transparent; font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;"><i>"Any man or institution that tries to rob me of my dignity will lose because I will not part with it at any price or under any pressure." - Nelson Mandela, Long Walk to Freedom</i></span></div>
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<span style="background-color: transparent; font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;">A few weeks ago, I was asked to be a part of a Cystic Fibrosis work group at a hospital on the east coast under a grant from the Patient Centered Outcomes Research institute, or PCORI. A colleague had recommended me for the position, knowing my passion for collaborative efforts in improving outcomes and the value of the patient voice in research. Below is an excerpt from the email that I received:</span></div>
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<span style="background-color: transparent; font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;">PCORI was founded under the ACA to fund comparative effectiveness research that improves the information available to patients in a meaningful way. Specifically, PCORI has two goals: further engage patients in research design, and reduce the gap between research results and patient knowledge. The CDRN opportunity grants institutions money to develop a large multi-million patient data warehouse for researchers (from around the country) to conduct research - both prospectively and retrospectively. PCORI will fund seven of these networks around the country to form one national network. If awarded the grant, our team would like to offer you a role as a Cystic Fibrosis Community Workgroup member.</span></div>
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<span style="background-color: transparent; font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;">My interest peaked, I wrote back and a day later had an interview and was submitting my biosketch and a letter of support. I made them aware of the other work I'm currently involved with to ensure there would be no conflict of interest, and expressed the need to weigh the time commitment and opportunity for compensation with these other projects. Then, as if to define how they value my knowledge, experience, and expertise, I received this reply: </span></div>
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<span style="background-color: transparent; font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;">While this particular position will likely be unpaid, this is an incredible opportunity to directly influence the research efforts around CF and will provide you with access to cutting edge researchers in our city.</span></div>
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<span style="background-color: transparent; font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;">Is my time and participation not valuable enough to compensate? </span></div>
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<span style="background-color: transparent; font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;">Later that week, I packed my bags and headed to MedicineX in Stanford, California, a conference that positions itself as a catalyst for new ideas about the future of medicine and emerging technologies. At this conference, there were patients and clinicians, caregivers and technologists, entrepreneurs and researchers and others from the industry. It’s difficult to explain the experience of being at a conference so full of energy, excitement and hope for better care of rare diseases and chronic conditions, better interactions with the healthcare system, and how the only way to improve is collaboration and teamwork, valuing and trusting one another, in every single possible way. </span></div>
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<span style="background-color: transparent; font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;">During the first day of this conference, PCORI -- the organization offering the grant mentioned above -- was presenting a panel on the importance of involving patients in research. I wondered about the offer I had received: Was it the institution that could not offer to compensate me for my time? Or PCORI that isn't accommodating patients who participate in the research by appropriately and fairly compensating them? Or maybe just not all patients? Some view the amount that I work to improve health and care in Cystic Fibrosis as remarkable. I view it as necessary. If I had endless capacity, I would do it all. But remember, I have a seriously and chronically ill child that I am caring for, in addition to 3 others, and a husband, and a couple of fish. Unlike many researchers, I don’t have an institution or grants paying me a full time salary to participate in such research.</span></div>
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<span style="background-color: transparent; font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;">My reaction: Don't take advantage of the knowledge and experience that I have that you want and need to create a system that works for me. Appreciate me, and embrace me just as you would any other member of your team, and just watch how far we can go together. </span></div>
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<span style="background-color: transparent; font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;">A huge barrier to true patient-centered care is the failure to see patients as equals to the other contributors in this system. Let's not forget than in medicine, the patient is the only one who is expert in her experience. Should the hospital that offered me the position in their workgroup receive the grant from PCORI at the end of the year, I will participate and my participation will not be in vain. I said yes, regardless of compensation status, because I know and appreciate the value of this project. I have a unique perspective to bring that I believe will add value to this research and benefit others in the community. I said yes, because so many other people who have expertise and passion and value to add don't have the time or the voice or the energy to do it. I believe that our story, in the end, will be one of success. But to quote an incredible patient and advocate that I had the great pleasure to meet in person this weekend, "Not every medicine story can have a happy ending. It's not the ending that makes it a success." </span></div>
<br style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;" /><span style="background-color: white; color: #222222; font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;"></span><span style="background-color: white; color: #222222; font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;">How much farther and faster could this patient-centered research go if it weren't so hard to be a part of it?</span>Erin Moorehttp://www.blogger.com/profile/08027766394549526193noreply@blogger.com1tag:blogger.com,1999:blog-2848916293298934342.post-69954878126537763502016-08-06T23:32:00.001-04:002016-08-06T23:41:19.299-04:00Research is Hope<div style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 12.8px; text-decoration: -webkit-letterpress;">
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<i>“Hope” is the thing with feathers - </i></div>
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<i>That perches in the soul - </i></div>
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<i>And sings the tune without the words - </i></div>
<i style="color: #051016; font-family: georgia; font-size: 16px; text-indent: -1em;">And never stops - at all"</i><br />
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<span style="color: #454545; font-size: 12.8px;">I am vulnerable. I have a child who is sick, like really sick. I go to the doctor with the desperate hope that someone - anyone - will be able to help me to keep him well, to save him. And in that vulnerability, I am asked to do things I often don't fully understand. </span></div>
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<span style="font-size: 12.8px;">I had to give my baby to strangers when he was two days old, signing papers to waive liability if something happened to him when he was under the care of someone I had never even met. This is the story of most chronic illness caregivers.</span><span style="font-size: 12.8px;"> As time goes on, our</span><span style="font-size: 12.8px;"> comfort level grows, relationships build with our </span><span style="font-size: 12.8px;">doctors and </span><span style="font-size: 12.8px;">care teams. But with chronic illness, or CF, anyway, in our case, t</span><span style="font-size: 12.8px;">here is always something new, always something scary, always something we don't understand. Then researchers come in - knocking on the door after a long 3 hr appointment, or while we are in the surgery holding area waiting to go back and wondering how the results of whatever we're having done will forever change our </span><span style="font-size: 12.8px;">reality, yet holding it together for our </span><span style="font-size: 12.8px;">kid who is equally scared - trying to explain what the researcher whose interested in a sample of our tissue or some of our thoughts (neither of which we're giving with a clear mind) is trying to do, what they're hoping to learn. But in that instant it sounds promising so we go with it, signing their paper since the risks seem low, collecting our gift card for participation, or just their thanks, in many cases, and the promise of learning or better connection with our </span><span style="font-size: 12.8px;">care team, whatever it is that their trying to do. Hope is really what their offering us, and we sign up. </span></div>
<div style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 12.8px; text-decoration: -webkit-letterpress;">
<span style="color: #454545; font-size: 12.8px;"><br /></span></div>
<div style="-webkit-text-size-adjust: auto; color: #454545; font-family: UICTFontTextStyleBody; font-size: 12.8px; text-decoration: -webkit-letterpress;">
<span style="font-size: 12.8px;">Sometimes there's further interaction, but many times not. </span><span style="font-size: 12.8px;">Then months later, long after we've </span><span style="color: black; font-size: 12.8px;">signed their papers, something hits us </span><span style="color: black; font-size: 12.8px;">and we </span><span style="color: black; font-size: 12.8px;">remember that time we </span><span style="color: black; font-size: 12.8px;">signed up for that thing, and a bit of us </span><span style="color: black; font-size: 12.8px;">wonders what ever came of it. And, if </span><span style="color: black; font-size: 12.8px;">we</span><span style="color: black; font-size: 12.8px;"> search just a little bit, </span><span style="color: black; font-size: 12.8px;">we</span><span style="color: black; font-size: 12.8px;"> find out that the study didn't recruit, or that it didn't meet the appropriate end points, or that the institution supporting it didn't see the value in it and it's done. Those researchers move on to their next theory to test and </span><span style="color: black; font-size: 12.8px;">our</span><span style="color: black; font-size: 12.8px;"> contribution has been tossed aside. Or maybe it went on and that researcher learned many great things that they wrote about and got credit for and published their findings in some fancy journal that </span><span style="color: black; font-size: 12.8px;">we</span><span style="color: black; font-size: 12.8px;"> don't have access to because, after all, </span><span style="color: black; font-size: 12.8px;">we're </span><span style="color: black; font-size: 12.8px;">just the patient. Forget about what the patient thought, what they learned, that brief glimmer of hope. </span></div>
<div style="-webkit-text-size-adjust: auto; color: #454545; font-family: UICTFontTextStyleBody; font-size: 12.8px; text-decoration: -webkit-letterpress;">
<div>
<br /></div>
<div>
It feels abusive, really, to approach the sick and offer them hope - to take something from them, physical or otherwise, something that's so sacred - and then to just end it because it didn't meet your goals. When do my goals matter?</div>
<div>
<br /></div>
<div>
Why are we <span style="color: black;">allowed to just throw that all away? Why is that ok? Shouldn't there be, if nothing else, a moral or ethical obligation to say</span><span style="color: black;">, "</span><span style="color: black;">I'm sorry, I tried.</span><span style="color: black;">"</span><span style="color: black;"> Shouldn't we be giving patients the opportunity to take what's been learned from the work they contributed to - the work that couldn't have been done without them - and start from a new baseline of learning? Why aren't we sharing what we are learning in research, successful or failed, in a way that allows folks to build upon it? This is among the greatest failures of modern medicine. </span></div>
<div>
<br /></div>
<div>
<span style="color: black;">I want to ask researchers what they're actually trying to do. If </span><span style="color: black;">the answer isn't </span><span style="color: black;">that you are trying to</span><span style="color: black;">, wholeheartedly, help patients, then please stop wasting our time. </span></div>
<div>
<span style="color: black; font-size: 12.8px;"><br /></span></div>
<div>
<span style="color: black; font-size: 12.8px;">A research project I had been a part of recently shut down and I'm so...I guess sad is the right word. I wasn't a participant, but rather a member of the study team so I can't help but feel a bit of responsibility. My frustrations are for those families who joined this project, sharing with us their precious time, the intimate details of their health and lives. People who were given hope only to be shown another dead end, and for no good reason. My participation and contributions felt uncomfortable at times. It was frustrating to have my ideas and suggestions for a more patient-centric approach limited by both institutional research regulations, and the discomfort or fear or I'm not exactly sure what of trying to do something different than it had ever been done previously. I should have pushed harder. </span></div>
<div>
<span style="color: black; font-size: 12.8px;"><br /></span></div>
<div>
<span style="color: black;">Helping patients means doing things differently than they're being done right now. </span><span style="color: black; font-size: 12.8px;">I do believe researchers are trying to learn, to help us</span><span style="color: black; font-size: 12.8px;">. B</span><span style="color: black; font-size: 12.8px;">ut to be honest, it's moving at a devastatingly slow pace and it's too often letting us down. </span></div>
<div style="color: black;">
<span style="color: #454545;"><br /></span></div>
<div style="color: black;">
<span style="color: #454545;">Give me back what you've taken from me and encourage me to share it, to build upon it, to figure out what else we can learn together. My participation in research and the view I have of the participation of my peers has left me feeling exposed and uncomfortable, not wanting to say yes to future engagement. </span><span style="color: #454545; font-size: 12.8px;">This is a problem that we need to fix! This is how we will really start to learn and grow and change and improve. Stop picking on the weaker man. </span></div>
</div>
Erin Moorehttp://www.blogger.com/profile/08027766394549526193noreply@blogger.com0tag:blogger.com,1999:blog-2848916293298934342.post-81733189229408786172016-08-06T23:32:00.000-04:002016-08-06T23:40:26.980-04:00Research is Hope<div style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 12.8px; text-decoration: -webkit-letterpress;">
<div style="-webkit-text-size-adjust: 100%; box-sizing: border-box; color: #051016; font-family: Georgia; font-size: 16px; padding-left: 1em; text-indent: -1em;">
<i>“Hope” is the thing with feathers - </i></div>
<div style="-webkit-text-size-adjust: 100%; box-sizing: border-box; color: #051016; font-family: Georgia; font-size: 16px; padding-left: 1em; text-indent: -1em;">
<i>That perches in the soul - </i></div>
<div style="-webkit-text-size-adjust: 100%; box-sizing: border-box; color: #051016; font-family: Georgia; font-size: 16px; padding-left: 1em; text-indent: -1em;">
<i>And sings the tune without the words - </i></div>
<i><span style="color: #454545; font-size: 12.8px;"></span></i><br />
<div style="-webkit-text-size-adjust: 100%; box-sizing: border-box; color: #051016; font-family: Georgia; font-size: 16px; padding-left: 1em; text-indent: -1em;">
<i>And never stops - at all"</i></div>
<div style="text-align: center;">
<br /></div>
<span style="color: #454545; font-size: 12.8px;">I am vulnerable. I have a child who is sick, like really sick. I go to the doctor with the desperate hope that someone - anyone - will be able to help me to keep him well, to save him. And in that vulnerability, I am asked to do things I often don't fully understand. </span></div>
<div style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 12.8px; text-decoration: -webkit-letterpress;">
<span style="color: #454545; font-size: 12.8px;"><br /></span></div>
<div style="-webkit-text-size-adjust: auto; color: #454545; font-family: UICTFontTextStyleBody; font-size: 12.8px; text-decoration: -webkit-letterpress;">
<span style="font-size: 12.8px;">I had to give my baby to strangers when he was two days old, signing papers to waive liability if something happened to him when he was under the care of someone I had never even met. This is the story of most chronic illness caregivers.</span><span style="font-size: 12.8px;"> As time goes on, our</span><span style="font-size: 12.8px;"> comfort level grows, relationships build with our </span><span style="font-size: 12.8px;">doctors and </span><span style="font-size: 12.8px;">care teams. But with chronic illness, or CF, anyway, in our case, t</span><span style="font-size: 12.8px;">here is always something new, always something scary, always something we don't understand. Then researchers come in - knocking on the door after a long 3 hr appointment, or while we are in the surgery holding area waiting to go back and wondering how the results of whatever we're having done will forever change our </span><span style="font-size: 12.8px;">reality, yet holding it together for our </span><span style="font-size: 12.8px;">kid who is equally scared - trying to explain what the researcher whose interested in a sample of our tissue or some of our thoughts (neither of which we're giving with a clear mind) is trying to do, what they're hoping to learn. But in that instant it sounds promising so we go with it, signing their paper since the risks seem low, collecting our gift card for participation, or just their thanks, in many cases, and the promise of learning or better connection with our </span><span style="font-size: 12.8px;">care team, whatever it is that their trying to do. Hope is really what their offering us, and we sign up. </span></div>
<div style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 12.8px; text-decoration: -webkit-letterpress;">
<span style="color: #454545; font-size: 12.8px;"><br /></span></div>
<div style="-webkit-text-size-adjust: auto; color: #454545; font-family: UICTFontTextStyleBody; font-size: 12.8px; text-decoration: -webkit-letterpress;">
<span style="font-size: 12.8px;">Sometimes there's further interaction, but many times not. </span><span style="font-size: 12.8px;">Then months later, long after we've </span><span style="color: black; font-size: 12.8px;">signed their papers, something hits us </span><span style="color: black; font-size: 12.8px;">and we </span><span style="color: black; font-size: 12.8px;">remember that time we </span><span style="color: black; font-size: 12.8px;">signed up for that thing, and a bit of us </span><span style="color: black; font-size: 12.8px;">wonders what ever came of it. And, if </span><span style="color: black; font-size: 12.8px;">we</span><span style="color: black; font-size: 12.8px;"> search just a little bit, </span><span style="color: black; font-size: 12.8px;">we</span><span style="color: black; font-size: 12.8px;"> find out that the study didn't recruit, or that it didn't meet the appropriate end points, or that the institution supporting it didn't see the value in it and it's done. Those researchers move on to their next theory to test and </span><span style="color: black; font-size: 12.8px;">our</span><span style="color: black; font-size: 12.8px;"> contribution has been tossed aside. Or maybe it went on and that researcher learned many great things that they wrote about and got credit for and published their findings in some fancy journal that </span><span style="color: black; font-size: 12.8px;">we</span><span style="color: black; font-size: 12.8px;"> don't have access to because, after all, </span><span style="color: black; font-size: 12.8px;">we're </span><span style="color: black; font-size: 12.8px;">just the patient. Forget about what the patient thought, what they learned, that brief glimmer of hope. </span></div>
<div style="-webkit-text-size-adjust: auto; color: #454545; font-family: UICTFontTextStyleBody; font-size: 12.8px; text-decoration: -webkit-letterpress;">
<div>
<br /></div>
<div>
It feels abusive, really, to approach the sick and offer them hope - to take something from them, physical or otherwise, something that's so sacred - and then to just end it because it didn't meet your goals. When do my goals matter?</div>
<div>
<br /></div>
<div>
Why are we <span style="color: black;">allowed to just throw that all away? Why is that ok? Shouldn't there be, if nothing else, a moral or ethical obligation to say</span><span style="color: black;">, "</span><span style="color: black;">I'm sorry, I tried.</span><span style="color: black;">"</span><span style="color: black;"> Shouldn't we be giving patients the opportunity to take what's been learned from the work they contributed to - the work that couldn't have been done without them - and start from a new baseline of learning? Why aren't we sharing what we are learning in research, successful or failed, in a way that allows folks to build upon it? This is among the greatest failures of modern medicine. </span></div>
<div>
<br /></div>
<div>
<span style="color: black;">I want to ask researchers what they're actually trying to do. If </span><span style="color: black;">the answer isn't </span><span style="color: black;">that you are trying to</span><span style="color: black;">, wholeheartedly, help patients, then please stop wasting our time. </span></div>
<div>
<span style="color: black; font-size: 12.8px;"><br /></span></div>
<div>
<span style="color: black; font-size: 12.8px;">A research project I had been a part of recently shut down and I'm so...I guess sad is the right word. I wasn't a participant, but rather a member of the study team so I can't help but feel a bit of responsibility. My frustrations are for those families who joined this project, sharing with us their precious time, the intimate details of their health and lives. People who were given hope only to be shown another dead end, and for no good reason. My participation and contributions felt uncomfortable at times. It was frustrating to have my ideas and suggestions for a more patient-centric approach limited by both institutional research regulations, and the discomfort or fear or I'm not exactly sure what of trying to do something different than it had ever been done previously. I should have pushed harder. </span></div>
<div>
<span style="color: black; font-size: 12.8px;"><br /></span></div>
<div>
<span style="color: black;">Helping patients means doing things differently than they're being done right now. </span><span style="color: black; font-size: 12.8px;">I do believe researchers are trying to learn, to help us</span><span style="color: black; font-size: 12.8px;">. B</span><span style="color: black; font-size: 12.8px;">ut to be honest, it's moving at a devastatingly slow pace and it's too often letting us down. </span></div>
<div style="color: black;">
<span style="color: #454545;"><br /></span></div>
<div style="color: black;">
<span style="color: #454545;">Give me back what you've taken from me and encourage me to share it, to build upon it, to figure out what else we can learn together. My participation in research and the view I have of the participation of my peers has left me feeling exposed and uncomfortable, not wanting to say yes to future engagement. </span><span style="color: #454545; font-size: 12.8px;">This is a problem that we need to fix! This is how we will really start to learn and grow and change and improve. Stop picking on the weaker man. </span></div>
</div>
Erin Moorehttp://www.blogger.com/profile/08027766394549526193noreply@blogger.com0tag:blogger.com,1999:blog-2848916293298934342.post-52940376621375119852016-07-29T15:57:00.002-04:002016-07-29T16:00:39.194-04:00Vacation FTW!<span style="color: #454545; font-family: "uictfonttextstylebody"; font-size: 17px;">This vacation.... You guys, this vacation was the most vacation-y vacation I think I've ever been on. Yes, the kids were there, and yes it was hotter than just about anywhere we've ever been, but the "wake up when you want" and the "walk to the beach in 5" and the "getting in the pool a moment after someone's says 'Hey does anyone wanna go in the pool'"....and it being 85ish in there when you jump in. And I haven't even mentioned the shrimp and grits yet, or the oysters and fried chicken. A day at the spa and having someone rub my feet for an hour. RUB MY FEET FOR AN HOUR!! We're doing puzzles and playing euchre, coloring and crafting and moving at a pace that everyone should try. Clear minds here. There's not a schedule. If you wanna go sightseeing you just do it. And if you wanna go out for breakfast you just go. There's no "we need to get home for..." and there's no answering emails or solving problems because there aren't any problems. I'm reading a book instead of a Facebook feed and checking for the best spot to set up on the beach more than I'm checking email. This is freaking vacation, and I needed this from the bottom of those rubbed feet to the tip of my soul. I'm tan! Like not tan mom tan, but I've definitely been whiter, so this counts. This is cornier than I get, but the refreshment that this week away is bringing to our family after a month of problem solving and worrying and making excuses and trying and hoping - the kind of stress that exacerbates back pain and turns a typically happy family into a tired and confused family - the relief of this vacation has alleviated all of that. We didn't just pack up that worry and stick it on our doorstep to wait for our return, we let it go. We got our answers before we left and we decided to forget about life for a while. There's still treatments and medicines down here, but there's comfort in knowing that his lungs are ok. He's doing ok and we're doing ok. Actually we are doing freaking awesome. Charleston for the win!</span><br />
<div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
<br />
<div>
That dropping FEV1 is just a number - as he proclaimed with frustration over the weeks of medications and appointments and attempts to get that number to stop dropping and start improving prior to our departure for this magical vacation - and when we got the results from the bronch and found no bacteria - not even the achromobacter that we've been treating for the past few years - we moved to the other side of worry. As predicted, fungus seems to be the culprit, and an oral anti-fungal medication for the next few months will hopefully help to shift that dial back toward a higher number, but he is well. When we return we will talk to our doctors and make a plan and keep on swimming. For now, I'm putting in a vote for more vacation.</div>
</div>
Erin Moorehttp://www.blogger.com/profile/08027766394549526193noreply@blogger.com0tag:blogger.com,1999:blog-2848916293298934342.post-70338068909825624202016-07-28T15:31:00.003-04:002016-07-28T15:34:18.577-04:00Your vote counts This post is an ask for your vote for me, as President of the....wait, wrong topic.<br />
<br />
I'm darn proud of the work that I do and I'm even prouder to share that I've been nominated for it as a leader in the Health Activist category by Health 2.0 Conference, the leading showcase of cutting edge innovation that's transforming health and healthcare. I'm listed among many of great ePatient leaders that I'm also proud to call my friends and know that whoever is chosen to represent the collective ePatient voice will do us proud. I'd also feel quite proud if I was chosen as that leader. Voting ends this Sunday, so if you have a moment to spare, your vote for me, Erin Moore, under the Patient Activist category, would be most appreciated.<br />
<a href="https://www.blogger.com/goog_1395717935"><br /></a>
<a href="https://www.surveymonkey.com/r/globalretro">Vote Here!</a>Erin Moorehttp://www.blogger.com/profile/08027766394549526193noreply@blogger.com0tag:blogger.com,1999:blog-2848916293298934342.post-39266411002376988052016-07-20T12:33:00.000-04:002016-07-20T12:33:36.999-04:0074I figured out <a href="http://66roses.blogspot.com/2016/07/crazytown.html">what happened with the Ativan</a> that we were trying to get for Drew's PICC placement last week. His doctor had tried to place the order for it through EPIC for me to pick up at the local pharmacy but because its a controlled substance, you need to physically pick up the prescription from the doctors office and hand the paper to the pharmacist in order to have it filled. Keep in mind that I was getting .25ml, a quarter of a milliliter of Ativan, to help a kid relax. When I had her paged from the pharmacy at the hospital, after searching high and low for the prescription she told me she had called in, to send a new prescription down while she was in the middle of a clinic, she didn't have the option to send, but only to print. Even within the hospital, she couldn't send an order for .25ml of Ativan to the pharmacy for me to pick up to give to him. You may wonder why they didn't just have her order it and have someone from the hospital administer the medication while he was in the OR for the PICC? Well, there isn't a doctor or nurse whose care hes under unless he's admitted to the hospital. So for an outpatient procedure like a PICC placement, the only way we can swing it is for me to get the medicine and take responsibility for him when I give it to him. If only the different parts that make this whole work would talk to one another before making arbitrary rules. This system is so f'd up. I digress.<br />
<br />
As I've blogged about before, we've survived a week on IVs. That means dosing at 7am, 8am, 3pm and 11pm - cleaning hands, putting on gloves, cleaning trays, scrubbing the PICC, counting supplies, hooking up the medication, letting it run for an hour, cleaning the PICC again and then tucking it away until the next dose. Add to that mix phone calls from the pharmacy and nurses about levels of medication in his bloodwork, schedules for deliver of new medication and supplies, nurse visits to change the dressing on the PICC and draw labs, and the other interruptions of everyday life. I shouldn't complain about being tired because he sits through all of this and takes it like a champ. There is no swimming, no running around, no sweating. We play games or watch movies, but its a whole lot of inactivity and boredom for a 6yr old.<br />
<br />
The hardest part this time around is trying to convince him to take one more medicine, to do one more treatment, interrupting his play to sit through one more dose of IVs when he's feeling absolutely fine. We try to explain that we are doing this to try to get his lungs healthy, to try to get that number back up, and he cries and tells us its not gonna work, mostly because all we've done so far hasn't worked. Maybe he can feel that nothing is changing, or maybe he's just frustrated like us. Either way, its hard to get him to do this all when he doesn't feel like anything is wrong.<br />
<br />
What's most disappointing here, and alarming, is that his numbers continue to drop. His normal lung function is in the mid 90's. In the middle of June it was down to 87. Then we tried an oral antibiotic and rechecked and it had gone down to 79. We tried a week on a steroid and it went down to 78. The we went in for the kill with the IV's and after a week, I'm sad to report that he's now down to 74. He's down 20 points in 4 weeks and that's not cool. Just for reference, typically around 30% lung function is when people are discussing the options for transplant.<br />
<br />
It's so hard in CF to determine the cause of the problem, like a constant crap shoot. I usually know the symptoms that merit an intervention, whether its a steroid or some IV's, and he hasn't shown signs of needing either of these things this time. We know his lungs are colonized with a drug resistant bacteria called Achromombacter but that doesn't seem to be whats currently causing the problem, otherwise the many different stabs we've taken at this problem would have likely caused the decline to stop, and hopefully turn the other direction. I've had a suspicion from the start that there could be a fungus causing this problem. The last time he had a bronchoscopy, he cultured a lot of fungus in his lungs. People with CF get fungus in their lungs sometimes, and we got it. Was it because he's always on an inhaled antibiotic that he needs to treat symptoms? Did it come from the inhaled steroids he's been on to help him go longer stretches with good health? Is it just something in the environment that he caught because that's how unfortunate having CF can sometimes be? We have no idea. We treated it with 3 months of an anti-fungal medication called fluconazole and it seemed to help his ever so slight increase in cough go away. The thing was that there were no symptoms that alerted us to the fact that he had this problem in his lungs. Last year he wasn't yet doing pulmonary function tests to tell his how his lungs were functioning because he was too young. But could this again be the culprit? Could the fungus we treated have not really actually gone away and now be causing this rapid decline in his lung function? It's our next best guess but there's only one way to find out - time for another bronchscopy.<br />
<br />
When Drew learns to cough out the mucus his body produces, we will be able to take a sample of that to the lab to get tested to see specifically what type of bacteria and fungus grows in his airways and more specifically target therapies to help him. Until he is able to do that, he has this procedure done called a bronchoscopy where they put him to sleep, and they squirt saline liquid into his lungs to "wash" them and then suck out the water and test it to see what kind of bacteria or fungus they've found. We can't do this when he's on IV medication or an anti-fungal or the medication will skew the results of the test. So effective today, we stopped all antibiotics and will take him in for a bronchoscopy on Friday afternoon to see if we can figure out what else could be in his lungs that we are missing, and then hopefully figure out how to treat it.<br />
<br />
I spent two hours with his doctor yesterday talking through all the options and symptoms and possible outcomes, and I requested that we start him on this anti-fungal drug and think about the bronch when we return from vacation, something we are scheduled to leave for this coming Saturday. She didn't want to start him on something for fear that when we return and do the bronch it wouldn't give us a true picture of what's really going on because of the medication in his system. She also didn't want to wait much longer to try to get to the bottom of this because losing lung function this quickly just isn't good. She also put him back on the steroid with the hope that we can knock out some of the inflammation before the bronch to try to get a really good wash of his lungs, stating that there was little risk [except to his life as me or one of the other kids might strangle the devil child he becomes when he's on a steroid] associated to trying the steroid for another short period of time.<br />
<br />
In the meantime, Drew is acting perfectly fine. You would have no idea that anything was going on with him, as he's skipping around here just happy as can be, a little annoyed and sad that he's gotta do so many treatments and take so many pills right now, but otherwise with his normally cheerful and passive attitude about life. I'm hopeful that we will figure this out and be able to regain much of the lost lung function with the right treatment. While we won't have results on Friday since it takes time for a culture to grow, we will have a different treatment option to try and will have answers (hopefully) the following week. Regardless of whether they are good or bad, at least we should have a better idea of what we are dealing with. Thanks for all the thoughts and prayers. While we can't answer everyone individually, know that we appreciate the support and well wishes and will try to keep you posted as we know more!<br />
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
This video was taken 15min before I wrote this post - as you can see he seems to be feeling just fine!</div>
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<br />Erin Moorehttp://www.blogger.com/profile/08027766394549526193noreply@blogger.com1tag:blogger.com,1999:blog-2848916293298934342.post-38557701724150984982016-07-12T11:57:00.000-04:002016-07-12T11:57:44.574-04:00CrazytownI'm hoping that this brain dump will alleviate my headache. God its been a long couple of days. We went back to Children's yesterday for a PFT to check Drew's lung function post-steroid and to determine if he would need IV antibiotics. I knew that the steroids weren't working, but held out hope that we wouldn't need IV's. He blew a 77 this time, down again. We went from 92 in March, to 85 in early June, to 79 two weeks ago and we're now down to 77. The mystery of it all is that he remains symptom-less. I've been wracking my brain trying to figure out what could possibly be wrong since this is completely uncharacteristic of an "exacerbation" for Drew. I have an exacerbation score sheet for godsake and it's telling me that he is not having an exacerbation, despite lung function that continues to drop lower and lower. All of this thought and wonder and worry culminated in the parking lot of Home Depot on Sunday where I sat crying because I couldn't find a paint color for my living room. My cure for grief is action, and so despite being mentally and physically exhausted, I decided that we needed to paint the house. So we did. (I finally found the right paint color and we got that all taken care of on Sunday, in case you were wondering).<br />
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We had talked to Drew's doctor over the weekend about our plan for if his numbers were still low, and had scheduled an appointment to have a PICC placed at 10am on Monday, something that we could easily cancel if his numbers were miraculously up. They weren't, and so at 7:45 on Monday morning we knew our plan. We had discussed what medications we would use, the dosing schedule, the plan for the PICC placement - no sedation, just a small dose of Ativan to keep him calm (next time i'm asking for a dose for me too) - and we were set. A wonderful friend who is going to make a wonderful doctor someday soon met us at the hospital to keep us company and better understand the patient and family experience of care through this process. I was so grateful to have her with us when the first hiccup of the day happened.<br />
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Drew was scheduled for his PICC at 10am, and I was to pick up his dose of Ativan at the hospital pharmacy that morning. When we arrived at 7:30, I realized that that pharmacy didn't open until 9am, no problem. After we got the results of the PFT and knew that the PICC was a go, we went down to radiology to register for the PICC procedure and were quickly ushered back to an isolation waiting room, something I request the moment we step foot into the hospital. For me, there is always a fear of a[nother] hospital acquired drug resistant infection, so I take extra steps to ensure his safety and my comfort with it. The issue I have with these so-called "isolation rooms" is that there is no indication of when it's been cleaned. I don't know who was in it before me, whether it's been cleaned, if it will be cleaned when I leave it, or anything at all about its cleanliness. I do not trust blindly, especially when it comes to Drew and germs. Can't we put a sign on the door to indicate that the room is clean? Anyway, we got called right up to interventional radiology so they could use an ultrasound machine to identify a good place in his arm to put the PICC and then mark it and add numbing cream. The nurse then took us back to the isolation room - the one we had been in, the one that I had closed the door to before we went upstairs for a moment but when we returned the door had been opened, the one I had no indication of having remained ours and no one elses while we were gone for 20 minutes - to wait for the pharmacy to open so we could get his dose of Ativan before starting the procedure. She told me to have the receptionist page her when we got the medication and were ready, as it looked likely that they could take us early.<br />
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So at 9am, I left my friend with Drew in the isolation room to run over to the pharmacy to pick up the medication, only they didn't have it. Did I screw up? Was I supposed to have gotten it from CVS on my way in? I had her call CVS to see if they had it and could transfer the prescription, but they didn't have it either. His doctor had emailed me yesterday to say she had called it in, and I was able to pick of the other anti-nausea medicine, but the Ativan was nowhere to be found. I called up to clinic and had the receptionist page the nurse who was covering for our nurse who is on vacation. She told me she would page Drew's doctor, who is in clinic seeing patients, to have her call down a new prescription as soon as possible. At 9:40, forty minutes after having arrived in the pharmacy to pick up this order and delaying the process of getting a PICC, something that was suggested by my husband that perhaps I try without the Ativan so as to not delay the placement of the PICC any longer, the pharmacy got the order and gave me the med. I was livid. I was livid not because of the mix up, though I don't know what happened to the first order, but because I was already exhausted - mentally and emotionally, trying to prepare myself and Drew and our family for what life will be like for the next two weeks with running IVs from home, with no swimming, with no sweating, with lots of interruptions from pharmacies and home care nurses and extra appointments and a rigid schedule of medication infusions - and now I had to become the detective and problem solver of a problem that I had no part in creating. Sure, I could have walked away and we could have done the PICC without the Ativan, but to help him, if even just a little, relax and feel a tiny bit more at ease about the whole process was worth the work. The longer it took to get the medicine, the more my stress levels rose. He was waiting, nervously, without me in a room with a friend of mine he only kind of knows while I asked and waited and tried to decide which direction to go. Thankfully I stayed and got the medicine, because the PICC placement didn't go as planned - 6 sticks, two blown PICCs and finally a successful placement later and we were all set. Without the Ativan, this would have been suffering. Avoidable, minimizable suffering that has a lasting impact on a kid who already has more to deal with than most adults will in their lifetime. I will always request Ativan, not because he needs it, but because he deserves it.<br />
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Following the PICC placement procedure, we went back up to clinic to meet with the homecare nurse for the first doses of the medication. We always do this at the hospital in case there is a reaction. IV's are no joke, and its better to be safe than sorry. Our nurse was lovely and we chatted while I answered a flurry of text messages from concerned friends and family members. Drew happily colored and played on his iPod until the first two infusions were done, and we were on our way home by 3pm. To think of this as a short day was a bit ironic given that we had arrived at 7:30am, but sometimes these days can last for 12 or 15 hours, so this felt short. It felt short anyway until we got home. Then it hit me like a brick wall. We had made it, I could exhale, and the stress of the unknown from the past several weeks started to show up in my horrible back pain, throbbing headache, and exhausted mind. I laid on the couch for the next many hours, my husband putting the kids to bed, and then finally went to bed myself after hooking him up to his nighttime dose of Meropenum. I woke up today feeling awful. My head hurts. My everything hurts. I don't know if its harder this time because he's more aware of what's happening and in addition to managing my own stress and anxiety about everything I'm also trying to minimize his? Is it because the rest of the family sees this as unfair and I feel responsibility to help manage expectation and disappointments and frustrations? I don't know. I do know that in a day or two we will find our groove, everyone will have accepted our temporary routine. Forgive our messy house and scattered minds and shitty attitudes for the next two weeks. It's sort of like survival mode over here, for all of us. We so greatly appreciate all of the thoughts and prayers, and will keep you updated on all things happening here in crazytown.Erin Moorehttp://www.blogger.com/profile/08027766394549526193noreply@blogger.com1tag:blogger.com,1999:blog-2848916293298934342.post-84234581833638522282016-07-08T17:33:00.002-04:002016-07-08T17:33:44.140-04:00I'm a maker. We're all makers. A few weeks ago, I threw a tweet out into the universe looking for good ideas on how to create a hands-free nebulizer for Drew. He gets to play on his iPod during treatments, and with having to hold the nebulizer, he's only got one hand free to play games that mostly require two hands. He does this thing with his arm where he uses it as a ledge to balance the neb, but it usually falls or spills leaving both of us feeling frustrated. A mask would be a simple solution, but we'd graduated from a mask to a mouthpiece for deep breaths and deeper medication penetration into his lungs, and also for the opportunity to utilize the Aerobika for additional positive expiratory pressure, something that helps to open his floppy airways and allow him to cough out the junk that makes him sick. Anyway, you can't use a mask with the Aerobika, so we are left trying to find ways to allow him the simple pleasure of playing on his iPod during treatments while still receiving the full benefit of the treatment.<br />
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So a tweet went out, and what transpired was nothing short of magical. People from around the globe and in a variety of industries and roles shared their ideas and feedback on what we could do to solve this problem. I love it when the network uses its powers for good. Read what <a href="https://twitter.com/SusannahFox">Susanna Fox</a> captured in this Storify of the weeks we spent online prototyping options and finally reaching a reasonable solution. A solution, I should add, that now lives on the <a href="http://www.makerhealth.co/">Maker Health</a> website (or will as soon as I hit "publish"). This is a place where anyone with a good idea can share their idea to help others learn. Check it out.<br />
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<div class="storify">
<iframe allowtransparency="true" frameborder="no" height="750" src="//storify.com/SusannahFox/invent-health-575c5908136a24b772b93de9/embed?border=false" width="100%"></iframe><script src="//storify.com/SusannahFox/invent-health-575c5908136a24b772b93de9.js?border=false"></script><noscript>[<a href="//storify.com/SusannahFox/invent-health-575c5908136a24b772b93de9" target="_blank">View the story "Invent Health: ISO a hands-free nebulizer that's not a mask" on Storify</a>]</noscript></div>
Erin Moorehttp://www.blogger.com/profile/08027766394549526193noreply@blogger.com0tag:blogger.com,1999:blog-2848916293298934342.post-56346237929437227372016-07-08T16:49:00.000-04:002016-07-09T16:36:06.887-04:00Here's the dealIn the middle of June, I wrote a post about Drew's clinic visit and declining lung function. His normal range is mid 90's. At our quarterly check up, his number was down to 85. Before we left for Philadelphia he had dropped down to 79. We decided to treat him with 2 weeks of an oral antibiotic to see if that would help him, thinking that there is probably an infection in his lungs (there's always an infection in his lungs, like literally, but its not always causing a problem), and planned to retest him upon our return. Well, we returned and his lung function is still at 79.<br />
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So the big question is what to do. Normally, I would be on board for treatment. But normally he would be "sick" in the more traditional sense - increased cough, decreased appetite and energy level. And none of those things are there. I've used my Orchestra data to tell the story of his health time and time again, and i'm coming up short this time. There is no cough, and there hasn't been for months. His weight is better than its ever been, and his appetite remains unchanged. He is sleeping well and generally happy. Yet his lung function is going down. His doctor suggested that sometimes kids this age aren't able to articulate when they can't quite take as deep a breath, or when they're struggling to clear secretions when they have a more subtle infection going on, stuff that may be less obvious to my naked ear. But I feel like he would have something going on that I would notice, anything, and I don't. Sometimes people with CF just need a tune-up, and I hate prolonging the inevitable if that's what needs to happen. The thing is, I'm not convinced that's what needs to happen. I don't know what the problem is - an infection? increased inflammation? allergies? reflux? I don't know, and the only way that it would seem that we can figure that out is to try different treatment options to see how he responds to them and what makes him better.<br />
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The current plan is a steroid burst to see if there is inflammation that we can get under control, and retesting his lung function on Monday morning. We also have an appointment to have a PICC placed on Monday morning following the PFT to start two weeks on IVs if his numbers aren't up. Hopefully one of these things work. Normally I'm annoyed when people try to give me suggestions for how to treat him because I normally feel like I have a pretty good handle on him as an individual, but this time I am at a loss. I don't know whats going on. I don't have data to support any theory of illness or allergy or other inflammation otherwise. I'm open to ideas, thoughts and suggestions so please do send them my way if you have them. Stay tuned!Erin Moorehttp://www.blogger.com/profile/08027766394549526193noreply@blogger.com0tag:blogger.com,1999:blog-2848916293298934342.post-30067198020675065552016-06-19T16:36:00.000-04:002016-06-19T16:36:05.939-04:00My idealWe had an appointment this morning and it went great! We woke up early and did all of our breathing treatments, and right before they ended, we signed onto our web portal so that our respiratory therapist could watch how we do them and review settings on the vest. We both took some notes. We discussed using a new device called an Aerobika, something that he can breath into that will give positive pressure and vibration so loosen secretions which he can then expel. She shares a link for us to check out another kid using it on YouTube and tells us she will send one out with home care later this afternoon.<br />
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Between the RT and the doctor, our nurse gets online to review our current meds with us. She's sent me a message through our shared portal last week and asked me to review, marking the medications that we are or are not taking, and I'm able to do it one evening after I get the kids to bed. She simply confirms that nothing has changed before we move on. She asks what we need from them - refills, doctors notes, referrals - and agrees to email us the forms I had sent for school next year, and then steps away to grab the doctor.<br />
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The doctor pops on to review labs that we had done at the outpatient clinic one evening last week and is pleased that everything looks great. We've been practicing our PFTs with our home spirometer and, while our number is down slightly, we agree that since everything else is going so well that we should just stop by the clinic sometime this coming week to repeat it in the PFT lab to make sure there isn't something going on that needs treating. His weight looks great, something she's been following through our shared tracking portal, and neither of us feels the need to meet with the dietician this visit. We had discussed this prior to our visit in our pre-visit plan, but she confirmed that he was in good standing all around and agreed it wasn't necessary to spend time meeting with anyone else. As she is talking, we both have the opportunity to create a shared note - her turning my narrative into data and me reacting her thoughts and turning her suggestions into action items in my own words. She notices that my interpretation of what she had said earlier wasn't what she had meant, and we quickly discuss before we both feel confident in our next step. She asks about our summer plans and what refills we might need, and then puts us on a brief hold while transferring us to the Infectious Disease doctor whose following us because of Drew's achromobacter.<br />
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After just a few minutes on hold, the ID doc gets on the line with his nurse and we talk about next steps for treating his achromobacter and candida, a fungus that grew on his last culture. We have culture swabs at home that we use every few months and mail them into the lab so that we have results to discuss during our visit. This is so much better than the old way when there would be an anxiety filled week waiting for a lab result to pop up in MyChart, not knowing what it would say or how it would or wouldn't change our life. We know what he's got going on down there, and talk about plans for treatment. He mentions a study currently underway for CF kids looking at the variety of bacteria families found within one persons airway to determine if folks are acquiring one strain of a bacteria or multiple, and has found that in the 80ish folks they've tested, not only do they only have one strain, but they're all unique, suggesting that the infection control protocols they've put in place have all but eliminated the passing of bacteria from person to person in clinic. This is good news for a germophobe to hear! He offers to take a look at the specific strains of achromobacter that Drew has to determine how they act and react to different medications, and naturally I take him up on the offer. The notes I'm taking that he can see are reminders for myself to discuss with my husband when we he gets home this evening.<br />
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Before we get off the call, the nurse who had joined the ID doc offers to help us arrange our next appointment, suggesting that it may be difficult to find a time that works with everyone schedules. She shares her screen while I look through my calendar and we are able to find something that works.<br />
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Before we hang up, we are scheduled for our next follow up, this one will be in person as we alternate between e-visits and visits to the hospital to minimize the interruption that CF has in our lives and also the risk to catching something while we are there. We can both download a copy of note we have co-created. The appointment is over within 45 minutes, taking approximately 2-3 hours off the time of a normal visit. Drew is excited to have seen the faces of the folks who normally take care of them, as over video conference they don't need to gown, glove and mask. Its funny how a little face time, even virtually, can create that kind of connection.<br />
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None of this really happened. But what if? What if I didn't have to find a babysitter for the other kids during Drew's appointments, paying them for 4 hours while I sit in clinic with Drew who would rather be at home. What if I didn't have to bribe him with treats for not touching the elevator buttons in the hospital. What if I could get labs done in the evening rather than between 9-4, and what if I could talk with my doctor about the result the same day that the results come in, eliminating much of the worry and fear that comes simply with waiting. What if I had the chance to modify his med list, telling them what we take, and ensuring its correctness in his medical record, in real time. What if I could really create a note <i>with </i>his doctor, google docs style - me typing in blue and her in red, the respiratory therapist in orange and the dietician in green and the infectious disease doc in purple, true and total transparency - and what if that enhanced understanding between us, me more clearly understanding her recommendations, and her having a glimpse into my thoughts and feelings, practical and emotional, eliminating errors and misunderstandings, creating an action plan that we both feel confident that we can follow. What if I could look at a calendar online at a time that's convenient for me, selecting who I want to see and when, simultaneously checking my calendar to find a time that works for us and never having to wait on hold while a scheduler tries to solve this for me between the hours of 9-4pm.<br />
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What really happened during our appointment last week was captured in the <a href="http://goo.gl/tO9oSn">previous post</a>, but if I had it my way, this would be my ideal.Erin Moorehttp://www.blogger.com/profile/08027766394549526193noreply@blogger.com1tag:blogger.com,1999:blog-2848916293298934342.post-3453628978674613402016-06-14T15:51:00.001-04:002016-06-14T15:51:21.515-04:00Yesterdays appointment, and problems with the systemDrew had a clinic visit yesterday and it went pretty well! We haven't been to clinic for about 4 months because I didn't want to pull him out of school for an appointment, so with good health, we pushed it out an extra month and went just yesterday. He's been incredibly healthy for the past 18 months, a longer stretch of time without any oral or IV medications than he's ever had which is amazing. His PFTs were low yesterday - not so low that any action needed to be taken but low enough to cause some concern from his doc. But here's the thing - I've seen him do his PFTs before, and while he's still relatively new to the process, he wasn't doing them quite right. I can't put my finger on exactly how it was different, but he wasn't blasting all his breath as hard as he could right off the bat, and I don't think its because he couldn't due to an illness. When he does his breathing treatments at home, he uses a device called an Aerobika that he blows into with long, hard blows that cause a positive pressure in his lungs and opens them up (hes got malacia that makes them extra floppy) and allows him to move mucus. I think he's got the Aerobika technique mixed up with the PFT technique and I'm not sure how to fix it. We are going to come back in two weeks to try again.<br />
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Otherwise, the appointment was pretty unremarkable. He's gaining weight like a boss and is happy and healthy and so are we. I'll do a culture this weekend when he's been off of one of his treatments for a few days so we should know more about any new bugs in another week. Fingers crossed we are still just dealing with the beast that is achromobacter. We will also repeat his PFT before we head back to Philly to see if we can get his number back up, and if its still low will have to discuss options to treat or try to figure out what's causing the low number.<br />
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<b>Weight chart from July 2013 to present! BOOM!</b></div>
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The next part of this post is in no way a dig at our hospital or our care team, but rather a general annoyance with the system that I experienced and I've heard many of my peers experience. These are my feelings and opinions and don't reflect that of anyone by myself. And i'm so annoyed that I even stated that. </div>
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Per the usual, upon arrival at clinic a nurse or another assistant will come in to take Drew's vitals and then review our med list. And every time, I ask why we are doing it with the response being, "We just want to make sure everything is up to date", though I've yet to see anything change. So we went through the list:</div>
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Her: "When was the last time he took Albuterol?"</div>
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Me: "4 years ago"</div>
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Her: "Atrovent"</div>
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Me: "2 years ago"</div>
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Her: "Pulmicort"</div>
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Me: "6mo ago"</div>
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Her: "Azithromycin"</div>
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Me: "The liquid or the pill?"</div>
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Her: "The liquid"</div>
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Me: "3mo"</div>
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Her: "The pill?"</div>
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Me: "This morning."</div>
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Her: "Fluconazole"</div>
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Me: "That was just a 3mo treatment"</div>
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Her: "So he's off it?"</div>
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Me: "Yes"</div>
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And on and on and on. We got all the meds hes taking, and "got rid of" the meds he isn't, and we went on with our appointment. </div>
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Then before I left, I got my After Visit Summary (AVS), a nice little report of what we discussed during the visit, recommended action steps (make your next appointment, for example), and an updated medication list. Only it's not. Now I don't really care too much whether the med list on my AVS is accurate because I don't use the AVS for much, just a reference or reminder, or to tell my husband what we talked about in clinic. But if it's wrong on my printout, its wrong in my EMR, and the next time I'm asked what med's we are on, we will waste everyone's time by going through this whole process over again. And nothing changes. I've experienced this countless times with homecare nursing, sometimes coming twice a day and having to go through this process, and the list has never, even been right. Before he has gone in for procedures I will review it with someone on the phone the night before, then a nurse in the OR that morning, then again with anesthesia before they take him back and every single time we make the exact same corrections. I think the reason it doesn't change is because only the prescribing physician, the one who put it into the EMR, can take it out, so when you think that the nurse is making the changes they're really just making a note of the changes, flagging them as needing changed, and expecting that the doctor will at some point go in and make the changes. But that doesn't happen, and at no fault of the doc or the nurse or anyone else specifically, except a faulty system. What if something happened to Drew and I wasn't there to tell them what medications he's taking and with what frequency? What if someone less empowered than I used that AVS as a guide for taking their medications? What if there were harmful drug interactions in that list - something new added when the old stuff is never taken away? How might we fix this? The kicker of this image is that is states very clearly that "this list is accurate as of 6/13/16 at 11:59pm". Only it's not. </div>
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Another flaw of the system is appointment scheduling. I need to take Drew back for another appointment in 3 month, and then in 3 months again. I have a preference for the first appointment on a Monday morning, and I also have a preference that we do these appointments at a time that is least disruptive to his life, specifically days off of school. It doesn't matter what anyone else thinks I should do or not do, should deal with or not deal with. This is our life and our preference and we should be allowed to live it according to our own priorities. I digress.<br />
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So I called to schedule an appointment for September. In my mind, this should be early enough to schedule an appointment for September 12, a day that he will be off of school. Well there are no appointments available on September 12, only the 19th, and not until later in the morning. So I ask about October, willing to push to the next day off of school so that he's allowed to keep doing what he wants, which is being at school with his buddies and not missing out. Well the schedule for October isn't available yet so I can't schedule for October. I go back to the 19th that they had proposed, however the infectious disease doc that we also see during our appointments isn't available on the 19th so we would have to make a separate appointment to see him. Listen, I don't like to come into a hospital with my kid who is susceptible to dangerous infections in the first place. Now you want me to pull him out of school AND bring him in twice? I'll figure out another solution.<br />
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After 12 minutes on the phone I hung up with no appointments and no plan. I can schedule a haircut for my kids from my phone - why can't I log into MyChart and browse through appointment options that work for me? Why does a system that weighs so heavily on patients and families make it so hard to do such simple tasks? What can we do to change this?! And for the record, I don't think these are unreasonable requests. If a motivated, engaged, health-literate adult has this much trouble navigating the system, are we actually maybe causing harm by not addressing these seemingly soft problems?Erin Moorehttp://www.blogger.com/profile/08027766394549526193noreply@blogger.com2tag:blogger.com,1999:blog-2848916293298934342.post-37521487453014116272016-06-09T15:00:00.000-04:002016-06-09T15:00:23.795-04:00Change is happening now, hop on boardLast week I was invited to an event at the White House through the Office of Science and Technology Policy in a partnership with MedicineX, a conference that I've attended for the past 4 years and have met some of the most amazing people through (you know who you are). The goal of the meeting was to discuss and then start to create ways to engage participants as partners in research, and many good conversations were had. Maybe the best way to explain the problem we were trying to solve is through an example:<br />
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Many folks who interact with the healthcare system are often asked to participate in a research project at some point in their medical journey. Whether its for a new cancer treatment or an imagining study for CF patients, we are invited and often times compensated for the time that we spend giving of ourselves to science for the benefit of ourselves and others down the road. Many problems exist with this current plan though. First, it's hard to tell what you're signing up for. There's this thing called "Informed Consent" that usually comes in the form of 8 pages of jargon giving you the risks and benefits of the study where you agree to enter into the research at your own free will. It also sometimes says where and how the data will be used, but I've never really read any of that in anything we've ever done, just simply hearing that we can get $100 for letting them do an MRI to study the difference between an MRI picture of your lungs and a CT scan to better develop ways to capture that data is usually enough for me to say OK. But, sometimes the research that you participate in doesn't recruit enough people to be completed, and then it just disappears as though it never existed in the first place. And sometimes some scientist writes a nice paper about the results and gets credit and money to further their research, and I have to stumble upon it in a journal to learn what they learned and then figure out how or if it applies to me. There's gotta be a better way to respect the contribution that folks make to this research system.<br />
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We also discussed recruitment for clinical trials, and how we might help folks to realize the value of the contribution they're making to science and their communities through participation. I'd say to start with, give them their damn data back. Let them know when it will be published. Provide them with updates on the status and findings. And if it fails to recruit, apologize. In other words, be human.<br />
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I think what I like most about these meetings is the people that I get to meet. Hearing their wonderful ideas for healthcare improvement and sharing mine, creating partnerships and working together to change things is what matters here. While I know that it's not humanly possible to get all the amazing people into the same room at the same time, some of my favorite people in healthcare that were missing included: <a href="https://twitter.com/MsWZ">Whitney Zatzkin</a> from <a href="http://fliptheclinic.org/">Flip the Clinic</a>, actually supporting the efforts to turn these ideas into practice; <a href="https://twitter.com/ProfAmyE">Amy Edgar</a> who stopped admiring the problem of lack of integrated care services for complex kids and actually <a href="http://www.everychildeverytime.com/">started a service</a> to meet their needs; <a href="https://twitter.com/jsperber">Jodi Sperber</a>, u<span style="background-color: white; line-height: 19.25px;"><span style="font-family: inherit;">ser centered Design team lead at Partners Connected Health who gets the value of learning from social networks, and all-around good person; and <a href="https://twitter.com/BethTonerRN">Beth Toner</a>, an RN and creator of one of my favorite things, <a href="http://businessinnovationfactory.com/files/pdf/bif-narrative-playbook-final-web.pdf">The Narrative Playbook</a>. (Look these people up, you won't be disappointed.) While we've all connected through social media, </span></span>MedicineX has served as a facilitator of many connections beyond that. It puts people in a place to mingle, sparks conversation and ignites ideation. I've seen the conference evolve over the past 4 years, moving from a forum for patients to voice their frustrations and learn about the work going on in the systems around them, to one where we show up without labels, respecting one another for our expertise, whatever that may be. Only a CF mom (or maybe an infectious disease doc) would explain the MedicineX platform and the day at the White House as an effort to create a human biofilm, something so powerful, something impenetrable, unable to be shut down disrupted despite valiant efforts by opposing forces. Change is happening now, for the better, so hop on board.<br />
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<i>I've also written about this event at the White House for Eli Lilly's Clinical Trials Blog, <a href="https://lillypad.lilly.com/issue.php?name=lilly-trials&e=9632">LillyPad</a>, where I am now their <a href="https://lillypad.lilly.com/issue.php?name=lilly-trials&e=9579">first ePatient Advisor</a>! Woot!</i>Erin Moorehttp://www.blogger.com/profile/08027766394549526193noreply@blogger.com0tag:blogger.com,1999:blog-2848916293298934342.post-21667072523071186552016-06-05T22:04:00.002-04:002016-06-05T22:04:37.600-04:00Our CF Learning Network is launching!I don't even know where to start with this post, so much has been going on over the past several months that I haven't had a free moment to write. Well, not totally true. Actually I have been writing but its been for our <a href="http://us12.campaign-archive1.com/?u=8b037f28b6cafd928f9e31a9f&id=358f6f2e75">CF Care Model of the Future Newsletter</a> and for the <a href="https://lillypad.lilly.com/entry.php?e=9579">Eli Lilly Blog</a> as I'm now an ePatient advisor working with them! Crazy story of how that all came to be, and specific thoughts on how I (and others) feel about that will be on hold for another post.<br />
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You guys, recruitment has started for our CF Learning Network!!! All the work that we've been doing dreaming and designing and planning has gotten us to the point that we are recruiting CF Centers and patients and families to join us to pilot the system that we've dreamed up to test its ability to improve outcomes. Invitations were sent to about 40 CF Centers who were encouraged to identify patients and families to partner together with them to join this work. I'm half ok with the way that it happened - inviting centers to join and identify patients and families to partner with vs. finding the empowered patients and families (of which there are many) and shining a light on them to care centers to join them in their awesome work. We aren't doing it one way or another, but we are capitalizing on the organizational structure of the CF Care Center Network to test out improvement efforts. The awesome patients and families will hopefully join their care teams to learn together and push them to the outer limits of their comfort zone where change happens. We are supporting QI training for teams in this pilot phase so that we can learn a common language, work on projects together, compare results and quickly identify variation and how we can close the gap to get the best care to everyone, personalized, as quickly as possible. I know it sounds abstract, but now that we will soon have a handful of care centers on board and can start to test out some of the ideas that we've dreamed up, I think we will soon be able to talk about it in more concrete terms and start to engage with people at all different levels of interest so that we, as a CF community, can start to work together different to improve outcomes. And I'm not talking about incremental change, I'm talking transformation. I hope (and believe) that within the next 3-5 years, we won't have such dramatic variation in care from center to center but rather best in class care across all CF centers, regardless of where you live and which care center you go to.<br />
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A major component of this work will be partnership between patients & parents and the care team, especially those of us who will be working together closely on quality improvement teams. I had a somewhat failed first try at partnership with our care team, and I'm working to learn what successful partnerships have looked like with other learning networks - how patients and parents are working with care team and in what capacity, what's working and what's not from the perspective of both sides. For example, I know a parent partner on one of the IBD teams who works very closely with the care team on their QI efforts as part of the network, runs the patient and family advisory council, but doesn't get paid. She also serves as the go-between for the families and the care team. I had always envisioned more of a partnership, like one big team, rather than two teams (clinicans and families) working together seamlessly. I'm trying to learn what the parents view as valuable and what they wish was different, and also what the care team thinks about that relationship. I have another friend who worked on the patient and family advisiory council with her care team and was asked to leave when she expressed opposition to some of their work. She's a powerhouse in healthcare improvement, respected by many inside of and outside of the CF world, and can't work with her care team because they wanted a cheerleader, someone to talk about the great work they're doing, and when she challenged them to think bigger they called her negative and asked her to leave. Another parent partnered her non-profit organization that she started, completely independent of any care center, with the National Pediatric Cardiology Quality Improvement Collaborative, the learning network for babies with HLHS, and they have a fabulous relationship. It seems that there will be a variety of ways for folks to partner in this work - some with the care team leading, some with patients leading, some with true partnership and perhaps even some independent work, and I'm really trying to crack that nut of engagement opportunities that exist for all players in our learning health system. Maybe I'll attempt to draw it out on here once I figure it out. Or at least share the ideas I come up with.<br />
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Drew has been well. Like really well. Like I haven't talked about him on the blog in 18months because hes not been since in 18months and I don't wanna jinx it. He didn't miss any school this year and hasn't had a PICC since March of 2015 and thats amazing for any number of reasons. He had an annual pediatrician appointment last week and he gained 8lbs this year, compared to the 2lbs he had gained between 2014-2015. Things have just been well, so i'll leave it at that.<br />
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We're deep into summering right now - staying up a little later than we normally allow, spending endless hours at the pool, taking lots of mini trips and embracing the lack of a schedule. I'm sure that by mid July I'll be longing for that schedule again, but right now it is still such a welcomed break from all that the school year gave us. We're heading to St. Louis to meet some friends in a few weeks, and then back to PA for the last week of June and first week of July before a family trip to South Carolina at the end of July. I'm not sure how I'll do all the work I committed to prior to the official dawn of summer, but I'm sure I'll figure it out. Up next, that time I went to the White House, episode 3. Stay tuned!Erin Moorehttp://www.blogger.com/profile/08027766394549526193noreply@blogger.com0tag:blogger.com,1999:blog-2848916293298934342.post-86848557580069476012016-04-11T12:21:00.000-04:002016-04-11T12:23:49.538-04:00In a networked world, value comes from who you are connected to, how you are connected, and the ability to share and contribute<div style="text-align: center;">
<i> "I am of the opinion that my life belongs to the whole community and as long as I live, it is my privilege to do for it whatever I can. I want to be thoroughly used up when I die, for the harder I work, the more I live." - George Bernard Shaw. </i></div>
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I'm halfway home from the ImproveCareNow Spring Community Conference as I start this post and I had an incredible experience. As quick background, <a href="http://www.improvecarenow.org/">ImproveCareNow</a> (ICN) is a Learning Health Network for people living with Crohns & Colitis. They were the original <a href="http://c3nproject.org/">C3N</a>, a collaborative chronic care network, designed by patients and clinicians and researchers dreaming about a new and better system of care for people living with these inflammatory bowel diseases. Started in 2007, their community has grown to 86 centers across the US & Europe who collect and share outcome data, collaborate on improvement projects to identify better ways to deliver quality care, and have ultimately and most admirably improved the remission rate among people attending their care centers to 80%. Eighty percent of people who attend an ImproveCareNow Center are in clinical remission, giving them back their autonomy, the ability to live their life according to their own priorities.<br />
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One of the many reason that this network is so fascinating to me is that we are in the midst of trying to create a similar model for success in the CF community. We are dreaming of ways to use the knowledge of everyone to learn what we don't know, share information, and transform outcomes. The success in ICN can be attributed to a number of factors - an enhanced data registry where clinical and patient reported data is entered in <b>once</b> generating real time insights,<b> patient data that is never more than 3 days old</b>, for both patients & providers to partner in decision making; this registry also servers as a population management tool, generating insights about the overall health of patients at a given care center or across a group of care centers, providing the opportunity for learning and improvement throughout the network; a "commons" called The Exchange, which is a sharing site, similar to Pinterest, where patients and providers or quality improvement specialists or researchers or anyone associated with the network can go to find answers to the questions they have and share what they're learning in their life or work - everything from videos on how to swallow pills or drop an NG tube to infection control guidelines, clinical trial recruitment and center or network level improvement efforts.<br />
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The remarkable thing about this network, something that has grown and matured greatly over the past 9 years, is the respect that the patient/parent partners and the clinicians have for one another. They have working groups and learning labs where they collaborate both within and across stakeholder groups, respecting the strengths that each bring to the table. They hang out and talk like old friends, the way relationships should be in healthcare. Within the ImproveCareNow network, there has been an increased effort to grow empathy as a means to improving care. Several care teams have recently taken what has been named the "Enteral Nutrition Challenge", an exercise imagined by a person with IBD, where clinicians spend 5 days on a liquid only diet to experience what life as a patient with Crohn's disease might go through, drinking Boost or Ensure for nutrition, dropping their own NG tube, trying to walk a mile in the shoes of the people that they care for. I talked with a doctor and a nurse practitioner from the ICN Center at Cincinnati Childrens at breakfast one morning about their experience. It was incredible to hear about all that they learned, and the dedication that they had to participating in this to better understand the complexities of living this way when they are talking with a patient and helping them to make hard choices about their health and disease.<br />
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I participated in a similar empathy exercise called <a href="https://medium.com/@SusannahFox/cystic-fibrosis-for-one-day-aefff669337a#.lm6p6nr8d">CF 1 Day </a>several months ago and have been dreaming about ways to spread it throughout the CF community. When I arrived at the ICN Conference, I found out about a 24hr liquid only challenge, similar to the Enteral Nutrition Challenge, and I immediately signed up. I was hoping for an immersive experience going to this conference, and I had no idea that I would actually get to go this far in. Names were collected for anyone willing to try this out, and the night before the conference started I received a text message that said that I had won the lottery and was one of five chosen to participate in the 24hr liquid only challenge. I was initially surprised at the way they had positioned it as <i>winning</i> the lottery to participate rather than <i>losing</i> the privilege to eat solid food, but little did I know just how much I would be gaining. I've tried to capture my thoughts about my experience in this Storify.<br />
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<div class="storify">
<iframe allowtransparency="true" frameborder="no" height="750" src="//storify.com/ekeeleymoore/24hr-liquid-diet-challenge-at-icncc16s/embed?header=false" width="100%"></iframe><script src="//storify.com/ekeeleymoore/24hr-liquid-diet-challenge-at-icncc16s.js?header=false"></script><noscript>[<a href="//storify.com/ekeeleymoore/24hr-liquid-diet-challenge-at-icncc16s" target="_blank">View the story "#ICNCC16S" on Storify</a>]</noscript></div>
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So what does all of this mean for CF? For starters, we're not starting at square one. ImproveCareNow and <a href="https://npcqic.org/">NPCQIC</a> and <a href="http://www.solutionsforpatientsafety.org/">SPS</a>, all learning networks that have been developing and learning over the past many years have started to lay the tracks for us to ride upon. We can learn from what they have done and are doing, and model ourselves off of their success. We know what kinds of tools have the most substantial impact on patient health and we can learn how these tools can be implemented. We can invite them to share more about the path they took to get to where they are, how they build relationships, grew trust, struggled with transparency. We can partner with them to learn across diseases, and we will, about how things like social support, pre-visit planning and transition tools have no boundaries. We will stop wasting the precious time that we have in CF on solutions that have little impact, and focus our efforts on learning quality improvement and collaboration to transform outcomes.<br />
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I don't know if we have an "official" launch date for our network of if we are already in the midst of it, though I think the latter. We spent the past 2 years designing our future out of our very imaginations. We will begin recruitment of 15-30 care centers in the next couple of weeks so that we can learn to work together on a small scale before we grow at a rate that only a community with the infrastructure that the CF Community has could grow at. We will challenge the status quo for the sake of our health and the health of our children. We will transform CF care and extend the length and improve the quality of life for all people living with CF. We can't do it alone. We need you, each and every one of you, to believe in us, to support us, to join us or to lead us.<br />
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I'll end with a quote that sums up where I believe we are right now in healthcare. It's from one of my all time favorite books, <a href="http://amzn.com/0805095152">Being Mortal by Dr. Atul Gawande</a>: <i>"We are caught in a transitional phase. However miserable the old system has been, we are all experts in it. We know the dance moves. You agree to be the patient, and I, the doctor, agree to fix you, whatever the improbability, the misery, the damage or the cost. This new way in which together we try to preserve the fiber of a meaningful life - the loyalty and the individuality - we are plotting novices. We are going through a societal learning curve, one person at a time, as a patient and doctor, as human beings."</i> We are all learning, and we each need to bring what we have to the table in order to learn what it is that we really need, and then use our experiences and our imagination to create it.<br />
<br />Erin Moorehttp://www.blogger.com/profile/08027766394549526193noreply@blogger.com0tag:blogger.com,1999:blog-2848916293298934342.post-16886750466085024182016-03-14T13:11:00.000-04:002016-03-14T13:27:22.402-04:00Year SIX starts today!My favorite duo turns SIX today!! I don't feel old enough (or responsible enough) to be in charge of two 6 year olds, but that's where we are. We've made it this far, and I hope I live to see 60 more. In another stoke of genius, we are having the entire kindergarten class over on Friday night for a birthday party. Donations of wine are now being accepted.<br />
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For the first 5 years of Drew's life, we were in the hospital, on average, twice per year. The first year may have been the hardest in terms of admissions, and every year since then we could count on an infection or a flair of symptoms every 4-6 months on average. Ladies and gentlemen, it has been ONE YEAR since <a href="http://goo.gl/klgwdX">the great health fiasco of 2015</a>. We have been one whole year IV and hospital admission free. We haven't even been on oral antibiotics since his birthday last year. I don't think its one thing that helped him, but rather a combination of things. I'm sort of obsessed with his doctor and her willingness to listen to us and work with us to try different things. She definitely plays a huge role here. Another thing we've done is add the Aerobika, an airway clearance device that you blow in to and it vibrates to loosen the mucus in your lungs, but even more, it causes a positive expiratory pressure which opens up his floppy airways and helps him to cough out the gunk way better than the vest or CPT was ever doing for us. In the past year I also started taking him to a chiropractor once a month at the recommendation of another adult with CF who saw tremendous benefit to going. I think its helping with his rib cage mobility, keeping him aligned and loose and able to keep his rib cage flexible so that those little lungs can expand as big as we need them to. He learned to do sinus rinses and does them daily if not twice daily, swims every week at least once and started Kindergarten. He's on n-acetylcysteine (Mucomyst) and takes it orally as much as we can sneak it into a lemon-lime gatorade. We cut down on airway clearance from 3 to 2 times a day when we were treating a fungus earlier this year and he was being pushed to his limit with medications and treatments, and he got his own iPod.<br />
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I think a combination of all of these things has left him in good health and relatively good spirits. I also don't underestimate the role that friendship has played in his good health. Isn't there some saying that goes "Healthy mind, healthy body"? If not, I'll go ahead and author that, because I believe that the connections that he has made to some friends in his class and on his basketball team make him feel like he is a part of something, encouraging him, even if subliminally, to stay well so that he can continue to be a part of that. We had previously turned down play dates to get in breathing treatments and now we work around them. He gets everything he needs, medically speaking, but the social support of friendship was a previously undervalued component of his health. We've also expanded his freedom to make some choices on his own. I talked about this a little in another post, but we realized and appreciate that he needs to be permitted, in as much as possible, to keep shaping the story of his like in the world; to make choices and sustain connections to others according to his own priorities. We schedule his doctors appointments on days off of school and work in tests that need to be done after school and on the weekend. I don't know what parts of what we are doing are helping the most but we don't feel a strong need to make any changes at this point!<br />
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I just returned from a week in DC at a Center for Education and Research on Therapeutics (CERT) meeting about Precision Medicine followed by the annual Cystic Fibrosis Foundation Volunteer Leadership Conference. It was great to see so many new faces in attendance at VLC this year, and sad to see some old friends missing. I, myself, wasn't actually invited to attend this year, but the camaraderie that I find that these gatherings of hundreds of CF parents who are traveling the same path in life helps to carry me through for another year, and so I registered and attended on my own. I was a little disappointed that there wasn't more time to hear from Preston and Mike Boyle and Bill Skach on the state of the science. In years past, it felt like we would get a pretty thorough briefing, and this year felt like we had barely scratched the surface before we were out of time. I did learn that the CFF is planning to play a larger role in lung transplant, working both scientifically to determine why lung transplant survival rates are significantly lower than some other organs, and also with families through the process, though the details of both were a bit vague. I'm hoping we will be learning more soon. Kathy Sabadosa gave an amazing presentation on the CF Care Model of the Future, the C3N work that I've been involved with for the past several years. We are in the weeds of creating the pilot learning network, the group of 15-30 CF care centers that will start working together, being truly transparent with their data, and learning with one another to improve not just the clinical metrics like lung function and BMI, but things that are important to patients and families like quality of life and access to quality "best in class" care. We have a monthly newsletter that we have started to push out to folks who have been involved with the project, wish to learn about the work, or hope to get involved. While its still a bit technical, you are welcome to check it out and subscribe to follow our progress - <a href="http://eepurl.com/bTnhbz">http://eepurl.com/bTnhbz</a>.<br />
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Hands down, the best part of VLC this year was hearing one of the co-founders of the CFF, <a href="http://www.tc.columbia.edu/news.htm?articleID=9445">Phyllis Kossoff</a>, share with us her journey through this life. She was and continues to be a powerhouse, doing what needs to be done with others in the CF community. She touched the hearts of everyone in that room, and her "We WILL do this" attitude empowered us to keep going. I'm always grateful for the opportunity to meet amazing people who are doing amazing things!<br />
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<br />Erin Moorehttp://www.blogger.com/profile/08027766394549526193noreply@blogger.com0