Wednesday, September 23, 2015

Fight Song

Fight Song from Erin Moore on Vimeo.

Letting Tomorrow Wait

This post originally appeared on the CFF blog

It's 10 a.m. on a Sunday and we have received notification of new test results. My son had the CT scan on Friday and I'm surprised the results are available so quickly. While I'm overly eager to enter my username and password to see what the report says, I'm equally hesitant knowing that these results might change our lives. I worry about how the results will change his treatment plan; how it will impact our schedules; how we will handle one more thing. I wonder what it would feel like for things to just remain the same.
This is my struggle as a CF mom. I'm always in a state of wonder about whether the choices I'm making are the right ones for my son with CF, for my other kids, for my marriage and for our lives. We've tried to normalize something that's so far from normal -- and while that's perhaps not the right thing to do, it's what we've chosen for our family. We've identified priorities and built life plans and work plans and treatment plans around them. And now with test results hanging in the balance, I wonder how those priorities will have to shift, who will be disappointed and how we will go forward.
The results could show something small and easily treatable. But I'm the one who has to find the time to manage that small thing. I'm the one who has to make five phone calls over two days to coordinate its arrival, keeping me from volunteering in my daughter's classroom. I'm the one who has to change our sports schedule so that we can add just one more thing to our day. I'm the one who has to reorganize carpool when we have to return to the doctor for a follow-up, and then have to pick up dinner on our way home because we just don't have time to do it all. I'm the one who has to answer the tough questions asked by my boy about why he has to do just one more thing.
And that's if the results tell us it's something small and easily treatable.
I'm really not complaining about all I have to do, because I often consider it a privilege to see the world through this lens. I'm simply highlighting my capacity to do so.
My time, energy and emotional capacity are not infinite and the cognitive burden of this disease is great.
It's Sunday, and I'm stuck between knowing and not knowing. While I usually have a "glass half-full" attitude, I've decided to wait until tomorrow for the change that may be coming. Regardless of the results, almost nothing can change today, so I'll live in this life for one more day and take whatever tomorrow brings ... tomorrow.

Tuesday, September 22, 2015

Curated Content for Your Viewing Pleasure

I've recently read some seriously amazing articles and blog posts from friends that I want to share with folks who read my blog. These people, though they may not have CF or even know what CF is, speak my language. They've found a way to put to words what so many of us, across disease boundaries, experience but simply cannot articulate. They're a bit all over the map but they're all so good. I've tried to include a preview from the posts, to share with you why I love them so much. I hope you'll enjoy them too!

A Mom Advocates for Wholeness in Health Care
“Health is woven into the cloth of life, and to divide it into separate pieces labeled ‘school’ and ‘work’ and ‘family’ unravels the entire fabric,” said Cristin. “Yet the very systems meant to support my son, Gabriel, often tried to do just that. Accessing and coordinating his services became a greater challenge than his actual condition.” "I’m not a doctor or a systems expert or a policymaker. I’m a mom. My only expertise is my experience."

Trapped in the System: A Sick Doctor’s Story
"There is no bad guy here. I love the drug company that created this medication. The price is more than reasonable. I love the doctor who prescribed it to me. My insurance company has never refused to cover my care, and has always been honest with me. The laboratory personnel are professional and competent. It’s the system — the way all these things work, or fail to work, together — that’s the issue."

How can I minimize my chances of having a disabled child?
"I am grateful to my "disabled child" for teaching me one of life's most valuable lessons: the importance of using our hauntingly brief time on this planet to do the things that matter, the things that will make a difference -- the things that are inspired by love and guided by knowledge."

Remember the mothers of sick children
For the rest of us who look at these mothers and think, “I don’t know how she does it,” know this: It’s not their abilities that are superhuman, it’s their love. It is this intense love for their child that pushes them out of bed every morning and forces them to keep going, no matter what odds are stacked against them.

Manifesto of the Brave and Brokenhearted

by Brene Brown, Rising Strong

There is no greater threat to the critics and cynics and fearmongers 
Than those of us who are willing to fall 
Because we have learned how to rise 
With skinned knees and bruised hearts; 
We choose owning our stories of struggle, 
Over hiding, over hustling, over pretending. 
When we deny our stories, they define us. 
When we run from struggle, we are never free. 
So we turn toward truth and look it in the eye. 
We will not be characters in our stories. 
Not villains, not victims, not even heroes. 
We are the authors of our lives. 
We write our own daring endings. 
We craft love from heartbreak, 
Compassion from shame, 
Grace from disappointment, 
Courage from failure. 
Showing up is our power. 
Story is our way home. 
Truth is our song. 
We are the brave and brokenhearted. 
We are rising strong.

Thursday, September 17, 2015

Hope as a primary motivator

School is finally off the ground and other than one mid-day pick up of a puking kid and a handful of forgotten lunchboxes, we seem to be off to a good start. I've had a lot more consistent time to work and to think about my work and what it is that I'm doing or hoping to do and how I'm hoping to do it.

MedicineX is coming up next week, and along with a panel of colleagues, I've been invited to share of my experiences with the C3N and the opportunity that I think it presents for the future of medicine. Reflecting on this - what is the C3N? What does it mean for me? And for you?  - really got me thinking about the purpose or value of all I'm involved with. What is the power of all of this? Why do I believe in it so strongly? And why haven't I been able to help others see what it is that I see with such clarity? 

So what is a C3N (Collaborative Chronic Care Network)? In my opinion, it is a way to organize new and existing stakeholders and resources in a disease community around a common vision to amplify value and improve outcomes. And what does that mean? That's the tricky part. I first thought that it was about tools; what do I have and use and know about that helps me, and how can I share that so that it can also help you. This is no-doubt valuable, but thinking deeper, how did I learn about those things, and how do you learn about those things. Or finding "the best" tools and resources and making them available in a different way. But much like clinical research, the value is not in the published paper buried inside of some journal or identification of what is "best", but in how that knowledge is applied, modified, learned from and spread. 

Perhaps one of the most valuable statements I've heard in regard to this C3N idea was a diabetes dad [sidebar: who is amazing] who said something to the effect of, "We (patients/parents) always need to know whats next, and no matter how much medical information the medical system gives us, we turn to our peers. We need their experience and their stories to heal us so that we can move forward." And then, I was reading this book by Brene Brown called "Rising Strong" (go buy it right now), and she talks a lot about how hope is or can be a motivator; "I’ve found that moving out of powerlessness, and even despair, requires hope. Hope is not an emotion: It’s a cognitive process—a thought process made up of what researcher C. R. Snyder called the trilogy of “goals, pathways, and agency.” Hope happens when we can set goals, have the tenacity and perseverance to pursue those goals, and believe in our own abilities to act." And I thought YES! Yes! That is it!

For a long time when I was one of the only parents involved in the CF group, we talked about needed more people like me. I remember hearing Paul Batalden at one point say that hope is the primary motivator for co-production and I think I’ve always had a lot of hope. But how do we help others to hope? I don’t think it’s that others don’t have hope and that’s why they’re not involved, but rather they feel powerless. C3N provides an opportunity to move out of that powerlessness, allowing that hope to help us to move forward. This is what I think we need to really pay attention to. If hope is the key, and I believe it is, then goal setting, tenacity perhaps through empowerment, storytelling and people connection,  and belief in our ability to act are where we should be focusing our attention and effort. 

Maybe this is where the power of MedX really lies. Maybe its not the cool innovators and disrupters who fascinate us with the novelty of their thinking, but the connection, the empathy, the shared humanity, the hope. Its the people like me in the trenches with our feet on the ground and our head in the clouds, both patients and clinicians and researchers, all sitting at the same table focused now on what we need to do next, knowing that we'll support one another no matter what and in any way we can. I cannot wait to be among my people next week!! I cannot wait to learn more about what their hope is motivating them to do, and how I can build on their hope in my only life. I cannot wait to laugh and cry with my friends from the internet, the people who I see but once or twice a year, yet feel closer to than some people I see everyday. Everyone deserves this feeling, and I believe everyone is capable of achieving it. We are the hopeful, and we will prevail! Here we go!!!!

Tuesday, August 25, 2015

Normalcy is my priority

The gang finally started school this week. Well, if you count staggered starts and half days. They're officially all in on Thursday. We survived summer. Praise the Lord. Thanks be to God. And Amen.

Its been an exhausting week. This is the first time we've had to wake up early for treatments on any regular schedule. For preschool, Drew went in the afternoon which gave us time to wake up, eat a nice big breakfast and get our treatments done. Now, we are waking up at 6am everyday, barely getting in an Ensure Plus and a slice of bacon, and have cranky, tired kids by 6pm. My kids are 12hr a night sleepers, so for this to be sustainable we will need to start skipping dinner and going straight to bed after homework. CF be damned.

Last time I blogged, I had mentioned a CT Scan and MRI that Drew was having. Two things came out of that. The first was the idea to make IRB protocols more easily understood by kids, and that's actually happening. I got in contact with Flip the Clinic and we are doing this. More to come on that later, but i'll just say that i'm SO FREAKING EXCITED!

The other thing that came out of the CT scan was shitty looking lungs. Boo. They weren't shitty shitty, but they weren't as clear and healthy looking as they have been in the past. My initial thoughts went to that bastard achromobacter that's invaded Drew's lungs and is nearly completely antibiotic resistant. I set up time to talk with his doc about the results, and while I waited for our meeting I searched online journals, I googled everything I could possibly think of related to achromobacter and eradication, and I turned to my peers. Oh, my beloved peers. The people that I've never actually met that I trust more than some people I've known my whole live. They're the ones in the trenches with me, desperate for answers, sharing what's given them hope. They track their treatments, get into deep and thoughtful conversations about options, sharing the recommendations of their doctors and what's worked and hasn't worked for them. I took all of this learning into a conversation that my husband and I had with Drew's doctor two weeks ago.

She started by saying it wasn't that bad. There was some mild lower lobe bronchiectasis (irreversible lung damage) but that it was oddly in the lower lobes of his lungs, whereas the typical progressing of lung disease that they see in CF starts with the upper lobes. She said that the lower lobe damage looks to be more consistent with something that you might see with aspiration. Hmmmmm. Queue my mind back to our situation this spring with the weird cough that wouldn't quit that turned out to be a reflux issue. Could that have been so bad that it caused lung damage? We won't ever have a definitive answer on that, but it sure does make you wonder. And as a sidebar, it makes me crazy mad (not at anyone in particular, just at the fact) that in 2015 we don't yet have a way to look at patients by ages or genotypes or medications they're taking to identify success rates or complimentary treatment options or symptom checkers that others might have experienced that could help us to quickly identify or eliminate what might be going on. It's on my list of things to do.

Anyway, because we don't know what caused the damage and while its possible that it was from reflux, its also possible that the achromobacter treatment plan that we are currently on isn't working as well as we had hoped. There were a couple of options that we had discussed. One was trying a new combination of inhaled antibiotics. Right now Drew inhales Tobi and Ceftazadime on 14 day cycles. His bacteria is resistant to Tobi but we didn't want to put him on continuous ceftaz due to growing resistance risks. An achromobacter eradication protocol called for continuous inhaled Ceftaz with a strong oral antibiotic continuously for something like 6 months. There are risks associated with that as well; resistance to a whole new class of antibiotics, GI issues associated with an oral antibiotic, and of course the chance that it wouldn't help. Another option, and something far more novel that I had suggested, was the use of Cysteamine (if you want to be nerdy, read this - It seems to have an incredible capacity to thin mucus, disrupt biofilms and therefore allow antibiotics that were once powerless against these horrible bacteria to once again penetrate them and get rid of resistant bacteria. There hasn't been sufficient testing in people with CF yet, but theres a whole group of folks that I've met who have both use and had success treating their resistant bacteria with this medication. Drew's doctor is trying to learn more about it for us so that we can see if it could be a useful option to try for him. If I'm trusting my mom instinct and backing that up with all of the research I've done on it, I think its probably the best option that we've got at getting rid of this bacteria.

What we settled on was a bronchoscopy. We have been treating the bacteria that Drew grows when they take a culture to see what he has in his lungs. The way they do the culture is sort of like a strep test where they jam the giant q-tip looking apparatus down your through to swab it for bacteria. While this is usually a "good enough" sample, sometimes its useful to get a deeper culture from mucus way down in his lungs. Since he's not yet able to cough up sputum and spit it into a cup, the only way they can get that sample is through a bronchoscopy. The reason that we want to do this is to make sure that we are treating the right bacteria and not missing something else living in his lungs that may be causing damage because of our failure to identify and treat it.

So on Monday, the first day of school, as we were walking out of the building and I was hearing all about who sat with who at lunch and how I packed snacks that they didn't like (you're lucky you even got a snack kids, don't push it!), my phone rang and the number was Cincinnati Children's. It was someone from scheduling calling to get him set up for a bronchoscopy. I told them I was busy and would have to call back.  I know how these calls go - 15 minutes on the phone with a usually very kind woman from customer service who asks me 100 questions that I'm quite frankly shocked that she can't easily get the answers to through our medical record, and then tells me the date that they can do it. I was already not really paying attention to the woman because a ringing phone means nothing to 5yr olds so they carried on with their chatter about their day, and I simply told her I would call back to take care of this later. CF interrupts so many other parts of my life, and I wanted to hear about the first [fake, only half] day of kindergarten, uninterrupted. I didn't want to page back and forth between my calendar and my phone call, quickly and distracted, likely to give her a date that wasn't going to work anyway leading to the need for a follow up and repeat of the first phone call/questionnaire. I want to sit down and think about this, find a time that works well for us. Maybe fall break, or another day off school. Missing a day of school right now will just kill him. He's just getting comfortable going, getting to know his routine, meeting new friends to eat that snack he doesn't like with. Missing a day off to relax might kill him too. I have to weigh these things against the importance of having this done, of knowing whats next on this journey.

I think this is the thing that most infuriates me about the current system for chronic illness care. While i'm trying to make these kinds of decisions, decisions that I have to make in 1000 different ways on nearly every single day, medical professionals are trying to help us understand the importance of things like sleep, exercise and taking your medication on time. I get that that's important, but even for those of us who manage to keep our heads above water, normalcy, above all else and in whatever distorted, backwards, chronic-illness-mom-anything-but-actual-normal way we define it, normalcy is our priority. I wish we could find a way to focus on that.