Talk is cheap

I read this fantastic article the other day called Why We Are Getting Patient Engagement Backwards and it is so spot on I can't stand it. If you haven't read it yet, go read it now, I'll wait. .....waiting..... Now I will quote:

"Our healthcare system inadvertently, yet potently, discourages engagement. It ignores the fact that the patient is already the most engaged person in healthcare."  "As physicians, we expect patients to bring test results to an appointment – because patient information is often not shared throughout our complex and fragmented systems. We expect patients to remember their entire health history, and repeat it ad nauseum as our unconnected systems fail to share. We ask them to recount the complex names of the all the drugs they are taking – and at what doses. And it’s not uncommon for these questions to be asked many times in a single hospitalization, during outpatient visits, and again each time a patient encounters a new caregiver. The reality is that patients have no choice but to be engaged. They are provided these details in an inefficient way that causes a lot of frustration, worry and fear on top of already stressful medical concerns." "We need to think less about the patient being more engaged, and focus on how we can simplify, encourage and automate engagement tools on behalf of the patient."

I'd like to share with you why I've been missing from this blog for the past ~6 weeks. It is because I have been stuck deep in the muck of this broken system that I rely on for more than I should.

A few weeks ago we had made a plan with Drews doctor to start IV antibiotics, not for an exacerbation, but for a changing baseline. I am able to quantify his cough frequency through self tracking, and I've noticed that over the past couple of months he has shifted from having no cough to having a slight cough. Our plan was to be aggressive and to get him back down to his baseline while he wasn't exacerbating. So we spent two weeks running IVs around the clock from home. I had to share the "emergency kit" with school and our babysitter, something that must be with Drew at all times and emphasizes the seriousness of having a PICC line. I had to organize syringes and medications and equipment. I had to program IV pumps and order medications and supplies. I had to remember the dosing schedule and a list of things to look for that would alert me to a problem. I had to do all of this in addition to the rest of the CF care - 3 hours a day of breathing treatments, dosing 30 pills at mealtimes through the day, mixing our M-W-F medication and remember to clean out his once again polyp-y nose - and parenting of my three other children.

Unfortunately the IVs didn't make a notable difference, and we were distracted from the issue at hand by an exacerbation that followed our two weeks. Drew was up all night coughing. I was now calling the nurse who calls the doctor who calls the nurse to tell me that she agrees with my assessment that we should start a steroid. I told them that I thought he should be seen, and they saw him. In the midst of this crisis, it was time to reorder our regular monthly meds. We had plans to go to Philadelphia for Thanksgiving and I would need this delivered before we were to go. I made the call 10 days prior to us leaving, yet 3 days before we were still without. I called back and they were waiting for new prescriptions, only no one had called to tell me that. I called the doctor and then I called back to the pharmacy when the new prescriptions were placed. They couldn't open the prescriptions when I had called and said that they would have the appropriate person call me back. They didn't. I called back the next day, the day before we were to leave, and I insisted that the medication be overnighted with morning delivery so that we would have it before we left. I had to figure out how to get everything that I needed in between breathing treatments and calls with my sons doctor about his declining health.

We decided together that we could make a trip to Philadelphia for Thanksgiving, and with a nebulizer plugged into our car outlet we made the 9hr trip. Thankfully Drew got better.

We returned home to a letter from our secondary insurance letting us know that they were dropping us because we exceeded the income guidelines. I have to wonder if they looked at the cost of CF care - medications alone adding up to around $90,000 a year (thats before insurance, not our out of pocket cost). And that is when he is well! That doesn't include hospitalizations and procedures and antibiotics - don't even get me started. Our secondary insurance covered the cost of anything related to CF that was not covered by our primary insurance. And now, they would be happy to accept my challenge if I can collect receipts and show them that we spent $14,000 on our families medical expenses over the past 12 months. The best part is that I have to HAND WRITE THEM on a chart they sent and attach copies my receipts. Because I have nothing else to do with my time....

This brings us to today. I've got the flu. I haven't left my bed since Friday night. My doctor prescribed Tamiflu and we decided with Drews doctor that he and the rest of the family should be on it prophylaxis. We spent $250 getting this medication for our entire family, which now sits on the counter in my kitchen looking like a black market pharmacy, each child with their own dosing schedule, not to mention my husband or myself. We have medicine syringes to clean and more times to remember. We have it written out on a whiteboard in our kitchen that use to contain our grocery list but was hijacked when health needs overtook life needs.

I read this great memoir last week called My Foreign Cities where the wife of a man with cystic fibrosis shared about her role in their life, and a comment she made about care giving really hit home: "My field was large and nebulous - I had no idea how to do most of the things in it, and all I could do was try anyway."

Trying anyway! That's what we are all doing and are doing the best that we can! We are the most engaged in our health and care, knowing more about stuff that we never wanted to know than we will ever want to know. We are not the problem in this healthcare system to be fixed! Amazon knows when I run out of coffee and it shows up at my door, but it takes 5 phone calls and a headache to get a prescription refilled, one that we have taken and will take for the forseeable future. I am the one tracking my sons health, knowing which protocols work for him and which do not. I am contributing to his health, and I am rewarded with more burden, as he remains unwell. I cannot even coordinate a visit to see two doctors at the same time, despite the fact that they work together, because of a billing system. It has nothing to do with their schedules, or more importantly mine.

This summer I participated in a project sponsored by the Agency for Healthcare Research and Quality. The report is out and it addresses some of these issues as they relate to data connectivity. I don't believe that technology is the answer, but I do think that it can help. To quote the acting Assistant Secretary for Health, Dr. Karen DeSalvo, "Data sharing is a critical piece of this equation. While we need infrastructure to capture and organize this data, we also need to ensure that individuals, health care professionals and community leaders can access and exchange this data, and use it to make decisions that improve health." Here's the report if you're interested in checking it out.

There has got to be a better way folks, and talking about "Patient Engagement" is not the answer. I want to see action. I hope that some of the recommendations put forth in that report will be taken seriously and help to start the change that this healthcare system, this country, and most importantly my family so desperately need.

At least we have a plan!

I think that our baseline is changing. Every time Drew gets sick, with some combination of antibiotics and therapies we seem to be able to get him back to his baseline, which is cough free. In CF, this is important, because one of the most recognized causes of lung damage is exacerbation, and symptoms typically mean that something is going on. We've been off of IV antibiotics for as long as we have ever been - last time was January! - but I think that it's time to start them again. I had a long talk with his doctor yesterday about new symptoms that I have noticed. He is not sick right now, but I have noticed an infrequent cough  happening, just a few times a day, but it's been around for the past 2-3 weeks. I have wondered if it is seasonal allergies, or perhaps a touch of asthma that could be treated with an inhaled steroid, but with some small changes the cough seems to remain.

So what do we do? Some people would suggest that his baseline has changed and he now has a little cough as his baseline. I'm not "some people" and I'm not ready to settle for that until we have exhausted our options in an attempt to return him to his cough-free state. We could try oral antibiotics, or even inhaled, but the bacteria that Drew has in his lungs (achromobacter), is highly resistant to just about all antibiotics. IVs are stronger than oral, and if we want to give it our best shot, we feel that this might be the way to go.

You might ask why we treat when he's not sick. Here's the best way to explain it. Imagine a barrel that we will pretend is your lungs, full of water that we will pretend is bacteria. The barrel can only hold so much before it begins to overflow. Usually, overflow is point where we would treat because we see symptoms. Antibiotics would reduce the amount of bacteria in the barrel and take it down to a level that is no longer overflowing (let's say half full since CF lungs usually have some kind of funk in them causing silent damage). So now imagine that we are in that silent damage phase, perhaps more than half full but not overflowing. And now if we treat with antibiotics, we might be able to lower the level even below the half full point and help to keep those symtoms or overflow from coming back for a longer period of time. Of course there is the possibility that this won't work and he will just have a cough from now on, but there's a reasonable chance that it will and that's what we're going with. I talked to his doctor about this for a long time yesterday, and we decided that being aggressive is in his best interest. It's certainly not what every doctor or patient would choose, but we're going to give it a try.

We hope to go in for our PICC on Friday, November 7. I am going to be out of town most of next week, and running IVs from home is both mentally and physically exhausting. It's definitely not something that one parent who is in charge of 3 other little kids in addition to the one on IVs should have to do alone, so we will wait until I get back. I don't know yet what antibiotics we will be on, but have another post coming on quality improvement type stuff where I will talk a little bit about that. I hope that they're every 12 hours because those every 8hr treatments are so draining. In an effort to avoid even more antibiotic resistance, I think we are going to try inhaled Tobi or Cayston for the week leading up and the two weeks following so that he doesn't get 6 weeks straight of Ceftazadime, the one antibiotic that this miserable bacteria still seems to respond to.

This sucks, but I feel like going into this with him well, and having a week to mentally prepare for a PICC and our crazy hectic life when Drew is on IVs is a nice way to do it. When he is sick and we get thrown into a tailspin, it is much harder to find our footing and regain composure. I don't know if this all will work or not, but I'm hopeful that it will, and at least we have a plan!

A day off

I have today off. Well, mostly off. I have set a regular work schedule for myself in an attempt to accomplish all that I want to while maintaining the much needed balance in my life to feel at ease. I have a nanny who comes on Mondays and Wednesdays and I've been trying to schedule most of my meetings and work during the times that she is there. I have some afternoons as well, when most of the kids are at school and the ones who aren't are sleeping, that I'm happy to take calls and roll up my sleeves. The problem for me with all this work that I've been doing (which I must add that I do love) is that I'm a stay at home mom. I already had a full time job when I slowly acquired a second one. I found myself working around the clock, quite literally, answering emails and taking calls, and my kids noticed. Patience was low, stress levels were high, and time-outs were reaching epic levels. That's when I realized that too many time-outs were the result of not enough time in. All these kids want is my time and attention, and if I didn't figure out a way to balance all of my new work with all of my current work, we weren't going to be a happy bunch.

The kids were off school on Friday, so we packed up the car around 9am and headed to the Children's Museum, followed by lunch and an afternoon trip to the Nature Center. The weather was beautiful and we just wanted to be outside, with no agenda. That night, there was a fall carnival at their school. We had dinner there, and then  played enough games to fill us up with carload of junk for the ride home. We had friends over to play on Saturday, and a birthday party with more friends on Sunday. We all spent 3 days together. I'm not going to lie and say that it was all fun and smiles, but I noticed an improvement in attitudes and a drop in our time-out rate. If I could put this into a pretty little chart, the Quality Improvement folks that I work with would be proud.

I hadn't opened my computer once since Thursday afternoon until last night, and even then, it was only briefly. So when this morning rolled around and our nanny knocked on the door at 9am, I had plans to find a quite place to sit and get back to business. But my calendar was free! I had nothing scheduled today, and it has turned out to be just what I needed. I ran a few errands, I did some things just for me, I spent the last hour sitting in Starbucks plugging away at the blog, and it feels so good. I am refreshed. I am not short on time today. I'm not rushing anywhere, and I think the kids will notice. When I pick them up from school in 30 minutes, I won't be fresh off a conference call or trying to tie up loose ends while they vie for my attention to tell me about the picture they drew or the game they played or the homework they have. We have a birthday party for a stuffed animal taking place today at 4pm, and I want to be there, in body and mind.

I feel guilty about working, about being away from them, even though I absolutely love what I do. They aren't going to be little forever, and they need my time and attention and I want to give it to them. In talking to a friend a couple of weeks ago, she used the term "mission path" to describe the way that she remains focused on the work that she wants to do. I've thought a lot about that, and have tried to focus in on what it is that I want to do. In work and in life, if I'm asked to participate in something that is outside of my mission path, I think seriously about the implications of choosing whether or not to participate. I don't think my mission path is well defined just yet, but I think I'm getting there. I actually said no to a couple of really great opportunities in November because my family is my priority, and I think that's a step in the right direction.

I am going to schedule a day off from time to time, and I'm going to appreciate how it refreshes me.

A Fun Announcement - Data4Health

I have been named to the Robert Wood Johnson Foundation’s Data for Health advisory committee. The Data for Health initiative will explore how health information can be better harnessed to improve people’s lives. The initiative is led by a high-profile advisory committee, co-chaired by David Ross, ScD, director of the Public Health Informatics Institute, and Ivor Horn, MD, M.PH, pediatrician and health services researcher at Children’s National Medical Center. Data for Health will be hosting a series of events in five cities across the country with participation from the U.S. Department of Health and Human Services. Committee members will hear from local leaders, consumers, and professionals from a wide range of sectors on what data is important to them, and how they might use it to help people lead healthier lives. The advisory committee will issue a report and recommendations in early 2015. Find out more: http://bit.ly/Data4Health

NACFC

It's been more than a week since I returned from the North American CF Conference (NACFC) and I finally have the chance to sit down and write something about it. It was nothing short of amazing, once again. The best way for me to recap what I learned is by Storify-ing my Twitter feed from the meeting. I take notes in Twitter form and then go back to read them and dig further into the points that I captured. I'll share the link to my talk up here at the beginning if you're not interested in reading through the whole Storify. I was the last speaker during this session titled The E-Patient Experience, and I realized that while the other clinicians were presenting before me (I was the only "patient") that the way they were using E was for "electronic", not e-Patient in its traditional and appropriate sense. Below is the link to my session. My part starts at the 1hr 26min mark. They don't make it easy to access this either - you might have to create a free username and password and login and all that fun stuff, but I think it's worth it :). Goodluck!  http://arc.nacfconference.org/cff/live/player/74


Here's my conference experience:

Don't. Tell. Anyone.

I have a great idea. Let's have a meeting. Let's invite all of the brilliant minds in CF - the scientists, the care providers, the people who dedicate their lives trying to understand the science to make this life better. Let's bring them all together, all roughly 4000 of them. Let's ask them to present what they know, to talk to one another, to create posters that display all of their amazing and literally life-saving work. And let's not tell anyone else about it. If you want to know about it, you have to have a medical degree. And even then, don't talk about it. Don't take pictures of what you're learning. Don't tweet what you hear. This is a closed meeting.

How will we learn more? How can we grow? How can we collaborate with the real experts, the patients and families who have their heads in the clouds and their feet on the ground! They're the ones willing to do anything! When they do get their hands on a medical journal, it sits at their bedside where they read it and re-read it and then read it again. They're the ones who have funded this research. They should have a right to it! They should get to decide what everyone gets to see and how everyone can share it. Even the work funded by drug companies! I am an investor. I need to take control of my kids outcomes. I have a right to this information. If anyone is going to accelerate the pace of this, it's us! Show us the damn data. I cringed when I saw a "no photos disclaimer" on the app for the upcoming meeting I'm attending. I wish it also said what would happen if you were caught breaking this rule so that I could make a educated decision on whether it was worth it.

Non-Compliance Anonymous

My name is Erin, and it's been 4 and a half months since our last clinic appointment. Why haven't we been to clinic? It depends who you ask. When patients aren't doing what the doctor tells them to do, it's usually identified as a lack of understanding, or a time or money issue.  For us, it's not any of those reasons. I think it's fear, mostly. Fear of what else we could catch in the hospital.
I meant to make an appointment for August, but it wasn't on the top of my "To-Do List" because Drew had been well. Then he got sick, but we handled it remotely - I emailed the doctor, we went back and forth a few times, sent a video, decided on a treatment plan, Drew got better, no need to go into the office. Then I actually scheduled an appointment for October. Next week in fact. But I don't know yet if we will make it or not. I have a babysitter lined up for the other kids. I think about going frequently. I guess I'm just afraid. I'm afraid to go and I'm afraid not to go, paralyzed in between putting his health at risk either way.
I've spoken with his doctor about this many times, with her explaining that she needs to know him when he is well so that she can better assess and treat him when he is sick. She tells me about the value of good infection control practices and how the risks have been lowered even further by moving patients at our clinic under age 5 to a separate floor where they are taken directly back to a room to avoid other CFers. She tells me about the CFF guidelines, and how being seen quarterly is known to be associated with better health outcomes. I know all of this. No one has really validated my concerns and offered to work with me on a solution that meets my needs.
I don't think that I'm better than anyone else, and that by working at the hospital I should have special privileges, not at all. In fact, I very much try step out of my role on the team when I am talking with my sons healthcare providers about an issue pertaining to his well being. That's tricky though, because the very expertise that I have as a mom is what helped to develop the role of Family Partner, and the entire premise of the position is one of patient & family real-life experiences and interactions with the healthcare system. I think that we're just in a different place than we were 10 or even 5 years ago, when a face-to-face clinical encounter or a brief phone call was the only way to communicate with your care team.
What I'm struggling with is the idea of non-compliance. I'm labeled by the CF clinic as non-compliant because they cannot check the box that confirms that I have been in to see them in the last 3 months. The box was created by the CFF, and is associated with better health outcomes. That's the part I'm pushing back on. There is no doubt that staying connected with your care team will help you manage your disease and achieve more of what you want to in your life. I just don't think that it always has to happen in real life in the clinic, especially given the new infection control guidelines.
I would bet that my sons doctors know more about him than many of the other patients in that clinic, regardless of whether they are seen quarterly. I have put a lot of time and effort into making sure of this. I track everything about him. I weigh him weekly. I contact them regularly with updates and questions and concerns. I use the tools that they have empowered patients to use to identify things like an exacerbation, and I work with them very closely, as his primary caregiver, to do what we need to do to keep him well.
They tell me that the risk of him catching something in clinic is low, but no one appreciates the impact that taking that risk, and failing, has on my life. He has complicated airways that may or may not make him more susceptible to pathogen acquisition. I believe that those complicated airways are directly associated with the complexity of treatment and eradication. It's flu season now, and we just got him over the 40lb mark. Excuse my language, but that was fucking hard work. Constantly thinking about, worrying about how to get more calories in, invisibly, and sticker and star charts and frustration and praise. If he gets the flu, we're taking two steps backward. I'm already operating at capacity, and my reserves are bone dry. And this new enterovirus 68 that's floating around everywhere, making some kids really, really sick. Not only do I fear for his life, quite literally, if he were to acquire that, but the quality of life for the rest of the people in this house that need me when I have to spend more time than I already do caring for my son if he should get sick.
I think that there is merit to my fear, data that shows how these harmful bacteria have been known to travel indirectly from patient to patient. Unlikely to happen with good infection control precautions, but this whole risk assessment thing is where I'm stuck. If your kids life were on the line, what kind of risks would you, should you take? Is the first step here admitting that I have a problem? Or is it identifying that there is a problem with the way that we think about compliance. I need to find a way to break the stigma associated with non-compliance, and I don't know that being compliant, taking part in something that I don't necessarily agree to be the best option for us, is the right way to go about that. I just don't know what is. Thanks for listening.

Waze

Get the best route, every day,

with real–time help from other drivers.

Waze is one of the world's largest community-based traffic and navigation apps. Join other drivers in your area who share real-time traffic and road info, saving everyone time and gas money on their daily commute.

If you're not familiar with this app called Waze, I highly recommend it. We discovered it this summer when we drove from Cincinnati to New Jersey to Pennsylvania to Connecticut and back to Cincinnati. The reason that I bring it up is not to discuss traffic, but to think about something like this in the context of healthcare.

How can we create a Waze for healthcare? I think that it's everything that we need. It's consistent in that it always gets us to where we need to be. Waze understands my goal - to get from point A to point B. I have input. I can tell it to avoid highways, take the shortest route, or pass through certain cities. It recognizes that we have more power when we're moving together, and doesn't suppose that it knows all the answers. It's collaborative and iterative. Issue identification and solution creation is ongoing. And then there's the rewards! In the Waze app, you earn points for reporting accidents or confirming that a suggested workaround has achieved your goal. They're truly inconsequential in my life, but it feels good to get them, and they keep me engaged and contributing to the system, trying to find my way to the next level. 

I need a healthcare system that is consistent. What's "best" is relative. I don't always know what's best for me and for our situation, but the ability to plug in my goals and have confidence that there are many paths that will all lead me to achieve them is important. I need a healthcare system that I can learn from and that can learn from me. We all have very valuable knowledge and experience to share, and when we combine it all, together we can do great things. I need a healthcare system that gives me access to real-time, trusted, reliable information, from my community, my care providers, from other stakeholders with goals similar to mine - to improve health and care. I need a system that shows it's appreciation for my participation. Recognize my proactive approach to managing my health and reward me by taking away pre-authorizations or co-pays or other barriers to access and engagement and adherence.

The best part of this story is that I'm doing it. This is actually happening. This is what a Collaborative Chronic Care Network (C3N) for Cystic Fibrosis will facilitate. Email me if you want to be a part of this. I'm completely serious - erin (dot) moore (at) cchmc (dot) org. 

Pushing the train

My life is not like your life. I doubt that many of you wake up everyday to the reality that you might outlive one of your children. We've been spending 4 hours a day doing breathing treatments because Drew is sick. We spent 4 hours a day every single day since last Saturday doing breathing treatments and chest percussion to bang out the mucus that is clogging Drew's airways. I emailed his doctor to give my diagnosis, and after some back and forth, and a shared video of his cough and breathing sounds, we agreed on a treatment plan. I went to CVS for prescriptions 3 times on Friday. I had to tell a 4yr old that he couldn't go to school two days this week because he needed to do his "breathies". It's the second week of school, and the weight of his disappointment was heavier to hold than the worry about his declining health.

The weather finally changed in Cincinnati, and while most kids were at the park or outside playing with friends, we were still inside doing breathing treatments. We walk this fine line of needing rest and needing exercise. The fear of the new respiratory virus in the community has kept us isolated. For many, it would just be a bad cold. For us, it means a likely hospitalization and who knows what else. 

We are overdue for our quarterly check up, and my non-compliance to the protocol has been noted. But let me try to articulate why I haven't taken Drew into clinic. He has a multi-drug resistant bacteria in his lungs. That is the reason that we spend so much time doing breathing treatments. These aren't optional treatments. He needs this medication to keep him alive. I believe that he got that bacteria from the hospital. And so while the risk of taking him into clinic for a well visit may be low, given the new infection control protocols and the fact that he wears a mask and grabs the first appointment on a Monday morning when there has been no CF traffic in the office for a few days, I struggle. I don't want to put his health at risk either way, by taking him or by not. But the implications that the acquisition of that one bacteria has had on our life has been profound. Even when Drew is well, he spends 2 weeks at a time doing an hour and a half of treatments a day, and then the next two weeks we add an inhaled antibiotic which takes our treatment time up to 3 hours day. When you add up those 3 hours, that is literally an entire day of every week that we spend hooked up to machines trying to keep him healthy. And then there's the impact that that has on the rest of our world! Marker on the walls? Mom and dad must have been busy with Drew. Forgotten homework? A "quick" call from the insurance company turned into something longer and even less valuable than agreed up when we picked up the phone and now there is a disappointed 6yo who got tired of waiting to show me her latest artwork. Playdates? Anyone sick? Our kids can't come. Exhaustion? An 8am meeting means we are up for the day by 6 so that we can get all of his treatments done, kids fed, lunches packed, babysitters briefed, and out the door on time. Schedules are rearranged around when treatments need to be done, and we try to do treatments around the very few activities that we are actually involved with. I wish we could be in soccer and dance and gymnastics and swimming, but remember we only get 6 days a week as cystic fibrosis has stolen our 7th. Those are the implications.

I worry about our other kids. Luckily, no one has known our life any differently as they are all so young and this is such a routine for us, and our people are sort of go-with-the-flow, but friendships are made and confidence is gained in some of those extracurricular activities that we just can't seem to find time for. We'd love to meet friends for dinner, but we never announce our plans prior to them taking place so as to avoid the disappointment that would inevitably come when we receive a text that one of our dinner guests has a runny nose and we have to cancel. It's exhausting to make it up as we go, changing plans on the fly and turning a relaxing night out with friends into a homemade pizza and movie night, complete with popcorn and sleeping bags. We, too, would like a break, where we get to socialize with friends over a beer while the kids act like maniacs in a restaurant where we will leave a big tip to thank them for allowing us to break free for a few hours. I'd just like to watch the news one night, or go to bed early and read a book. But before any of that can happen, we need to clean up. We have medical equipment that requires nightly sterilizing. It would free up my time if my pharmacy could work with my doctor to coordinate when pre-approvals would be needed, or to "God forbid" make an exception for someone who has a genetic disease that does not have a cure. For the foreseeable future, we will need these medications, and it would be nice if it was acknowledged that this is not a way that I care to spend my time. 

I worry about Drew's health when we need to replace a piece of drywall where a toilet leaked. While some moisture in the wall might not be harmful to most of us, mold could cause some serious complications for Drew. And then there's the super fine particles of drywall dust. As contained as we may think we are keeping them, I know that they're flying through our house. I hope that they don't cause any trouble. Traveling is another wild card. We are hoping to spend time with family next weekend in Chicago, a trip that has been planned for many months. Will the exhaustion of a long but no doubt fun weekend give way to another exacerbation? Is that worth it? 

I noticed the other day when we were leaving school the look that we had gotten from a group of teachers who heard  Drew coughing to the point  where he almost threw up. Yes, three seconds prior he was running around and laughing and playing, and then his little lungs couldn't keep up. That's the blessing and the curse of this wretched disease; he looks perfectly normal, but no one realizes what it takes to keep him that way. He hadn't been to school that day, but I had to bring him with me for pick up. I know a judging look, as I've given them before. I think people often judge that which they don't understand. These will be his teachers next year. Will I be able to help them understand? 

I'm going to quote a piece from Kelle Hampton's blog about fitting square pegs into round holes, because I feel a lot like a square peg in a world full of round holes.

Remember the movie Apollo 13? The astronauts’ lives literally depended on fitting a square peg in a round hole. Technically speaking, the lunar module’s round receptacles didn’t fit the command module’s square filters for carbon dioxide disposal, and CO2 levels were near toxic. There’s this scene where these NASA engineers go into a room, 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 victoriously 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 as if fitting a square peg into a round hole wasn’t problem enough, you know what else happened on Apollo 13? They had to conserve power on the shuttle to get it home, so they cut all their resources down. No cabin heaters, no instrument display, no guidance computer, no ground control. No map of where to go and no one to tell them how to do it. Sound familiar? It’s called parenting. 

This is where I question whether all that I'm feeling is really because of cystic fibrosis. I can't differentiate between parenting and care giving because both were new to me within a relatively short period of time, and the role is all I've ever really know. I'm caring for my kids, sick and health, happy and sad. I don't deserve a badge of honor. I made a conscious decision to have children and it is my responsibility and honor to raiser them. Are others as overwhelmed as I am by our goals and ambitions and the lack of time to complete them? Do families not pressed with a chronic illness worry about what influences or shortcomings are shaping their kids? Am I the only one who feel like a square peg?

I know that I'm not the only one who feels this way. I know that because of the many wonderful people that I had the privilege to spend last weekend with at a conference called Medicine X at Stanford University. Many of them are also dealing with different health conditions. I also met many who were not. I met the people who weren't given nearly enough credit for being there - the care providers. It seems there could be no more two different groups that could collide in such harmony. The doctors who chose this path, spending years and years and lots of money and energy, making personal sacrifices just so that they could help others, and the patients, who never dreamed of being a part of the healthcare system and who want out of it worse than any of them can express. It's the humble awareness of a shared humanity that brought us all together, and was expressed so eloqently in a quote shared by Pam Ressler during one of the most captivating panels at Medicine X: "Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” Thank you to the clinicians, for being there and for caring enough about the patients to dedicate your time and energy into improving the system. 

Before I end this ramble, I want you to try to put into perspective what it is that I'm trying to do in healthcare. I want you to imagine that I'm pushing a train. It's my train, and I've got two hands on it and I'm behind it, pushing it. And everyone that sees me, or even hears about me, will probably have something to say about me and my train. "Wow, that's amazing that she can push that train!", or, "I bet the train would go faster if she asked others to help her", or, "She shouldn't be wearing that to push her train", or, "What a fool for thinking she will ever get anywhere pushing that train." But what if the only way that you were allowed to talk about my train was if your hands were also on my train. And it's not about moving faster, though that could happen. It's about moving forward. I need to keep moving forward. I need to continue toward my goal, and when people say "Wait! We need to stop and make a plan!", or, "We need to have a meeting about this before we can move forward", I say no. I need to keep moving forward. Stopping does nothing but halt my forward progress, and once I stop, it takes a lot more energy to get my train going again. I am going to keep pushing my train and I invite everyone to join me, because I refuse to let my son become the victim of a broken system.

We, quite unfortunately, are immersed in the kingdom of the sick. I think that my mission in life is to launch our many experiences out into the world, so that I can both help others and in turn, help myself. 

"They don't care that you know until they know that you care."

Medicine X wrapped up yesterday, and my soul is full. What an incredible experience, to bring together all of the patients and doctors and researchers and drug companies and technologists who all share a vision for a better future of healthcare and are doing something about it. I'll be sharing lots of stories on here in the coming weeks, stories that were told and that need to be heard. In the meantime, here's a Storified version, or highlights reel for those unfamiliar with Storify, of what happened over the past 4 days:

Medicine X Ignite Talk 2014

Good morning. This is Drew. He is 4 years old and he has Cystic Fibrosis, a genetic disease characterized by chronic lung infections and impaired digestion. He has a 50% chance of living to age 41, and I am here today for two reasons. First, because I am determined to beat those odds. Second, because I know I can’t do it alone.

Cystic Fibrosis is a progressive and fatal genetic disease that does not have a cure. I wake up everyday knowing that I could very well outlive my son. Think about that for a minute.

Receiving that diagnosis, and hearing those words “progressive and fatal”, thats tough. I was scared. I am scared! Terrified actually. But being sad and scared is not a productive place for me to stay.

Once we adjusted to our new normal, a life of medications and doctors appointments and hospital stays, wondering and worrying and praying, I set out on a mission to save my son. I listened to what the doctors were telling us, taking notes and asking questions. I searched online and read medical journals and news articles. I tracked everything, trying to learn anything new, something the researchers might have missed, and stumbled upon other parents and patients online who were doing the same thing. I joined advisory groups and quality improvement committees that I not only learned from but started to contribute to. I was becoming empowered by my peers, and I began to see how patients, working together with clinicians and researchers, true participatory medicine, could improve both health and care.

My son has a multi-drug resistant bacteria growing in his lungs that has had us in and out of the hospital for the past two 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’m here because I am trying to save my son’s life! 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 have a moral obligation to work together and organize this information!

To the doctors and researchers here:
I want you to appreciate that patients are more than just patients and that our lives are more than just our disease. I am a mother, a wife, a daughter, a sister, a niece, an aunt, a neighbor and a friend. I have experience as a marketer, a researcher, a photographer. I have sold Tupperware, makeup, knives, linens and Girl Scout cookies. I have served coffee and cosmos and jury duty. I am a volunteer, a blogger and an advocate. I work on our clinical care team as a Family Partner so that the perspective of patients and families who experience care in a way that you may never fully understand, is present in all clinical discussions. What patients and their caregivers bring to the table should be appreciated. We want to work with you. I implore you, let us help!

To the patients and caregivers: 

Be brave. This isn’t an easy life. It is tough, there is no doubt about it. But you are very capable and the rewards are great. There are many people like you. You can find us online, in support groups and wandering the halls of the hospital. You have so much knowledge to share, as you are an expert on you. Share that rich knowledge with your doctors and other care providers and with everyone you meet. Let your voice be heard, and lead the change that you desperately need.

This is Drew. He may have cystic fibrosis, but cystic fibrosis does not have him.

A Book of Hope

About a year ago, a learned about a project that another parent advocate in a different disease community had been working on. He had asked the question of some of his peers, "If you could, what advice would you give to someone who was newly diagnosed?" The response he got was overwhelming, and he created a Book of Hope for the IBD Community.
Fast forward to this July when I was told that had sufficient resources to create and distribute this same booklet completely free of charge for another disease community, and asked if I thought that it was something that CF patients and families would embrace. It was a no brainer. I asked this question to other CF patients and families, "If you could, what advice would you give to someone who was newly diagnosed?" The response that we got was again overwhelming, and we created a Book of Hope for the CF Community. It's in the process of being printed, and will be distributed absolutely free of charge to anyone wanting a copy starting in early September. I hope you like it!
 (*Don't worry, this version has been every so slightly edited so that the print version will be void of grammatical errors.)

Our Story in US News & World Report!

Unfortunately I don't have an electronic copy to share right now, but this week US News & World Report published it's Best Hospitals 2015 Edition and we're in it! My favorite line in the whole thing is this: "Moore's experience, on a small scale, hints at the possibilities." Yes, it sure does, and those possibilities are endless!!

Oh, hey August!

Well that summer just flew right past us now didn't it! We were on vacation for the month of July, and it was oh so good. We packed up and shipped out on July 2 for a week in Stone Harbor, NJ. That week was simply delightful. I don't usually have high expectations for vacations, with everyone in different beds and on different schedules, but this one just worked. We had a house with a pool and were 3 blocks from the ocean. The weather cooperated in the most fantastic way, with cooler temps and no humidity. We cooked meals at home and took naps everyday, and it all just worked out.
From there we headed north to Philadelphia for two weeks on the farm. We got to see friends that we only ever see once a year on our annual trip "home". I had a little getaway with a good friend to the Spa at the Hershey Hotel (if you've never been, I highly recommend it!) We had a Party for a Cure Fundraiser and raised $2000 for the CFF. I worked a little bit here and there (more on that soon), and we just had a really nice two weeks in PA.

My People

We ended our month-long extravaganza with a trip to Waterford, CT to visit my husband's family. I love New England and all things New England-y. We went to the beach, toured a submarine, took a ferry to Long Island to see some friends, visited with cousins, and enjoyed our last week away from home.

By the time that our visit to Connecticut neared it's end, I think we were all a little hungry for home. We packed up the car last Friday morning and headed west, and just 13 short hours later (or the equivalent of Frozen about 8 times) we arrived back in Cincinnati. It was very nice get home on Friday and have the weekend to get reacquainted with our home and our city before jumping back into the world of non-vacation living.

For anyone who follows this blog with any regularity, you'll be happy to know that we made this trip without a hospitalization. CF did not interrupt our vacation like it did last year and the year before. Perhaps that's what really made this trip a completely relaxing and rejuvenating one. Drew got sick when we got home, but just for a day. We've found a treatment plan that seems to work when he starts to get sick, and I'm so grateful for that.

I don't even know where to start with sharing about all of the wonderful things that have been happening in the world of patient engagement and advances in collaborative care for CF. I've started but haven't finished about 4 posts on all of that awesomeness, so stay tuned because I have a lot to tell the world about!

You Kicked Her Out: An Open Letter to the American Association of University Women by Kristin McGuinness

An amazing CF Mama wrote this essay in response to this story in the news about a girl with cystic fibrosis and a discrimination complaint against a national women’s group

Dear American Association of University Women:

You kicked her out.

You kicked her out?

Devyn Solo, she is bright...determined...upbeat. I don't even know her, but I know that much about her. She is brave and empathetic too. I know these things because she is just like my daughter.

My daughter also has cystic fibrosis.

You would kick her out too, I suppose.

These bright girls...smart, vivacious, ready to go for what they want. You would read their applications and think “YES!” You would interview them and say afterwards “Wow!” You would peruse their recommendations and smile wide and and nod. These are the girls you WANT in your STEM program.

Responsible girls.

Smart girls.

Girls with sparkle and spunk.

Girls with dreams.

And you would send them letters saying “congratulations, you have been accepted...”

And then you would kick them out.

Because their cells misbehave.

Because they were born that way.

With cystic fibrosis.

Because they have to take pills when they eat. Which they have been doing on their own since they were 2 or 3 or 4 years old. Even at school. On their own. These pills pose no threat to other students, they are enzymes that everyone (without CF) manufactures in their bodies.

That is too much for you. So you kicked her out.

Because these girls would have to plug in a couple of machines to do breathing treatments and chest physiotherapy twice a day, you would kick them out. These machines...technology...engineering and math required to create and run effectively...these machines scare you? They must. Because you kicked her out.

Cystic fibrosis is a genetic illness; nobody else in your program was at risk. CF is a genetic illness, she did not ask for it. She asked for an opportunity. To learn and move towards her dream. And you gave it to her. But then you took it back.

You kicked her out.

These girls, Devyn and my daughter, they have so much more to deal with every day than most kids. They work really hard to stay healthy, to look healthy, so they can do the things they want to do. They face needles and x-rays and IVs and medication after medication...just to keep even with the other kids. And they try to stay positive about themselves, their talents and skills and their ability to make it through to their goals—college, a career, a family.

You were right there, ready to give Devyn a positive experience, to be a stepping stone towards her dream. And then you kicked her out.

Because you were scared. And uneducated. And untrusting of her.

You kicked her out.

You kicked her gut. You knocked a girl down. You made her question if she can do it...because she's sick. You crippled her sense of who she is; made her wonder what all the extra work is worth if she won't be allowed to do things that other girls can do even if she is healthy. You did not empower her. Not in science. Or technology. Or engineering or math. You kicked her out.

Shame on you.

And to Devyn, keep on shining. Keep on taking care of yourself and studying and being a positive young lady. You will reach your goal. You will make them sorry they missed out on the opportunity to have a girl who LIVES science and technology in their camp. Stay active and take your medication. Because with or without the AAUW, you, Devyn, kick butt!

By: Kristin McGuinness

Vacation

I'm on vacation and it feels so good. We're one block from the bay and two blocks from the beach. The weather is delightful. We're in a "No shirt, no shoes, no problem" kind of town. I'm writing this, only two days into our trip, so that I don't forget by the end of the week, when patience is low because exhaustion levels are high, just how good it felt, if but for a few days, to be on vacation.
Technically speaking, we will be "on vacation" for a whole month. We're not returning to Cincinnati until early August. We've started our trip in Stone Harbor at the beach for a week. Next we will head to Philadelphia, with a sidebar trip to Hershey, where I have a date with a good girlfriend and the Spa at the Hershey Hotel. We will wrap up our month-long vacation extravaganza in southeastern Connecticut before heading back to the midwest early next month, hopefully refreshed.
The lead up to this trip was a bit hectic. We needed new swimsuits and towels, sunscreen and water shoes. Medications needed to be ordered and shipped to arrive at the right place at the right time. I needed to coordinate schedules and hold the mail and pack a lot of stuff. So far, I'd say it's been worth it.
I've taken each kid for a walk, alone. I honestly don't think I've done that since my 6yr old was my only baby, and that was for a mere 18mo. We walked and talked, holding hands and making plans. We discussed favorite parts of our trip, which range from watching Frozen in the car to playing in the ocean with Pop Pop. They've each picked out a new hat and bough a little treat. I'm seeing how different they are individually than when they are together. I wish I had more time to dedicate to this. Often when I have an errand to run in the evening or on the weekend, I grab one kid to take along. This time we are spending together at the beach is different, because we've nowhere to be but here. We're just walking, exploring the island, and I love it.
I'm sure that by the end of July we will be ready for our own beds and our regular routine. There's something settling about falling back into your routine. There's also something real nice about being able to break out of it for a while. Cheers to vacation.

An update on health and life

Drew had a clinic check up yesterday and I'm happy to report a clean bill of health. He has gained both pounds and inches, which has moved his BMI down to 61%, but it is still above 50th which is the CFF's healthy measure guideline. We hadn't done a culture in a while, mostly because his health has been good and also because we know what bacteria he is growing. I always wonder if something new might be there causing silent harm that we're unaware of, but knowing that an exacerbation is typically the culprit in lung damage and having not experienced that anytime too recently, we've forgone the test. It's a simple test, not unlike a strep throat swab, but the anxiety that accompanies it - the waiting and wondering and worrying, knowing that it's better to know while trying to embrace the bliss that is ignorance - that is the tough part. Drew doesn't even mind the test anymore, happily opening wide while I stick the swab down far enough to induce a cough without triggering a gag. I do the test at home for a couple of reasons. First, I'm perfectly equip to do it. Second, if we do it a week before our clinic visit, then we have the results to discuss when we go in for the checkup, versus having it done at the visit and then waiting for the doctor or nurse to call to discuss the results, catching me at the most inopportune times, like at the grocery store or while giving baths (both have happened).
Yesterday my husband took Drew to his appointment as I was out of town at a conference. The culture report wasn't final at the time that he was there, but it wasn't showing achromobacter, our nemesis and the bacteria that's been rotting his airways for the past year and a half. There was mild H.flu and normal oral flora, but no achromobacter. I knew that it would show up on the final report because it always does, but a little bit of me hoped that it wouldn't. The final report came through today and it did show mild achromobacter. Drat. I mean I knew, but I'd hoped. Such is life. Otherwise he is well and we are happy.
Work continues to move right along with the C3N work. We have patients in the CF Clinic in Cincinnati testing out the Orchestra platform  for self tracking and better communication between visits. We are meeting with the Telehealth Department next week to organize what we anticipate will turn into a pilot, allowing patients to participate in *some* clinic visits remotely. It's truly remarkable what we can do these days!
In other news, it looks like I will be speaking at the very conference where I was told just two years ago that the reason patients aren't invited is because they can be a distraction. The request that I received was in response to an abstract that I submitted called "THE VALUE OF PATIENT PARTNERSHIP IN IMPROVING HEALTH AND CARE IN CYSTIC FIBROSIS" and to quote the request, "We really think it is phenomenally important to hear from parents/patient pov." Yes, sir, it is.
The summer days have been both long and good to us. We are heading out east in a few weeks for a whole month! Our tour begins with a week in Stone Harbor, NJ followed by two weeks in the greater Philadelphia area before heading north to southeastern Connecticut to round out the month. Here's hoping we don't repeat our visits to CHOP in 2013 and 2012!
More news as it breaks!

"The Opposite of Loneliness"

I've started reading a great book called "The Opposite of Loneliness", and while it has nothing to do with chronic illness care or even health, I couldn't help but feel like these two quotes describe the spaces online where patients are meeting other patients and talking and sharing and learning and growing.

"It’s not quite love and it’s not quite community; it’s just this feeling that there are people, an abundance of people, who are in this together."

"We don't have a word for the opposite of loneliness, but if we did that's how i'd say I feel right now. Here, with all of you. In love, impressed, humbled, scared."

Does this not  feel like Smart Patients? It's not just for CF patients and caregivers. Patients and caregivers from any disease group, can join (if you're not CF, use this link). These are the groups that are going to change the face of chronic illness care. Patients, often known as the most knowledgeable and underutilized resource in the healthcare system, are in this this together, and we're going to change the world. 

Bigger, better, faster, stronger

Don't worry, i'm not about to break into a Kanye song. What I want to talk about is something that attention must be drawn to.

A few months ago, I was sitting in the waiting room at our CF clinic for a quarterly appointment and I was overcome with anxiety. As a believer in the importance of the new infection control guidelines, I worried that my son would pick up a new bug that would be as detrimental to his health. I started to tweet about it with the undertone of "there must be a better way". From across the world, someone in Australlia shared an awesome paper and subsequent link to a telemedicine study that was taking place in Australlia. I dug into a little, and then went back to Twitter, sharing my frustration that not only are we not utilizing these tools, but we're not even aware of them! Some colleagues saw my messages, directed at them, and shared them with the CF Care Team. They went back and forth over email, sharing the opportunities that they saw or concerns that they had with a novel tool like telehealth. After quite a few messages had been shared, the email chain was forwarded to the department chair who said "We will bring this to the CF center at CCHMC to be best in class". As it turns out, our hospital had just started a Telemedicine Department, and we scheduled a meeting to figure out how to start testing this model.

The total elapsed time from my first tweet through the commitment of the department to move forward with this model to the scheduling of a meeting: 2 days.

On Saturday afternoon, I was having a conversation with Roni Zeiger. Here's what I said:

" I'm thinking about novel ways to do research and disseminate useful info to patients and caregivers, and also to sort of advertise valuable research opportunities so that patients are aware of them. Right now, if someone wants to do research on CF patients, they [typically] go through the CFF and then they direct them to the centers where the center directors can pluck out who might be a good candidate for a given research opportunity. I hate this because the doc is deciding what I get and don't get to participate in through awareness alone."

Today, this was launched on Smart Patients: https://www.smartpatients.com/cystic-fibrosis/trials. It took only 5 days from the birth of this idea to design and implement the tool. (high five to Roni!)

While these happen to be examples of work that I've done, patients throughout the healthcare system (like Stacey Lihn and Justin Vandergrift) are innovating the exact same way. WE DON'T HAVE TIME TO WAIT. As I stated in an earlier post, I have a hard time leaving the fate of my kid up to researchers alone. I know and appreciate that a ton of great research is being done to find new and novel treatment options to help patients with Cystic Fibrosis, but it's not happening fast enough and that's not okay with me. It's especially not okay when we (patients and caregivers) are showing ways that we can do it bigger, better, faster, stronger....and for less money. The knowledge and expertise that we hold is under appreciated and under utilized. We are desperate to partner with doctors and researchers to create new treatment options and cure diseases, but they seem to be hung up on the fear of what could go wrong rather than looking at the opportunity for what could go right!

There's a great book that I read my kids from time to time called "The Whatif Monster" that i'd like to share some words from:

"Some Whatif Monsters like to hang out and fill up our heads with worry and doubt. They are sneaky and quiet and quick as a blink and the words that they whisper can change how we think. Jonathan James heard those words full of dread and all of those "what ifs" got stuck in his head." 

It goes on to show Jonathan in a number of situation that are influenced negatively by his fears: Climbing a tree - what if I fall? Jumping into the pool - what if it's cold? Playing baseball - what if I'm bad and the other kids laugh? Painting - what if it's ugly? Trying a new food - what if it's yucky?

BUT THEN, Jonathan looks that Whatif Monster straight in the eye and says "What if you're wrong?"! What if I made it to the top of that tree and I never slip or skin my knee? What if I jump into that pool and everyone thinks I look really cool? What if baseball is nothing but fun and I end up hitting a triple home run?

You get the idea. I fear that the Whatif Monster has infiltrated the system, and I spend my days trying to allay fears. The most admirable scientists and doctors, device manufacturers and insurance providers need patients to hold their hands and share their stories to allay those fears. We need to do this together.

Smart Patients

For the past couple of weeks, I've been working with the folks at Smart Patients to start a community for Cystic Fibrosis patients and caregivers. Smart Patients just launched this clinical trial search tool (https://www.smartpatients.com/cystic-fibrosis/trials) that I think is fantastic. While researchers and scientists may not love the idea of patients talking to one another about trials, it is happening and in my opinion it is critically important for them to both be aware of and appreciate. This peer-to-peer awareness and recruitment can improve the quantity and quality of participation by empowering patients. We can easily search for clinical trials, and rather than waiting for our doctor to decide to make us aware of one, our community can. And we talk about it! Smart patients is innovating around ways to help the rest of the healthcare system learn from patients. Imagine working alongside doctors and researchers to design clinical trials instead of just being participants in them! We can help to advance the learning!! If you're a CF patient or parent or caregiver, join us on Smart Patients  and lets get ready to change the world.

Striving for Ordinary

(This post was originally shared on the Smart Patients Blog 5/13/14)

“Courage is never to let your actions be influenced by your fears.”  ~Arthur Koestler

Last week I was invited to participate in a meeting in NYC with some of the CF centers in the state. I’ve been traveling more lately than I had ever really intended to as a stay at home mom, sharing our story and journey from awareness to participation, contribution, and finally ownership. I had the great fortune to have lunch with another amazing CF mom, whose children are now in college.

She spoke about how back in the early 90′s, right after the CF gene was discovered, she had created scrapbooks for her children to chronicle the cure that was about to be found. She clipped headlines from the NY Times and Wall Street Journal, magazines articles and photographs about the cure that was right around the corner. She shared her intentions to rent out Veterans Stadium in Philadelphia when they finally announced that a cure had been found.

And then, even with all of that hope, blow by devastating blow the realization came that there might not ever be a cure. The novel treatments that they were exploring weren’t working. The gene therapy that had promised to end this instead ended the life of the first person that it was injected into. The excitement about the discovery of the defective CFTR gene slowly died, as did much of her hope. She ended her scrapbooks and put them away. She’s still fighting, but it’s a different fight now.

When I returned home from my two day trip, it was the middle of the night and I was exhausted. As I always do, I went in to the rooms of my sleeping children to kiss them goodnight before going to bed myself. As I pulled up the covers and touched his sweet forehead with my lips, I could taste cystic fibrosis. He was sweating in his Toy Story pajamas, and a little crust of salt had formed around his hairline. In fact as far back as 1857 a passage in the Almanac of Children’s Songs and Games from Switzerland warned that ‘the child will soon die whose forehead tastes salty when kissed’, an idea that was proven in 1953 when Paul di Sant’Agnese revealed the increased salt content of sweat in people with cystic fibrosis.

I got into bed and was unable to sleep, having just experienced a moment of real clarity. When I’m away, speaking at conference about cystic fibrosis, telling people that we don’t have time to wait, that my patience is not an option, I consider myself all consumed with this disease. But the reality is that these trips, these times away from my home, these are times that I get to live without the disease. I’m not administering medicines or listening for a slight change in his breathing or cough, fighting with insurance, or remembering to pack enzymes or hand sanitizer. I had considered myself to be completely engrossed in the disease when I’m willing to leave my family and take time away to share our story with others… but I was beginning to realize that these trips, subconsciously, were an escape from it.

It was a really humbling awareness, and then it hurt because I realized that I wanted to be away from it all the time. Not from him, but from the disease. I’m happy and energized and hopeful when I’m advocating. At home, I’m working all the time, frustrated and annoyed at how little control I have over the path this disease takes. I started to think about how my advocacy is perhaps providing important balance for me, allowing me to be a part of the disease while separate from it. While this is a healthy escape, the way that I wanted to escape again after kissing that salty head made me feel terrible. I love this family more than anything. I strive for ordinary, but the subtleties that make us extraordinary aren’t invited and add so much complexity. How can something that brings so much joy also bring so much pain?

Balance is important and it comes in many forms. Experiencing these emotions is helping me understand how I can achieve balance. I make it through my days with a humble awareness of shared humanity. While it feels good to run away, ignorance will swallow up the best parts of us. We are all fighting battles and we all need balance.