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.

Knowing

I put so much energy and effort into sharing my position on the value and importance of including patients as partners, and there really isn't a way for me to know the impact that it has. Every once in a while, usually when I'm feeling tired or defeated, I get a note that serves as a reminder to just keep swimming.

I received this note from a member of the leadership team at Roche after returning from the meeting that I attended in Switzerland as a member of their innovation advisory board.

"I think one big learning we all took away at the meeting is the sharing of patient stories and experiences made a huge impact to all of us. It is no longer acceptable nor ethical to treat patient view as optional at our clinical development stages. Thank you for sharing Drew's story which provides so much meaning to what we do day in and day out."

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Be Brave

"Courage: You have the heart of a lioness; an innate fierceness that helps you to never back down. You know what fear is, but you refuse to cower before it. When faced with adversity you don't turn tail - you ROAR."

Innovating for Hope: My trip to Switzerland!

"Some stories are meant to be told. You may not know how important they are until the stars align in such a way that leave a constellation in the sky. The more stars that join the constellation, the further it stretches across the celestial sphere, incapable of being ignored by those who look up."

I met stars in Switzerland, and I assure you that before too long, you will see a constellation. I’m not sure how I articulate what I've experienced over the past few days. I was in Switzerland, and I’d been invited to Roche, the company who owns Genentech, to be on an External Advisory Board focused on innovation. I received the invite just about 4 weeks ago, and we made the quick decision that this opportunity was one that I could not pass on.

I wasn't sure what to expect upon my arrival, after a nice flight in business class with good food to eat and full sleeping accommodations. Who was I to them, to invest in me without even really knowing me? Would I meet their expectations? Would they meet mine? Did it matter?

We had some time on the first day to get to know some of the others on the team, both internal and external. These times, unstructured opportunities to share stories about where we came from and why we had traveled here together, these turned out to be some of my favorite times.

As the meeting began, Roche shared a little bit about the work that they’re doing and hoping to do, providing the premise for our involvement. They had different industries represented, different stakeholders within the health industry, there were patients and patient advocates , and they were all impressive.

Having gone into the meeting already impressed with their vision and strategic initiatives, we were broken into teams and given a hat to wear – doctor, payer, regulator, pharma, patient – and challenged to create a solution for the future. Why should Roche be focused on innovation? What was the overall goal? And what do they need to do to get to where they need to be? Then talked about all that we had created, as a whole group, allowing time for everyone to provide feedback. There were bankers and doctors and insurers and representatives from the oil industry and patient advocates and representatives from healthcare organizations around the globe. I had so many “Ah-ha!” moments, when someone would share an idea or opinion and I would think, “Man, that is SO right!”, and then moments later hear someone challenge their position and think again, “Man, they are so right!” The value that I saw, that really became clear to me, is that collaboration is the only option. We need to be able to steal shamelessly and share seamlessly ideas from other industries, from partners and competitors, and really innovate iteratively for what patients need.

As the meeting progressed, my purpose became clear. They talked about their products, and not the people who use them, and I was there to let them know why this really matters, that there is life relying on them. The people who work there all came to the table, with clear eyes and full hearts, having made a choice to do what they do, hoping to make a difference in my life. They’re innovating for hope, and sometimes that's all that I've got. I appreciated the different perspectives that were brought to the conversations, as I believe that collaborative thinking is the fastest way to innovate.

Navigating this system

A few months ago, I had shared on here that I had a little incident that put me in the hospital for a few days and resulted in the discovery of a hole in my heart, called a PFO. I was put on some medications and referred by the hospital to a cardiologist for a priority visit. Well, that priority visit happened today, more than 2 months after my hospital admission. We're basically trying to determine the significance of the hole and whether or not there is another issue going on that would require me to stay on medication, or if a baby aspirin would suffice.
The cardiologist that I saw today was, in my book, a pretty good doctor. He listened to my concerns, answered all of my questions, and referred me to a neurologist to determine the significance of the "neurologic event" that took place back on Feb. 14. Some think it was a TIA. Other's think it may have been an actual stroke, as the symptoms persisted for a few days. Today's doctor suspects that it was an atypical migraine, based on the fact that nothing showed up on the MRI or CT scans, or at least that's what the report from the hospital said. His suggestion was to obtain the actual scans done in the hospital and take them to a stroke neurologist to check them out, and if he thinks there was no stroke or TIA, ask him to refer me to a migraine specialist. In the meantime, continue to take your medications, which he doesn't think I actually need to be on, and once the neurologist confirms or deny's the occurrence of a neurological event, we switch to baby aspirin and just keep on keepin' on.  And then he prescribed an app! That's right, he wrote me a prescription for an app called AliveCor, an EKG heart monitor that attaches to your iPhone. He said he's never used it before, but it seems promising and would be a good way for us to keep an eye on things and could help to determine if, in addition to the hole, I also have a rhythm problem.
Because waiting two + months for an appointment with a cardiologist following a event that landed me in the hospital for 3 days wasn't stressful enough, today I had to call a neurologist to schedule an appointment for him to basically just look at my scans. The first available appointment that they have, with any doctor, is August 28th at 3pm. That is FOUR MONTHS AWAY! If this wasn't frustrating in and of itself, the cardiologist and I both had assumed that it would just be a short period of time that I would remain on the medication that they had put me on in the hospital, but now I have to stay on it for another 4 months when we don't even know if it's doing anything for me. On top of that, the hypothesis seems to be that this doctor will look at my scans, corroborate what was said in the hospital, and refer me to a migraine specialist. I wonder if I'll live to find out what actually happened in the hospital back in February!
I consider myself fairly well versed in medical bullshit, but I still can't figure out why it will take 6 months, on a medication that I very well may not need that comes with it's own risks and side effects, before anyone can tell me if I need to be taking it. I had the good sense to call "Medical Records" at the hospital that I was admitted to when the appointment that I had today was scheduled (Feb.21) and I STILL DO NOT HAVE MY SCANS! There is no one that you can speak to, you must leave a message, and after the friendly exchange of a handful of messages, I think she gave up. Funny how I call for my records when I'm available, and when the hospital returns my call, at a time that is convenient for them, I'm unavailable. Who was this system designed for? It certainly does not seem to be helping to make people well. I wonder if there is a correlation between mental health and number of interactions that one has with this horrid system.
Through the work that I've been doing at Cincinnati Children's for the past couple of years, I've been finding and building new systems and tools that will help patients to navigate through this system with greater ease, and also help doctors and researchers to focus on helping patients stay well. Now that I'm traveling through it personally and dealing with body systems that are mostly unfamiliar to me (I'm a lung specialist and know very little about hearts and brains!) I feel a little bit like I'm at the mercy of the system and I'm not okay with that.
I will call and fight and remain annoyed by the fact that I have to do so, and if I don't get to the neurologist before August 28 then I don't, but at least I will have tried. But what about the unempowered? What about the passive patients who don't know that they can speak up and fight back and make phone calls and ask for what they deserve? It's not really fair that they should have to. After all, they're the ones already dealing with the extra burden of a disease or unwanted medical condition in their life. In the meantime, I will keep working to bring awareness to the fact that this system is not working, not for anyone, and there are solutions, that if worked on together, can improve health and care.

Live your dash

We spent the past 3 days in Washington, DC advocating on Capitol Hill for CF awareness and funding, or hope as I sometime call it, and joining other CF families to celebrate all that we've accomplished and learning about what we need to do next. It isn't often that CF families get together, as for a CF patient one of the biggest risks to your health is being around another CF patient. But when we are together, the parents and grandparents and friends, there is magic. The laughs and the tears and the hope! Oh, the hope. I have met some truly remarkable people over the past few days and I'm happy to be able to call them my friends. I know that no one wants to be on this journey, but I know that we will remain by each others side until we beat this.

I think that one of the most humbling things for me to experience at this meeting, now for the second year in a row, is the continued support of those who have experienced loss at the hand of this disease. Those parents, just like Martin and I, who dedicate our lives to saving our kids, doing whatever it takes, shoving those square pegs into round holes and creating hope any chance we get, and yet they weren't able to save their child. They show up with smiles on their faces, giving speeches and awards, hugging friends and fighting. These people have continued to fight for my son even after losing their own, and there is nothing on this earth more humbling than their camaraderie. It's brings to life the harsh reality of this miserable disease, that there still isn't a cure. The people who attend this conference every year have one very important thing in common: hope. We have such tremendous hope for the future, for our friends and our families, that they can and will win this fight.

I wanted to share a song that a group by the name of Branch & Dean sang during our dinner reception on the first night. The song is called "The Dash", and it was dedicated to the singers son who lost his battle with Cystic Fibrosis just last March at 23 years old. If these aren't words to live by, whether your life has been affected by a chronic illness or not, I don't know what is. I implore you to listen, and to live your dash.

With the lyrics to that song fresh in your mind, take a look at my Storified version of the 2014 Cystic Fibrosis Volunteer Leadership Conference. I'm making the most of my dash!