Wednesday, April 23, 2014

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.

Saturday, April 5, 2014

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!