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.

1 comment:

  1. Erin, so sorry to hear of the frustrating, long wait! I, too, nearly had to wait 8 months for a follow-up appointment with a neurologist for my head injury -- after I was asked to return in 6 weeks. I'm often perplexed myself that I'm steeped in work to help make this experience easier for a patient to navigate, yet I have trouble myself doing just that -- sometimes I even find trying to work with a new specialist in a collaborative manner to be infuriatingly difficult. You're certainly not alone!