Working Out The Kinks

Getting all my doctors, prescriptions, appointments, test results, medical records, etc. all wrangled up could be considered a full time job to some, it’s felt that way to me at times. I can’t be complacent in my health care, I have to advocate for myself which has meant being confrontational at times and making it known to my health care providers how I feel about the level of care they’ve provided.

I have a long list of doctors all with specialties…Cardiology, Electrophysiology, Gastroenterology, Hematology, Nephrology, Oncology, Neurology, Primary Care, and those are only the doctors in the city I live in. Factor in a whole team of doctors that work together as a transplant team at Mayo Clinic, and the number of doctors I see on a regular basis is in double digits.

After months of frustration I had to take control this week. I had to remove one of those local doctors from the list due to what I felt was a lack of understanding on their part of the seriousness of my condition and the fine line I walk between life and death every day. It wasn’t an easy decision to make because I don’t think they’re a bad doctor, I simply believe I’m outside of their depth of knowledge. I live in what most people would consider a small town, however, given the state we live in it’s one of the largest cities. The medical care available here is limited at best. That’s not to say we don’t have some outstanding doctors we simply don’t have enough of them.

So as of today my prescription cocktail has changed again, blood tests every two weeks have been ordered, and I finally have my local doctors working together and from the same page. It feels like it’s taken forever to get them all to stop worrying about stepping on each others toes and start worrying about the health of their patient.

I took a count of the prescription medication I take every day…14 different drugs, and all in, 30 pills a day spread out, morning, afternoon, and evening. At any given time that number can change and in my experience over the last 4+ years they will continue to increase.

So I worked out a few kinks this week. Hopefully I didn’t create any ripple affect that will cause problems later. I don’t think I have, but that remains to be seen…

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