I can tell you that after this visit to Mayo Clinic, if I ever hear another medical professional utter the words, “your case is very complicated,” my head might just pop right off my shoulders! Really? It’s complicated? Yeah, I’ve known that for the last three years, I’ve lived it, but thank you for reminding me for the millionth time; I may have forgotten.
I don’t want to say that this 3 month check-up visit was a waste of time because it wasn’t, it was just very frustrating. Frustrating to the point that I’ve had to ask myself, why am I doing this?
The reality is that I’m dying, faster than the average person, but slower than the “normal” heart failure transplant patient, but my case is “complicated”. I dream, pray, and wish my heart to get better, but it’s not going to. The damage is done and there’s no going back.
So I see a few doctors, some of whom actually listen to me, some who chose not to, or rather, appear not to. They make a few medication changes (BARF!) suggest a few more, then send me on my merry way. Never actually addressing or attempting to find a solution to the new issues, symptoms, problems, I’m having.
Then to wrap up the whole adventure I’m told that UNOS (United Network for Organ Sharing,) the governing body that sets the rules for how patients are placed on transplant lists and how organs are dispersed, is going to change the rules at the beginning of the year. It’s not clear if the new Adult Heart Allocation System is going to work in my favor or not. It does at least address Amyloidosis specifically, but how the hearts are going to be allocated is still a little unclear.
Looks like I’m back in the transplant bubble again…not my favorite place to live, but I think I can hang here awhile and chill.