Postponed Again

We had to put off going to Mayo Clinic again because I’ve come down with some kind of creeping crud that won’t shake loose. So far I’ve had three trips to the doctor and two visits to the ER. The results of all that are, I’m sick, with some unknown virus. My heart is fine for now; the fever I had for four days didn’t help it much but it’s better now. I have a cough that’s something fierce, but it’s starting to get productive. Which brings me to my lungs, they sound like gravel. Because of the gravel in my lungs I’m now on antibiotics and an inhaler…SWEET! This only gets better and better.

I’m going to cross all my fingers and toes, say a prayer, and hope that all of this clears up enough that I can hop on a plane on March 6th and head out to Rochester, Minnesota.

The endless labyrinth that is Mayo Clinic continues to boggle my mind. I’ll be seeing another transplant cardiologist I’ve never seen before, this, I believe is the 8th one. I have a new Transplant Coordinator, but I won’t be seeing her while I’m there but I will be seeing my former one. And instead of seeing a doctor to answer some of my very specific and complex questions about heart transplantation in a Primary Amyloidosis patient, I’m seeing a “very knowledgable” heart transplant nurse practitioner.

My intention is not to be difficult, however I have questions I feel are being avoided and I’m struggling to understand why. What I do understand is my potential heart transplant could be more complicated than “normal”…if there is such a thing. I also understand that Primary Amyloidosis patients aren’t a measureable percentage of people who receive heart transplants each year; we are few and far between. The reality is most cardiothoracic surgeons who do heart transplants may never in their entire careers ever see a patient like me.

So for the love of all that is holy, I pray the folks at Mayo Clinic will finally answer my questions or at the very least admit they don’t know. I’ve been waiting months…put off in January, now put off again last week, so I’ll patiently wait until March. It’s not their fault I’ve gotten sick twice now, however some of the questions I’ve asked I did so nine months ago!

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