Here is an update about my situation placed behind spoilers, as usual, for those that would like to know. You won't like what you are about to read.
[Show spoiler]I had four appointments over the last 8 days of August (and I already have five for the month of September so far). The most consequential of these was when I saw my cardiologist on August 23rd.
We discussed whether or not I was a candidate for a heart transplant. He told me that I was not and that the transplant team had already rejected me months ago. He went on to tell me that my heart disease is already too far advanced and that there was too much damage beyond the heart as well, namely in my gastrointestinal system and in my autonomic nervous system.
He told me that all that can be done is to try and manage my symptoms and to slow the disease's progression, but progress it will. He told me that despite these efforts I will feel worse and worse and that the disease will advance until I finally die.
He did not want to give me an estimate of time. He told me that if there is anything that I wanted to do, do it now. When pressed he finally said one year, maybe two years, tops.
His nurse was less optimistic; she said it would probably be half of that.
Near the end of the visit my doctor said that he would ask the transplant team to take another look at my case, but that he did not think that they would change their verdict. He said that he would schedule another cardiac MRI later this year to compare with the one done in March. That one was really bad and this retest will tell us exactly how much worse things have become.
My bloodwork showed some big improvements in my Pro B-type naturietic peptide and in my troponin levels, but they were both still way too high. He said that the results would not change my treatment nor the inevitable outcome of my disease.
I will continue my treatments and I will do all that I can, but it seems that I am fighting a delaying action. I am now wearing a medical alert bracelet to let local doctors know that I have this rare disease. Only 3500 people in the U.S. have my diagnosis as of 2021 and it is largely unknown even in the largest of cities.
I am still coming to terms with this news. I have known for a long time that this disease was fatal, but I had retained the hope of a heart transplant as a last resort. That final, last chance, hail Mary hope has been taken from me now and it has driven the finality of the situation home.
I can tell you that I will fight this as hard and for as long as I can. You already know from my long winded post history that I don't know when to give up. Thank you for caring enough to read all of this. I enjoy my time here with you.
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