We’ve been in Rochester Minnesota at Mayo Clinic since Monday. Tuesday and Wednesday were scheduled to the max and I had one appointment after another. By the end of Wednesday evening I had been stuck a grand total of eight times, either getting multiple injections for various reasons or having blood drawn. To say I felt a tad bit like a pin cushion would have been an understatement. Really Thursday was the big day, that was when I had to go into the hospital for my fifth heart catheterization. The cardiologists in the heart and lung transplant department fully expected my heart to be in worse condition than it had been in July and October as did we; we were told to expect it. In all reality my heart should be getting worse.
Because of my Primary Amyloidosis, I have amyloid buildup on my heart. It causes my heart muscle to not expand and contract as it would normally. I was diagnosed pretty close to stage 4 of the disease so the buildup on my heart was/is significant. I went through five rounds of chemotherapy and an autologous stem cell transplant (basically a bone marrow transplant with my own bone marrow) and I have been in remission since April 13, 2016. I was told very emphatically not to expect any recession of the amyloid on my heart. Although it was possible, it was highly unlikely.
A year after my stem cell transplant, April 2016, an echocardiogram was performed to measure the thickness of the amyloid on my heart and at that time there was no recession. Disappointing, but not surprising. Another echocardiogram was done in July, 2016 and again no recession. We hadn’t expected anything different.
Now we’re into March 2017 and I have yet another echocardiogram and this time, recession. I have a heart catheterization the next day and the cardiologists conclude that my heart function has actually improved since July and I no long need the extra medication (inotropic therapy) they anticipated I would need to get me by until a heart became available for transplant. As a matter of fact, I don’t need to be listed for heart transplantation at all at this time because as of right now, it looks like my heart function may be improving.
Of course they can’t give us a reason why because they simply don’t know enough about the disease yet. But we’re going to take this positive news and roll with it for now.
I’ll come back to Mayo in three months for another check-up by the heart and lung transplant team, and they will continue to keep an eye on me every quarter. We hope that my heart continues to improve and heal itself over time and I stay in remission. With any luck, there will be new drugs developed in the near future to help eliminate the amyloid on my heart. There are currently two clinical trials going on for drugs that do exactly that, one of which is looking very promising. Although it’s not a cure, they are at least getting closer to a treatment for Primary Amyloidosis with Cardiac Involvement.
Right now I’m thankful…thankful for all the prayers and well wishes. Thankful to my family and friends who has been helping me get through all of this, because, let’s keep it real, it’s been hard at times. Thankful to the doctors and nurses who have cared for me over the last five years. But most especially I’m thankful to God for giving me this chance to live a purposeful life, I won’t waste it!