Where will this ATTRwt amyloidosis journey take me?

Howard Covel

Where will this ATTRwt amyloidosis journey take me? I like to travel; however, this trip was not planned or wanted!  I wonder a lot about the journey I am starting, so far it has been OK.

In 2017 I had an angiogram that my cardiologist described as being a little weird and she said she would keep watching it. Yearly visits and EKG’s were done, but nothing showed any abnormality. In the Spring of 2019, as I was trying to spread fertilizer on our lawn, I could only walk a few minutes before becoming very tired. At about that same time, I was experiencing shortness of breath on little exertion. My wife made my appointment with my PCP as I insisted it was nothing and it would go away. The doctor ordered an ECHO, then an angiogram, nuclear stress, and other tests. At that point, I was diagnosed with Wild-type amyloidosis and I asked, “what in the world is amyloidosis?” The answer was a very rare and fatal heart disease. WOW, that shook me and my mind went crazy as I thought of all the what-ifs ahead. Where did this come from? When did it start? How long do I have to live? On and on my mind went. Friends tell me that they knew it was the wild type as I am the wild type, not true. I was 78 when diagnosed, so how wild could I be?

 When I had a follow-up appointment with my cardiologist she said, “I know nothing about this disease, you will have to go someplace else”. Doctors need a lot more education on this disease as few have much knowledge of it. I researched online and chose the Cleveland Clinic in Ohio due to the distance from our home, insurance, and their reputation in the research and care of patients with this disease. I have severe amyloidosis, but the good news is that there is now a medication called Vyndamax that can slow down the progression of the disease.  It was approved in May of 2019 and I started taking it in October. Is it working?  I won’t know that until my next visit in October 2020, I have more tests and get the results. I did have bilateral carpal tunnel surgery about 20 years ago. I think about if this disease could have been starting way back then. I take diuretics to keep fluid from building up around my organs. Salt is a no-no, but we have found lots of good no salt foods even no salt potato chips. No salt in cooking, at the table plus NO processed foods allowed in our home. We now find food at restaurants or family gatherings too salty for us. Surprising how quickly we got used to no-salt, except that found naturally in foods.

I walk about 20-30 minutes a day and wish I could walk more. I have osteoporosis that prevents the long walks I would prefer. I stay active caring for our home in Florida in the winter and New York in the summer months, where I enjoy fishing. Church activities and volunteering at a hospital are important to my wife and myself, and puzzles are a fun pastime. My doctors at the Clinic in Ohio and Weston, Florida agree that if the Vyndamax works I could have 5 years left to enjoy, however, if it doesn’t work I may have another 11 months to 2 years. The amyloidosis disease is compounded by the fact that I have Type 2 diabetes. Currently, my diabetes is very well controlled. I understand that many medical conditions could take my life other than amyloidosis. I don’t waste a lot of time stressing about it. In the meantime, I feel good except that I tire easily and welcome an afternoon nap. The journey may get rough in the future, but for now, I am thankful for each day and I try to live it to the fullest. I pray that researchers will find a medication to stop or reverse the disease progression for future patients. Life is good.

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