After a long hard road – I still have hope (hATTR amyloidosis)

The story of Chuck

My symptoms from ATTR-FAP started when I was around 60. I was having trouble with diarrhea, nausea, and vomiting. Over the next 30 months I would say all those symptoms tripled in severity. During that same 30 months, symptoms of neuropathy in my legs and feet got so painful that I had to go on strong pain relievers which helped some, but not much. I was getting leg cramps that were unbearable like nothing I had ever had before. However, the big worry was I was steadily losing weight. In my family once that starts and continues that long, no one ever recovered. They just kept losing weight until they were less than 100 pounds and passed away. Along with all this I was getting weaker and very tired and many times I just didn’t feel like I wanted to be around anymore. Quite frankly, I felt like I was dying of the worst flu you could imagine. Plus, with all the pain in my lower extremities it was a real struggle. I had lost my job of 44 years which was a real blow for me, but I didn’t blame them as I was missing tons of work.

Just after I turned 63, I called the Mayo Clinic in Rochester, MN to sign up for a clinical trial. An appointment was made for August 11th 2014. It was quite an experience with all of the biopsies I went through, plus all the neuropathy and heart tests; and what seemed like giving them 1,000 vials of blood. I had to stop many of my tests in the middle because I got so sick, and that didn’t get much better for the first eight months. During those 8 months I made 15 trips and was there a total of 52 days including travel days. But then at 9 months the weight loss stopped and my neuropathy seemed a little better and the autonomic systems eased up some.

I still have my moments and I still get pretty sick sometimes, but I feel I’m doing much better with all of my symptoms. It has been a long hard road. But now, after all I have been through I can tell you how I’m feeling at this time. I am proud. With so many family members that have this disease, including 2 of my 3 sons and probably some of my grandchildren, I am so very excited and honored to be part of something that gives everyone hope. I also would like to thank NORD for their complete support. I actually could not have done this without them.

My hope is that no one will have to get as sick as I did, or at least be able to slow the rate of the disease so we can live out a normal life.

Connect with others living with Amyloidosis – RareConnect.org