Darwin Belt

First post: May 23, 2018 Latest post: May 17, 2019
It's not often that someone who receives two organ transplants is considered lucky. Or perhaps someone like Darwin, who has undergone two successful organ transplants, is beyond luck: more than once, Darwin has been called a walking miracle.

Because of his previous kidney and pancreas transplants, Darwin's health is monitored very closely by a team of world-class doctors at Baylor Medical Center in Dallas. During routine office visits, it was noted that the protein level in his labwork was creeping up. Initially, the doctors thought it could be kidney failure, but successive tests over several months ruled this out.

In late April 2018, Darwin was diagnosed with Amyloidosis. If you've never heard of it, you're not alone. It affects only about 10 in 1 million people. What it means is that Darwin's bone marrow is making a protein—an amyloid—that the body can’t break down. This protein gets deposited in organs all over the body, especially on the heart and kidneys. It gums up the organs until they can no longer function, causing heart failure, kidney failure, and more.

The particular type of Amyloidosis that Darwin has, AL Amyloidosis, moves quickly. Catching it early means treatment is available. Fortunately, or perhaps miraculously, Darwin is in the small group of people who are diagnosed early enough to qualify as a candidate for treatment. In fact, of those 10 people who get Amyloidosis, only 1 or 2 are eligible for treatment. 

Medically speaking, Darwin is literally one in a million.

Treatment means an intense round of chemo followed by an autologous bone marrow stem cell transplant. Autologous means that Darwin's own stem cells will be collected and then transplanted, once the chemo has killed off the amyloid-producing cells. Darwin has been cleared for treatment by the stem cell transplant doctor at Baylor, and he expects to begin the process early in the summer. The transplant will require a 2-3 week hospitalization in an isolation unit. After that, he will continue to recover at home. He will be given a strict regimen for his diet and what he can be exposed to as his immune system rebuilds itself.

Kathy has retired from her nursing position at the ambulatory surgery center to resume her role as Darwin's personal nurse. He could not be in better care. We will provide updates on Darwin's progress and ways you can help through this page.

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