Share your perspective on PML clinical trials

The monster that took my husband

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My husband had a successful liver transplant on July 31,2020. Ten days later he was dancing in the hospital. The ICU nurses called him a "rock star" because he was extubated and out of ICU in less than a day. All was going well and we were released from the transplant center on Sept 4, 2020 to go home to Indiana. We were excited about our future. Then on Sept. 26, my husband told me he thought I was still sleeping when I called him from work to tell him I was going to be late. That was the first sign I had that something wasn't right. 4 days later we drove back to Wisconsin for a follow-up. At that time my husband was able to answer all the questions..(DOB, address, SS number, Date and day of the week.) He got slowly more confused and on Oct 8 I drove him to his Chicago Hospital where he continued to say he was fine and I was the one that was confused. He was transferred back to the transplant hospital a few days later. He was finally diagnosed with PML on Oct. 24. and 10 days later (Approx 5 weeks after the first sign of anything being wrong) my husband passed away from liver failure due to the anti rejection drugs being stopped because of PML. I had never heard of PML, the nurses on the transplant floor said they had to Google it also. My children and I were desperate for any clinical trial or anything that could give us any kind of a chance, no matter how small the odds were. Unfortunately, there was nothing available to us, No hope of any kind. So, Yes, I would have done any clinical trial to give my husband a chance at a life we deserved. Instead, he came home by ambulance, from Wisconsin, to die at home in my arms and surrounded by our children.




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Idea No. 111