At the age of 50, Fred was diagnosed with cirrhosis of the liver (not the kind from alcohol) and he was being treated without any talk of a transplant. But in December 2004, Fred went into renal failure and was rushed to hospital on Christmas Eve and was put into an induced coma. He needed a liver transplant.
Fred's wife Marilyn (not their real names pending a lawsuit) explains how it happened—a miracle that turned into a tragedy.
"It was a Christmas miracle; a liver was supposed to go to a hospital in NYC but due to a snowstorm, Fred got it instead," says Marilyn. "The transplant was successful and Fred was doing wonderfully. He developed a rash on his upper arm and buttocks and the doctor said it was probably from being in bed, but nobody gave it a second thought. The rash got worse and developed into open sores but the transplant team said it was just bedsores.
Fred couldn't stand up and the doctors couldn't understand why not—they couldn't see past the liver transplant. His knees were locked; they were stuck in one position. But concern about his edema trumped these symptoms.
All transplant patients are brought to rehab and we were there for three months. During that time, the sores got worse and his pain was terrible; it wasn't transplant- related. 'Something is wrong', Fred kept saying. Finally I insisted that dermatology be called in; I wasn't buying the bedsore diagnosis. Luckily we had a wonderful resident physician. She did a punch-hole biopsy and thought it was Calcinosis cutis, calcium deposits in his skin. By this time both his arms were so bad he looked like a burn victim.
I looked up Calcinosis cutis on the internet and it linked to an NFD website by a research pathologist who founded the disease. There were pictures of exactly what Fred was suffering from and accounts of three liver transplant patients suffering from NFS/NFD. (NFD has been changed recently to NFS—now that the medical community realizes it is systematic).
I took all this information to the transplant hospital and gave copies to everyone I could think of. They said Fred didn't have NFD/NSF. But I read that a deep-seeded biopsy (which goes way into the tissues) is required to diagnose this disease. They wouldn't do it.
Fred was released in March. 'When his edema subsides he will be OK and able to walk again,' the doctors told us. I couldn't even get him up the stairs to our home and we ended up staying in a motel, all the time thinking it was temporary; that we would get through this. But within two weeks, he was back at a local hospital. This time we were able to get the biopsy and a neurosurgeon was called in.
The biopsy results came back a few days later: the doctor said I was correct in assuming that Fred had NFD. He immediately contacted the NFD specialist and when Fred was released, we went to Yale New Haven hospital, under this specialist's care.
By April, his ankles and toes were also contracted like his knees. The specialist said the golden treatment for this disease was photo-pheresis, similar to dialysis. Fred had treatments four hours a day for two days and every three weeks afterward.
His knees started to improve but not his ankles or feet. And his skin has gotten worse. As for the prognosis, there is so much research being done but so far, there aren't any answers. And Fred's treatment reached a plateau. It took part of the pain away but he didn't get better. And he got four blood clots—NSF makes you so susceptible to blood clots because you can't move.
Fred is now 54 and he has been suffering for the past four years. I can't tell you how difficult this has been financially; the actual medical problems that go with this disease are immense, let alone the psychological ones. A dermatologist we know suffers from NFS and he described it to Fred: 'When you go home at night and want to stretch and relax, we can never do that; we can never relax any of our body; 24 hours a day, every muscle in your body is tense.'
Fred had three MRIs: one was pre-transplant and two were post. Each time he had the gadolinium-based contrast agent injected—our attorney has the medical reports stating that he was given this chemical. What makes me cringe is that if he had been diagnosed earlier, Fred likely would not have received the third injection of contrast agent. In other words, while he was suffering from NFD, Fred was given even more gadolinium. That is when his ankles and toes contracted. I can't think about it because I just get too upset…
Although the transplant hospital saved his life, they took away his quality of life. The pain issues of NSF are constant. His skin is getting worse and it feels like burning all the time. This disease is very scary because not enough is known but we are lucky to have great doctors.
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Fred and Marilyn have filed a lawsuit against the contrast agent manufacturer. Marilyn says the judge is currently pushing for a resolution (whether it goes to trial or settles out of court): because this disease is so progressive, some of the plaintiffs have already passed away. "A lawsuit is Fred's only hope; we can't even afford a handicap vehicle so just a bit more quality added to his life is all we ask," says Marilyn.
If you or a loved one had a MRI or a MRA, and a contrast dye or agent was used to enhance the MRI image, and you or a loved one developed NFS/NFD, skin tightening, severe joint problems, kidney failure or renal failure, you may want to seek legal help.