From MPGN, to remission, to transplant, to paralysis, to dialysis, now home
In 2001, when my wife was 63 her legs swelled-- went to a doctor and it was eventually established that she had Membranoproliferative glomerulonephritis. There are three "types" of this disease and I don't remember which one she has but it is the one that is mostly found in children. One doctor told her she was one of a handful of adults that had it.
She wound up under the care of one of what was then a leading expert on the disease and he put her on cellcept. There were ups and downs during the diagnosis and trials of other therapies, but cellcept worked and she got nearly eight years of remission. We both retired during that period and wound up taking wonderful trips to Africa, Europe, Central America, and the Western part of this country. I retired at 62 as we both realized the seriousness of the disease and wanted to take advantage of the remission.
The doctor was now talking about a kidney transplant and dialysis. My wife had issues with both as she felt a 70 year old should not take a kidney that could be used by a younger person. She also seriously considered going into hospice if she went on dialysis.
The transplant won out as three of our children offered to be the donor and they made it clear they were not going to give a kidney to anyone else.
She had the transplant about two years ago and the first month went well with great numbers and a fairly fast recovery. However, she got a kidney infection and was back in the hospital for a fairly long stay. Concurrently, there were issues with cellecpt now being used as one of the transplant immune suppressant drugs. A switch to rapamune was mandated and it decimated her—requiring blood transfusions and the like. She got out of the hospital weakened.
What may have been another drug related problem reared its head when she was diagnosed as having hypertrophic cardiomyopathy. Prograf (one of her essential anti rejection may be the culprit as it has caused the disease in kids. The symptoms were that she developed shortness of breath and heart pressure after the transplant. That medical issue remains unresolved.
Shortly after getting out, we learned that her Membranoproliferative glomerulonephritis had attacked her transplanted kidney. They tried retuxon and a drug called eculizumab all to no avail. There was some talk of trying cyclosporine, but my wife refused and I think the doctor agreed. It was clear her only options were dialysis or hospice. After a great deal of thinking, talking with doctors, talking with palliative care, and talking with family she decided to give dialysis a try. The doctor wanted to take out her native kidneys and she was scheduled for an ablation procedure which was changed to an embolization procedure—both would effectively take out the kidneys by cutting off the blood to them. No plans were made for her to go on dialysis after the procedure as they thought the transplanted kidney although damaged would work sufficiently.
They were wrong as she came out of the procedure with renal failure and was basically comatose for three days. On the third day, she woke and tried to get out of bed and learned she was paralyzed from the waist down. The embolization had cut off the blood to her kidneys, but also to key parts of her spinal cord.
We had some very dark and tough days, but eventually she decided to go to rehab and after a lot of thought give rehab a real try. We are now home, we have renovated the house to make it handicapped accessible and we are still together. We have had over fifty years together, are vey much in love, but I never knew how much “grit” this wonderful person has--and we both feel fortunate to still be together.
Edited May 13, 2013 at 2:12 pm
Daniel P Richardson