Hello there...my name is Jill and I have been on hemodialysis since April of this year. This is my "kidney story":
My kidney disease was discovered 16 years ago when I was pregnant with my son. I was spilling protein right from the get-go at my prenatal visits, but other than that didn't have any problems until about 7 months into it. At that time, my blood pressure started getting very high, and 2 weeks before he was due I did a 24-hour urine catch and they discovered m kidneys were in serious trouble. All of this I know now, but at the time no one really told me what was going on. My son was born by c-section the very next day after I did the urine catch. He was healthy, and has always been healthy. My OB referred me to a nephrologist, who did a kidney biopsy 5 months later (Nov. 1990) and I was diagnosed with FSGS (focal segmental glomeral sclerosis).
My nephrologist became my primary physician, which as I look back was the best decision I could have made. For many years the only medications I took, besides vitamins, where a couple of blood pressure meds. My kidney function was around 30% for about 12 years, and quite frankly I never really understood that the disease I had would cause ESRD. I have had serious discussion with my doctor about that...so often if you don't ask the questions they don't give you the information.
Anyway, in early 2003 my doctor wanted me to attend a class in his office about diet and dialysis and I FREAKED OUT! I honestly didn't know it would come to this, although my function had gone down to 15% (from that time on I made sure I always got a copy of my labs.) I decided to get an evaluation for a kidney transplant in Nov. 2003, and my sister was found to be a "perfect match" in January of 2004
. My function was still good enough that I did not need dialysis, so my doctor said to wait on the transplant until the time seemed right. My goal was to get the transplant before I had to do dialysis...my feeling was that if I started dialysis, then I would be considered "sick".
In early 2005 my doctor felt we should plan the transplant within the year. My sister and I checked our schedules and a surgery date of Aug. 15 was set. The week before surgery I went in for my pre-op appointments, and at 4:30pm on Friday (3 days before checking in to the hospital for transplant) I received a call that some last minute lab work showed that I had a high level of antibodies against my sister's tissue that could very well result in rejection. I was devastated initially, but then was very grateful that the doctor had caught this. He told me that I should try to find a new donor, and I was fortunate to have several people come forward to be tested, but I reacted to everyone's tissue that they tested.
Since the surgery was "in the air" , and to prepare for the possibility of dialysis, I had surgery for my fistula on Halloween 2005, which really wasn't a big deal but I think it would have been nice to have at least seen a picture of someone's arm that had a fistula. I thought people would think I tried to slit my wrist if they noticed my incision!
In November 2005 I learned that Mayo Clinic was doing transplants on people like me and were having success. They called it a "positive cross-match transplant". I went for an evaluation in February and was considered a good candidate for the surgery and shortly after it was confirmed that my sister was again going to be my donor (check out Mayo Clinic's website for more info on this amazing surgery if you are interested.) Surgery was scheduled for Aug 9. However, my function was down around 8%, and my potassium, phosphorous and PTh were so out of whack that I started dialysis in April. It has not been the most pleasant experience, but I also think it is not the worst thing in the world either (of course, I haven't been doing it long and I only have to go 2x a week a run for 3.5 hours.)
I continue to do dialysis because 3 days after I arrived at Mayo Clinic a month ago I learned that I had been exposed to the virus that causes mono (Epstein-Barr virus), and I have never had the virus so they did not want to shut down my immune system if I were developing the virus. So, my transplant has been postponed until December 5th. The biggest disappointment, of course, was having to go back on dialysis, but at least I have the transplant to look forward to and i hope it all goes well.
There are some things I would like to say for others out there that have been diagnosed with FSGS. I truly believe that having my nephrologist as my primary physician was a big benefit, as he was able to monitor my health closely and also was the only doctor who ever prescribed any medications for me. I would see him even if I had a cold or infection. Just recently I discovered that many nephrologists put patients with FSGS on prednisone to slow the process. From what I read, this does not seem to help much and it appears that the side effects can be very unpleasant. I am so thankful that my doctor never took that route; I have lived a very normal and healthy life up until the last year or so - 16 years! My biggest problems have been fatigue and, before I started dialysis, occasional days with flu-like symptoms. Since I have started dialysis I really feel good. I work full time (+), have 2 teenagers, a husband, play golf, and have many girlfriends that are fun and supportive. I can only hope that I feel this good post-transplant!
I hope this story has been helpful and hopeful for someone out there!
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