|
This
is Kevin's Story
My story started out similar to many of the other personal stories you read about FSGS. Periodically, I would get swelling in my face in the mornings. When the swelling became more frequent my parents became concerned and took me to the doctor. Tests showed that I was spilling a lot of protein in my urine. They referred me to a nephrologist, I went in for a biopsy and I was diagnosed with FSGS. They tried steroids and other medication combinations that didn’t work. Early on I knew that I would eventually need a kidney transplant. That said, before I needed the transplant my life was close to normal. I played sports all year round participated in whatever I wanted.
In December of 1995 my brother, Matt, donated his kidney to me. It was one of the most exciting times of my life Even though I eventually lost it to recurrent FSGS, I still look fondly upon that time because it felt like the whole world was in front of me. After the FSGS returned I went through many plasmapheresis treatments. Plasmapheresis is where they take the plasma out of your blood and replace it with albumin. I did these treatments twice a week indefinitely for over a year and it stabilized me; however, they started to wear me out mentally and physically. Eventually, the FSGS destroyed my brother’s kidney which was hard on my whole family because the kidney was a perfect match and we all thought it would last forever.
I went back on dialysis for the second time when I was 19. I quickly got on a few regional lists. We thought the kidney not being blood related would lessen the chances of the FSGS returning. The University of Iowa called me in April of 2000 and said they had a kidney for me. My parents and I got in the car and drove to Iowa where I received my new kidney the next day. It took a while for the kidney to wake up but when it did I started spilling massive amounts of protein—the new kidney quickly started to lose function and a little over a year after I received it—when I was 21—I was back on dialysis again.
I was pretty upset about my situation but I went on peritoneal dialysis which made me feel much better. My great achievement was accepting the unfairness of my health situation and not dwelling on it. I was finally able to leave the past behind me. I started working again and took college courses as my time permitted. I forgot about getting another transplant for a while because my life on dialysis had me feeling good and overall pretty healthy.
Unfortunately, I got peritonitis a few times and had to go on hemo dialysis which was a difficult transition. That said, I was one of the first people in Illinois to do home hemo dialysis and that gave me much more freedom. It was nice not having to go to a hemodialysis ward but more so it kept me very healthy and was much more conducive to my everyday life.
I received my third kidney on October 21, 2006 and my creatinine is currently 1.2. The kidney was a perfect match and I started to urinate instantly. Although my kidney function is excellent this kidney has not been an easy ride. I was diagnosed with recurrent FSGS a few months after my transplant. I attribute my success to being absolutely proactive in my treatment and having a doctor who is aggressive in going after the FSGS before it gets out of control.
Before I received the transplant I read a study about how doing one plasmapheresis treatment before my transplant and nine after could decrease my chances of having an aggressive relapse. Getting the plasmapheresis beforehand was no easy task but I was adamant about getting it. While we can’t be sure that this approach helped my long run of having a low protein level in my urine, the fact is I lost two kidneys because of recurrent FSGS and wasn’t going to approach a third kidney transplant using the exact same approach as the previous—expecting a different result. It’s true that there are no definitive treatment regiments when it comes to treating FSGS with plasmapheresis, but I needed to know that I was doing all that I possibly could.
Periodically, my urine would get up to two or three grams a day and I would do a course of plasmapheresis. The plasmapheresis would bring the level down and then shortly after it would start to rise again. During this time I started taking a six month course of Cytoxan through the NIH. We don’t know if it was the Cytoxan, the courses of plasmapheresis or the way the wind was blowing but to our surprise my protein went down and stayed down. I didn’t have to get any treatment for my FSGS for six months.
After those six months, unfortunately, I started spilling a few grams of protein and needed the plasmapheresis again. Just before my course began I got an infection in my stomach which – for no apparent reason – made my FSGS come back with a vengeance. I started spilling tons of protein—well over 20 grams at one point. My creatinine got as high as 3 and I was so close to dialysis I could almost touch it. Luckily, the plasmapheresis has been keeping my creatinine at normal levels but this means I have to get the treatment three times a week indefinitely for a while. For some reason, my last courses had not brought down the protein levels in my urine significantly but the fact that they keep my creatinine low is huge. I made peace with the idea that I might have to get plasmapheresis indefinitely before I received this kidney—it was just really difficult for me to accept because I had been doing so well for so long. I really thought the FSGS and high protein levels were behind me but that is the way this illness goes.
For those of you who have gotten one or multiple transplants and lost them to FSGS, my story should be compelling. Long before I had my most recent transplant, I tried to find someone who had a successful kidney transplant after having recurrent FSGS in a previous transplant—and I couldn’t find anybody. The kidney I have now was diagnosed with recurrent FSGS. It’s been almost 18 months and I have a creatinine of 1.2. I have to work hard for it to stay that way and the future is uncertain but I feel great and I don’t have to be on dialysis. I really hope to be updating this page a month from now so I can tell the world I am in remission and do not need the plasmapheresis anymore but even if I do I’m cool with it.
My advice to those in my situation or anybody who has recurrent FSGS is get a doctor who really cares and is proactive and be prepared to do plasmapheresis. It seems like some medical combination will work and the key is to stabilize the kidney function through plasmapheresis in the hope that something will. That has been the philosophy of my doctor and me.
My attitude has continually gotten better as I have had to deal with this disease. Chronic illnesses are tough mentally because they are always following you around and start tugging at you when you least expect it. Even though I have had it rough these last couple of months I remain positive and thank God everyday that I don’t have to be on dialysis. Most of all I am thankful for having such an incredible family. My brother Matt (the brother who donated his kidney to me) was one of the founders of the Chicago chapter of Nephcure and if anyone shouldn’t have to do work on my behalf it’s him but he cares so much for me. My other brothers, who could not donate because they were not a match, wanted nothing more than to be able to sacrifice one of their kidneys for me. My parents have always encouraged me to be independent and to try and achieve my goals even though it’s more difficult. They never favored me or gave me special treatment which has paid off tremendously in my adult life. Being older, I can’t imagine how hard it must be to watch your son suffer and be helpless to stop it. My extended family has also been very supportive of me throughout all of this and I know that their prayers are always with me. I have known people with similar conditions to mine who didn’t have nearly the amount of support that I do and can’t imagine how hard it must be.
On top of this I was married in November of 2007 to my lovely wife, Erin, who has been my biggest supporter. She accepted me instantly and was more than willing to deal with my health issues—looking beyond that was easy for her and really opened my eyes to how great people can be. Like me, she comes from an exceptionally close family who’ve also been great to me through my illness.
My brothers (this year it’s being lead by my brother Mike) have organized a walk through Nephcure on September 13th at Moody’s pub in Chicago. For anyone who lives in the Chicago area it would be great if you could come to the walk and help raise money so that a cure might be found someday and so that people will not have to go through what I have gone through. Click here to learn more.
|
