I have Focal Segmental Glomerular Sclerosis. Alonzo Mourning, the NBA basketball player also had FSGS. He was able to avoid dialysis when his cousin donated his kidney to him.
I first learned that I have FSGS after an ultrasound exam of my kidneys when I was 23.. Blood tests showed that my kidney function was gradually deteriorating, but we all start out with an abundance of excess kidney function capacity so it had no impact on my life, until recently I had to go on dialysis at the age of 32. I’
m 35 now and I have been dialysis for 3 years so far.
Now, I have three options: dialysis, a kidney transplant, or do nothing. Dialysis has its own limitations and consequences and will be a temporary solution until I can get a new kidney. Doctors have said that I am a good candidate for a transplant because I am otherwise healthy and a new kidney will solve my problem.
Kidney transplants, experimental a generation ago, have become almost routine and are highly successful. The problem is the availability of donor kidneys that have matching blood type, tissue types, and other factors that affect the chances of rejection. Kidneys come from two sources: sudden victims of fatal accidents, and living donors. The waiting lists for patients in need of a kidney is greater than the supply from fatalities so living donors are encouraged. In addition, a kidney from a living donor provides the best prognosis for long term success of the transplant.
Living donors are often family members because of genetic similarity and motivation to volunteer. But, just as a fatality can result in a donation from an unrelated victim, living donors can be unrelated, too.
In my case, as I mentioned above, many of my relatives are incompatible donors, so we are all looking elsewhere for donors while we face the alternative prospect of an indeterminate wait on dialysis followed by emergency surgery when and if we get to the top of the waiting list for a cadaver kidney.
A transplant is a better treatment for kidney failure than dialysis, and a living donor is a better option than waiting for a matching accident victim, for a variety of reasons. So, I am on the lookout for a friend who wants and is able to make a great difference in my life.
I’ve always enjoyed an active life in the outdoors, playing basketball and tennis. In recent years, I’ve used those interests to maintain my health for this eventuality. I have been working to be sure I can provide a good home for a donated kidney – whatever the source – for a long time.
But, now that the time has come, I recognize that it’s hard to ask for a kidney. I can’t walk up to a friend and say “Can ya spare a kidney?” The decision to consider donating is significant and personal. There shouldn’t be pressure or guilt associated with that choice. But there needs to be information, and that’s really my goal here. I’ve already provided some information about my situation and need. People need to know about the process of donating and the short and long term consequences. I will summarize what I have learned and give some online resources to confirm and elaborate on that information.
First, normal healthy kidneys are way over-engineered for the job they really have to do. You have two and you really only need about 20% of the blood cleaning capability that you were probably born with. (Remember, that’s why I’ve been fine all these years as my kidneys gradually deteriorated.) Generally when organs come in pairs, both need to be there (eyes, ears, lungs, etc). You can get along with one but it restricts your abilities. But most people with healthy kidneys can do just fine all life long with one. The surgeons do not transfer any quality of life from the donor to the recipient. The recipient gets the valuable and needed gift from the excess capacity of the donor.
But, nothing is simple. The donor takes all the typical risks of a laparoscopic surgery to remove one healthy kidney, and the pain (the literature says “discomfort” but let’s be real here) and time of recuperation from that surgery. The recipient of the kidney (or his insurance, actually) pays all of the medical costs of the donation (it’s called the “procurement cost” in the business). The recipient is prohibited by law from actually buying the kidney, but can pay non-medical costs associated with the donation (travel expense, etc).
Not every friend can be a donor. As mentioned above, there must be tests for compatible blood type, tissue types, antibody reactions, etc. My blood type is B+. The donor’s health must be evaluated to be sure that the donated kidney is really excess capacity and that the donor is able to endure the surgery and recovery. Some general health guidelines include:
* not diabetic or pre-diabetic * no hypertension (high blood pressure) or medication for same * no history of kidney stones or kidney infection * Body Mass Index less than 35 * over 18 years of age and less than “about” 60 (Mayo clinic says 70)
Once those requirements are met, they get into detailed evaluation of physical and mental health, including motivations and doubts/concerns as well as the actual physical structure and condition of the kidneys. Some donor candidates learn of undiagnosed problems during this thorough health evaluation.
Once everything matches up between donor and recipient, the transplant is scheduled as elective surgery at everyone’s convenience. Recovery time in the hospital is about a week for the donor and a couple of weeks for the recipient. Then there are follow-up checkups to be sure everything is healing nicely and any post operative issues are dealt with.
So, that’s a summary of the process, you can confirm this information and get more details from a number of medical websites including:
Finally, no one “owes” me a kidney. And no one owes me an explanation for their decision or their medical inability to offer a kidney. It’s a major proposition with lots of factors to consider. If you want to explore the possibility check the donor criteria in the general information in the links above. After I get all my testing complete so they know what a match needs to look like (by August, I hope), you could contact my transplant coordinator and tell her you would like to be tested for John Kim.
Heather Busch UCI Medical Center 101 The City Drive Orange, CA 92868
714-456-8441 (office) 714-456-8796 (fax) www.ucihealth.com/transplant
The transplant coordinator can answer your questions and ask some health screening questions to determine if you could continue with blood testing and other health evaluations. She does not tell me who contacts her or what information was exchanged.
I would ask two things of everyone who reads this. First, please share this with other mutual friends. Second, please look around your circle of family and friends because there may well be someone else closer to you who has a similar need. If you are willing and able to help them, that could help me by taking them out of competition with me on the transplant waiting list.
Thank you for your friendship over the years and your thoughtful consideration of this information. You do not need to respond to me in any way about this. I appreciate everyone’s thoughts and good wishes.