I live in CO and the kidney wait for me is 7 years long : ((( I have been on dialysis for 2 years.
I am pursuing a living donor. Any feedback would be so appreciated regarding how to find one.
Also, the facts seems to say that a living donor kidney on average lasts 20 years vs. a deceased donor kidney that lasts 10 years. I would love feedback on this as well.
Thank you comrades!
I got a preemptive transplant almost 4 years ago, from a living donor. My estimated wait time for a deceased donor was 3 years, and I was real close to needing dialysis when it was done. The docs had a list of why living donor kidneys are preferred over deceased donor kidneys. 1, the new kidney gets to work right away. Sometimes the deceased donor kidney takes time to wake up. 2, the dosage of immunosuppressants required is generally lower for living donor kidneys. They are not sure why, but that is the observation. 3, the living donor transplants seem to last longer. Once again, they are not sure why, but that is the observation. 4, you get transplanted sooner and can get off or avoid dialysis.
Asking for a kidney was the emotionally toughest part of my transplant journey. It's not like you are selling Girl Scout cookies. You are literally asking a person to give a part of their body to you. The transplant center had advice on how to go about it, but it is up to you to do it. They recommend casting a wide net, and have stories about how people donated to their mechanic or a fellow member of their dog rescue group. We are so blessed that there are people who are willing to do this, angels on earth.
I ended up asking at my church, and the pastor ended up being a match. We became a church project. Church members came and waited with our family members at the hospital during the transplant. They brought food to the house during my recovery, and have looked out for me ever since.
One of the hard parts of the pandemic has been not seeing that wonderful group of people. Good luck to you on your transplant journey.
I am dealing with a similar situation!
First 1 year in center hemo then 6 months of PD it didn’t work form me a lot of issues back on in center hemo! I am listed at 3 centers have no living donors, I tried?
Hemo days r horrible after I get home I sleep and feel horrible, I make sure not to much fluid is not removed? I exercise on. Days off and watch my diet😷
First, take a look at the NKF website and look at the "BIG ASK." kidney.org
Has a lot of valuable information on how to ask someone to be your kidney donor. When I was looking for a living donor, I told my story to everyone - fellow workers, my woman's club, my church, my family and Air Force friends. I had several people step up and were willing to be my donor. But I got the call before they were fully tested...
I wound up having my transplant from a deceased donor. Doctors tell you that a deceased donor kidney will last only 10-12 years. That is only the average. I am 23+ years post transplant and continue to be stable with a creatinine of 1.0. So take what they say with "a grain of salt." There is a man that posts on here occasionally and is over 30 years post transplant. I believe in protecting your "GIFT". take your meds, never take any medication even a supplement without getting the OK from your nephrologist and do whatever your doctor tells you.
Take care. Be proactive and be outspoken when looking for a donor!
Hi BeachLove,
I can't speak to living donors, but I can address the difference between living and deceased donors. I will preface this by saying I am the "oddball." I was on dialysis for 9 years while waiting for a deceased donor. I was on hold for 3 years after a cancer diagnosis. In general, most people do better with living donors than deceased donors, this is because there is less ischemia time - or the time the kidney is not attached to an oxygenated blood supply. However, transplant recipients/donors are so complex that general trends are very hard to support and there will always be people who fall outside the normal trends. I actually think it does a disservice to transplant patients and centers to rate success based on how long a person has a transplant. There are so many contributing factors that it really is like comparing apples and oranges. I remember hearing about a patient from a colleague working at a transplant center who was on his 4th transplant in 8 years!! He was so non-compliant by the end of the first year, he would just stop taking his meds. He had living donors lined up and was bouncing from center to center.
I've had my deceased donor kidney for 18 years. I had only a two-point match (or 4 point mismatch), and I had a rejection episode within the first 12 hours. Both of these should put me squarely in the, your kidney will likely last less than 10 years. I was basically told by a nephrologist after 3 years to start mentally preparing myself that I would likely be back on dialysis in 2-3 years. I also knew a young woman who was lucky enough never to be on dialysis and had a living donor with a perfect match from her father. Her kidney only lasted 18 months before she lost it due to rejection.
Although it's very difficult not to make assumptions based on the data the doctors and transplant centers provide, the bottom line is your transplant will be entirely unique to you and your situation. Overall the best thing you can do is maintain your health which means controlling blood pressure, blood glucose, exercising to maintain muscle and bone mass, and trying your best to maintain a normal weight without massive fluctuations. The two biggest factors in your long-term kidney health, regardless if you get a deceased or living donor, are blood pressure and blood glucose, keep those in check even before your transplant and you will be in great shape.
Thank you for the super helpful and encouraging feedback : )
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