Kidney donation experiences

My brother's kidneys are failing, and I'm headed to MGH this week for the initial screening to donate.

I'm scared shitless, but I also hope I can be the donor for my brother as he has the best chances for a good outcome with me.

There has to be some TW members that have donated. Post your experiences, I'm freaking out. I keep worrying that I won't be as strong when it's done, that I won't be able to bike/snowmobile/etc. I guess that sounds a little silly, but I live for this kind of stuff.

 

My mom has chronic kidney failure as well. Quite hard to find a donor. She won't take one from me or my sister. After 5 years on the transplant list we are starting to get calls from the hospitals telling her to be ready for the surgery whenever there are potential matches. Average transplant wait time is 4 to 5 years. We've met plenty of people who were on the list and had the surgery, living healthy happy lives. Stay strong.

 

You can survive just fine with one kidney, with no issues except a scar. You can resume all normal activities after you fully heal. Some people are born with only one kidney and never know until they have an X-ray. I think it's awesome you are willing to donate to your brother, not everyone would if they could.

 

The testing process can be a long wait. My donor came forward in August 2016 and we just got approval and scheduling for transplant last week. We go in for surgery on August 9, so 3 weeks and counting.

Post transplant, the donor can resume a normal life, although you will want to ensure you live a healthy lifestyle as you will only have one kidney left. BUT, the clinic will not approve you if they don't feel 110% sure that the donor will be able to live a healthy life afterwards. It is during the screening process that a donor can find out if they have health issues. One of my donors appeared to be a healthy specimen but during his screening they found out he has a heart murmur so he was disqualified. While he was disappointed that he could not be a donor, he was grateful that they found his heart issue as he never knew it.

Also, ask your donor coordinator a lot of questions. One caveat they will or should advise you of, is that once you donate your kidney, you will be automatically labelled pre-existing condition which could affect your health insurance and life insurance policies. Given the current repeal of ACA, you will want to monitor your coverage. If you have a job with strong health insurance you will have no issues. If self employed or self reliant on health and life insurance, you may want to research and get locked in prior to surgery.

The surgery is pretty straight forward and you will spend 2 nights in the hospital. After discharge, they will likely offer you 2 additional nights at their offsite housing as you will need to do daily followups at the transplant clinic for a couple days, just to be sure your surgical site and your kidney function are good.

NOW, in the event later down the road you end up with kidney disease and failure, as a donor you get automatically bumped to the top of the list, so your wait time for a cadaver donation is typically about a year or less. Depending on blood type, the rest of us are at a 4 to 10 year wait.

If you and your brother are NOT a direct blood or HLA marker match, you can participate in what's called paired matching or a swap. In this instance, you can donate your kidney to someone else who is a match, and their donor who may not be a match can go to your brother if they are a match, or it can become part of a chain. The surgeon who will do my transplant at UCLA was a part of such a chain and those patients and he made a PSA video. Peep it out here:

https://youtu.be/4GcGmRWnjdA

Don't be afraid of the testing process. It's just a series of blood tests. If you make it past that, there is a cardiac evaluation. A stress test either on treadmill or nuclear. If you are diabetic, they won't let you donate.

Just know that your brother appreciates you testing, and for patients like us, the act of getting tested means as much if not more to us than actually being a donor.

If you have any questions, please feel free to hit me up.

 

Thanks guys. Thanks for the write up Mike.

I know I am a blood type match, so I expect I'll be going through some more extensive testing at the screening this week. I have done a lot of reading over the past few weeks, but it calms me to hear some real life perspective.

 

ya know, just go into it knowing you are saving your brother's life... if you focus on him, it will put your mind at ease through the process... my donor's mom donated her kidney 17 years ago and both her and her recipient are thriving and living very well...

 

This is a cool thread.

I hope all goes well for both of you and your families

 

So I just found this thread today and wanted to give up some experience on living with one kidney. I was diagnosed with renal cell carcinoma about 4 years ago and subsequently had to have my left kidney removed. My operation happened on a Monday and I was out of the hospital on Thursday. The nursing staff will have you up and walking around immediately. I was walking the floor around the hospital on Tuesday afternoon. (After they took out the catheter which is a whole nother matter ) If they remove your kidney like they did mine, you'll have one scar from where they pull it out, and 3 small ones from the tools they use to do the surgery. Granted you're donating yours (which is friggin' awsome ) but the after effects will probably be the same. For the first week or so, make sure that you have a pillow or blanket pressed up to which ever side the kidney comes out for when you have to cough or sneeze. No lie, that first sneeze will be a bitch!! Not sure what kind of physical state you are in, but your core muscles will get a work out from how you will be getting out of bed, out of cars and even chairs. But it will get better soon as long as you commit to trying to move and walk around. I was on a treadmill the week after surgery doing about 20-30 mins at a slow pace. You do what you can do but you have to keep at it. I was back to work on light duty in 6 weeks with a weight lifting restriction of nothing over 25 pounds. That gradually increased as my strength increased. You should have no restrictions on physical activities (assuming that you didn't before). It took me about 1 year to finally feel "comfortable" and like I was completely bacl to normal. I currently go to the gym 5-6 times a week, bike ride, play volleyball, basketball, and pretty much anything I was doing before the surgery. I really hope that this helps and gives you some idea of what to expect. If you want to contact me about anything I went through that is on your mind and your situation, just shoot me a PM. Again, nice job on stepping up to help your brother and I hope that every one comes through with flying colors.

 

My 1st wife (deceased) lost a kidney to disease that had to be removed. Kidney function wise, she was just fine on one. Ultimately lost the battle with the disease, but the single kidney carried the full load along the way.

I went all through school and part of my work life with a guy born with one kidney. He's now old (unlike me, natch) and never missed a beat of doing anything he wanted to. Biggest deal for him was the military refused to enlist him.

I don't know off hand of anyone who has been an actual donor. But I wouldn't expect their lives to be diminished any more than those I've know with only one kidney for other reasons.

I think it's miraculous that such transplants can even occur, and that you are to be commended for even being willing to consider putting yourself at risk to save your brother's life. Too many are too selfish to even consider such a thing.

 

My wife is in need of a kidney transplant, and we have been undergoing the evaluation process for a couple of months now. Her triplet sister is willing to donate, and we just received word that the blood cross match was negative (which is a good thing). She will be traveling here, along with the other triplet sister, the first week of next month in order to have further tests. My wife already has surgery clearance, and if all goes well we will schedule surgery for December after the sister finishes her semester teaching. I wil provide after surgery care to my wife, and the other triplet, who is ineligible to donate, will care for the donor sister.

My wife gets emotional every time that she thinks of the love of her sister in offering one of her kidneys.

 

Good luck and my dad has kidney transplant about 20 years ago and I'm super happy he found one , all of my brothers and sisters where young even me so even if we wanted to he would of said no . But he is healthy and living a good life in Puerto Rico he does take care of him self and goes to university of Chicago every 2 years to check up on his kidneys , they are the ones who did the transplant . God bless and hope all goes well witch I'm sure it will

 

Thanks for the thoughts everyone. I'm waiting on the results from the first clinic day (EKG, chest x-ray, massive blood draw), then day 2 if everything checks out.

@Sistema1927 glad to hear your wife found a (possible) live donor, that's awesome!