Living Donor

[Ktogles]

Hey guys! I'm signed up to do living kidney donation and I'm terrified. All the what it's are starting to hit me!! I would love to hear your stories about being a living donor, good and bad. There's not a lot of research or news around complications of living donors which makes me skeptical. Please share so I can get over my anxiety!!!

[PeterChao]

Hi Ktogles,

I am a kidney recipient, so I can’t give you first hand knowledge of how it feels from from a living donors perspective. But my mom was my living donor and as her son, i was very concerned with the risk she was taking. One thing that varies for living donors is the testing criteria from hospital to hospital. We were at UCLA, they do very stringent testing to confirm the health of the living donor. My mom is 71, so that made it even more risky. All in all, she qualified and her surgery was a success. The surgery happened on January 24 of this year and she has recovered very well.

She was discharged from the hospital after one day and was dealing with pain. She was told to rest for about 6 weeks, with no heavy lifting. She is now back to exercising, but she does get tired a little quicker. Hope that helps, I would recommend talking to the coordinator and asking them any questions you have. Ask them if there are any living donors that you can speak to directly. Good luck!

Peter

[marcyc NKF Ambassador NKF Peer Mentor]

Hi, I was a living donor in 2015 and would do it again in a heartbeat. There are many tests and you have a medical team separate from the recipient. Their job is to protect you and stop the process if anything shows up that might be a problem for you. I am a RN with 40 years experience. Asked my Nephrologist friend why there are no long term studies on living donors. Because it is even difficult for them to come back for their 2 nd year check up. They are healthy people or they wouldn’t be accepted in the first place. Ask me anything you want to know.

[Happydonor]

Dear Ktogles, I am a male kidney donor who donated in 2010 at the age of 53. The tests are very comprehensive and frankly gave me the confidence that I would do very well through the surgery and recovery. The immediate recovery after surgery is painful but the hospital will keep you well medicated to control the pain. The day after surgery I was up and walking around. I went home 3 days after surgery and was able to stop pain medications the very next day and just use Tylenol for pain for a few more days thereafter. The symptom that I found that lingered for a few weeks was fatigue........I would feel good and energized for a few hours and then very suddenly I would experience extreme fatigue, so much so that I had to take a quick nap. After a few weeks that went away and I was able to go back to full time work. I have experienced no side effects and regularly exercise using weight training and long distance bike riding. I will be participating as a volunteer rider for the National Kidney Foundation on May 6 doing the Five Boro NYC 40 mile bike ride. All in all when I look back it was a non-event and I would do it again in a heartbeat. Best advice.......find a donor mentor, ask questions as you are doing, eat well and exercise. Best wishes.

[AMHulstine]

Hi! I’m a 37 y/o woman, I donated 2/6/18. I was nervous when I realized I matched. My donation was to someone I knew of in passing, but not a relative. We’re family now, but that’s beside the point. I have two young kids (9, 4) and I was nervous for them. There is always a risk, in everything that we do. But electing to have a surgery and removing an organ is a big deal. Please know that if you truly feel that you are unable to go through with it, your transplant team can give you an “out” they call it a medical alibi. With all that said, I was tested throughly and even had to requalify because my recipient wasn’t well enough for the transplant, so I felt comfortable that I was healthy and able to do this. 1 in every 750 people is born with only 1 kidney, and I’m lucky enough to know a few people with only 1 kidney, so I felt better looking at them knowing they were healthy. I was in a lot of pain for 3 days and uncomfortable for a few more after that, but I am back to jogging and have been working, I even painted my porch yesterday. I don’t feel any different today than I did a few months ago, and I’m proud of the lesson I taught my kids. Let me know if you need to chat more.

[lisa209 in reply to AMHulstine]

My brother was born with only one kidney.

[Kdonor in reply to AMHulstine]

Awesome recovery! I was the same age when I donated. And yes you can say no until right before they put you out for surgery, and you don't even have to worry about judgement cause they won't say that you backed out, they just explain that they couldn't proceed with surgery. It is a huge decision ad completely up to you.

[DSKdonor NKF Ambassador]

Hi there! I was 43 in 2007 when I donated to my Dad, who was almost 71 at the time... I'm now 55 and he's almost 82 now...both doing well! I agree with the other replies on how extensive the BEFORE testing is so I won't repeat. What I will tell you are 2 facts that I did not know prior to my donation.

1) I read a study from one of the published medical journals for the lay person about 6 or 7 years ago stating that the average life span of a kidney donor is 30 days longer than a non-donor. Might not seem like much, but if you think about it, it is pretty significant -- it means we take care of ourselves knowing we have one less kidney and in general....it's LONGER than the average non-donor --- NOT LESS!!!

2) This might not mean much now, but... heaven forbid you do donate and let's just say have some sort of accident and your remaining kidney is (physically) damaged and won't "work", as a previous living kidney donor you go to the top of the wait-list to receive a kidney - for most, that means a VERY SHORT wait -- 1 day, 1 week perhaps.

Having said all that... I would donate again if I had another spare for sure -- no doubt! One of the best things I have EVER done!

Hope that helps ease some of your nerves!

-debi

[e-mail]

[SoniaBrummer in reply to DSKdonor]

Great kidney story, and great advice!

[NeedingAdonor]

Hello, I'm curious, are you doing this for a friend? I think you will be fine because I have heard mostly positive outcomes. How is your health now? If you want to donate in my fiance's name rather than anonymous please feel free to contact me. If you already have someone to donate to then thats cool. I really need him to live for more years and so do his kids. Thank you

[SoniaBrummer]

Hello! You are doing an amazing thing! But first and foremost- your wellbeing is #1. I want to put this out there: if you are having real doubts, it is OK to change your mind at anytime. I know changing your mind might come with complications and other emotional consequences. But bottom line, you should only do the surgery if you are feeling right about it.

I am a living donor, non-direct, Oct 2009. If I could do it again, I would!!! Before I get into my own experience, I want to assure you that there IS research out there. We are just getting to the point in the last 5-10 years where long term living donor research is coming out. Enough time has passed, with enough surgeries (first started in the 50's but not many done at first) and now there are some solid findings. You can ask your Transplant Coordinator for information. Here are some links I found to short term and long term studies and other info:

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

mprnews.org/story/2009/01/2... (This one! I remember this coming out in 2008/2009 around the time I was deciding to give. It was a major announcement, but I am having trouble finding a link directly to the study itself)

eurekalert.org/pub_releases...

clinicaltrials.gov/ct2/show...

ncbi.nlm.nih.gov/pubmed/?te...

You mention you are not finding a lot around the possible complications around living donation - and that might also be because it is a really safe procedure. You won't qualify to give if they think you'll have consequences to your own health. It is a major surgery, no doubt. But there are some facilities that do 4-8 kidney transplants a week so it is also considered somewhat "routine." You go in healthy, which means you heal up well.

[Sulyn]

Hello - I understand how you are feeling. I also had anxiety as the time approached to give my husband a kidney. However, the day of the operation I became very calm as I realized I had gone through many tests and I knew that I was medically ready to give the kidney. The screening process even included meeting with a kidney transplant psychiatrist who listened to my concerns and further determined that I was a suitable donor. I was 64 years old and was home in two days. The laprascopy incisions were very small and when I returned home I could do things for myself, take showers and go for short walks in my neighborhood. When I became tired I would lay down for a rest. It has been 7 years and my husband and I are doing well - we eat a healthy diet and take walks at least 5 days per week. I agree with the response above that as a donor you go into the operation healthy and continue to live a healthy lifestyle since you respect your body and its wonderful potential. I hope these responses are helping you and I wish you the best !!!

[jcjohnson777]

Hello! I became an altruistic kidney donor to a complete stranger on 7/29/16. I donated at age 59. My transplant was at Emory University hospital in Atlanta, GA. The surgery was scheduled that Friday morning. Within 24 hours after surgery, I was unhooked from IV's, catheter, etc. and was walking the transplant floor. I was on minimal medication as well. On Sunday afternoon, I was released from the hospital and went home. I was very careful to follow post-op instructions. My recovery went well and I was within the 6 week recovery period that I expected. The biggest challenge I faced was sneezing! I do remember that sneezing definitely hurt. Otherwise, I did not have any other problems. They made sure I was in very good health to donate and that makes a big difference in recovery. I feel better today than I did before the transplant due to healthier eating and drinking lots of water. I met my recipient 4 months after the transplant. Awesome experience. Donating has been one of the most rewarding experiences of my life. If I had another to give, I would not hesitate to do so. All the best to you and if you have any questions, please ask.

advancingyourhealth.org/tra...

[Stephz2607]

I was a donor back in 2015 if you’d like you can send me a message and we can talk more. [e-mail]

[DCAV]

Ktogles, I donated a kidney about 7 months ago and it was any easy process. I have not regretted donating for one second. I have not had any issues what so ever. I would encourage you to stay in touch with the recipient it is so awesome to see how their lives change and the good you have done. It’s natural to have concerns and be nervous, not sure if it’s your deal, but prayer always helps me out. You are stronger than you think!

[Ktogles]

Thank you all for the responses!! I am definitely feeling more at ease. Just have to stop playing the "what if" scenarios!!

[SoniaBrummer in reply to Ktogles]

Someone above mentioned speaking to the psychologist for help. You probably have a social worker assigned to your case too. Use those resources if you need to talk through the "what if" scenarios. Certain family members and friends had all those "what if" questions for me and I remember thinking the odds of all of their fears coming true were very slim. So then you ask yourself, "how do I want to live my life? How much risk am I willing to take? Where else do I take risks in my life? Is this one worth it?" For me, I always came up with the same answers and knew this was the right decision for me.

[MBalcer]

All of those who have responded have given you great information. I donated a kidney to my sister in 1995. It was her second kidney transplant as the kidney she received 11 years prior from our half-sister was beginning to get rejected. I was a better match for her when she had the first transplant, but they wanted to wait until after I had a baby first as they didn't have a lot of data on pregnancy and birth after donation. I donated 17 months after I had my son. Back then, there was a large incision and they even had to remove a tip off one of my ribs to get to the kidney better. Recovery was six weeks and easier for me than my sister since I was healthy to begin with. I, like everyone else who has responded, would do it again. I even had an uncomplicated pregnancy two years later. It will be 23 years this May and no rejection episodes for my sister! I agree that learning as much as you can about everything is the best way to go. My older sister who was the first donor did not want to know anything and I really think that contributed to a lot of her recovery challenges (more psychological - agoraphobia) and overall healing. She is a smoker, though, so going into a major surgery when your body is not at its best can also be a factor. Good Luck and God Bless you and your recipient!

[Ktogles in reply to MBalcer]

MBalcer,

I'm a smoker as well. I have a quit date tomorrow. Can you elaborate on the difficulties your half sister had?

[MBalcer in reply to Ktogles]

Please remember that our donations took place so long ago; well before the medical advancements that now allow for laparoscopic kidney removal. I don't know how long the donors have to be under anesthesia with the laparoscopic surgery, but that is something that could contribute to a slower recovery based on the health of your lungs. I'm sure that is something that would be determined through the extensive pre-donation testing and if it was a concern for your recovery, you would be told as everyone's body is different.

I would encourage you to ask lots of questions of the doctors and donation coordinators as they have so much more experience with a wider pool of donors; especially ones who have undergone the current laparoscopic technique.

[SoniaBrummer in reply to MBalcer]

MBalcer is right, there have been so many advancements in the procedure since the 90's. It is quite different now.

My surgery was about 4 hours long. I've heard of some being 3 hours long.

I would think that along with quitting smoking, do things to improve the strength of your lungs would be a good thing to do to prepare. Doing 30-60min of cardio every day (might be painful when you first quit smoking since it is going to clear all the gunk out, but worth it in the long run), getting into a regular sleep pattern, and maybe even taking to a shiastu practitioner or acupuncturist for help with the lung meridian's harmony and promoting lung health.

[m3foster]

Hi there! I am a living donor from November, 2015. The feelings you're having are totally natural! It's a little daunting for any surgery, let alone one where you're losing an organ :). I was really sick following my surgery but anesthesia always makes me sick so it was not a surprise. Once I got through that, I was fine...sore, but fine. You will have some pain but, as others have said, it's manageable with pain meds. I would donate again in a minute!! Giving the gift of life is truly the best feeling ever!! My only suggestion to you would be to listen to your body. If something isn't "right", you know your body well enough to know that so make sure you let your medical team know.

And one very important thing - DRINK LOTS OF WATER - forever!! You will dehydrate more quickly than before and feel very fatigued so be sure to keep yourself hydrated. I thought my nurse meant right after the surgery. About 3 months in I felt terrible; extremely tired, headaches. I told the nurse and she said, "You're dehydrated. I told you to drink a lot of water". ..oops on my part I now carry water with me everywhere I go and have an app on my phone to remind me to drink some water every hour. Made a HUGE difference!

Best of luck to you and your recipient!!

[Kdonor]

Hi Ktogles,

I donated my kidney to a friend on September of 2016, I had never been more sure of any decision in my life and reading stories of so many people on wait-list I would do it over and over again if I could. That being said, I had the worst recovery! literally the nurses and doctor said they've never seen anyone having the struggles I had and reading stories and watching videos of other donors, it did seem most people recovered faster than me. But even with all the complications, looking back it wasn't super bad, first of I'm a real baby when it comes to pain, so I had to take pain meds, second, I wasn't drinking enough water, never had and the fact that I absolutely had to do it didn't really make me do it, so that didn't help my recovery, also no one I know has had this complication but for a while I couldn't eat much. As you can see, my complications were not really bad compared to the life my recipient would've had to face for years to come, a couple of months of discomfort, totally worth it! now we're both healthy and ok and we are both enjoying life to the fullest. If you want to see more details of my recovery, I made a video the week after.

Here's the link: youtube.com/watch?v=2Ad59xu...(Not working as expected?)