Kidney transplant - The Journey from the Donor's Side

Posted by mauraacro @mauraacro, Jan 2, 2018

I’m headed to Rochester on the 10th for surgery on the 12th. I’m excited and nervous! I didn’t know the recipient but have gotten to “meet” her and some of her daughters through phone calls and emails.
I’ve had labs done at my doctor’s office and went to Mayo a few weeks ago for a million more tests. My case was presented to the donor board a few days before Christmas and I was approved and notified the same day. It seems like everything took so long and now is going so fast.
I’m interested in hearing from donors but haven’t had a lot of luck. It seems like the recipients are the ones who post the most, which gives me some info and reassurance but it would be nice to hear from the other side too.

@jgiovann

Thank you very much for your loving support, I greatly appreciate it. I will keep you updated. We live in a small suburb just west of Rochester, NY and are fortunate to have Strong Memorial Hospital only 20 minutes away so we don't have to travel far.

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@jgiovann, I decided to drop in to see how your mom is doing since she has been on dialysis. Is it helping her to feel better? I have a friend on dialysis while waiting for a kidney transplant, and he is feeling real good since he started dialysis. In fact, last time we spoke about it, he said he is in no real rush to find a donor because he does feel so good and he has arranged to have dialysis when he travels. I'm not sure that I would agree with his thinking, but, that is his decision not mine.
Anyway, I want you to know that I am thinking about you. If you find a free moment, I would be interested in learning what the doctors have said about scheduling your mom's transplant. Has there been a satisfactory change in the antibodies? Will a new kidney chain be formed when she is approved?
Rosemary

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@kailapinsent

Hi,

I am currently 27 years old and am currently going through the process of become a living kidney donor.
I was curious to know how many people in the group have already done a kidney donation of their own and how that has affected their life. I myself am more excited then anything to save the life of someone. But I know my husband is terrified. Unfortunately we recently lost his mom to kidney disease. It was heart breaking for the whole family. And hes now worried about losing me.
Ive read him all the info all the statistics but he still seems super nervous
Im hoping some stories from people who have already donated will be able to help ease his mind.
How was the surgery?
How did you feel after the procedure?
Anything long term youve notice changed?
Any pros?
Any cons?
All info would be very helpful. And please pure honesty. Again I know the risk. I was just hoping to get some real insight in the world of donation.
Thank you everyone. Looking forward to read your responses.

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@kailapinsent Hi, and welcome to Mayo Connect! We are so glad you have found us here. We are a diverse group of patients, family members, and caregivers who share experiences and strength with others along our journeys.
Thank you for stepping up to be a living donor. I am sure you can relate to your husband's concern. Here is a link to a discussion already here on Mayo Connect, about the donor process https://connect.mayoclinic.org/discussion/kidney-transplant-from-the-donor-side/
Also, someone inquiring about the donor process https://connect.mayoclinic.org/discussion/living-donor-process/
And a one-year update from a living donor https://connect.mayoclinic.org/discussion/a-post-donation-check-in-one-year-later/

We encourage you and your husband to ask us any questions you might have. When is the surgery planned for? Do you know the intended recipient?
Ginger

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@kailapinsent

Hi,

I am currently 27 years old and am currently going through the process of become a living kidney donor.
I was curious to know how many people in the group have already done a kidney donation of their own and how that has affected their life. I myself am more excited then anything to save the life of someone. But I know my husband is terrified. Unfortunately we recently lost his mom to kidney disease. It was heart breaking for the whole family. And hes now worried about losing me.
Ive read him all the info all the statistics but he still seems super nervous
Im hoping some stories from people who have already donated will be able to help ease his mind.
How was the surgery?
How did you feel after the procedure?
Anything long term youve notice changed?
Any pros?
Any cons?
All info would be very helpful. And please pure honesty. Again I know the risk. I was just hoping to get some real insight in the world of donation.
Thank you everyone. Looking forward to read your responses.

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My daughter is not a part of this group, but she is my kidney donor. My transplant was almost 2 yrs ago. She has had no problems and is doing very well. The only issue post surgery was the air/gas that is used to expand the abdomen for access to the kidney,etc. It caused pain/discomfort in the shoulder area as it was being absorbed for about a day. A week later when we were at our rental home in Rochester, She was dancing a jig, showing off how good she felt. She was very enthusiastic about having the surgery and being a donor and hasn’t had anything negative to say about it.

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Hi,

I am currently 27 years old and am currently going through the process of become a living kidney donor.
I was curious to know how many people in the group have already done a kidney donation of their own and how that has affected their life. I myself am more excited then anything to save the life of someone. But I know my husband is terrified. Unfortunately we recently lost his mom to kidney disease. It was heart breaking for the whole family. And hes now worried about losing me.
Ive read him all the info all the statistics but he still seems super nervous
Im hoping some stories from people who have already donated will be able to help ease his mind.
How was the surgery?
How did you feel after the procedure?
Anything long term youve notice changed?
Any pros?
Any cons?
All info would be very helpful. And please pure honesty. Again I know the risk. I was just hoping to get some real insight in the world of donation.
Thank you everyone. Looking forward to read your responses.

REPLY
@kailapinsent

Hi,

I am currently 27 years old and am currently going through the process of become a living kidney donor.
I was curious to know how many people in the group have already done a kidney donation of their own and how that has affected their life. I myself am more excited then anything to save the life of someone. But I know my husband is terrified. Unfortunately we recently lost his mom to kidney disease. It was heart breaking for the whole family. And hes now worried about losing me.
Ive read him all the info all the statistics but he still seems super nervous
Im hoping some stories from people who have already donated will be able to help ease his mind.
How was the surgery?
How did you feel after the procedure?
Anything long term youve notice changed?
Any pros?
Any cons?
All info would be very helpful. And please pure honesty. Again I know the risk. I was just hoping to get some real insight in the world of donation.
Thank you everyone. Looking forward to read your responses.

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I donated this past Tuesday, Feb 11. I am home recuperating. I don’t know who received my kidney. I’m happy to hear that my donated kidney is working well. I am experiencing almost no pain. Tired. The transplant team was amazing. I have absolutely no regrets. There is no history of kidney disease in my extended family. That gave me confidence that no relative was likely to need my kidney. I like the idea that I’m helping someone live a better life.

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@kailapinsent

Hi,

I am currently 27 years old and am currently going through the process of become a living kidney donor.
I was curious to know how many people in the group have already done a kidney donation of their own and how that has affected their life. I myself am more excited then anything to save the life of someone. But I know my husband is terrified. Unfortunately we recently lost his mom to kidney disease. It was heart breaking for the whole family. And hes now worried about losing me.
Ive read him all the info all the statistics but he still seems super nervous
Im hoping some stories from people who have already donated will be able to help ease his mind.
How was the surgery?
How did you feel after the procedure?
Anything long term youve notice changed?
Any pros?
Any cons?
All info would be very helpful. And please pure honesty. Again I know the risk. I was just hoping to get some real insight in the world of donation.
Thank you everyone. Looking forward to read your responses.

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Hi @kailapinsent, I'd like to add my welcome along with @gingerw's and @cmael's.
You'll notice that I moved your message to this existing discussion called "Kidney transplant – The Journey from the Donor's Side" https://connect.mayoclinic.org/discussion/kidney-transplant-from-the-donor-side/

Like you @mauraacro and other members, like @cleverusername @rebekahinvt @sameeh123 @ek101085 @jdcowle5 @sprint91 @donboettcher getting ready to donate an organ, the gift of life, wanted to connect, share experiences and learn for the long-term, through the journey. Click VIEW & REPLY to see the past posts and you'll get many responses to your great questions.

Your husband must be quite torn between proud of you and scared after having lost his mom to kidney disease. Are you able to talk openly with him or does he retreat from talking?

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@kailapinsent

Hi,

I am currently 27 years old and am currently going through the process of become a living kidney donor.
I was curious to know how many people in the group have already done a kidney donation of their own and how that has affected their life. I myself am more excited then anything to save the life of someone. But I know my husband is terrified. Unfortunately we recently lost his mom to kidney disease. It was heart breaking for the whole family. And hes now worried about losing me.
Ive read him all the info all the statistics but he still seems super nervous
Im hoping some stories from people who have already donated will be able to help ease his mind.
How was the surgery?
How did you feel after the procedure?
Anything long term youve notice changed?
Any pros?
Any cons?
All info would be very helpful. And please pure honesty. Again I know the risk. I was just hoping to get some real insight in the world of donation.
Thank you everyone. Looking forward to read your responses.

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Congratulations at considering being a living donor! How far are you into the process?
I'll answer your immediate questions and I've written a lot on here about my story that you can go back and look at if you'd like.
The surgery was successful (for myself and the recipient) and much easier than I thought it would be.
I was surprised at how little pain there was afterwards. It hurt but wasn't excruciating and my pain tolerance isn't very high. I was up and walking around by dinner time and released around lunch time the next day. I was on pain meds for a few days and tylenol as needed for about a week. The fear of it hurting was actually greater than the pain.
I just passed my 2 year mark and am back to the same as I was before.
The pros are, I saved someone's life. That's weird to type out and sounds so egotistical but I didn't really grasp that until recently. I knew what I was doing would help this person but didn't really think about all of the other lives that she touches. I've gotten to know her over the past 2 years and have heard her story. She was going to die sooner rather than later and now she's back to work, traveling, marrying off her kids, and watching her grandchild grow up. I am in awe of her determination and the science and skill it took to help her live.
The cons, none for me but I feel very fortunate. Between Dr appointments,evaluations, surgery and recuperation time, I missed about 5 weeks of work. I'm self employed and don't get paid when I don't work so we did a lot of budgeting. My clients were understanding and welcomed me back when I was ready. My flights, hotel and medical expenses were paid by the recipient. Her family went above and beyond and took us out for some meals and brought us groceries while we were in MN. Money was tight but we made it work. I understand that can't work for everyone.
If it helps for your husband (and you) to know, I was told that because I am a donor, I am at the top of the list if I ever need a kidney. Also, There were 1000000 tests and labs that were done before the donor board even approved me and all of them were to make sure that I would have a successful surgery and a long, healthy life after donation.
The whole process was amazing, terrifying, inspiring and awesome and I would 100% do it again if possible.

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Hello my donor friends!
With all of the news lately is anyone else wondering how either the virus, flu or any medication needed would affect the remaining kidney?
I am healthy but a planner. We are being careful here and have stocked up on a few extra things in case we need to be at home for a bit but I'm not sure about OTC meds.
Pre donor days, I had the flu a couple of times, took a bunch of Nyquil, Tylenol, Advil etc & slept a lot. It's occurred to me that that's probably not the best treatment for someone with 1 kidney. Or is it?
I will definitely ask my Dr if I do get sick but was wondering if it has come up for anyone else.

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My daughter was my donor in 2018 and was told to only take Tylenol.

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@cmael

My daughter was my donor in 2018 and was told to only take Tylenol.

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That's what mine said too. I have taken Benadryl twice since surgery but luckily haven't needed anything else.

I will be proactive and see if I can get a list of anything besides Tylenol that is acceptable if needed. My 2 years of coverage (donor related) at Mayo is over and my regular Dr. prefers I consult a Nephrologist but that seems like an exaggerated response, especially since I am in good health, with no kidney problems.

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@mauraacro

Hello my donor friends!
With all of the news lately is anyone else wondering how either the virus, flu or any medication needed would affect the remaining kidney?
I am healthy but a planner. We are being careful here and have stocked up on a few extra things in case we need to be at home for a bit but I'm not sure about OTC meds.
Pre donor days, I had the flu a couple of times, took a bunch of Nyquil, Tylenol, Advil etc & slept a lot. It's occurred to me that that's probably not the best treatment for someone with 1 kidney. Or is it?
I will definitely ask my Dr if I do get sick but was wondering if it has come up for anyone else.

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Kidney patients, should never take Advil, as it is filtered by the kidneys. I usually take a lot of Vit.C when I get sick, stay away from junk food and unnecessary sugar, as it inhibits your immune system. Drink plenty of fluids, no soda!

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@ca426

Kidney patients, should never take Advil, as it is filtered by the kidneys. I usually take a lot of Vit.C when I get sick, stay away from junk food and unnecessary sugar, as it inhibits your immune system. Drink plenty of fluids, no soda!

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Thanks!
I got a message from a transplant nurse to also stay away from non steroidal drugs like Advil, Motrin & Naproxin.
Those seem easier to stay away from than junk food but I'm working on it!

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@ca426

Kidney patients, should never take Advil, as it is filtered by the kidneys. I usually take a lot of Vit.C when I get sick, stay away from junk food and unnecessary sugar, as it inhibits your immune system. Drink plenty of fluids, no soda!

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I was recently in contact with my transplant nurse team because my tacro was was too high. I was asked if I’d changed or added any meds or supplements. I said that I’d added vitamin C. I was told that vitamin C is not recommended because it strengthens the immune system, working against the immunosuppressants. I stopped taking it.

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I don't go against, the transplant team, but their are different areas of the immune system, and our drugs are focused on a certain area, I have been taking Vit.C for years and it has never affected my kidney transplant, and Vit.C would not have any effect on tac. level, you do need to stay away from grapefruit juice, as it will affect the way your tac. is absorbed be diligent in how you eat and what you drink as there are many things that can have an effect on your total health, but you are doing the right thing by having a conversation with your transplant team.

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I didn’t get the impression that she was implying that vitamin C was affecting my tac levels, but that they don’t recommend it in general because it boosts the immune system. The subject came up when I was contacted because my tac level was too high and she asked if anything I was taking had changed.

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