Living Donor Kidney surgery next Tuesday: Any advice?

Posted by earlenes @earlenes, Jan 17, 2020

I’m scheduled for surgery next Tuesday in Jacksonville. Any words of advice, lessons learned, etc? I’m excited and just a little nervous. My emotions have been on high alert. I get choked up whenever I talk about it. The idea that my donation will potentially save someone’s life just fills my heart to bursting. I’m the start of a paired exchange chain of 7 transplants. Just WOW!

@earlenes

My experience has been very positive. The surgery itself was as expected. Laparoscopic, took about 5 hours. I had quite a bit of pain upon waking up but once I had some heavy duty pain meds on board, I was fine. I went home the following day. Within a few days I was able to control the pain with only Tylenol and I was driving within a week. One complication that is not directly related to the surgery, I developed shingles about two weeks post-op. They were definitely more uncomfortable than recovering from the surgery! I'm now coming up on 4 weeks and pretty much feel back to normal. I find that my energy level isn't quite what it was, but it's getting better every day.

I hear from my recipient's wife every couple of days with progress reports and he is doing fabulous! I have zero regrets about being a living donor and will continue to tell everyone I can about my amazing experience!

Pair #2 of my 7-way chain is scheduled for surgery on March 3 at Mayo Jax!!!

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@Darlene Thank you for checking back in with us! Glad to hear your recovery has been unremarkable. And, ouch for the shingles! We look forward to hearing about your gift as it pertains to the chain donation.
Ginger

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Yes, thank you the update. I got shingles a few months after my second liver transplant that seemed to last about 2 months. Hoping your good recovery continues.

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@jgiovann

Hi Rosemary!
Aww.. thank you for thinking about me and my Mom, that is very kind.

She is doing alright on dialysis, much better than she was before starting dialysis and better than she was at the beginning of dialysis. The month before dialysis started she was getting progressively weaker, needed a walker to walk anywhere further than just around the house, and was having problems with shortness of breath. Most of that has resolved since starting dialysis, except she is still very fatigued. They attribute this to her anemia, they aren't sire if it's secondary to her kidney failure or another unrelated issue, they're sending her for a colonoscopy. When she first started dialysis she was very dehydrated, dizzy, and nauseous from the fluid removal, this has subsided as they have adjusted for her specific needs- they replace all of the fluid they take off. She hates being on dialysis (who doesn't?) and we are still very hopeful for a transplant.

Her last blood draw in January showed stable antibodies. She had more bloodwork done on 2/3 and if that also shows stable antibodies they will put us back on the paired donation list. We should find out Friday 2/14 or Monday 2/17 hopefully (they say it takes 10 business days to result the labwork). Once we are back on the paired donation list the National Kidney Registry can start looking for a chain for us again. It can take anywhere from 2 weeks to one year for them to find a chain. We've been told that her antibodies will not make it harder for them to find a chain, but I find that hard to believe. She used to have one antibody and now she has 14, that has got to be harder to match? I'm hopeful we will be relisted soon and that they will find a chain as soon as possible.

Thank you so much for your kind words. It humbles me to know that a complete stranger takes the time to think about my mother and I. Thank you.

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My thoughts are with you, and your Warrior Mom. My husband and daughter are scheduled for recipient and donor kidney transplants April 15. To date, my husband has not needed dialysis, so here’s hoping…Though you and your Mom have gone through so much, you inspire me, and I am sure, others to keep fighting. Donor pairing was not necessary in our case, but talking about it and sharing with friends has made that possibility important to many. Thank you.

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@tasher3433

My thoughts are with you, and your Warrior Mom. My husband and daughter are scheduled for recipient and donor kidney transplants April 15. To date, my husband has not needed dialysis, so here’s hoping…Though you and your Mom have gone through so much, you inspire me, and I am sure, others to keep fighting. Donor pairing was not necessary in our case, but talking about it and sharing with friends has made that possibility important to many. Thank you.

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Wow, @tasher3433, this is exciting!

Now you can start to prepare for the next part of this journey and I would like to share some discussions wth you.
-Transplant Caregiver Advice: Got Tips to Share?
https://connect.mayoclinic.org/discussion/transplant-caregiver-advice-got-tips-to-share/
-Packing question: What did you have ready for "the call"? (also for scheduled transplant surgery)
https://connect.mayoclinic.org/discussion/packing-question/
Thank you for sharing. You and your family are an inspiration and are helping to spread the message about organ donation.

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This discussion, where you are sharing your experiences about living kidney donation is growing and is filled with expert information.

@joanaiken, @earlenes, @rickhartleyjax, @tasher3433, @jgiovann, @cleverusername, @corn50 – When you want to address a particular member, or are replying to a particular member it helps to mention that member.
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@earlenes

My surgery is done and I am now an official ‘one beaner!’ I met the recipient and he is doing great! Thanks for all of the good advice!

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You are incredible!

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@tasher3433

My thoughts are with you, and your Warrior Mom. My husband and daughter are scheduled for recipient and donor kidney transplants April 15. To date, my husband has not needed dialysis, so here’s hoping…Though you and your Mom have gone through so much, you inspire me, and I am sure, others to keep fighting. Donor pairing was not necessary in our case, but talking about it and sharing with friends has made that possibility important to many. Thank you.

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Thank you for your kind words. Best of luck to your daughter and husband! <3

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@earlenes, @cleverusername, @rickhartleyjax, – What do you have to say in response to this question that was posted yesterday by fellow kidney donor, @mauraacro: With all of the news lately is anyone else wondering how either the virus, flu or any medication needed would affect the remaining kidney?
-Kidney transplant > The Journey from the Donor's Side
https://connect.mayoclinic.org/discussion/kidney-transplant-from-the-donor-side/?commentsorderby=DESC#chv4-comment-stream-header
@tasher3433, Is your husband still able to maintain his health without dialysis?
@jgiovann, I am still thinking about you and your mom. Any updates to share?
Is the current coronavirus presenting any special considerations as far as scheduling a transplant surgery for either of you?

I'm sending positive thoughts, hope, and some sunshine with this message. I look forward to hearing that you are all doing okay.

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@rosemarya

@earlenes, @cleverusername, @rickhartleyjax, – What do you have to say in response to this question that was posted yesterday by fellow kidney donor, @mauraacro: With all of the news lately is anyone else wondering how either the virus, flu or any medication needed would affect the remaining kidney?
-Kidney transplant > The Journey from the Donor's Side
https://connect.mayoclinic.org/discussion/kidney-transplant-from-the-donor-side/?commentsorderby=DESC#chv4-comment-stream-header
@tasher3433, Is your husband still able to maintain his health without dialysis?
@jgiovann, I am still thinking about you and your mom. Any updates to share?
Is the current coronavirus presenting any special considerations as far as scheduling a transplant surgery for either of you?

I'm sending positive thoughts, hope, and some sunshine with this message. I look forward to hearing that you are all doing okay.

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Thank you for your kind thoughts, Rosemary and Co! Yes! He is maintaining with a GFR of 13. The nephrologist last week asked him if he was ready to go on dialysis, and said “good answer” when my husband said No! Although he is bone shaking cold for about an hour a day, sweatshirts and heating blankets are a Godsend. As well as a heated massage chair. He is in good humour. And looking forward to an annual golf trip with 3 brothers and friends. He doesn’t dwell on the numbers, but continues to look ahead. Pre op screening is scheduled for Apr 1 at Mayo Scottsdale, and transplant day is scheduled for Apr 15. I send best wishes to all of you, recipients, donors and caregivers and thank all of you for sharing your journeys. Be well.

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@rosemarya

@earlenes, @cleverusername, @rickhartleyjax, – What do you have to say in response to this question that was posted yesterday by fellow kidney donor, @mauraacro: With all of the news lately is anyone else wondering how either the virus, flu or any medication needed would affect the remaining kidney?
-Kidney transplant > The Journey from the Donor's Side
https://connect.mayoclinic.org/discussion/kidney-transplant-from-the-donor-side/?commentsorderby=DESC#chv4-comment-stream-header
@tasher3433, Is your husband still able to maintain his health without dialysis?
@jgiovann, I am still thinking about you and your mom. Any updates to share?
Is the current coronavirus presenting any special considerations as far as scheduling a transplant surgery for either of you?

I'm sending positive thoughts, hope, and some sunshine with this message. I look forward to hearing that you are all doing okay.

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I was a living donor on February 11. I have complete trust and faith in the Mayo staff. They will not do anything that will endanger you or the recipient. You can take that to the bank. Since my surgery I have been using common sense to protect my health. I'm getting plenty of rest. God has blessed me with the ability to help someone else in a very meaningful way. I think the donation has helped me just as much as the recipient.

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@rosemarya

@earlenes, @cleverusername, @rickhartleyjax, – What do you have to say in response to this question that was posted yesterday by fellow kidney donor, @mauraacro: With all of the news lately is anyone else wondering how either the virus, flu or any medication needed would affect the remaining kidney?
-Kidney transplant > The Journey from the Donor's Side
https://connect.mayoclinic.org/discussion/kidney-transplant-from-the-donor-side/?commentsorderby=DESC#chv4-comment-stream-header
@tasher3433, Is your husband still able to maintain his health without dialysis?
@jgiovann, I am still thinking about you and your mom. Any updates to share?
Is the current coronavirus presenting any special considerations as far as scheduling a transplant surgery for either of you?

I'm sending positive thoughts, hope, and some sunshine with this message. I look forward to hearing that you are all doing okay.

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Thank you. No new information. Still waiting on the NKR. With my Mom's high PRA of 83% it may be a long wait

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@jgiovann

Thank you. No new information. Still waiting on the NKR. With my Mom's high PRA of 83% it may be a long wait

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Hi, @jgiovann. It is very sweet of you to check in, even with no new news. My experience says that there can be long periods of nothingness. I also know that these long periods can be lonely times. when the patient and caregiver feels that they are the only people on the entire earth feeling this way, and that everybody is moving forward without them. That is how it was for me and my husband on many occassions. I want you to know that we are always here if you want to chat and break the monotony.
How is your mom feeling? What does she do to fill the time while waiting?

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