Living Donor Kidney surgery next Tuesday: Any advice?

Posted by earlenes @earlenes, Fri, Jan 17 6:44am

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!

@rickhartleyjax

I am to be an anonymous donor on Feb 11 at Mayo Florida. Any surprises and words of advice??

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Congratulations @rickhartleyjax!
Mayo is pretty great at not having "surprises". They do so much ahead of time to plan for everything and the nurses are amazing. Although my husband was surprised that I only spent 1 night at the hospital.
Do you live near Mayo Florida or are you traveling? As excited as I was to get home, the hotel made it a lot easier not to overdo it.
Do you have questions or concerns? It's sometimes hard to voice things in real life. Its also difficult to find other donors to talk to.

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@mauraacro

Congratulations @rickhartleyjax!
Mayo is pretty great at not having "surprises". They do so much ahead of time to plan for everything and the nurses are amazing. Although my husband was surprised that I only spent 1 night at the hospital.
Do you live near Mayo Florida or are you traveling? As excited as I was to get home, the hotel made it a lot easier not to overdo it.
Do you have questions or concerns? It's sometimes hard to voice things in real life. Its also difficult to find other donors to talk to.

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I live in Jacksonville. I am 68 and a widower. My sister is coming to stay with me for a week. I'm looking forward to seeing her.

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@rickhartleyjax

I live in Jacksonville. I am 68 and a widower. My sister is coming to stay with me for a week. I'm looking forward to seeing her.

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@rickhartleyjax Thank you for stepping up to be a kidney donor! You rock the world of people in need of a donated organ! You've had some great tips and I'll add my support here, too. We look forward to your recount to us of the experience. I bet you find it life-changing for your recipient and you both!
Ginger

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@rickhartleyjax

I live in Jacksonville. I am 68 and a widower. My sister is coming to stay with me for a week. I'm looking forward to seeing her.

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Will you have any help after the 1st week?
I was able to take care of myself and do most things around the house but had a 10# lifting restriction for 6 weeks and that was the most difficult part. A gallon of milk weighs over 8#. Vacuuming or mowing is over the limit. Driving was not easy for a bit because of the seatbelt (the kidney brace helped with that) and turning to look but was manageable.
You won't need full time help after your sister leaves but if you have someone come in once a week or so, it will make your life easier and you deserve that!

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@mauraacro

Will you have any help after the 1st week?
I was able to take care of myself and do most things around the house but had a 10# lifting restriction for 6 weeks and that was the most difficult part. A gallon of milk weighs over 8#. Vacuuming or mowing is over the limit. Driving was not easy for a bit because of the seatbelt (the kidney brace helped with that) and turning to look but was manageable.
You won't need full time help after your sister leaves but if you have someone come in once a week or so, it will make your life easier and you deserve that!

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Good idea. I had not thought about that. I have a daughter who lives locally who I can ask to come help.

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@rickhartleyjax, Since you are in Jacksonville, here is something that you might be interested in: Liver, Kidney, Pancreas Transplant: Second Chance Support Group, Mayo Florida
https://connect.mayoclinic.org/event/liver-kidney-pancreas-transplant-second-chance-support-group/
One of our members, @corn50, has attended and perhaps would have some additinal information if you are interested.

@rickhartleyjax, What are you doing to calm your nerves and anxiety while you wait for the surgery? (My donor in 2009, was deceased, so I really don't know what you are gloing thru) Is your sister coming prior to the surgery? Do the two of you have any special plans?

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I absolutely cannot think of a better way to spend a gloomy central Kentucky afternoon than to drop in on some special people whom I have had the honor to meet on Mayo Connect. I invite everyone to pull up a virtual chair and join the conversation. What do you want to talk about? Are you a donor or are you considering being a donor? All are invited.

@rickhartleyjax, Today is Feb 11. I have had you on my mind all day. I hope that today is going well for you and for your recipient. And I look forward to hearing about your experience when you are online again. Hugs

@jgiovann, I decided to drop in to say Hi. I know that you are very concerned about your mom. How is she doing since she has been on dialysis. Is it helping her to feel better? Has there been any change in her antibodies?
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. Will a new kidney chain be formed when she is approved?

@earlenes – Now that you are several weeks away from the surgery I assume that you are having some kind of follow-up care by the transplant team. I hope that you are getting back to your normal level of activities.
You said that you were part of a kidney donor chain. This is something that I have only read about, and – Wow! – you have experienced being part of a chain.
I think that is a pretty amazing medical advance to be able to do that. I have a request for you. Would you share what it was like for you to participate in a donor chain: What was it like to be part of a donor chain? Were the surgeries within a certain time frame? Were they at different locations? Did you meet any of the other participants?

– Happy Valentines Day to everyone 💘

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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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@rosemarya

@earlenes, I am so very happy for you and for your recipient. Congratulations on your new title! Later on, after you are rested and have recovered, I hope that you will tell us more about your experience.

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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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@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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