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.

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@jgiovann

Thank you very much. I am most nervous about there being complications for me or my mother or my Mom's body rejecting the new kidney. I am also very worried being intubated, I have never had surgery or been hospitalized before. I am also worried about post-op pain control…People on here saying they went home the day after surgery is amazing! I am having surgery at Strong Memorial Hospital in Rochester, NY and they anticipate my being in the hospital 4-7 days and more incs incisions then people on here have said.. makes me nervous 🙁

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@jgiovann It's natural to be nervous but from what I have seen and heard, complications are few and far between. Pain control is fairly well managed considering that opioids are so conservatively administered these days. There have been studies that have found ibuprofen to be just about as effective as opioids too, so if you can take them you will be fine.
Also, I think hospitals often suggest a longer stay time than typical, just in case it is needed.
Regarding the possibility of your mother rejecting the new kidney, if it did happen please remember that you at least tried by being part of a paired donor exchange. I admire you for being there for your mother, and I am sure she must appreciate it tremendously. My daughter wanted to do that for me but things did not work out.
I think if a person has a rejection that the person goes to the top of the list for a new organ, but I may not be right with that. You could ask about that at the transplant center.
JK

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@jgiovann

Thank you! I am most nervous about there being complications for me or my mother or my Mom's body rejecting the new kidney. I am also very worried being intubated, I have never had surgery with general anesthesia before. I am also worried about post-op pain control...

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@jgiovann Thank you for going through the rigorous testing to be a living donor! It is quite the battery of exams both physically and emotionally, isn't it? That's because the transplant team wants the best fit possible for your mother, and the best health for you. Yes, any surgery is a scary thing, and we appreciate you being honest in that. As you have read, the team will be right there with you, and so will we! You mentioned rejection of the new-to-your-mother kidney. Rejection is a remote possibility anytime, and it is nothing that anyone can foresee. Remember all those tests you went through - it's to make sure everything is optimum for the transplant to successful. Keep your great attitude. Feel free to express your worries or concerns here, and your joy after the surgery! There are several members here who have been where you are. If, heaven forbid, you have kidney issues in the future, you are placed in priority on the transplant list, since you were a donor. This happened to my friend 20 years after he donated a kidney to his sister. For today, blessings on you, your mother, your support teams, and the transplant team.
Ginger

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@jgiovann

Thank you very much. I am most nervous about there being complications for me or my mother or my Mom's body rejecting the new kidney. I am also very worried being intubated, I have never had surgery or been hospitalized before. I am also worried about post-op pain control…People on here saying they went home the day after surgery is amazing! I am having surgery at Strong Memorial Hospital in Rochester, NY and they anticipate my being in the hospital 4-7 days and more incs incisions then people on here have said.. makes me nervous 🙁

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Complications can happen and I completely understand being nervous about.
I had complete faith in the medical side of things. All of the tests you had were to determine not only how well you would live the rest of your life with 1 kidney but how you would do in and after surgery. The very cynical side of me says that not only is this a very expensive surgery but the surgeon and the hospital have a reputation to uphold and would not do it if they didn't think the outcome would be positive for you and your mom.
I am great at avoiding thinking about scary things and worried instead about having time to clean out my furnace filter and fridge before I left. I did want to know the real deal about surgery, before and after so I talked with people on here and also found a "donor buddy" because I had a hard time finding (non medical) info from the donor perspective.
http://livingdonorsonline.org/living-donor-buddies/living-kidney-donor-buddies/
I don't know if you read the very beginning of my "journey" but I was 50, not a marathon runner or even a regular at the gym and could only find stories about those guys donating and I wanted to talk to someone more like me. My donor buddy was a lot more like me than someone doing decathlons.
I had laparoscopic surgery so only have the one incision. I don't know if what goes into the surgeon's decision to do it that way but it seems like a good question. Do you have a social worker from the hospital? Mine worked as a go between for all of the different departments and could either answer questions or direct me to the answer.
As for pain, I had an injection into my abdomen before they stitched me up which lasted 24 hours and of course had pain meds in my IV and to take orally while I was in the hospital. I left with a prescription for 10 days of pain meds and extra strength Tylenol. I think I took the pain meds on schedule for a couple of days and then only at night after that, I took the tylenol mid day or as needed for about a week. I was not being strong or tough, it didn't actually hurt enough for more than Tylenol.
As @contentandwell said, hospitals err on the side of caution and pick the longest times they'd expect you to stay. I was told 2 nights but passed all of my checkpoints so left early. They encouraged me to stay 1 more night if I would be more comfortable.
Keep asking questions and talking about it! As you probably noticed, there isn't much out there from the donor side and the more donors and potential donors searching and finding information, the better!

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@jgiovann

Thank you very much. I am most nervous about there being complications for me or my mother or my Mom's body rejecting the new kidney. I am also very worried being intubated, I have never had surgery or been hospitalized before. I am also worried about post-op pain control…People on here saying they went home the day after surgery is amazing! I am having surgery at Strong Memorial Hospital in Rochester, NY and they anticipate my being in the hospital 4-7 days and more incs incisions then people on here have said.. makes me nervous 🙁

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Part one of my reply was so long I thought I would do this separately.
Most of the people here are recipients and would be better able to answer question about how your mom will fare. I met the woman I donated to the day before surgery so I can't give you too much back story. She was 60, had been on dialysis for almost 5 years and had acquired diabetes and gout along the way. She couldn't walk more than a block without resting and was only urinating once a day.
The kidney started working immediately and her gout disappeared quickly. She is able to manage her diabetes through diet now. She was walking around the day after surgery and left the hospital after 4 nights. She was able to walk the 5 blocks to our hotel. She had to stick around for about a month (she lives 5 hours from the hospital) for appointments.
She had some minor signs of rejection in the 1st year but has been able to drastically reduce hers meds since then and is not showing any signs of rejection. I think she still goes in for labs about once a month and to the doctor every 6 months.
We talk every week and don't go into much medical detail but she is doing well and decided to go back to work because she was getting bored! Since her surgery, we have gone to Mexico for her oldest daughter's wedding, she was at the hospital for the birth of her daughter in law and son's baby.and is helping plan her youngest daughter's wedding. She is very active and I love hearing about her adventures.
Organ donation is truly a miraculous thing and I'm so glad when someone can be a part of it.

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@jgiovann

Hello!
I was looking for firsthand experiences from living donors and stumbled across this website. Would anyone who has been a living donor personally mind telling me about what your experience was like the day of surgery and during your recovery? How much pain were you in? Any advice on how to make it go as well as possible?
After the grueling process of testing, I am finally cleared as a donor. My mother has PKD and now has ESRD and just started dialysis. We are not a direct match so we joined the Paired Donor Exchange System. They have found a chain for us and we are planning on having surgery Friday 12/6/19. I am very, very excited that after such a long road there is light at the end of the tunnel. But I am also a bit nervous... I would greatly appreciate any insight anyone has. Thank you!

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@rebekahinvt, I want to introduce you to @jgiovann who is scheduled for surgery to donate a kidney to a donor chain. I invite you to add your experience here. Perhaps you can relate to the nervous state that @jgiovann, is currently experiencing.

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@jgiovann

Hello!
I was looking for firsthand experiences from living donors and stumbled across this website. Would anyone who has been a living donor personally mind telling me about what your experience was like the day of surgery and during your recovery? How much pain were you in? Any advice on how to make it go as well as possible?
After the grueling process of testing, I am finally cleared as a donor. My mother has PKD and now has ESRD and just started dialysis. We are not a direct match so we joined the Paired Donor Exchange System. They have found a chain for us and we are planning on having surgery Friday 12/6/19. I am very, very excited that after such a long road there is light at the end of the tunnel. But I am also a bit nervous... I would greatly appreciate any insight anyone has. Thank you!

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Hi there! I’m a living liver donor and I would be happy to answer questions that you may have.

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@jgiovann, I want to drop you a note to let you know that I am thinking about you and your mom. I hope that everything has gone as planned and that you and your mom were able to have the surgery on Dec, 7.
How about you, how are you doing with recovery? And your mom, Is she able to be off dialysis yet?

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Thank you so much for checking in. Unfortunately surgery did not go as planed. A week prior to the surgery it was cancelled. My mom's antibodies changed, most likely due to a blood transfusion that she had in October when her anemia peaked, and they didn't catch it until the bloodwork at our pre-anesthesia testing. She was no longer a match with her donor and the chain was cancelled. We were crushed. We were taken off the NKR, marked "inactive". Now we're waiting for the antibodies to stabilize. Once they see that they have remained unchanged for a few months they will re-list us.

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@jgiovann, Wow, I know how disappointed you and your mom are. I was once inactivated from the transplant list for 2 months, and when I read your reply, I knew exactly what you feel. I am sorry for this delay.
Will your mom need to have dialysis during this interval?

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Yes, she started dialysis on 10/16/19. When she was in the hospital having her catheter put in they decided to give her the blood transfusion. Dialysis was rough at first, she actually still produces urine and has about 6% kidney function, so at first she was getting very dehydrated and dizzy, but they've adjusted to her needs and she's adjusting. We're actually about to graduate a class to do in home hemodialysis. We're going to do it at home for the first time on Thursday!

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