Mayo Clinic Connect
Hi, I started Hemo Dialysis 3 weeks ago. My question is when do you usually start all the tests and get put on a transplant list?
Liked by cehunt57
As soon as possible. your nephrologist can refer you to a center and the dialysis unit will send blood every month…if you are going to a unit and ask around or rather let as many people know you need a transplant, you'd be surprised who would to give you one of theirs.
Liked by Rosemary, Volunteer Mentor, Kanaaz Pereira, Connect Moderator, cehunt57
Welcome to Connect; I'm so glad you've joined us. We have so many incredibly informative conversations taking place about kidney transplant. To begin, I've listed a few below:
– Getting Listed for Transplant https://connect.mayoclinic.org/newsfeed-post/getting-listed-for-transplant/
– Kidney transplant https://connect.mayoclinic.org/discussion/kidney-transplant-1/
– It's been too long,but surely here and finally on the waiting list https://connect.mayoclinic.org/discussion/its-been-too-longbut-surely-here-and-finally-on-the-waiting-list/
I’m tagging @contentandwell @IWantToBelieve @cmael @dshaver @2011panc @sevkira @mlmcg @coastalgirl @ters1993 @bszychow @scottb32 @wmoser2613 @hardaway3 @katieslost @karis @jtannen1 and Mentor @rosemarya, as they may be able to share their transplant stories with you.
@ginal, we look forward to getting to know you and supporting you on your transplant journey; would you share a few more details about yourself?
Liked by Rosemary, Volunteer Mentor, cehunt57
@ginal, Good Morning. I am happy to meet you and I join in sending a welcome to Mayo Connect. I am a liver/kidney recipient. My dialysis experience was due to acute kidney failure from my liver failure. I see that you have already met Charlie who is also a kidney recipient with a wealth of valuable experience.
@ginal, there is currently an active discussion about transplant evaluation happening in Transplant Group that I will share with you by an introduction and direct link to the group. If you do not receive the notification, let me know.
I want to also direct you to the Transplant Discussion Group – https://connect.mayoclinic.org/group/transplants/ – I invite you to read thru the conversation, and ask a question any where. I know you will get a reply from someone who has an experience to share.
You are not alone. and we look forward to being here for you.
Liked by Rosemary, Volunteer Mentor, JK, Volunteer Mentor, cehunt57, ginal
@ginal In my opinion, you should have already begun the transplant screening process. As it is, start as soon as possible. I do know that once you are on dialysis it adds a level of urgency to your placement and prognoses of transplant. In my case my pancreas failed and I had State 3 Kidney Failure when I received a pancreas only transplant and was told that I would probably need a kidney transplant within 3 years. Once I was stabilized following my pancreas transplant surgery I was transferred to the kidney transplant team and very quickly put on the kidney transplant list. Through the transplant testing we discovered that I had a high oxalate level in my kidneys that was a big part of the damage I was experiencing. I began a low-oxalate diet and within a year my kidneys improved enough that I was removed from the kidney transplant list. This is a rare occurrence, I believe. I have thankfully not needed dialysis and want to delay both that and transplant as long as possible. Kidney transplant and dialysis patients can help you with more details, since I have not experienced either. Good luck and God Bless.
Liked by Rosemary, Volunteer Mentor, cehunt57, ginal
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Tomorrow will be one week since my transplant. My daughter was the donor. Everything went well. In fact I was wide awake the afternoon after surgery and visiting with family. It did get worse after a couple of days with a lot of cramping followed by nasty diarrhea.Both my daughter and I wound up staying an extra day. She was having a lot of pain from the air that they inflate the abdomen with. We are both back at our rental home. She’s doing great and I’m doing well with pain-at the surgical site.We are spending our days with trips to Mayo for labs, dr visits, and education. I wish the future transplant patients the best!
Liked by Scott, Kanaaz Pereira, Connect Moderator, cehunt57
@cmael, This is great news! Thanks for thinking of us and sharing this update! I am happy that you and your daughter are both doing well and recovering. This is something that I want to ask you yo share in the Transplant Discussion Group when you feel up to it! I remember those busy days of doctor visits, education and labs;-)
We will celebrate with you tomorrow.
Liked by JK, Volunteer Mentor, cehunt57
Thanks for inspiring story of you and your daughters’ Kidney experience. I am waiting for a donor and I enjoyed reading about your Blessing.
@cmael Wonderful that you and your daughter are doing so well. You must feel very proud of your daughter's generosity. A transplant is truly a new lease on life.
Liked by cehunt57, cmael
Hi, I'm Gina 55 years old, live in NW Minnesota. I have had kidney disease for years, was stage 3 for along time and when I got to stage 4 it went fast. My last GFR was 23. I started Dialysis on 3/27/18 3 times a week in Grand forks ND. I plan on getting a stomach catheter put in so I can do home dialysis because Hemo makes me feel so sick. I'm trying to learn as much as I can, it can be a little overwhelming but I know it's a journey.
My daughter wants to be tested to see if she is a match but I'm having a hard time letting her. I was told God gave us two kidneys one to keep and one to share. I wish you and your daughter the best.
@ginal, I respect your opinion about your daughter donating her kidney to you, And I especially admire your determination to find your way in this maze of uncertainty. I do want to share the following link in case you and daughter would like to look at it.
The Transplant PAGES contains information for all levels of a transplant journey.
Liked by cehunt57, ginal
@dshaver, I hope that you feel the prayers that I am sending your way.
Also sending strength and hugs.
@mlmcg, @gaybinator, Do you have anything from your experience that might be helpful to @ginal about dialysis. and about getting listed for a kidney transplant? This is out of my own experience, and ginal is looking for someone to talk to and to learn from.
Thank you Rosemary,
My symptoms continue as I wait. I have insomnia now. It might be from the worry. My nephew was tested for Paired Donation a week ago. He hasn’t heard anything. I continue to wait as patiently as possible.
@ginal My daughter and son both volunteered to be a living liver donor for me. I very much discouraged them but my daughter persisted. I finally got her the info at her constant urging, they said she could go through the tests at one of the NYC transplant hospitals but then it did not work out.
I really did not want my son to because I felt it would be very disruptive to his career since he would have to come east for about a month (he lives in CA) but I know if he thought I was absolutely urgent he would have been on the next plane east.
I would suggest that you let your daughter get tested at some point and then if it does become urgent she will be ready to go. She can be tested and you can still try to wait for a cadaver donor. I know the wait for kidneys is very long though.
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