Transplant list

Posted by ginal @ginal, Apr 11, 2018

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?

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.

REPLY

Hello @ginal,

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?

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@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.
Rosemary

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@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.

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@kanaazpereira

Hello @ginal,

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?

Jump to this post

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!

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@kanaazpereira

Hello @ginal,

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?

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@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.
Rosemary

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@kanaazpereira

Hello @ginal,

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?

Jump to this post

Thanks for inspiring story of you and your daughters’ Kidney experience. I am waiting for a donor and I enjoyed reading about your Blessing.
Denise

REPLY
@kanaazpereira

Hello @ginal,

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?

Jump to this post

@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.
JK

REPLY
@kanaazpereira

Hello @ginal,

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?

Jump to this post

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.

REPLY
@kanaazpereira

Hello @ginal,

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?

Jump to this post

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.

REPLY
@kanaazpereira

Hello @ginal,

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?

Jump to this post

@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.
https://connect.mayoclinic.org/page/transplant/
Rosemary

REPLY
@kanaazpereira

Hello @ginal,

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?

Jump to this post

@dshaver, I hope that you feel the prayers that I am sending your way.
Also sending strength and hugs.
Rosemary

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