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Mentor

This and That and Talk - My Transplant

Posted by Rosemary, Volunteer Mentor @rosemarya, Apr 9, 2017

As our Mayo Connect community grows, I am constantly meeting organ transplant members on a wide variety of forums with a wide range of issues that are not directly transplant specific. However, because we are all transplant recipients, we have a special connection: a unique journey and best of all - a new life! We don't always need help or advice. Many times we just want to chat with someone like us! That is my purpose in starting This and That and Talk.

Drop in and say 'Hi'. You are welcome anytime.

What do you want t to talk about? What words can you offer to someone who is on the journey? Do you have any questions for another recipient?

Interested in more discussions like this? Go to the Transplants Support Group.

JK | @contentandwell | Oct 18, 2018
In reply to @fauneconner "JK, for kidney transplant 20 or below on the GFR seems to be the magic number...." + (show)
@fauneconner

JK, for kidney transplant 20 or below on the GFR seems to be the magic number. My husband took a plunge to 11 per cent so we knew it was time. Thank you! Faune

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@fauneconner definitely sounds like it is time. What a relief it will be for you and your husband.
JK

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JK | @contentandwell | Oct 18, 2018
In reply to @ghayden777 "Hello I am going to be a donor for my twin brother. I am very excited..." + (show)
@ghayden777

Hello I am going to be a donor for my twin brother. I am very excited to be able to give him a better life as we are very close as most twins are I guess. It has been a 3 year journey as I decided I wanted to do this for him. He started testing and found he had to have open heart surge. Scared the heck out of all of us. Heart trouble does run in the family. After that was done he found he had prostate cancer. Ugh!!! So now finally 3 years later he is good to go. Now up to me to get my testing done. Praying this all goes well and we can get this done.

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@ghayden777 thanks your brother sure has gone more than his share of problems. It’s wonderful though that he is finally to able to have a transplant and that you will be there for him..
I wish you both a speedy recovery, and that the surgery takes place soonJK

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 18, 2018
In reply to @abel "Hello everyone, I have a question how is the proccess of getting a kidney transplant in..." + (show)
@abel

Hello everyone, I have a question how is the proccess of getting a kidney transplant in another state? I was going to get one but my brother is not able to donated his kidney due to a disease. Do they help you with a place to stay until you recover or everything is out of pocket. Another question what state has the less amount of time to wait for a kidney transplant?

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Hi @abel, Here is a blog post written by our Transplant Team answering many of the questions you ask about out-of-state transplantation at Mayo Clinic.

- Q&A for Out-of-State Patients https://connect.mayoclinic.org/page/transplant/newsfeed/qa-for-out-of-state-patients/

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 18, 2018

@abel, I commend you for doing a thorough investigation of your options.

Whenever you have a question, I invite you to post it, and I or other members who share a similar experience are always here to share. And, always, you are welcome to join into any of the discussion groups at anytime, We are here 24/7 🙂

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abel | @abel | Oct 18, 2018

I’m actually 30 years old and thanks for the help and resources that you are giving me. I’m trying to see all my options open.

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abel | @abel | Oct 18, 2018
In reply to @gingerw "@abel Welcome to Connect! No doubt you are both very disappointed to receive that news, that..." + (show)
@gingerw

@abel Welcome to Connect! No doubt you are both very disappointed to receive that news, that your brother cannot donate to you. I cannot give you much information about other states, except to say each transplant center has their own criteria. You would have to go through testing again, specific to that center. If you are a veteran, check with the VA, as they will transport you to other states for a transplant. Please let us know what state you are in?
Ginger

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Hello thank you for reading my post. I’m located in New Jersey.

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Mentor
Ginger, Volunteer Mentor | @gingerw | Oct 18, 2018
In reply to @abel "Hello everyone, I have a question how is the proccess of getting a kidney transplant in..." + (show)
@abel

Hello everyone, I have a question how is the proccess of getting a kidney transplant in another state? I was going to get one but my brother is not able to donated his kidney due to a disease. Do they help you with a place to stay until you recover or everything is out of pocket. Another question what state has the less amount of time to wait for a kidney transplant?

Jump to this post

@abel Welcome to Connect! No doubt you are both very disappointed to receive that news, that your brother cannot donate to you. I cannot give you much information about other states, except to say each transplant center has their own criteria. You would have to go through testing again, specific to that center. If you are a veteran, check with the VA, as they will transport you to other states for a transplant. Please let us know what state you are in?
Ginger

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 18, 2018
In reply to @abel "Hello everyone, I have a question how is the proccess of getting a kidney transplant in..." + (show)
@abel

Hello everyone, I have a question how is the proccess of getting a kidney transplant in another state? I was going to get one but my brother is not able to donated his kidney due to a disease. Do they help you with a place to stay until you recover or everything is out of pocket. Another question what state has the less amount of time to wait for a kidney transplant?

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Good Morning and Welcome to Connect. I send your brother my thoughts and hopes for continued health and I admire his attempt to be a donor for you. And for you, @abel I send my hopes and some resources to help you with your future decisions.
In answer to your question about the amount of wait times, I refer you to the Scientific Registry of Transplant Recipients (SRTR) where you can access national data. Here are 2 articles that can help you to get started.

January 2018 Program Summary Report Highlights
https://connect.mayoclinic.org/page/transplant/newsfeed/january-2018-program-summary-report-highlights/
Transplant Resource: Using the Scientific Registry of Transplant Recipients
https://connect.mayoclinic.org/page/transplant/newsfeed/transplant-resource-using-the-scientific-registry-of-transplant-recipients/

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abel | @abel | Oct 17, 2018

Hello everyone, I have a question how is the proccess of getting a kidney transplant in another state? I was going to get one but my brother is not able to donated his kidney due to a disease. Do they help you with a place to stay until you recover or everything is out of pocket. Another question what state has the less amount of time to wait for a kidney transplant?

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3 replies
mauraacro | @mauraacro | Oct 16, 2018

@fauneconner I'm so happy for you and your husband! If you have any non medical donor questions, I probably asked them myself so feel free to ask.
My recipient is doing well enough that we just met up for a vacation! She has had a few bumps in the past 9 months but is doing so much better than when I 1st met her.
I have not had 1 regret since donating. With as crazy as things got at times, I am 100% sure I would do it again if I could.

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