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Mentor

Organ Donation and Transplant: What is Your story?

Posted by Rosemary, Volunteer Mentor @rosemarya, Oct 26, 2020

Every transplant patient has a unique story to tell. Let's create this place to share our stories. By sharing, we can meet others like us, we can encourage people who are at the beginning of their journey, and we can support those who are on the waiting list.

Here are some questions for you to consider as you write your story:
– Focus on yourself and how you felt, what you did, who helped you.
– How did you find out that you would need an organ transplant?
– What was the waiting and recovery like for you?
– How has your life changed since your transplant?

Organ donation and transplant is a very personal. To respect the privacy of all be sure to have permission before sharing identifying details about others involved in your story, for example
– your donor/recipient (age, circumstances of death, etc)
– your caregiver or family members (say "my husband", rather than using a full name)

What is your transplant story?

Note: If you want to ask a question for another member who has posted their transplant story here in this discussion, be sure to add their @membername in your post, for example @rosemarya. Your question may already be discussed in other transplant discussions. Be sure to check here first: https://connect.mayoclinic.org/group/transplants/ That way this discussion can be reserved for member transplant stories and hopefully make it easier to read and find similar symptoms to your own.

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

gaylea1 | @gaylea1 | Jan 5, 2021

@rosemarya Hello Rosrmary. I've been absent for a bit. I've been pondering over sharing my particular story. As you may remember I had every symptom at its worst prior to surgery and subsequent surgeries and ERCP's since. My story is long and really not pleasant. After my last ERCP thd end of June I have still not been well. With 5 bouts of pancreatitis in less than two years my poor body just hasn't had the strength to recover. I still can't eat a regular diet and I'm sick every day. Lately I feel like I did during a bad episode. Forgetful and always dizzy and trembling. I have blood work taken monthly and the results are always ok. I seem to have another lesion or growth on the same arm as the last cancerous growth was removed. I'm being checked for diabetes and the shingles from Feb are surfacing. These are all post transplant problems. So ... for now I'm laying low and doing my best. We're back in lockdown in Ontario so I'm housebound again.

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2 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 5, 2021
In reply to @gaylea1 "@rosemarya Hello Rosrmary. I've been absent for a bit. I've been pondering over sharing my particular..." + (show)
@gaylea1

@rosemarya Hello Rosrmary. I've been absent for a bit. I've been pondering over sharing my particular story. As you may remember I had every symptom at its worst prior to surgery and subsequent surgeries and ERCP's since. My story is long and really not pleasant. After my last ERCP thd end of June I have still not been well. With 5 bouts of pancreatitis in less than two years my poor body just hasn't had the strength to recover. I still can't eat a regular diet and I'm sick every day. Lately I feel like I did during a bad episode. Forgetful and always dizzy and trembling. I have blood work taken monthly and the results are always ok. I seem to have another lesion or growth on the same arm as the last cancerous growth was removed. I'm being checked for diabetes and the shingles from Feb are surfacing. These are all post transplant problems. So ... for now I'm laying low and doing my best. We're back in lockdown in Ontario so I'm housebound again.

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@gaylea1, I am sad to hear that you are still having difficulties. It took great strength and courage for you to post this difficult part of your story here. I want you to know that when you are feeling better, and your body has recovered, that you absolutely must come back to this Discussion and add to your story.

I am trying to preserve this group for stories, so - while you and all of us are housebound, I want you to keep reading the ongoing discussions and join the conversation, or simply enjoy the company of your fellow transplant patients.
We have some newer members in the Liver transplant support group. https://connect.mayoclinic.org/discussion/liver-support-group/

-and -
If you are looking for something to get your mind off your surroundings, here is a discussion group named: Just Want to Talk. You can scroll thru the list, and find topics such as -
Art for Healing
Smile Bringers for Animal Lovers
Journaling - The Write Stuff For You?
The Chat Room: A place to talk about this and that
How about a laugh, (hopefully)
https://connect.mayoclinic.org/group/other/

Peace and hugs.

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JK | @contentandwell | Jan 6, 2021
In reply to @gaylea1 "@rosemarya Hello Rosrmary. I've been absent for a bit. I've been pondering over sharing my particular..." + (show)
@gaylea1

@rosemarya Hello Rosrmary. I've been absent for a bit. I've been pondering over sharing my particular story. As you may remember I had every symptom at its worst prior to surgery and subsequent surgeries and ERCP's since. My story is long and really not pleasant. After my last ERCP thd end of June I have still not been well. With 5 bouts of pancreatitis in less than two years my poor body just hasn't had the strength to recover. I still can't eat a regular diet and I'm sick every day. Lately I feel like I did during a bad episode. Forgetful and always dizzy and trembling. I have blood work taken monthly and the results are always ok. I seem to have another lesion or growth on the same arm as the last cancerous growth was removed. I'm being checked for diabetes and the shingles from Feb are surfacing. These are all post transplant problems. So ... for now I'm laying low and doing my best. We're back in lockdown in Ontario so I'm housebound again.

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@gaylea1 I am truly sorry to hear of the problems you have been having. We all figure that once we have a transplant our problems are behind us but that's not so for everyone, you obviously being one of those people.

Laying low is what we all have to do for now. With your problems will you be able to get the vaccine? If so hopefully that will give you a bit more leeway in being able to do a few non-demanding things. Lockdown is not pleasant for any of us. I find that some days depression suddenly sets in with no provocation.

Stay strong and hopefully, the future will be better for you. We are here for you.
Hugs, JK

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1 reply
gaylea1 | @gaylea1 | Jan 7, 2021
In reply to @contentandwell "@gaylea1 I am truly sorry to hear of the problems you have been having. We all..." + (show)
@contentandwell

@gaylea1 I am truly sorry to hear of the problems you have been having. We all figure that once we have a transplant our problems are behind us but that's not so for everyone, you obviously being one of those people.

Laying low is what we all have to do for now. With your problems will you be able to get the vaccine? If so hopefully that will give you a bit more leeway in being able to do a few non-demanding things. Lockdown is not pleasant for any of us. I find that some days depression suddenly sets in with no provocation.

Stay strong and hopefully, the future will be better for you. We are here for you.
Hugs, JK

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@contentandwell you are always so understanding and full of positivity. I've always appreciated your support. There are just so many new people full of hope and questions that I don't like to drag my story on and on but that is just what seems to be happening. Post transplant I've just had so many problems from diabetes (post transplant) skin cancer shingles 5 ERCPs pancreatitis and over 12 hospital stays lasting no less than 10 days each. Now I can't digest food as my pancreas has been messed about with so much. I'm back on domperidone and lansaprozole to try and sort this out. I am actively isolating as Ontario is in lockdown but I also moved cities to look after my 86 year old Mum. Right now she's healthier than me 😔

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1 reply
JK | @contentandwell | Jan 7, 2021
In reply to @gaylea1 "@contentandwell you are always so understanding and full of positivity. I've always appreciated your support. There..." + (show)
@gaylea1

@contentandwell you are always so understanding and full of positivity. I've always appreciated your support. There are just so many new people full of hope and questions that I don't like to drag my story on and on but that is just what seems to be happening. Post transplant I've just had so many problems from diabetes (post transplant) skin cancer shingles 5 ERCPs pancreatitis and over 12 hospital stays lasting no less than 10 days each. Now I can't digest food as my pancreas has been messed about with so much. I'm back on domperidone and lansaprozole to try and sort this out. I am actively isolating as Ontario is in lockdown but I also moved cities to look after my 86 year old Mum. Right now she's healthier than me 😔

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Thank you, @gaylea1. I truly am so sorry for your continuing problems. I don't know how things are in Canada, but if your current medical team does not seem to be helping can you get other opinions? Your problems seem to exceed what is typical for post-transplant.

We too are isolating, not going anywhere except out in my non-crowded area to take walks. We have everything delivered.
You are so good, with your own problems, to be helping actively with your mother. I'm sure she appreciates it. My husband is 85 and he jokes that when he married he figured I would be taking care of him in his old age but he has zero problems. I have been the one with problems, which thankfully now are only two - osteoporosis and my diminishing hearing.
My thoughts and hopes for things to improve for you are with you. I hope you will keep us informed on how you are doing.
JK

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mverbick | @mverbick | Mar 8, 2021
In reply to @rosemarya "Welcome. This discussion is for everybody involved in organ transplantation. You do not need to be..." + (show)
@rosemarya

Welcome. This discussion is for everybody involved in organ transplantation. You do not need to be a gifted writer to tell your story. If you like to write in paragraphs, or if you like to use lists or bulleted items please feel free to do so. Your story might be long or it might be short, and you can share what you are comfortable to share about yourself.
We look forward to reading your story.

@glinda, @billacaregiver, @gphetteplace, @azdan99, @jolinda, @gaylea1, @2011panc, @john1492, @tasher3433, @btwest6, @tjgisewhite, @jsw, @michaelswaim, @loungingsofa70, @mpow00, @estrada53, @cmael, @jodeej, @jerrynord,@ca426, @almula, @amyintucson, @guidant07 and all members.

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@rosemarya Rosemary, I was approved as a living kidney donor at Mayo Clinic Rochester two weeks ago. I will be giving a kidney to my husband. Our surgeries are scheduled for this April 20 - nine days before my 70th birthday. I am feeling relieved, amazed, and grateful. I am also a little anxious because I know this is a journey, not a destination. I have been encouraged by following the stories here and wanted to thank you for your kind and wise words.
Rosenander

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2 replies
Mentor
Ginger, Volunteer Mentor | @gingerw | Mar 8, 2021
In reply to @mverbick "@rosemarya Rosemary, I was approved as a living kidney donor at Mayo Clinic Rochester two weeks..." + (show)
@mverbick

@rosemarya Rosemary, I was approved as a living kidney donor at Mayo Clinic Rochester two weeks ago. I will be giving a kidney to my husband. Our surgeries are scheduled for this April 20 - nine days before my 70th birthday. I am feeling relieved, amazed, and grateful. I am also a little anxious because I know this is a journey, not a destination. I have been encouraged by following the stories here and wanted to thank you for your kind and wise words.
Rosenander

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@mverbick How wonderful! I know several people who have kept a journal, either as a donor or recipient. A friend received her kidney 4 years ago, started and has kept up a journaling practice, and now reads bits and pieces of it to her daughter, who recently turned 1 years old!
Ginger

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 9, 2021
In reply to @mverbick "@rosemarya Rosemary, I was approved as a living kidney donor at Mayo Clinic Rochester two weeks..." + (show)
@mverbick

@rosemarya Rosemary, I was approved as a living kidney donor at Mayo Clinic Rochester two weeks ago. I will be giving a kidney to my husband. Our surgeries are scheduled for this April 20 - nine days before my 70th birthday. I am feeling relieved, amazed, and grateful. I am also a little anxious because I know this is a journey, not a destination. I have been encouraged by following the stories here and wanted to thank you for your kind and wise words.
Rosenander

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@mverbick, Happy 'soon to be' Birthday and Transplant Day.
I am happy to hear how much encouragement you have found here! I invite you back when you are recovered and rested to share your story here, too. I want to hear more about your journey.

Here are some discussions that I want to share with you:
-Kidney Transplant: Questions as I prepare for transplant
https://connect.mayoclinic.org/discussion/kidney-transplant-questions/

-Donated my Kidney: May 20, 2020
https://connect.mayoclinic.org/discussion/wed-may-20-20-kidney-donation/

-Kidney transplant - The Journey from the Donor's Side
https://connect.mayoclinic.org/discussion/kidney-transplant-from-the-donor-side/

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marthagershun | @marthagershun | Apr 17, 2021

Hi - I just wanted to let everyone know that my book, KIDNEY TO SHARE, co-written with physician and bioethicist Dr. John Lantos, has been published by Cornell University Press. It's available through all online bookstores. The book details my experience donating a kidney at the Mayo Clinic in Rochester on Sept 28, 2018 to a woman I read about in the newspaper. I'd love comments and feedback from the transplant community!

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2 replies
marthagershun | @marthagershun | Apr 17, 2021
In reply to @marthagershun "Hi - I just wanted to let everyone know that my book, KIDNEY TO SHARE, co-written..." + (show)
@marthagershun

Hi - I just wanted to let everyone know that my book, KIDNEY TO SHARE, co-written with physician and bioethicist Dr. John Lantos, has been published by Cornell University Press. It's available through all online bookstores. The book details my experience donating a kidney at the Mayo Clinic in Rochester on Sept 28, 2018 to a woman I read about in the newspaper. I'd love comments and feedback from the transplant community!

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Here's the book!
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