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.

Today 11/30/2020 is my 15th transplant anniversary! I decided it is a good day to tell my transplant story. I am 63 years old and was diagnosed with Type 1 diabetes in 1975 at age 18. It turned out to be uncontrollable despite all the treatments available. It affected all aspects of my health & life and vice versa. Everything in life impacted my diabetes. Over the years I developed the usual complications: retinopathy, peripheral & autonomic neuropathy, high blood pressure, high cholesterol and chronic kidney disease (CKD). Day to day living became a constant balancing act while juggling a bazillion balls. The pregnancies & births of my two daughters were more difficult than usual. My husband & family dealt with many ordeals of insulin reactions & hypoglycemic unawareness. I felt like a ping pong ball as blood sugar routinely bounced from 20s – hundreds (or simply “HI” because old meters wouldn’t register that high a number) and back again.

In 2005 my primary recommended that I look into transplant. I applied for simultaneous kidney / pancreas transplant. The pretransplant evaluation was rigorous but I was told that my CKD was only mild / moderate and that I did not need a kidney transplant. I was approved & accepted for pancreas transplant alone. I was told that due to blood type and matching factors the wait would be about 1 1/2 years or more. I was listed on 11/15/2005 at age 48 and settled in for the wait. I and my family / friends also prayed. I am a Christian and have put my life in God’s hands. Living this way, I believe that whatever happens it is in God’s timing and for His good purposes.

On 11/30/2005 (just 2 weeks later) I got “the call”! It was like my own personal miracle. I was not instantly cured of diabetes as skeptics like to point out but my diabetes is finally controlled. Pretransplant I had multiple daily insulin injections that totaled over 50 units a day. Now I have 11 units of a long lasting insulin at bedtime. The HbA1c test was always in the double digits pretransplant. Three weeks after transplant it was 5.3 Even now 15 years later when it is tested it is 6 – 8. My blood pressure and cholesterol are finally in range. My retinopathy was reversed and I just use reading glasses. The neuropathy resolved. The CKD remained stable for 11 years.

In 2016 my kidney function began to decline. I’m not afraid of transplant so I got back in line for a kidney transplant evaluation and started looking for a living donor. I was approved & accepted for kidney transplant. I haven’t had much “luck” with finding a donor. But I don’t believe in “luck”. I have faith in God’s Providence. If a kidney transplant is God’s will for me, it will be in His timing with the donor of His choosing. Meanwhile in the past 4 years my GFR has been 14 – 42. It is currently at 24 and my listing was changed to inactive. I’m not on dialysis and I was told that I’m “too healthy” for transplant at this time!

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@cehunt57

Today 11/30/2020 is my 15th transplant anniversary! I decided it is a good day to tell my transplant story. I am 63 years old and was diagnosed with Type 1 diabetes in 1975 at age 18. It turned out to be uncontrollable despite all the treatments available. It affected all aspects of my health & life and vice versa. Everything in life impacted my diabetes. Over the years I developed the usual complications: retinopathy, peripheral & autonomic neuropathy, high blood pressure, high cholesterol and chronic kidney disease (CKD). Day to day living became a constant balancing act while juggling a bazillion balls. The pregnancies & births of my two daughters were more difficult than usual. My husband & family dealt with many ordeals of insulin reactions & hypoglycemic unawareness. I felt like a ping pong ball as blood sugar routinely bounced from 20s – hundreds (or simply “HI” because old meters wouldn’t register that high a number) and back again.

In 2005 my primary recommended that I look into transplant. I applied for simultaneous kidney / pancreas transplant. The pretransplant evaluation was rigorous but I was told that my CKD was only mild / moderate and that I did not need a kidney transplant. I was approved & accepted for pancreas transplant alone. I was told that due to blood type and matching factors the wait would be about 1 1/2 years or more. I was listed on 11/15/2005 at age 48 and settled in for the wait. I and my family / friends also prayed. I am a Christian and have put my life in God’s hands. Living this way, I believe that whatever happens it is in God’s timing and for His good purposes.

On 11/30/2005 (just 2 weeks later) I got “the call”! It was like my own personal miracle. I was not instantly cured of diabetes as skeptics like to point out but my diabetes is finally controlled. Pretransplant I had multiple daily insulin injections that totaled over 50 units a day. Now I have 11 units of a long lasting insulin at bedtime. The HbA1c test was always in the double digits pretransplant. Three weeks after transplant it was 5.3 Even now 15 years later when it is tested it is 6 – 8. My blood pressure and cholesterol are finally in range. My retinopathy was reversed and I just use reading glasses. The neuropathy resolved. The CKD remained stable for 11 years.

In 2016 my kidney function began to decline. I’m not afraid of transplant so I got back in line for a kidney transplant evaluation and started looking for a living donor. I was approved & accepted for kidney transplant. I haven’t had much “luck” with finding a donor. But I don’t believe in “luck”. I have faith in God’s Providence. If a kidney transplant is God’s will for me, it will be in His timing with the donor of His choosing. Meanwhile in the past 4 years my GFR has been 14 – 42. It is currently at 24 and my listing was changed to inactive. I’m not on dialysis and I was told that I’m “too healthy” for transplant at this time!

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@cehunt57 Congratulations on your transplantiversary! So happy to hear you are doing well and that your kidney function is not hampering your life too much.
Ginger

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@cehunt57

Today 11/30/2020 is my 15th transplant anniversary! I decided it is a good day to tell my transplant story. I am 63 years old and was diagnosed with Type 1 diabetes in 1975 at age 18. It turned out to be uncontrollable despite all the treatments available. It affected all aspects of my health & life and vice versa. Everything in life impacted my diabetes. Over the years I developed the usual complications: retinopathy, peripheral & autonomic neuropathy, high blood pressure, high cholesterol and chronic kidney disease (CKD). Day to day living became a constant balancing act while juggling a bazillion balls. The pregnancies & births of my two daughters were more difficult than usual. My husband & family dealt with many ordeals of insulin reactions & hypoglycemic unawareness. I felt like a ping pong ball as blood sugar routinely bounced from 20s – hundreds (or simply “HI” because old meters wouldn’t register that high a number) and back again.

In 2005 my primary recommended that I look into transplant. I applied for simultaneous kidney / pancreas transplant. The pretransplant evaluation was rigorous but I was told that my CKD was only mild / moderate and that I did not need a kidney transplant. I was approved & accepted for pancreas transplant alone. I was told that due to blood type and matching factors the wait would be about 1 1/2 years or more. I was listed on 11/15/2005 at age 48 and settled in for the wait. I and my family / friends also prayed. I am a Christian and have put my life in God’s hands. Living this way, I believe that whatever happens it is in God’s timing and for His good purposes.

On 11/30/2005 (just 2 weeks later) I got “the call”! It was like my own personal miracle. I was not instantly cured of diabetes as skeptics like to point out but my diabetes is finally controlled. Pretransplant I had multiple daily insulin injections that totaled over 50 units a day. Now I have 11 units of a long lasting insulin at bedtime. The HbA1c test was always in the double digits pretransplant. Three weeks after transplant it was 5.3 Even now 15 years later when it is tested it is 6 – 8. My blood pressure and cholesterol are finally in range. My retinopathy was reversed and I just use reading glasses. The neuropathy resolved. The CKD remained stable for 11 years.

In 2016 my kidney function began to decline. I’m not afraid of transplant so I got back in line for a kidney transplant evaluation and started looking for a living donor. I was approved & accepted for kidney transplant. I haven’t had much “luck” with finding a donor. But I don’t believe in “luck”. I have faith in God’s Providence. If a kidney transplant is God’s will for me, it will be in His timing with the donor of His choosing. Meanwhile in the past 4 years my GFR has been 14 – 42. It is currently at 24 and my listing was changed to inactive. I’m not on dialysis and I was told that I’m “too healthy” for transplant at this time!

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@cehunt57 Congratulations on 15 years, I'm always pleased to hear those kind of numbers I'm looking forward to many years myself so it's always a joy and a blessing to hear successful stories like yours. I see as I also feel God has blessed you not only with the transplant but an awesome outlook on life.
Have a blessed Day
Dana

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@rockorobin

My double lung transplant/ October 6, 2019:
My journey started in 2013 when I began to have shortness of breath. I had a cardiac catheterization in 2015 but the doctors didn't recognize at that time that my Pulmonary pressure was too high. In 2018 I became very Ill at my daughter's when we went to see the Atlanta gardens. It was hot and there were inclines and I collapsed. Another cardiac catheterization later and I was diagnosed with Pulmonary hypertension. I was put on medicine after medicine but nothing brought my pressures down, in fact they became sky high at 130-150. The PAH meds were wicked awful with side effects that had me vomiting throughout the day. I was short of breath, fainting and had severe heart failure. Fast forward to 2019 and I began my eval for double Lung transplant. I never really believed I was dying. I kept working at my private psychotherapy practice. I thought no one knew I was sick, turns out everyone knew! I just didn’t identify as a sick person. One day I came home from work and collapsed completely. I was in ICU for acute heart and respiratory failure. I couldn't see people but could hear. A sheer white curtain seemed to be in front of me. They said I could die any minute. They put Me on the list on Friday and Sunday morning said I had a pair of lungs! I would say the surgery and recovery took a heavy toll on my adult kids. It's been rocky with the episodes of pneumonias and rejections as well as CMV. I had a fundoplication which was hard to recover from. I lost forty pounds. And I have a Mycobacterial infection requiring two daily IV infusions as well as other antibiotics. My kidneys are failing. I don’t want to be negative because there is this: every day, I’m alive. Without the transplant I couldn’t call my kids or hug my husband. I couldn’t hear the rain or see the sky or smell the ocean. One more year with my grand baby. It’s all priceless. Every day is a gift! Don’t waste it. Take a nice big bite of every moment you are given because you don’t get another one just like this. I consider myself very lucky and grateful, especially to my wonderful donor. Rock on!

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ROCK ON! \God bless you and you look wonderful. I can tell that your Faith is strong. I will keep praying for you that you become stronger each day,

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@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

@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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@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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@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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@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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@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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@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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@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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