Changes after Transplant

Posted by 2011panc @2011panc, Nov 22, 2016

I have learned that following a transplant there are many changes beyond your physical situation. What is your experience? Has your mood changed? Are you happier, calmer, more agitated, more anxious, more relaxed or something else? Do you feel you have changed emotionally, spiritually or mentally? Do you feel that your personality has changed? I am curious about more than physical. I appreciate your input on this issue.

2011panc Post liver transplant I am calm, less contemplative and more decisive in my thoughts. I had one goal in mind when getting a transplant. To fullfill my obligation to my Wife and Son. I have no guilt what so ever for receiving a organ from a deceased doner. I would meet with the family of the doner if they so wished. The past dose not dictate my future. 😁

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@danab

@ contentandwell I'm sorry that it was not such a great revelation. I remember when i got the Heart i did go thru a guilt complex for a few days. Until my pastor talked to me and reassured me that no matter what your doner was not going to live anyway. I kept feeling like someone has to die for me to live. But i was thinking backwards. They were going to die anyway and at least for there family something good came out of it. I can see where the fact that she was your daughter age would be a tough. Thanks for sharing

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Thanks, @danab I actually do not feel guilty, just tremendous grief that this young woman passed away long before what should have been her time. What her parents told me of course caused me to compare her with my own daughter and how totally grief stricken I would have been.
JK

Liked by danab

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– Here is my response to the currently active discussion about grief and acceptance. I was asked to write about my own fear, guilt, relief, peace and joy as a transplant recipient. How does one send condolences, and say thank you at the same time?

Here is a link to the free e-book Experts by Experience 2019: Stories that Teach (PDF) My article: PS: Enjoy your life is on page 30.
https://connect.mayoclinic.org/page/about-connect/newsfeed-post/ebook-experts-by-experience-patient-caregiver-stories-that-teach/

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@rosemarya I waited nine months before writing a Donor Family Letter. I thought it would be callous to write during the grieving process since I was not grieving but rejoicing after my Transplant. In my letter, I wanted to put a positive spin on a difficult subject.
My Transplant Thank you Letter.
My Dear Transplant Donor Family,
My Name is Tim,
First off, I would like to share my deepest gratitude to your Son and family for sacrificing a gift of A life-changing Organ transplant. I am still moved by your son’s gift to me and am happy to share that your loved one’s gift has given me a new life. In fact, I have become an Ambassador at large in many ways to advocate for awareness of access to Organ transplants and the need to educate people of the importance of lifestyle changes leading up to an Organ Transplant. With Hope and faith miracles happen. In short, we are connected by a miracle of life that is your Son.

I had been ill for quite some time. So, I had learned to live with the symptoms of liver
Disease and the different stages of the disease. I learned to cope with the changes and to surmount the difficulties one a time. My doctor suggested a liver transplant, but being an optimist, I hoped to heal rather than going on the transplant registry. I was not on the waiting list. However, My life changed when I contracted Ecol I poisoning and then started the journey that changed my life. I was rushed to the Hospital and was added to the Organ Transplant registry at the top of the list for extremely ill patients. I had the operation soon after.

A chance at a new life is of great importance to me. Not only because of the process in being selected for a transplant, but also my responsibility and perseverance in living a good and productive life post Transplant. My life has improved remarkably in Every way since my liver Transplant.
Currently, I am post Transplant for 9 months. The whole life-changing liver Transplant experience has been a wonderful time filled with extraordinary Doctors, Nurses, Friends, and Family. A time that I would never change and hold dear to my heart. A precious time that would not have been possible, but for the gift of life your son gave me last June and for this I will be forever grateful.

Sincerely,

Tim

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I wrote my letter about 4 months post transplant and this is what i sent.

Hi, I am so sorry for your loss, I am writing to thank your family so much for the gift you have giving me. I received your loved ones Heart and it has giving me a chance to Live a normal life. I praise the Lord so much every day for those that help others by Organ Donations. I am now 3 months since the transplant and doing excellent. The Heart is doing well and has had no issues. I can see it was well taken care of.
A little about myself. I live in Arizona with my wife and my 16-year-old son. I have 4 grown children also from 42 thru 18. I have 8 Grandchildren with 1 on the way and 4 grandchildren from my wife side. I love them all very much and love the time I get to spend with them. I used to work as an Electronic Technician until my needing to retire due to my Heart. I love to spend my time at my Church, Playing Golf, Hiking and Camping which the new Heart will allow me to do again. I am a Born Again Christian and truly believe that the Lord has given me a blessing that your loved one provided. I praise him every day for the gift your family provided.
Again, I can't put into words how thankful I am for your loved one’s gift and I hope in some way help you with closure. May God bless your family.
You are free to contact me if you wish. I will understand if it may be too painful to write me.
Dana

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Here are a few related discussions about writing to your donor's family.
– Writing to Your Donor's Family https://connect.mayoclinic.org/discussion/writing-to-your-donors-family/ Did you hear back?
– Letter to donor family: I'm not sure how to start https://connect.mayoclinic.org/discussion/letter-to-donor-family/ @edwinswife ask for assistance.

I hope you'll add your thoughts to both discussions.

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@colleenyoung

Here are a few related discussions about writing to your donor's family.
– Writing to Your Donor's Family https://connect.mayoclinic.org/discussion/writing-to-your-donors-family/ Did you hear back?
– Letter to donor family: I'm not sure how to start https://connect.mayoclinic.org/discussion/letter-to-donor-family/ @edwinswife ask for assistance.

I hope you'll add your thoughts to both discussions.

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Here in Scotland we are not given any information at all about our donor other than his/her sex and age. We know nothing about the circumstances of death or family details.

We are encouraged to write a letter of thanks to the family after six months; I can honestly say it was the hardest letter I have ever written but I was determined to write it and felt honoured to have the opportunity to express my heartfelt thanks.. I also sent a card, via my Transplant Unit, on the fifith anniversary to tell them I was very well and to thank them once again.

It seems from some of the comments here that this is different in the US, perhaps even different in each state. Obviously, I often wonder about my donor and his family. I am interested in others thoughts; did anyone find this knowledge difficult or unsettling? Is it common to meet the donors' family?

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@wildcat

Here in Scotland we are not given any information at all about our donor other than his/her sex and age. We know nothing about the circumstances of death or family details.

We are encouraged to write a letter of thanks to the family after six months; I can honestly say it was the hardest letter I have ever written but I was determined to write it and felt honoured to have the opportunity to express my heartfelt thanks.. I also sent a card, via my Transplant Unit, on the fifith anniversary to tell them I was very well and to thank them once again.

It seems from some of the comments here that this is different in the US, perhaps even different in each state. Obviously, I often wonder about my donor and his family. I am interested in others thoughts; did anyone find this knowledge difficult or unsettling? Is it common to meet the donors' family?

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Hi, @wildcat. Thanks for sharing your experience, and for bringing up this challenging question about writing and meeting donor family. I want to ask you to post this same question in the groups that Colleen has referenced above because it is directly related to those discussion title/topics, and will generate a wider audience for members. It is less visible here because it is embedded the "Changes…" conversation here. I hope that makes sense.

– Also if you will open the link, and make a post (copy and paste) it will bring the top of the Transplant Group Discussion activity.

I have added the discussions here. I look forward to continuing this conversation in one of the following.
– Writing to Your Donor's Family https://connect.mayoclinic.org/discussion/writing-to-your-donors-family/ Did you hear back?
– Letter to donor family: I'm not sure how to start https://connect.mayoclinic.org/discussion/letter-to-donor-family/ @edwinswife ask for assistance.

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Sorry Rosemary I don't seem to be able to do this- I'm self taught and have problems with copy and paste.! Maybe you could add them in to the groups for me? Many thanks.

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@wildcat

Sorry Rosemary I don't seem to be able to do this- I'm self taught and have problems with copy and paste.! Maybe you could add them in to the groups for me? Many thanks.

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@wildcat, We can make this happen. I am going to refer this to our moderator team. You will be notified of the change.

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Thank you Rosemary. I'll try to direct my posts to the most relevant threads in future!

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@wildcat

Thank you Rosemary. I'll try to direct my posts to the most relevant threads in future!

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@wildcat, Keep on doing what you have been doing. It is perfect.
I am sorry to mislead you, but your response about donor letter and policy was just so relevant for recipients that I wanted be sure it stood out!
I am 10 years post transplant, and I do mine every 3 months. I had them drawn this morning! I do mine locally and they faxed to Mayo, where I transplanted. I also have a prograf lab kit that is mailed to Mayo to monitir my prograf(tacrolimus) levels. I will get a notification from my nurse coordinator ic I need to make any dosage adjustments. But they have been stable for the past 4-5 years. That was not the way it was in the beginning, though.
Now that you are 5 years post transplant, how often do you get your labs drawn? can you do it locally?

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@wildcat

Here in Scotland we are not given any information at all about our donor other than his/her sex and age. We know nothing about the circumstances of death or family details.

We are encouraged to write a letter of thanks to the family after six months; I can honestly say it was the hardest letter I have ever written but I was determined to write it and felt honoured to have the opportunity to express my heartfelt thanks.. I also sent a card, via my Transplant Unit, on the fifith anniversary to tell them I was very well and to thank them once again.

It seems from some of the comments here that this is different in the US, perhaps even different in each state. Obviously, I often wonder about my donor and his family. I am interested in others thoughts; did anyone find this knowledge difficult or unsettling? Is it common to meet the donors' family?

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Hi @wildcat, Rosemary is right. You're response is just perfect. I hope that you will join the other discussion about writing to your donor. Here's how:

1. Click this link https://connect.mayoclinic.org/discussion/letter-to-donor-family/
2. Read through the messages.
3. Add a message with your thoughts and questions.

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Yes, I have mine all done locally now. My Transplant Centre is Edinburgh. Once a year, my local doctors take my bloods etc and send the data to Edinburgh. Three weeks later, Edinburgh calsl me usually just for a chat!. Also once a year, but six months apart. I attend a local hospital where they take bloods etc and I see a transplant specialist who holds a clinic there. This means I have my tests every six months but don't have to travel all the way to Edinburgh.

This has been happening for nearly two years now. It is a great sign that they are confident about my progress but I must admit sometimes I miss the many friends I made among the transplant team. A few words fpr Taylorette, having a transplant is by no means all bad – some very good friends are found.

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@wildcat

Here in Scotland we are not given any information at all about our donor other than his/her sex and age. We know nothing about the circumstances of death or family details.

We are encouraged to write a letter of thanks to the family after six months; I can honestly say it was the hardest letter I have ever written but I was determined to write it and felt honoured to have the opportunity to express my heartfelt thanks.. I also sent a card, via my Transplant Unit, on the fifith anniversary to tell them I was very well and to thank them once again.

It seems from some of the comments here that this is different in the US, perhaps even different in each state. Obviously, I often wonder about my donor and his family. I am interested in others thoughts; did anyone find this knowledge difficult or unsettling? Is it common to meet the donors' family?

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@wildcat In the USA the donor's family retain the right to remain anonymous. That is why, even though we are encouraged to write a letter to the donor's family, we may never hear back or find out anything more than, like you, sex and age. In my case the donor's family used contact with recipients as part of their healing process. Not everyone handles grief the same way. It has helped me to know the circumstances of my donor's death and learn about their family. I learned about the accomplishments, activities, and plans of my donor. Most helpful was finding out how/why she died. Knowing that it was a traffic accident with no fault on anyone's part helped me know that I received an organ from an intelligent, caring and determined young woman who intended to help everyone she could in every way that she could — even after death. I am not pleased that she died, but I am forever grateful that her family honored her wishes and gave me a young, healthy and almost perfectly matched pancreas. They also provided her heart, lungs, kidneys, liver, eyes and tissues both for immediate transplant and for research. Who knows just how far-reaching this young woman's reach has grown by her selfless gift following her demise. I am honored to have been helped by such a young woman with such deep thoughts and plans.

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