Changes after Transplant

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

@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?

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.

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.

@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.

Thank you for this reply and for explaining the process. I am envious of your very positive experience as I wonder all the time about my donor. This may sound silly but I talk to my liver and pat myself as I do so. I am very aware that there is now another part of me and a part which is the reason I live. It feels good to talk.

@wildcat I was not even told Sex and Age. And have sent a letter but have heard nothing. I think for me i was very moved by a television special i saw where a donor family met the recepiant of there loved ones Heart. I also received a Heart so it hit home. The wish of the donor family was to actually hear there loved onces heart again so they were set up with a stethoscope and there was not a dry eye in the house including mine. I keep hoping but know i may never hear. And actually the tv show meeting was 7 years after transplant so it may take a while. Im currently 1.5 years post.

@danab I think you are right that it may take more time. I am nearly 9 years post transplant and now I know quite a lot about my donor and her family. I met her father and we maintain contact. However, I did not hear from them until 3 years following my transplant. I realize and respect that some families may never be ready to meet the recipients. I still have only met her father, as the rest of the family prefers to keep a greater distance. That is okay with me.

@wildcat I didn't realize until I read your post that I also touch and talk to my pancreas. I also am very aware that I have part of someone else inside of me, as well as some titanium, mesh, screws, etc.

@wildcat I talk to my liver too. Promise to keep it safe and healthy. I make this promise to my donor too. I haven't written to my donor's family yet but am slowly constructing what I'll say in my head. I don't know if the donor was male/female, young/older or where they came from. I wanted to give the family grieving time first.