← Return to Post-Transplant Mental Health & Well-being: Q&A with Shelia Jowsey-Gregoire, M.D.

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@cehunt57

Dr. Jowsey's article is really good. She was one of the providers I saw when I was at Mayo (Rochester, MN) for my annual pre transplant review.
I have a transplant history in my family and for myself. In 2003 my father-in-law had a kidney transplant. My daughter was his living donor. He was so grateful that he showed her extra favor giving her things (a new car etc) and spending time with her. It was awkward for the other 6 grandchildren especially for my other daughter. Both girls agreed to be tested, both matched. They worked it out between the two of them that the younger would donate to Grandpa and the older one decided to save her kidney for me because I have CKD. Grandpa lived 3 years and was grateful for everyday. Sadly he passed from Lymphoma after 3 years (it may have been associated with his immune suppression). My daughter had a period of time regretting that she had donated and wishing she had her kidney back.
In 2005 I had a pancreas transplant ( from a cadaver donor). My father-in-law was the first person I told when I got "the call". He told me he had been praying for me to get the right pancreas as soon as possible. Those prayers were answered and it has been like my own personal miracle. I don't think I ever experienced guilt about it. I wrote a letter to the donor family and never heard anymore about it. I feel bad that I couldn't personally tell them how thankful I am and what a great difference it made in my life. I did have a strange dream in the first days after transplant that little toy GI Joe soldiers were climbing up my bed and all over me trying to reclaim my transplanted pancreas to take it back to its original owner. That may have been pain or immune suppressant meds.
Forward to now. That pancreas transplant has helped keep my type 1 diabetes relatively stable, has reversed and staved off some of the complications but now the CKD is ESRD and I need a kidney transplant. I am listed with UNOS through Mayo but am also looking for a living donor. That journey is full of emotional chaos both for the future recipient and potential donors. I put postcards with Mayo Living Donor team info in all my Christmas cards and asked everyone I knew to consider or at least help me spread the word. I couldn't bring myself to actually outright ask someone to donate and haven't. Then I heard that a relative thought it was weird, inappropriate and offensive that I would ask them to donate. I was absolutely devastated. (There is a divorce underway in that family so maybe I shouldn't take it personally.) I have a cousin that told me he was apprehensive about testing for me because if he found out we matched he might feel compelled to donate and he wasn't sure how he feels about that. I love his honesty. Then there's my daughter who was saving her kidney for me back in 2003. She is grown, married, has 3 little kids and a busy life. She has always had trouble with self esteem and compared herself negatively with others especially her little sister who did donate a kidney back in 2003. She has come forward and we do match. She is scheduled for full donor work up at Mayo next month. My greatest request is for prayers for everyone involved and patience while I wait to see how this journey will unfold.

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Replies to "Dr. Jowsey's article is really good. She was one of the providers I saw when I..."

@cehunt57 what a tough situation for your daughters since both had volunteered to be donors. Did the recipient of these gifts share with her older sister?  That would have made the situation a bit easier. Despite the recipient's passing after three years, she did give him three years, she should be happy about that. I had a cadaver liver donor one year ago and am grateful for every day of health that I now have. Each is a day I would not have without my donor.
I too wrote to the donor family and have not heard back but I really did not expect a response. I am sure they live every day with the grief of losing a loved one and a response would be a difficult reminder of their loss. I know some donor families find some joy in meeting the donor recipient, knowing their loved one gave a renewed life to that person, but we are all different in how we deal with things.  
Your daughters both sound very caring, you are blessed to have daughters who do care so much.
JK

@cehunt57 - What a story your family has but what a loving family too. My father lived 3 years following his kidney transplant (my brother was his donor) but those three years were the best he had felt in years because he had been on dialysis. Plus they allowed him to enjoy 3 years with my oldest daughter and one year with my youngest daughter. Those times were so special for him, and his quality of life so much better, that I know he was extremely grateful to my brother for his kidney.

I wish you all the best as you embark on a second organ transplant. I admire the courage of those who have had multiple organ transplants. The whole process is overwhelming and frightening to me but to read stories of some of you who are living life to the fullest with one, and sometimes two, organ transplants is reassuring. Thank you for sharing your journey.

Lynn

@cehunt57, I am stepping up to let you know that I will be praying for you and your potential donor. I believe in the power of prayer, and I do believe in miracles.
I wish for you to be blessed with patience and hope while waiting. Those were the things that I needed before my transplant,
Rosemary