General
Transplant 'Ghosts', Donor Identities, & Beyond
Hello all! I am a Folklore PhD student as well as 32 Years Post- Heart Transplant (1992, Loma Linda). I am currently writing some papers centered around ways in which the transplant experience shifts vernacular religious belief/practice, the perpetual grief of transplant experience, and the "gendering" of donor identities (especially for those with anonymous cadaverous donors) along the framework of queer temporalities (transplant temporality) and hauntology.
It's much too late for now to include any input into the papers I must currently finish, but still wanted to extend the topic to further discussion.
What I am Most interested in further would be the experience of and/or belief in "transplant ghosts". As in, who here has felt the presence of or experienced direct contact with / visitation from their donor in any capacity (not limited to traditionally western "ghost" narratives).
That's all for now!
I've only ever been "Post-transplant" for my entire conscious existence, so I am interested in any further conversations on the topics of the lifelong internalized grievance of being a recipient and/or any of the more existential conversations of transplant existence rather than the purely medical/material conditions of our bodies.
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Transplant Patient
I've learned so much about this topic from you, and love that we're continuing the conversation.
For my own abstract paper that I just submitted, I was reading about the intersection between grief, medical trauma and the nervous system specifically as they meet transplant/chronic illness, and that the people who actually go through the grieving process as it relates to their donor and the loss of their native organ (even if their organ came from a living donor) tended to score better in emotional/mental health longterm. This reconciling process had to happen not only on a mental, cognitive level but also an embodied, nervous system level. And with the nervous system, the way we all tend to repeat these trauma loops unless we find some way of reestablishing safety and making meaning. Not all of us will do this in the same way, of course, but as I hear transplant stories, and live out my own, I always come back to the idea that everything is so interconnected and there's still so much we don't understand.
I also just tend to love any existential/philosophical conversations so I'm excited to see what people have to share
I'm curious about this. I was able to donate a kidney directly to my wife two years ago. It was an easy decision and I moved on quickly as my surgery was minor. However, it was obviously an extremely significant event for her and us as a couple. She sees her 'ghost' everyday and there are subtle effects of that I think that are complex and hard to define. She seems to feel some guilt, and she doesn't like it when I minimize my part in it.
Transplant Patient
my first liver came from my brother and I still feel guilt when it comes to that part of my transplant story, despite it being 4 years ago. My brain gets stuck in the loop of this wasn't supposed to happen. I do know other couples where one spouse has donated to the other, and I know they don't talk about it (the fact that the spouse donated, not the fact the other spouse had a transplant) intentionally because of all the emotions involved. I think even with my own husband, who wasn't my donor, our relationship was challenged immensely by my transplant, and because he was so involved with my recovery there was a long time where I saw that painful reminder every time I looked at him, and our relationship was really strained. I think someone should make a guidebook on how to handle relationships post transplant because you're right, everything is different. I always say everything about who I am as a person changed, I'm not the person my husband married anymore, and that's really hard. But they don't tell you any of that prior to the surgery 😅
Hello there Peeps!
Wow! this conversation got me real emotional! It was as if a switch was flipped. I'm going to have to sit with it and ponder why. Such an interesting and thought provoking topic. I think it helpful to explore more.
Thirty-two years @Laszlomark That's amazing and aspiring. I am only 21 months post heart transplant. This gives me hope that my shelf life beyond 10 years is possible. I might even make it to my grandkids graduations!
Yes, absolutely!! I look forward to your thoughts after you've had some time with it!
As in seeing her own ghost of the kidney?
Hello all!! I need to check here more often. Grateful for all the responses so far!
I am thinking of setting this topic as near the top of my possible topics for my PhD thesis, I'll try being more active and reaching out!!
I’m definitely following this. I find this so interesting. I find myself calling my new liver a boy and I picture/see and young man’s face when I talk about my donor. I don’t think I was ever told anything much about my donor.
Deb, what do you believe draws you to sense that your new liver comes from a male? Would you way that the organ itself has a sort of gendered essence as well?
I did a presentation on this topic!
Laszlomark I’m not really sure. I picture in my mind a young man when I think of my donor and I refer to my liver as a “he” but honestly I don’t know why?? It’s just a feeling I get. I’ve never heard from my donors family and I’ve reached out twice so I just am thankful for my gift.
I had a liver transplant from a deceased donor. I have definitely experienced changes but not in the ways you hear about. Here are a few examples:
I cannot tolerate the smell of fish although I like the taste
i do not want to eat meat anymore
i had this relentless need to see The Rolling Stones. We had the opportunity from a nurse at Yale to attend a show in Boston. My partner and I got tickets. The joy and elation I felt was surreal. I was dancing to Honkytok Woman like a fool.
when I sent my donor thank you letter I asked if he liked The Rolling Stones. I have not heard back, if ever, but maybe one day I will.
Interesting! Have you taken more time to connect with this intuition? How are you feeling about the connection now?
Those are very interesting shifts! Have you intuited other aspects of the donor identity and/or how they have become integrated within you?
It's nice that you were able to send a letter to the donor family (presumably). Were you told where they are from?
I finally got to catch up on your episode of the podcast but sadly I missed the support group. This was a very cool episode with a fascinating and unique perspective! One part that really stood out to me personally was how you sort of felt like you have to live up to this miracle child expectation and how it followed you thorugh until now and wanting to write about it and see if its a chapter you can close out.
Shortly after I was diagnosed, I really became interested in medicine. I think it was partially because I was always into science but I think it was also a good disraction. I prefered to focus on learning about pathophysiology of diseases rather than focus on how I felt. Back then, until very recently actually, I was very determined to go to medical school and become a doctor. The choice not to do so has sort of haunted me because I don't know if I made the right choice even though I can still apply in the future. I wonder if this obsession with it is tied to my self image which was largely influenced by my illness and transplant. I found comfort in knowledge, my doctor's and the thought that one day I can help others find that same comfort. Probably because that feeling of being able make a difference overpowers the negative feelings and thoughts associated with having a life-long illness and a donated kidney. So choosing not to pursure a career in medicine sort of feels like I may never be able to achieve that goal and find that peace.
Obviously, I know I can do a lot to help others even outside of medicine but its intersting to look at the subconcious side of things.
Yes, absolutely! Which path have you chosen outside of medicine? I think it's still great that you accumulated such knowledge even if you aren't professionally working in that field!
I am very grateful for everything I've learned due to my expereince and diagnosis. Especially grateful for the people I continue to meet and learn from.
I dipped into a little bit of construction management, mostly because my husband runs a roofing company. It's very cool but its difficult coming into with no background. I have decided to stick with advocacy and I have a buisness plan in the works that will hopefully help with dialysis care in my state at some point down the road.
That sounds great!