Thanks for sharing your feelings and your perspectives – and I’m sorry for your losses.
Your description of feeling abandoned by your center and being in a state of vague limbo is one other donors have reported. I would not look to the transplant center for support because most are not equipped to manage psychosocial problems and centers need to promote living related transplantation as positive and easy. Although many centers acknowledge that donors experience depression if a organ or recipient is lost shortly after transplant, they are reluctant to acknowledge that psychosocial problems (family strain, depression, anxiety, post traumatic stress disorder, body image problems, bereavement, substance abuse, and suicidal ideation) related to the donation may occur anytime after the donation, and this reluctance is compounded by the lack of good and comprehensive donor data. But, we know from other patient populations that those who have experienced trauma or loss may have issues that emerge years after the original incident. Although it sounds as though you feel your donation was a positive event (but I can only presume) it was never-the-less, a huge event. All major life events, positive and negative, are very stressful. Organ donation is uniquely stressful because it impacts body, mind, soul, and relationships – and it is a forever, life-changing event.
I have come to understand that it is hard for those, like your mom, who have not donated to relate to the experience of being a living donor. Instead, they read all the news stories and promotional literature about the positives of living donation and really do not know any better. Also, family members may have complicated feelings about the transplant, the donation, and the losses. For example, ambivalence about the role they played, their relationship with the recipient, or are just too exhausted from care giving to become attuned to the experience of the living donor. Sometimes people deny or minimize what is painful or confusing, and this could leave you in a position of feeling alone and invalidated.
The fact that you are healthy now does not negate the fact that you have experienced loss, a changed sense of bodily integrity, and require ongoing medical follow-up. Also, no one can or should tell you how to feel or think about any aspect of your donation experience (or about your life.) I think your feelings and perspectives are totally normal, valid, and well stated.
It is poignant to me that you are reluctant to talk about your feelings with your family because the grief for your Dad is so fresh. While I understand this, it reflects to the broader theme of the “donor story” as one that is often unarticulated and buried. The drama of the recipient’s illness often overshadows everything else, whether it is the donor’s story of the stories of other caregivers. I don’t think this is healthy for anyone, even the recipient.
I also lost my recipient and the donated kidney. I recall saying separate prayers for my kidney and for my recipient. They were two different living entities that deserved to be honored uniquely, but most importantly, I experienced the loss of the kidney and the loss of the recipient in different ways. I also recall having a vague awareness that my remaining kidney was somehow grieving for it’s partner. That may sound bizarre, but it was right and true for me and I encourage you to accept what is right and true for you. After you are able to acknowledge your losses in a way that is personally meaningful for you, I hope you use your energy to take care of yourself!
The records of the transplant would be nice for you to have, and I think you should get copies. The records are an important part of your medical history as well as the history of your relationship with your Dad. Only you can decide what is personally meaningful to you and what is of value TO YOU. Others cannot decide this and your desires should not be dismissed because you are healthy.
Your story as a donor will go on for the rest of your life and the donation may take on different meanings as you go forward. A gift you can give yourself is to keep a journal. Write about how you feel now and record your memories. You will be very happy to have this years from now, and who knows, maybe you’ll write a book someday that will help other living donors? The experience of living organ donors is not well understood and too often has been defined by transplant professionals or by other who are not living organ donors. I think that what you have to say about your experience is very interesting and powerful and hope that you will continue to share your thoughts and experiences.
There is some research that shows that kidney donors have rates of depression that are higher than that of the general population. There are several case reports of donor suicides. Many believe that the first or second episode of major depression in a person’s life is caused by psychosocial stress, after that depression can become a patterned response in one’s brain causing multiple episodes.
The core symptoms of major depression are loss of pleasure or loss of interest in activities and/or depressed mood. The core symptoms of posttraumatic stress disorder are anxiety and feelings of being numb, detached, or avoidant. Many people experience both disorders simultaneously or in an overlapping way.
If you decide to continue to reach out to others for support, I recommend that you pick those who are truly curious about your experience and seem willing to learn from you. Avoid those who want to interpret or explain how you should feel or think – this goes for professionals and non-professionals alike.
I wish you the best of luck and think you have an important perspective and story to share. Be well!
My best,
Jane
Topic: New here. My Dad/Recipient died. Need support (Read 14169 times)