Organ Transplants: A community to support
Rev Nicola Wolters is in the process of creating a resource for companions and families of transplant patients. Her partner had a liver transplant in 2021. The experience showed her that there is a need for this type of information and for friends and families who are acting as support people to be able to both learn from and experience community with those who have been through similar experiences. Rev Nicola is now active as a member of the UHN Patient Partner Program enabling her participation in various committees surrounding patient care and transplant education.
When I applied for the CSMC micro-grant last year, my vision was to write an anthology of the experiences of other transplant patients, donors, and caregivers. With many visits back to the hospital in the six months since applying for the grant, my focus shifted. What became increasingly clear to me was that the book needed to be less focused on the stories of other transplant patients and more as a guide for transplant patients. While the stories and experiences of others serve as a way to explore and illustrate the gaps in information, I felt there would be a greater benefit to focus on the before, during and after experience of transplant.
I conducted a thorough research of the books available and discovered the majority are focused on the first-person account of transplant.
I also had the opportunity to speak with a published author who wrote a book for youth after his own experience with a brother who had a heart transplant. He offered to sit down with me and provide me with some support and advice about the publishing industry. As a winner of the Governor General’s Award and being a very experienced author, he is a great resource.
Initially, I felt that a website would be the best way to reach people wanting to contribute to the book. However, since joining a Facebook group of transplant patients and donors, it’s a far easier way to create connections. I have also discovered a vast community of people with experience and insight that will be a great resource in the research for this book.
I invited members of Glenn’s care team, family, friends, and acquaintances to write something brief with the following question(s).
“What would be your one most important piece of advice with regard to the transplant experience?” and/or “What was your most unexpected experience regarding the transplant experience?”
I spent the money I had budgeted on an award-winning publishing coach who used to work as a nurse in transplant. It was her expertise that led me to see this book as a guide rather than an anthology. After some deep discussion, she provided me with an outline for the book. I have written several rough chapters and have started gathering material for others,
In the 18 months since the transplant experience, what has surprised me most are the unexpected health challenges. There is such a focus on getting to the transplant that the post-transplant care feels half-hearted. There is a post-transplant “manual” available to patients, but it focuses on the weeks after a routine, easy transplant. Helpful hints and advice about wound-care don’t begin to touch on how a patient is left to arrange their own care in the community, the transplant team don’t seem to be aware that there aren’t nurses available to come to the home, living outside of Toronto is an even greater challenge. The need to return to Toronto for complications isn’t addressed, nor are the multitude of potentially life-threatening health problems from infections, to how Covid needs to be treated, new allergies, and problems with the graft,
I also find that while it is touched upon in a very general way for transplant patients, the emotional and psychological effect on both the patient and the caregiver isn’t addressed. While at the transplant hospital, the nursing staff is supportive and caring there is never a mention of how it is to go home and resume a normal life which really isn’t in any sense normal.
As a volunteer with the UHN Patient Partner Program, I am able to participate in several committees and groups on such topics as integrated community care, transplant quality and safety and caregiver/mentor for medical students. This gives me a greater insight into the transplant and patient experience – an awareness of the medical system’s effort to address and improve this experience.
If you have experiences to share regarding organ transplant, please reach out to the church to be connected to Rev. Nicola.