Looking to interview transplant patients: Increased Risk Donor Hearts

Thanks, Colleen!
Like many others, my journey to transplantation took place over years and then quickly led to a turning point when I needed to get on the list. The cause of my heart failure was sarcoidosis-induced cardiomyopathy with the sarcoid active in my eye, lung and heart. Traveling to Mayo in Phoenix led to a complete evaluation and ultimately being accepted for transplant. I received the call three weeks after getting on the list and after being prepped, rolled into the OR and waking up in the ICU, I realized that I was not given that heart. The surgeons decided it was too sluggish for me. That heart was a standard risk organ – no increased risk. Yet it was not a great match for me. One month later I received another call and was told of a match for me and asked if I would accept an increased risk donor heart. I agreed and that heart resides in this ‘older’ body and has brought life back to every organ system from head to toe.

My entire illness and organ transplant intrigues me; and the journeys that others have taken as well. As I began my appointments at Mayo, I attended the support group meetings and I gained confidence, understanding and experienced empathy and acceptance from my fellow travelers there. I am quite curious as to how we transform ourselves with our new hearts and how this venture progresses. Heart transplantation may seem mysterious, even magical, miraculous. Yet, the idea of another person’s organ in one’s body can also create a sense of anxiety and tension. I decided to go back to graduate school in medical anthropology and focus on organ transplants and in particular how patients view increased risk donor organs. This category of organs has saved and extended the lives of so many of us and yet some patients are hesitant to accept the potential risk attached – and that risk is so relative to our health. My research is an extension of my curiosity and commitment to learning more about our situations, mine and yours.

Dear Fellow Transplant Folks,
I would like to thank those of you who have shared your personal stories with me in an interview. Some of you accepted an increased risk donor organ and others did not. All of your perspectives are important.
I feel privileged to learn about your journey and I am humbled by your courage and strength and that of your families as you experienced and faced each physical and emotional step along the way. I am in awe!
I have learned so much from your stories and realize how much each of us has the desire to give back in different ways - taking care of our hearts, volunteering, attending to those we love. I can say now that my research is probably my own personal way of giving back.

I am still interviewing anyone who is interested. Please respond here os personal message me.

Deeply grateful to all of you. Ellen

@estrada53, I thought of you when I viewed this podcast.
At one time Hep C was a factor in discarding a liver for transplant. However, now, the experts at Mayo have found a way to transplant not only livers, but also kidneys, hearts, lungs from a donor who tests positive for Hep C. I just discovered and viewed this podcast and I am absolutely in awe of what the Mayo teams have accomplished in the way of saving lives.

Mayo Clinic Q&A podcast: Expanding the donor pool – hepatitis C no longer a barrier to transplant
https://youtu.be/KdthH0rGjsE

@estrada53 - How is your research progressing about the use/acceptance of at-risk organs? Will you be able to share what you have learned?