Looking to interview transplant patients: Increased Risk Donor Hearts

Posted by estrada53 @estrada53, Mar 5 4:16pm

Lend your own ideas to important research on increased risk donor hearts!

Hello, fellow transplant patients!

My name is Ellen Estrada and I received my heart transplant from an increased risk donor at Mayo Phoenix in January of 2017. Currently, I am in graduate school in medical anthropology at the University of Arizona researching how medical professionals and patients view increased risk donor hearts and the opportunities they offer. My research has been approved by the Human Subject Research Protection Program at U of AZ and also from our site coordinator (thanks @colleenyoung).

If you are interested in being interviewed for my research and offering your story and perspective, please reply to my contact information below or in the flyer.

For more information, please contact:
Ellen C Estrada, Primary Investigator ecestrada@email.arizona.edu. 773.592.2569 or
Dr. Eric Plemons, Consulting Advisor at eplemons@email.arizona.edu

All of us are or were presented with the option of an increased risk organ. How do or did you feel about that risk and what accepting an increased risk donor organ might mean to you and your health? 

@azdan99

My donor was CMV positive but i was not told it was a high risk heart. After yransplant i was immediately started on a high dose drug to reject CMV. I don't know what the drug was, but i guess it worked.i am now 18 years out and doing well.

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@azdan99 Hi Dan good to see you again. I'm not sure either if my High Risk status was due to CMV either. Your comment makes me wonder even more why mine was high risk. Either way like yourself for me it's been 3 years and no issues. If it wasn't for the blood test I wouldn't even know I had it.
Dana

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@azdan99

My donor was CMV positive but i was not told it was a high risk heart. After yransplant i was immediately started on a high dose drug to reject CMV. I don't know what the drug was, but i guess it worked.i am now 18 years out and doing well.

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Hi @azdan99 and @danab! I'm happy to know that you are enjoying your extended life after your transplant and that the cytomegalovirus (CMV) was short-lived and immediately taken care of! And thanks to the two of you for bringing up the topic of CMV. Many of us have struggled with this virus and it hasn’t been fun! Having CMV does not label a donor heart as increased risk, yet it seems to be risky and have such an impact on our health. Increased risk is reserved for organs from donors who have the possibility of transmitting HIV, Hep B or Hep C to the recipient. It’s not a pretty picture, but over 39% of all transplanted organs are now designated as increased risk. It doesn’t mean that there is an active infection, just the possibility. And these organs provide such wonderful opportunity to so many of us!

Here are a few links to help: one for (1) CMV – https://www.mayoclinic.org/diseases-conditions/cmv/symptoms-causes/syc-20355358 and (2) for a medical definition of increased risk donor organs from OPTN – the Organ Procurement and Transplant Center – https://optn.transplant.hrsa.gov/governance/public-comment/guidance-on-phs-increased-risk-donor-organs/#:~:text=The%20phrase%20%22increased%20risk%22%20refers%20to%20the%20donor,interpreted%20to%20be%20a%20predictor%20of%20graft%20survival.

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@estrada53

Hi Ginger. While this research may be focused on donor hearts, please let's open up the discussion to anyone with a transplant or anyone waiting on the list and their feelings and thoughts about increased risk donor organs. We have all had the conversation at one time or another. Please feel free to share. Thanks, everyone!

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@estrada53 My husband was transplanted 10/1/16 with a new-to-him kidney, from a 36 yr old young man. Earlier that year, his transplant team had asked him if he would accept a high risk kidney, to which he said "no". His donor kidney was not high risk, but the surgeon did not see it until he was on the table and it arrived from its previous location [different facility].

Not long after that, our friend who was on peritoneal dialysis, had a medical emergency, was placed back on hemodialysis, and was very sick with sepsis. Two weeks later she was offered a high risk kidney, her surgeon gave her 4 hours to decide. When she asked what he might advise a family member in the same situation, he told her "go for it". He apparently had information that he couldn't divulge to her. She did accept that high risk gift and has been very healthy and happy.
Ginger

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@gingerw

@estrada53 My husband was transplanted 10/1/16 with a new-to-him kidney, from a 36 yr old young man. Earlier that year, his transplant team had asked him if he would accept a high risk kidney, to which he said "no". His donor kidney was not high risk, but the surgeon did not see it until he was on the table and it arrived from its previous location [different facility].

Not long after that, our friend who was on peritoneal dialysis, had a medical emergency, was placed back on hemodialysis, and was very sick with sepsis. Two weeks later she was offered a high risk kidney, her surgeon gave her 4 hours to decide. When she asked what he might advise a family member in the same situation, he told her "go for it". He apparently had information that he couldn't divulge to her. She did accept that high risk gift and has been very healthy and happy.
Ginger

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Hi. I am a 11/2017 liver transplant. I said yes to accepting a high risk organ. I did not receive one, but I was not going to live without a transplant soon! I am not a gambler and the odds of getting another organ available very soon was a chance I could not take. Just something for all to ponder and in the case of kidney availability- they are usually a longer wait.

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@corn50

Hi. I am a 11/2017 liver transplant. I said yes to accepting a high risk organ. I did not receive one, but I was not going to live without a transplant soon! I am not a gambler and the odds of getting another organ available very soon was a chance I could not take. Just something for all to ponder and in the case of kidney availability- they are usually a longer wait.

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Hello @corn50! Thank you for your response. I bet your story reverberates with many people on our Connect. Congratulations on your transplant.

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@rosemarya

@azdan99, Did you ever, in your wildest imagination expect such a remarkable life? Organ transplant recipients have such amazing stories!
Are you planning to participate in the Heart transplant research interview that @estrada53 has shared?

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At the time of transplant, I would have been happy with 5 additional years. I feel so blessed to have lived a quality life this long. Doing my part to keep it going.

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@estrada53, I'm so fascinated by what led you to research this topic, in part inspired by your transplant experience (of course), but also participating in discussion on Mayo Clinic Connect and your transplant support group at Mayo Clinic AZ. Would you mind telling us how you got here?

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@estrada53

Hi Ginger. While this research may be focused on donor hearts, please let's open up the discussion to anyone with a transplant or anyone waiting on the list and their feelings and thoughts about increased risk donor organs. We have all had the conversation at one time or another. Please feel free to share. Thanks, everyone!

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Since I was in end stage liver disease I signed onto all levels of high risk donations. I knew death would be soon, so I figured why not. I was fortunate to have gone through the entire eligibility process, met with the Lahey transplant team, etc., and the risks and precautions were thoroughly presented. About a week later, I ended up in the local emergency room for a brain fog event, Lahey had me transported to their hospital for monitoring. On my way home with a friend I received “the call.” So, went right back! I was blessed with a healthy liver from a 69 year old male. It was not disclosed what he died from, but I was told during my evaluation that had there been concerns these would have been discussed.

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@colleenyoung

@estrada53, I'm so fascinated by what led you to research this topic, in part inspired by your transplant experience (of course), but also participating in discussion on Mayo Clinic Connect and your transplant support group at Mayo Clinic AZ. Would you mind telling us how you got here?

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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.

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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

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