Looking to interview transplant patients: Increased Risk Donor Hearts

@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?

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!

@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

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.

@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

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.

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

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.

@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?

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.