Looking to interview transplant patients: Increased Risk Donor Hearts

@estrada53 Just heart transplant patients? There might be a wider range of participants if the increased risk donor is for any solid organ.
Ginger

Hi Ginger. At this point the focus of my project is heart transplant. I can see further research that would be necessary for recipients of other organs and tissue as well. It is on my horizon already. Thanks for your reply!

@estrada53 Hi fellow Heart transplant recipient. Mine was considered a high-risk donor and I don't know why except later I found out the donor had CMV and I had never had it and since then I did have to deal with that but im not sure if that was the reason it was considered high risk.

It's interesting tho when I was talking to the Surgeon I said can you give me some odds of it being an issue and I love his response.
Well if it was my Wife I would tell her yes take it. Which my response was good enough for me let's do it.
I'll say tho that always made me wonder if maybe the issue was a gender one. I read somewhere there is a slightly higher risk when a Woman's Heart is put into a Man. But this is total speculation. Maybe someday the Donor's family may write back and let me know more about Him or Her.

As for the CMV, I was told I have it. It shows up in my blood counts every so often and I took meds during my first year for it but didn't have any symptoms I've noticed. As of the past year or so it's been negative but they test every month.

I like this thread and I hope more join in.

Have a Blessed Day
Dana

Thanks, @danab for your reply. I agree with you and hope others will join in as well. It's a topic that is so important now as more and more increased risk donor organs (IROs) are transplanted every year. And there is confusion about what this 'risk' really means so it's good to talk about. I appreciate your candor and response. Be well.

@estrada53, I had my liver/kidney transplant nearly 12 years ago, and I marvel at the medical advances that have happened during that interval of time. I think it is exciting to see more and more about the successful use of at risk organs. I commend you for taking on this project, and for including the members of Mayo Connect.
This morning I made a round-up of the members who participated in some of the heart transplant discussions on Connect. I invite the following members to meet you, @estrada53, and to participate in this research opportunity.

@gbcapecod @fatherscaregiver @dennisprater @chugly11 @brenwhite @azdan99 @tbrigham @scottij @jstoll, @bcrandall, @tbirdmunchkin @glinda), @lupedelarosa12, @incrediblemulk98, @linda59, @mlee1969, - You can scroll to the Discussion Title: Looking to interview transplant patients: Increased Risk Donor Hearts and get the details for how to - Lend your own ideas to important research on increased risk donor hearts! - and - access the information for participating.

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@estrada53 Hello Ellen, just a response to this thread and your current research. I am mother and caregiver to my son, Brendan, who is coming up on his 1 year heartiversary on April 1st. He received a high risk heart, from a young man under the age of 18, that is all we know about his generous donor at this point. Prior to his up-listing onto the transplant list in February of 2020, Brendan was on an LVAD for 3 years as status 7, starting to experience clotting issues. The heart team at Mayo Phoenix spoke to us about considering a high risk heart, and we agreed that it would open up the opportunities. It was a month and half later that they called with a possible donor who ended up being viable for transplant. I will approach Brendan and show him the recruitment flyer regarding your study. Are the email and phone numbers on the flyer your preferred way to contact? Best regards, Brenda White

Hello@brenwhite. My email and phone number are included in my original post. Feel free to reach out at your convenience. I look forward to connecting with you and your son Brandon.

Thanks you, @rosemarya.

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.