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? 

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

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@gingerw

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

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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!

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@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

REPLY
@danab

@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

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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.

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@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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**Note from the Community Director**
This research request has been reviewed and approved for posting on Mayo Clinic Connect. We have strict criteria that must be met before asking the community to provide feedback for any type of survey or research::
1. The request has been submitted to the Community Director and related department for review.
2. The submitter is a Mayo Clinic researcher, has a Mayo Clinic specialist or staff involved in your project, or works with an affiliated research institution.
3. The study or research must be ethical and approved the institutional review board (IRB).
4. The researcher is a long standing, participating member of Mayo Clinic Connect.

Participation in this research is voluntary and your decision to take part (or not) does not affect your care at Mayo Clinic or where you receive care.

If you have any concerns or questions about this, please contact me using this form: https://connect.mayoclinic.org/contact-a-community-moderator/

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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

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@brenwhite

@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

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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.

REPLY
@rosemarya

@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.

Jump to this post

Thanks you, @rosemarya.

REPLY
@danab

@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

Jump to this post

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.

REPLY
@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, 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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@estrada53

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!

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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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