Preparing for a heart transplant

Posted by jbilton @jbilton, Wed, Jun 5 2:39pm

My husband has been referred to the Mayo clinic for a heart transplant evaluation on June 18th. Would love to chat with others who have already been through this process and what time frames and follow ups will be like.

Hi @jbilton, my name is Glinda and I had a heart transplant 8years and 5 months ago my evaluation took around a three week period for all my testing I went through seeing cardiologists, dental surgeons, lab work, infectious disease, genetics testing, right heat catherisation and angiogram, breathing tests besides seeing so many different specialists like dermatology and eye specialists. For me it was an on going process from 2005 to Jan of 2011 my wait was that long due to having 2 special needs kids and a mother to take care of and also because I am 0 positive for tissue and blood type. It is extremely hard to get an 0 positive heart compared to other blood types 0 positive people don't like yo donate their organs. If I am not being to personal and may ask you what blood type is your husband do you know?
I hope this helps you some for answers and if you have anymore questions please feel free to contact me here on mayo connect at any time.
Hugs to you and your husband
Glinda

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Thanks for your reply the information is very helpful and interesting. We live in SC and so there will be travel involved with these visits. My husband is not O positive but rather AB blood type so I hope that helps him. Did they wait to put you on a list since you mentioned your children and mother were a responsibility for you first to take care of. This is all so very new that any information is helpful. Thanks so much!

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@jbilton

Thanks for your reply the information is very helpful and interesting. We live in SC and so there will be travel involved with these visits. My husband is not O positive but rather AB blood type so I hope that helps him. Did they wait to put you on a list since you mentioned your children and mother were a responsibility for you first to take care of. This is all so very new that any information is helpful. Thanks so much!

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@jbilton, yes they did wait to put me on the list until I could put my daughter in an adult family home for specials needs adults my son can live on his own with help from an aid and my mom had help from an aid when I had my transplant it actually is easier for any other blood type for transplant but it is still hard to get a heart transplant due to the shortage of organ donors for transplantation but I always had faith in mayo and they will tell you like it is they will be honest with you on your tests and on your waiting for transplant if you are a candidate trust Mayo, can't tell you how long your wait would be as everyone is different when waiting for a transplant due to how severely I'll you are I was stable from 2005 to 2009with my cardoimyopathy with ridgety
Glinda

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@jbilton Welcome to connect! I just got back from two days at Mayo Clinic in Rochester, I received a kidney transplant there several years ago. I can assure you it is a beautiful place with and abundance of caring and competent professionals. In my opinion the very best place to stay while you are in the transplant process is The Gift of Life Transplant House (507) 288-7470. If you would like to stay there when your husband had his transplant you can take a tour while you are there in a few weeks. You will be surrounded by others who are going through transplants and caring for loved ones who are healing. Please keep us posted through you process, we are all here to lend and ear, say a prayer and offer whatever support we can. Blessings to you and your hubby.

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Thank you for the reply. We are going to the Mayo clinic in Jacksonville. We only have a one day appointment this time. He will have some blood work and then I believe we speak with the nurse practitioner and the doctor that afternoon. We are from SC so the trip is not bad but I am sure we will always want to stay the day before an appointment as we may have to be there early a.m. and I would not want to push too hard on these trips for him. I have already enjoyed reading these posts and I told my husband I thought they would be a huge help for him moving forward in this process.

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@jolinda

@jbilton Welcome to connect! I just got back from two days at Mayo Clinic in Rochester, I received a kidney transplant there several years ago. I can assure you it is a beautiful place with and abundance of caring and competent professionals. In my opinion the very best place to stay while you are in the transplant process is The Gift of Life Transplant House (507) 288-7470. If you would like to stay there when your husband had his transplant you can take a tour while you are there in a few weeks. You will be surrounded by others who are going through transplants and caring for loved ones who are healing. Please keep us posted through you process, we are all here to lend and ear, say a prayer and offer whatever support we can. Blessings to you and your hubby.

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@jbilton, @jolinda, I want to add one peice of information: If you are undergoing your pre transplant evaluation, you can stay at GOL. And whenever you return for your appointments, too. (Pending availability of room)

Liked by @tbirdmunchkin

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@jbilton, I want to take a moment to say Welcome to Connect. I am a liver/kidney recipient, and I am here to help you in any way that I am able during you and your husbands journey toward transplant. I assure you that you will gain a wealth of information and catch a glimpse of the way Mayo takes care of its patients.
I am especially happy that you have already met @glinda who is an expert by her own experience with heart transplant. I also want to invite @danab and @estrada53 who have received heart transplant. I know that if they see this that they will be able to provide you with their experiences. You will soon discover that you are not alone. Your questions are always welcome.

As a new member, I want to introduce you to the Pages section on Connect where you can learn more about transplants and read articles that are provided by the Mayo transplant staff. Here are a couple of newsfeed articles that I have selected to get you started because they are about heart transplant recipients.
-Meet Yasmin: A Sudden Detour for Heart Transplant, Then Back in Stride
https://connect.mayoclinic.org/page/transplant/newsfeed-post/meet-yasmin-a-sudden-detour-for-heart-transplant-then-back-in-stride/
-Meet Beki: Rare Heart-Liver Transplant Gives South Carolina Woman a Second Chance at Life
https://connect.mayoclinic.org/page/transplant/newsfeed-post/meet-beki-rare-heart-liver-transplant-gives-south-carolina-woman-a-second-chance-at-life/
I will be thinking about you and your husband.

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Hi @jbilton, I'm adding my welcome. I'd also like to tag a few additional members who can add to this discussion. Please meet heart transplant recipients @danab @mlee1969 and @amynewheart, as well as, @lupedelarosa12 and @fatherscaregiver, who supported family members getting a heart transplant. Perhaps @ninimurphy would also like to join this discussion as she may have to consider a heart transplant in the future.

I'll add that Mayo Clinic, Florida the transplant lodging is called Gabriel House of Care: https://connect.mayoclinic.org/page/transplant/newsfeed-post/transplant-hospitality-houses-a-home-away-from-home/

JBilton, do you know how long you will be staying in Jacksonville for the evaluation?

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@colleenyoung

Hi @jbilton, I'm adding my welcome. I'd also like to tag a few additional members who can add to this discussion. Please meet heart transplant recipients @danab @mlee1969 and @amynewheart, as well as, @lupedelarosa12 and @fatherscaregiver, who supported family members getting a heart transplant. Perhaps @ninimurphy would also like to join this discussion as she may have to consider a heart transplant in the future.

I'll add that Mayo Clinic, Florida the transplant lodging is called Gabriel House of Care: https://connect.mayoclinic.org/page/transplant/newsfeed-post/transplant-hospitality-houses-a-home-away-from-home/

JBilton, do you know how long you will be staying in Jacksonville for the evaluation?

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Thank you so much for adding me to this discussion. I am currently a patient at Columbia Presbyterian in NY but follow Mayo closely. Hoping to buy a few years before go through heart transplant, but we are probably relocating to Florida when husband retires, and daughter done in school, so my first choice would be Mayo down there.
Good luck to both of you. I will keep you in my prayers! 🙏🏻

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@colleenyoung

Hi @jbilton, I'm adding my welcome. I'd also like to tag a few additional members who can add to this discussion. Please meet heart transplant recipients @danab @mlee1969 and @amynewheart, as well as, @lupedelarosa12 and @fatherscaregiver, who supported family members getting a heart transplant. Perhaps @ninimurphy would also like to join this discussion as she may have to consider a heart transplant in the future.

I'll add that Mayo Clinic, Florida the transplant lodging is called Gabriel House of Care: https://connect.mayoclinic.org/page/transplant/newsfeed-post/transplant-hospitality-houses-a-home-away-from-home/

JBilton, do you know how long you will be staying in Jacksonville for the evaluation?

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Thanks so much for the reply. The visit on June 18th is just for one day. Doing some blood work and meeting with the dr. and nursing staff.

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@rosemarya

@jbilton, I want to take a moment to say Welcome to Connect. I am a liver/kidney recipient, and I am here to help you in any way that I am able during you and your husbands journey toward transplant. I assure you that you will gain a wealth of information and catch a glimpse of the way Mayo takes care of its patients.
I am especially happy that you have already met @glinda who is an expert by her own experience with heart transplant. I also want to invite @danab and @estrada53 who have received heart transplant. I know that if they see this that they will be able to provide you with their experiences. You will soon discover that you are not alone. Your questions are always welcome.

As a new member, I want to introduce you to the Pages section on Connect where you can learn more about transplants and read articles that are provided by the Mayo transplant staff. Here are a couple of newsfeed articles that I have selected to get you started because they are about heart transplant recipients.
-Meet Yasmin: A Sudden Detour for Heart Transplant, Then Back in Stride
https://connect.mayoclinic.org/page/transplant/newsfeed-post/meet-yasmin-a-sudden-detour-for-heart-transplant-then-back-in-stride/
-Meet Beki: Rare Heart-Liver Transplant Gives South Carolina Woman a Second Chance at Life
https://connect.mayoclinic.org/page/transplant/newsfeed-post/meet-beki-rare-heart-liver-transplant-gives-south-carolina-woman-a-second-chance-at-life/
I will be thinking about you and your husband.

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Thank you for these articles. I had not read them until today and it was most insightful. I am going to have my husband read about Yasmin as he is a prosecutor as well. We got our paperwork yesterday and my husband's comments were this is frightening and overwhelming. Reading her article I am sure will make him feel better.

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I just spent 3 weeks 5/12/19 to 6/2/19 at the Mayo Clinic in Jacksonville for a lung transplant evaluation, travelled across the country from Oregon. It was an extremely intensive and a scary process not knowing or understanding all the details. At 70 years old I have never been in a hospital, 3 weeks of tests and more test was overwhelming. I quickly became very comfortable with my Lung transplant Team. Everyone made me feel at ease all the time, doctors, nurses social workers, lab techs, lung transplant patient support group and the comfort dogs are the best in the world. At the end of 2 weeks I decided that a lung transplant is the way I want to go. The team made it easy to decide. I have to return on 6/22/19 for a week to fix an artery so that if successful I can go to Selection that week. We stayed at the Courtyard Mayo and will do so again, it is very convenient and easy to get back and forth on a on demand shuttle, just a few minutes each way, great with my wheelchair. For me the beauty of the campus, all the great people involved and the fact that everything worked like the Swiss Railroad, on time all the time. I will pack up my power wheelchair, put it on the plane and carry my portable oxygen concentrator on board and be there a week Saturday.
Trust that all goes well with your trip and my prayers are with you.

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Ours prayers back to you as well. We will be there on the 18th for the day. My husband is overwhelmed at the prospect of this but sounds like that is normal. Take care.

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Yes it is overwhelming to me, however my team at Jacksonville has made it easier. The Lung Transplant Support Group made a big difference for me. I spent 6 hours over 3 weeks with them. I'm sure there must be one for heart transplants.

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@djallan

I just spent 3 weeks 5/12/19 to 6/2/19 at the Mayo Clinic in Jacksonville for a lung transplant evaluation, travelled across the country from Oregon. It was an extremely intensive and a scary process not knowing or understanding all the details. At 70 years old I have never been in a hospital, 3 weeks of tests and more test was overwhelming. I quickly became very comfortable with my Lung transplant Team. Everyone made me feel at ease all the time, doctors, nurses social workers, lab techs, lung transplant patient support group and the comfort dogs are the best in the world. At the end of 2 weeks I decided that a lung transplant is the way I want to go. The team made it easy to decide. I have to return on 6/22/19 for a week to fix an artery so that if successful I can go to Selection that week. We stayed at the Courtyard Mayo and will do so again, it is very convenient and easy to get back and forth on a on demand shuttle, just a few minutes each way, great with my wheelchair. For me the beauty of the campus, all the great people involved and the fact that everything worked like the Swiss Railroad, on time all the time. I will pack up my power wheelchair, put it on the plane and carry my portable oxygen concentrator on board and be there a week Saturday.
Trust that all goes well with your trip and my prayers are with you.

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@djallan, Welcome to Mayo Connect. Thank you for sharing your description of your recent experience.
I am happy to hear that your evaluation process and testing has been accomplished, and that you will be able to return to Mayo soon for a preliminary procedure. I will keep you in my thoughts and prayers and you travel, undergo a successful procedure, and get listed for your transplant. It is a big step, and you are going to be in the best of care at Mayo.

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