Heart transplant

Posted by lupedelarosa12 @lupedelarosa12, Feb 28, 2017

My son has had a heart transplant and is recovering but is on a high dose of steroids and is acting really different coherent , bilegernt, not him at all , is this normal

Liked by @tbirdmunchkin

@contentandwell

@danab As you probably know, the wait for a liver is generally more than a year, and with that too some blood types often get transplanted sooner than others. I think type O takes the longest because if a deceased person is an O their organ can go to anyone, whereas if it's one of the other types it can only go to that type.
I am a type B which is why I think I got my new liver about two months sooner than expected. I go to Mass General in Boston and in that region liver transplants tend to take place at a higher MELD than in some of the other areas. Mayo told me they could transplant me at 28, which I was at, so I was just about to turn there when one came through for me here. Phew. I know Mayo is a great hospital but so is Mass General and it certainly simplifies things if you can stay within your own region. At that time most liver transplants were taking place at around MELD 31 or 32 in Boston. I understand from following the posts of "Compare Transplant Centers" on Facebook that the MELD at transplant is actually at around 28 in Boston now too.
JK

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@contentandwell ues i heard the same about type o for hearts also. Im type A which might have helped. I see you are from New England i was born in Worcester and lived in Upton, Uxbridge and then moved to RI when i was 10. Graduated In Bristol Ri before joining the AF thats how i discovered Arizona. But for Hearts Mayo in Phoenix is the goto place it seems. Ive met people from all over the country.

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@danab

@contentandwell i know it was basically a week. All i can say is the good Lord was there for me. I have heard that 6 months is the avg but i also heard much longer depending on blood type i guess

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Hi @dnab, my name is glinda I to have had a heart transplant I am 8 years post transplant as of January 20th of this year I caught a hold that destroyed my heart and waited from December 23rd of 2005 to January 20th of 2011 to get my heart as I am 0+ and it is extremely rare to get an o+ heart so yes it depends on the blood and tissue type also as to when you get the heart I got mine exactly 2days before my family would have been planning my funeral as my heart was that bad it was pure scar tissue and I never knew I had the heart attack as all I had was asthma symptoms but I had an ICD implanted in 2006 do to fainting and also had the home IV to keep my heart beating as my ef was not even 4% percent and I wasn't getting even a quarter of my blood that was oyxgenated by the time I had the transplant. So glad that you didn't have to wait long for yours and that you are doing great I just wanted to introduce myself and give you a little history on me and my journey to having to have the transplant feel free to ask me questions anytime
Glinda

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@danab

@contentandwell ues i heard the same about type o for hearts also. Im type A which might have helped. I see you are from New England i was born in Worcester and lived in Upton, Uxbridge and then moved to RI when i was 10. Graduated In Bristol Ri before joining the AF thats how i discovered Arizona. But for Hearts Mayo in Phoenix is the goto place it seems. Ive met people from all over the country.

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@danab I am from a Boston suburb but live in southern NH now, outside of Manchester. I feel so fortunate to have the top hospitals in Boston within reach. I basically go there for everything now except for my PCP.
Aren't there big spiders in AZ? :-{

@glinda It's great to hear you are doing so well. I love success stories. I know a woman who had a heart transplant when she was about 20 and she's in her 50s now and still doing great, a mother of 2 or 3 children and healthy. Such miracles.
JK

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@danab

@contentandwell ues i heard the same about type o for hearts also. Im type A which might have helped. I see you are from New England i was born in Worcester and lived in Upton, Uxbridge and then moved to RI when i was 10. Graduated In Bristol Ri before joining the AF thats how i discovered Arizona. But for Hearts Mayo in Phoenix is the goto place it seems. Ive met people from all over the country.

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@danab, I'd like to add my welcome to the Transplants group. I'm confident that along with @glinda the other heart transplant recipients, like @vacamrc @mlee1969 @bsox1901 @amynewheart and @eileenheart, will be glad to have you in the group. Your experience will also be helpful for family caregivers supporting heart recipients like @fatherscaregiver @lupedelarosa12 @incrediblemulk98 and @linda59.

Nature and hiking is something that connects many of the members of the group here. I'd be interested in hearing more about your recovery and getting back to a physical fitness to hike and golf again. How did you learn to trust your new heart? What precautions do you have to take with physical activity? Do you have to worry about altitude?

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This was a long process that will last my lifetime. Here is what I have done and continue to do, to the best of my ability. When I first received my heart in April of 2015, people around me could hear my heart (it was loud). Trust heart: I live to live, sure I have bad days, live in a high drama setting. I am also a step-parent to Pam’s seven children, grandparent to five. Work part time, college, nothing that I can think of would be a bridge I have not crossed. Physical: I need clearance to join the YMCA other than that I feel the limits. I lived with a VAD for two years I pushed myself each day. Recently I was talking to my Orthopedist, I asked him my I am always sore, he replied welcome to 58. In my four years, I am in position to attend the YMCA on a regular basis. This is the hardest thing for me, adding another aspect, create an exercise routine, I just keep trying to create space from the hospital. Not that I know of.

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@glinda

Hi @dnab, my name is glinda I to have had a heart transplant I am 8 years post transplant as of January 20th of this year I caught a hold that destroyed my heart and waited from December 23rd of 2005 to January 20th of 2011 to get my heart as I am 0+ and it is extremely rare to get an o+ heart so yes it depends on the blood and tissue type also as to when you get the heart I got mine exactly 2days before my family would have been planning my funeral as my heart was that bad it was pure scar tissue and I never knew I had the heart attack as all I had was asthma symptoms but I had an ICD implanted in 2006 do to fainting and also had the home IV to keep my heart beating as my ef was not even 4% percent and I wasn't getting even a quarter of my blood that was oyxgenated by the time I had the transplant. So glad that you didn't have to wait long for yours and that you are doing great I just wanted to introduce myself and give you a little history on me and my journey to having to have the transplant feel free to ask me questions anytime
Glinda

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Glinda, I am happy to hear your voice here in the transplant group. I hope you are doing well and staying warm.

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@mlee1969

This was a long process that will last my lifetime. Here is what I have done and continue to do, to the best of my ability. When I first received my heart in April of 2015, people around me could hear my heart (it was loud). Trust heart: I live to live, sure I have bad days, live in a high drama setting. I am also a step-parent to Pam’s seven children, grandparent to five. Work part time, college, nothing that I can think of would be a bridge I have not crossed. Physical: I need clearance to join the YMCA other than that I feel the limits. I lived with a VAD for two years I pushed myself each day. Recently I was talking to my Orthopedist, I asked him my I am always sore, he replied welcome to 58. In my four years, I am in position to attend the YMCA on a regular basis. This is the hardest thing for me, adding another aspect, create an exercise routine, I just keep trying to create space from the hospital. Not that I know of.

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@mlee1969 You sound as if you are doing great, that’s wonderful, and it sounds as if you are keeping very busy.
Your orthopedist’s comment reminds me of my PCP’s comment when I told him I am tired and sometimes I take a nap in the afternoon. He said, “what’s wrong with that?”.
Joining the Y to exercise is a great idea as long as it’s approved by your doctors. We know more and more these days about how important it is to stay physically active and it helps us not just physically but mentally also. I belong to a health club and go there very frequently – generally 6 times a week varying what I do. It is difficult to get started but maybe you could get some help from a trainer there, or even from a physical therapist on what the best exercises would be for you. I have had physical therapy a few times and I pretty much stick with the exercises recommended for me. I really want to do some yoga and Pilates but so far I have not gotten involved in a class. Those are both supposed to be very good for your core, and for balance. Yoga was recommended by one of my doctors because of the balance aspect. As we get older our balance can suffer and that can help. Thankfully that has not been a problem for me yet, but I want to keep it that way.
Looking forward to hearing what you decide to do at your Y, maybe I’ll get some new ideas.
JK

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