Heart transplant: recovering but steroids are affecting behavior

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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@tbirdmunchkin Hi Glinda, I was wondering how your doing, I was just reviewing some of the fine folks Ive run into here on connect, I'm now over 2 years post transplant and doing well. How about you? Has this newest virus got you homebound like the rest of us?

Have a Blessed Day
Dana

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@danab

@tbirdmunchkin Hi Glinda, I was wondering how your doing, I was just reviewing some of the fine folks Ive run into here on connect, I'm now over 2 years post transplant and doing well. How about you? Has this newest virus got you homebound like the rest of us?

Have a Blessed Day
Dana

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Hi@danab,
I'm actually doing good staying safe and well here in Eau Claire WI. It's still been a slow recovery from the accident 2 years ago as I have muscle atrophy from the accident and not being able to move because of it for a long time but I'm slowly improving I walk still with the cane and will have to have it probably the rest of my life just in case I need it so will keep with me wherever I go my health has been good just mild to moderate asthma acting up as always I keep on close contact with my transplant team and coordinator when needed I did pass my nine years post heart transplant exam this January but I did find out that I have to have another right heart cath and angiogram next year as they doing some moderate blockage in 2 on my main arteries and a couple small lesions on my heart but they aren't worried about it the it's just being cautious hence the right heart cath and angiogram again next year otherwise I'm good staying safe I never go out without my mask or without hand sanitizer it's still hard to believe I am 9 years post heart transplant I still feel like it was yesterday hope all is safe and well with you and will try to be on here more often since I am unable to do appointments right now I work on cardio when able to with certain exercises as well as using the treadmill at the YMCA which is closed right now so have to do some therapy at home for cardio with bands and weights when my body allows me to but I am well and safe and following our safer – at – home rules except for having to get essentials like food and stuff even my roommate/caregiver is using a mask and hand sanitizer when we go out so I am always safe.
Please stay safe and well yourself.will keep everyone updated on how I'm doing here also. I know it's been a while since I was on here but have tried to keep up with everyone here also. I'm trying to stay busy with being homebound we are allowed to go out and walk but now with the snow we got again for me it's a risk to fall so have to wait. It's okay though with me waiting to walk outside again spring will come and stay soon 😊
Thank you for asking about me and sorry I haven't checked in lately have more time now with quarintine so am able to get on mayo connect
Thanks Glinda

And everyone here on mayo connect please stay safe and well I'm praying for you all to be well and safe

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@glinda

Hi@danab,
I'm actually doing good staying safe and well here in Eau Claire WI. It's still been a slow recovery from the accident 2 years ago as I have muscle atrophy from the accident and not being able to move because of it for a long time but I'm slowly improving I walk still with the cane and will have to have it probably the rest of my life just in case I need it so will keep with me wherever I go my health has been good just mild to moderate asthma acting up as always I keep on close contact with my transplant team and coordinator when needed I did pass my nine years post heart transplant exam this January but I did find out that I have to have another right heart cath and angiogram next year as they doing some moderate blockage in 2 on my main arteries and a couple small lesions on my heart but they aren't worried about it the it's just being cautious hence the right heart cath and angiogram again next year otherwise I'm good staying safe I never go out without my mask or without hand sanitizer it's still hard to believe I am 9 years post heart transplant I still feel like it was yesterday hope all is safe and well with you and will try to be on here more often since I am unable to do appointments right now I work on cardio when able to with certain exercises as well as using the treadmill at the YMCA which is closed right now so have to do some therapy at home for cardio with bands and weights when my body allows me to but I am well and safe and following our safer – at – home rules except for having to get essentials like food and stuff even my roommate/caregiver is using a mask and hand sanitizer when we go out so I am always safe.
Please stay safe and well yourself.will keep everyone updated on how I'm doing here also. I know it's been a while since I was on here but have tried to keep up with everyone here also. I'm trying to stay busy with being homebound we are allowed to go out and walk but now with the snow we got again for me it's a risk to fall so have to wait. It's okay though with me waiting to walk outside again spring will come and stay soon 😊
Thank you for asking about me and sorry I haven't checked in lately have more time now with quarintine so am able to get on mayo connect
Thanks Glinda

And everyone here on mayo connect please stay safe and well I'm praying for you all to be well and safe

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@glinda Good to hear your doing well, I too am staying home mostly except for my morning walks. I miss our Gym also and not getting much strength training but I'm confident this will pass and Life my be more like we are used too. I have commented that I always wear a Mask in public and I do get strange looks once in a while but now more people are wearing masks so I'm not so strange anymore. Actually just recently I found out My Pastor was pretty ill in Janurary and did OK got better and is fine. But the amazing part was he was just tested for antibodies and found out he did have the covid-19 and now has antibodies. Well even tho I am attending online now I was going to church and had conversations with him but always wearing my mask and using sanitizer and never caught it. So just maybe our dedication to good masking and sanitation has paid off. I'm not going to assume that i can always be around others that are sick and not get it but I am sure glad for my teams recommendation to wear a mask during flu season. Well great to hear from you and Have a Blessed Day.
Dana

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@danab

@glinda Good to hear your doing well, I too am staying home mostly except for my morning walks. I miss our Gym also and not getting much strength training but I'm confident this will pass and Life my be more like we are used too. I have commented that I always wear a Mask in public and I do get strange looks once in a while but now more people are wearing masks so I'm not so strange anymore. Actually just recently I found out My Pastor was pretty ill in Janurary and did OK got better and is fine. But the amazing part was he was just tested for antibodies and found out he did have the covid-19 and now has antibodies. Well even tho I am attending online now I was going to church and had conversations with him but always wearing my mask and using sanitizer and never caught it. So just maybe our dedication to good masking and sanitation has paid off. I'm not going to assume that i can always be around others that are sick and not get it but I am sure glad for my teams recommendation to wear a mask during flu season. Well great to hear from you and Have a Blessed Day.
Dana

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Hi Dana, I was just reading about your pastor having antibodies to COVID-19. I was not aware of an available serologic test for antibodies yet. I guess I'm surprised and behind the times. Anyone else know about these tests? Are they just in one part of the country? And good for your masking, Dana. I'm with you on that! #maskup

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@estrada53

Hi Dana, I was just reading about your pastor having antibodies to COVID-19. I was not aware of an available serologic test for antibodies yet. I guess I'm surprised and behind the times. Anyone else know about these tests? Are they just in one part of the country? And good for your masking, Dana. I'm with you on that! #maskup

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@estrada53 Yes I also saw a podcast today from Mayo about there starting to test for antibodies here is the link.

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@estrada53

Hi Dana, I was just reading about your pastor having antibodies to COVID-19. I was not aware of an available serologic test for antibodies yet. I guess I'm surprised and behind the times. Anyone else know about these tests? Are they just in one part of the country? And good for your masking, Dana. I'm with you on that! #maskup

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@estrada53 I have definitely heard that they can test for antibodies, and I have heard about a number of people who apparently did have COVID and were sick but not so sick that they needed much medical care, and have tested positive for antibodies.
They have also found, I believe it was in a different country, that some people who had antibodies did get COVID again. The assumption is that they had a very mild case and the antibodies they had were not strong enough to ward off the germs a second time.
JK

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@danab

@estrada53 Yes I also saw a podcast today from Mayo about there starting to test for antibodies here is the link.

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@danab, I want to thank you for sharing this link! I found this 10 minute video to be informative and also promising, especially as the country is beginning to discuss easing restrictions in some areas.

@estrada53, @contentandwell,
Here is another link: Dr. Gregory Poland, an infectious diseases expert and director of Mayo Clinic's Vaccine Research Group, answers questions about the two tests, who should take them, and how they will help scientists and researchers better understand this virus.

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