Heart transplant recovery: What to expect?

Posted by dennisprater @dennisprater, Nov 25, 2019

In my 20th month of recovery of heart transplant. Big loss of muscle strength. Almost strong just before transplant but not few years before transplant. Is this time normal?

Welcome, @dennisprater to the Transplants group on Connect.
I'd like to invite fellow heart transplant recipients @danab @amynewheart @mlee1969 and @glinda to join this discussion and share their experiences with recovery. Caregivers @lupedelarosa12 @linda59 and @fatherscaregiver might have a few things to add too.

You may also be interested in these related discussions:
– Complications post Heart Transplant https://connect.mayoclinic.org/discussion/complications-post-heart-transplant/
– Heart transplant: recovering but steroids are affecting behavior https://connect.mayoclinic.org/discussion/heart-transplant-231a15/

Dennis, am I reading your message correctly that you feel almost as strong as you did just before the transplant but not yet as good as you did a few year prior to transplant. Is that correct? What activities do you like to do and what helps you get stronger?

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Hi @dennisprater my name is Glinda and I am a heart transplant patient going on 9 years post transplant on the 20th of January of this coming year.
I don't know if it's normal to have a big muscle loss after transplant after 20 months or not as I never had that problem with muscle loss after my transplant but I was in great shape before my transplant as I walked 10 to 15 miles a day in my driveway as it was a half mile driveway even after my heart attack I was still in good shape according to my doctor's and I was a caregiver also so I had to stay strong I do know that I was tired for about a week but my team had me up and walking a week after my transplant as I had medication issues with the steroids but I know also that I had no muscle problems after my transplant I had my doctor's telling me not to overdue it and to take it easy not walk all day needless to say I drove all my caregivers crazy as I wanted to walk all day and keep moving and my caregivers were all strangers to me. I don't know if this will help you or not what I just wrote. But if you would like to talk at anytime I am always here and available for you to talk to I do have a suggestion for you talk to your transplant team on your muscle strenghth and let them know you are worried it might just be that they need to have your medicines twerked a little or some changed to help. And remember everyone is different in their recovery and recovery time. But try talking to your transplant team that's what they are doing here for to help you answer these questions and I will help you also if I am able @glinda

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@dennisprater any type of exercise is great and don't push yourself work at your own pace don't be in a hurry to get to where you were before your transplant it took me 3 years after my transplant to get back to where I was in walking and I took it slow per my doctor's orders I think you are doing great myself you have to remember everyone is different what's works or is good for one mat not be for someone else so don't be to hard on yourself as I say I think you are doing great but if you are worried talk to your transplant team on their opinion as to how you are doing.
@glinda

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@colleenyoung

Welcome, @dennisprater to the Transplants group on Connect.
I'd like to invite fellow heart transplant recipients @danab @amynewheart @mlee1969 and @glinda to join this discussion and share their experiences with recovery. Caregivers @lupedelarosa12 @linda59 and @fatherscaregiver might have a few things to add too.

You may also be interested in these related discussions:
– Complications post Heart Transplant https://connect.mayoclinic.org/discussion/complications-post-heart-transplant/
– Heart transplant: recovering but steroids are affecting behavior https://connect.mayoclinic.org/discussion/heart-transplant-231a15/

Dennis, am I reading your message correctly that you feel almost as strong as you did just before the transplant but not yet as good as you did a few year prior to transplant. Is that correct? What activities do you like to do and what helps you get stronger?

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I work out at gym 2 -3 days a week. Strength about 60 %. Can go 18 holes golf but wiped out for rest of day. Endurance is lacking .

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Hello @dennisprater my father is almost 2 1/2 years post transplant. He also lost a lot of muscle strength and endurance. He was an older patient when receiving his transplant, which may have slowed his recovery. He has been going to outpatient therapy for two years (off and on) two times a week trying to rebuild his strength to continue on to cardiac rehab. He has had several hospitalizations for pneumonia and an infection. The hospitalizations usually last at least a month and sometimes he will be released to inpatient pt. He declines rapidly (strength) when hospitalized and we end up starting the entire process over. He has been using a walker for two years now and transitioning to a cane with the help of pt. He has not been able to return to golf (hoping next year) or driving a car. The process has been slow. Several medication changes because of the intolerance, side effects, etc and still on steroids as his second immune suppressant. From the other heart transplant recipients I have met I have seen a vast difference in the recovery process for each. It is wonderful you are enjoying golf again. The process seems slow and frustrating, hang in there!

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@colleenyoung

Welcome, @dennisprater to the Transplants group on Connect.
I'd like to invite fellow heart transplant recipients @danab @amynewheart @mlee1969 and @glinda to join this discussion and share their experiences with recovery. Caregivers @lupedelarosa12 @linda59 and @fatherscaregiver might have a few things to add too.

You may also be interested in these related discussions:
– Complications post Heart Transplant https://connect.mayoclinic.org/discussion/complications-post-heart-transplant/
– Heart transplant: recovering but steroids are affecting behavior https://connect.mayoclinic.org/discussion/heart-transplant-231a15/

Dennis, am I reading your message correctly that you feel almost as strong as you did just before the transplant but not yet as good as you did a few year prior to transplant. Is that correct? What activities do you like to do and what helps you get stronger?

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Hi folks I will be post heart transplant 25 years this first of June, and wouldn’t you know it I got the flu, from my sweet granddaughter who I don’t blame. I should have avoided her, but how do you do that at Christmas. so watch yourselfs and avoid sick people, other than that doing ok. Has anyone else had ‘this problem lately.

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@chugly11

Hi folks I will be post heart transplant 25 years this first of June, and wouldn’t you know it I got the flu, from my sweet granddaughter who I don’t blame. I should have avoided her, but how do you do that at Christmas. so watch yourselfs and avoid sick people, other than that doing ok. Has anyone else had ‘this problem lately.

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@chugly11 Welcome to Mayo Clinic Connect. We are a diverse group of patients, family members, and caregivers. Congratulations on your upcoming transplantiversary!! How have you seen things changes over the decades, in how your case has been managed?

As far as staying healthy during this season, I am providing a link to a conversation that is also part of this transplant group. Anyone with a compromised immune system has to be careful, don't we? https://connect.mayoclinic.org/discussion/helpful-tips-to-keep-your-holidays-merry/

We look forward to hearing that you are feeling better!
Ginger

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@chugly11

Hi folks I will be post heart transplant 25 years this first of June, and wouldn’t you know it I got the flu, from my sweet granddaughter who I don’t blame. I should have avoided her, but how do you do that at Christmas. so watch yourselfs and avoid sick people, other than that doing ok. Has anyone else had ‘this problem lately.

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@chugly11, I am happy to welcome you and to thank you for sharing and encouraging us to try. try, try, to avoid getting sick. I have managed to avoid the flu since my transplant 10 years ago. Chugly, I have wondered how the flu is treated in transplant patients. Did you need to be hospitalized? Were you prescribed tamiflu?

I hope both you and your granddaughter will soon recover from this Christmas surprise. How are you feeling?

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Hi Dennis. I am entering my third year post TX on January 7. I definitely felt muscle loss in my body and also felt stronger- I know it sounds like a contradiction but I think recovery is so individual. Part of the need for my transplant was the fact that my heart was getting only 30% of the needed oxygen to my muscle masses. I was working out prior to the transplant, (my insurance allowed me to do this through cardiac rehab after I needed cardioversion), and I was on IV meds. I was in "good shape' after surgery and was out of my bed later in the day. I was walking around the ICU the next day. I felt great. But I could tell I lost muscle control in my 'behind'… and in my arms. So my first business was to try to recover this. I was 63 at the time of my surgery and I still feel unconditioned at times and have to 'start over'. At times, things don't seem to progress with exercise, but I persevere. Hope this helps!

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@estrada53

Hi Dennis. I am entering my third year post TX on January 7. I definitely felt muscle loss in my body and also felt stronger- I know it sounds like a contradiction but I think recovery is so individual. Part of the need for my transplant was the fact that my heart was getting only 30% of the needed oxygen to my muscle masses. I was working out prior to the transplant, (my insurance allowed me to do this through cardiac rehab after I needed cardioversion), and I was on IV meds. I was in "good shape' after surgery and was out of my bed later in the day. I was walking around the ICU the next day. I felt great. But I could tell I lost muscle control in my 'behind'… and in my arms. So my first business was to try to recover this. I was 63 at the time of my surgery and I still feel unconditioned at times and have to 'start over'. At times, things don't seem to progress with exercise, but I persevere. Hope this helps!

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@estrada53, I believe that you intended this reply to go to @dennisprater. I know that he will want to hear from you, so when I included his @name he will be sent an email notification that there is a message.

@estrada53, I want to add my Happy Transplant Anniversary greeting to you. I am happy to read how well you are doing since your heart transplant 3 years ago. Do you have any special plans to celebrate or to honor this special occasion?

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@estrada53

Hi Dennis. I am entering my third year post TX on January 7. I definitely felt muscle loss in my body and also felt stronger- I know it sounds like a contradiction but I think recovery is so individual. Part of the need for my transplant was the fact that my heart was getting only 30% of the needed oxygen to my muscle masses. I was working out prior to the transplant, (my insurance allowed me to do this through cardiac rehab after I needed cardioversion), and I was on IV meds. I was in "good shape' after surgery and was out of my bed later in the day. I was walking around the ICU the next day. I felt great. But I could tell I lost muscle control in my 'behind'… and in my arms. So my first business was to try to recover this. I was 63 at the time of my surgery and I still feel unconditioned at times and have to 'start over'. At times, things don't seem to progress with exercise, but I persevere. Hope this helps!

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@estrada53 Recovery is individual but I think you would have to be bionic to not lose some muscle during recovery. I worked out a lot, almost right up to transplant — I had to stop 3 or 4 weeks before it. Then of course after transplant, I had to wait to heal and recover. By the time I was finally able to return to the gym and to the pool, I could really feel a huge difference.
I was told by a hospitalist at one point, that for each day you are in the hospital it takes about 4 days to recover! I presume that is true for recovery time also.
JK

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So true on the loss of muscle mass i celebrate 2 years today and i do work out 5 days a week but it has been a long road getting my fitness level back to where it was. So keep plugging its all worth it.

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@danab

So true on the loss of muscle mass i celebrate 2 years today and i do work out 5 days a week but it has been a long road getting my fitness level back to where it was. So keep plugging its all worth it.

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@danab, Happy Transplant Anniversary! I hope that you had an enjoyable day. Did you do anything special?

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@rosemarya

@danab, Happy Transplant Anniversary! I hope that you had an enjoyable day. Did you do anything special?

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Thanks Rosemary, i had a beautiful day went to Church and was congraulated by all the great people that stood by me with there prayers and comfort during those months in the hospital and after. It can't be said enough that a great support system is crucial to a successful transplant. Of course i give double thanks to my Wife and Primary Caregiver and all the great support from the Mayo Doctors, Nurses, aides, dietary, social workers and all the behind the scenes people involved. But top of my list is God who i feel was the sole reason i got a new Heart and i thank God for people who even during there loss donate there loved ones Organs. So my 2 year check-up is the 21st and i don't expect any issues. I also always try and stop by and see some of the Nurses on duty and check-in i usually see one or two i remember.

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@danab

Thanks Rosemary, i had a beautiful day went to Church and was congraulated by all the great people that stood by me with there prayers and comfort during those months in the hospital and after. It can't be said enough that a great support system is crucial to a successful transplant. Of course i give double thanks to my Wife and Primary Caregiver and all the great support from the Mayo Doctors, Nurses, aides, dietary, social workers and all the behind the scenes people involved. But top of my list is God who i feel was the sole reason i got a new Heart and i thank God for people who even during there loss donate there loved ones Organs. So my 2 year check-up is the 21st and i don't expect any issues. I also always try and stop by and see some of the Nurses on duty and check-in i usually see one or two i remember.

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@danab I feel the same way, there were so many people praying for me that I’m sure that must have been a huge help. It really is a miracle and a blessing to be well again.
JK

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