Heart Transplant: what are the first 6-8 weeks after hospital like?

Posted by nala1 @nala1, May 5 6:40am

Hello! My husband got a heart transplant 2 weeks ago. We're hoping he'll be coming home from the hospital soon. My question is what do the first 6-8 weeks look like on the day to day? We understand the discharge instructions, importance of taking medications, going to all appointments, dietary restrictions, etc. Can you help us picture what typical days look like? What are some challenges we may run into that aren't covered by the discharge planner? And any advice for us as we enter this next phase of recovery?

My hubby is 52 years old and was fortunate to be active until his surgery. He is looking forward to safely getting back to hiking, playing pickleball and other hobbies. Thank you!

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chickytina | @chickytina | May 5 8:34am

Congratulations on your husband's transplant. I had a double lung transplant 4 years ago today. The first week I still had to go back to the hospital for appointments. I also had therapy and a visiting nurse come in (they didn't allow therapy if you didn't have the nurse come in). There will be a list of things that he will not be allowed to eat. The best thing for me was to get out and walk. With the weather getting better this is a great time to be able to get outside and walk. I slowly worked up how much I was able to walk though. These things I would believe would be the same for your husband. I am not sure about heart transplants in particular though.

jackiez | @jackiez | May 6 6:00am

Congratulations to your husband! I was 54 when I received my heart double lung transplant. When I was still in Rochester and going to respiratory therapy (PT), my therapist said that since I was retired my new job was to stay fit. That really resonated with me. Do what you can to control the things you can-exercise, eat healthy, get rest (your body has a lot of repairing to do).
The meds affect everyone differently…good and bad. Talk with your transplant coordinator if you can’t tolerate a med, there are often alternative choices.
Everyone has such different post transplant experiences. So it’s hard to generalize. I am fortunate to be very active and enjoying life to the fullest. I just passed 5 years. I have only had one bout of issues with drug toxicity to my lungs that required me to travel to Mayo monthly for 6 months as we worked to transition to a different med.
Everyone has ups and downs in their journey.
Good luck and enjoy this new lease on life!

craigcraig | @craigcraig | May 6 6:38am

Cool, cool, cool. Very happy for your husbands successful transplant. I "only" had a liver transplant, not a heart transplant. Just guessing but as life changing as that was it would be less than a heart transplant ? But you say you are hoping to go home soon after two weeks ? Mayo had me stay in AZ for a full 2 months and my wife and I had to beg and plead for them to release me at that. The extended stay hotel we stayed at had 5 other liver transplant patients there at the same time and 3 of the other 5 were there 2 months also. One was more than that and one less (my wife is on a text thread with the wives/caregivers to this day). For those 2 months in AZ it was short walks , some days a short trip to a grocery store or a restaurant (fully masked of course) and that was about it. It was very stressful for my caregiver wife. I was on such a high dosage of TAC I had bad headaches every day. I am late 60s and was not allowed to return to my long walks with my golden retriever for a couple of months after we got back. But it all was so very worth it. A difficult time but has paid huge dividends. Best of luck. (-----:

nala1 | @nala1 | May 7 9:41am

Just wanted to share the exciting update that yesterday my hubby was discharged! We had a good first night and are hoping to settle into a routine soon. We live just 15 minutes from the hospital, I'm grateful that follow up care will be simpler for us. Our daughter is in high school so it's a blessing that we don't need to travel. Please keep the advice and suggestions coming, we appreciate the support! I also saw that these members were tagged on previous questions since they've had a heart transplant so I thought I'd add them. Thank you!

@estrada53 @danab @scottij, @glinda

Dana, Volunteer Mentor | @danab | 22 hours ago

In reply to @nala1 "Just wanted to share the exciting update that yesterday my hubby was discharged! We had a..." + (show)

@nala1 Awesome, Welcome to the very exclusive club of Heart Transplant Patients So it's been a couple of weeks and I think for me the biggest change was the fear of not being in the Hospital. A bit nervous at first but soon it became a routine. I found doing Cardiac Rehab helped a lot to gain confidence that I could lead a normal life without worries. Is He planning on attending an outpatient program at some point. I know that the first few weeks you'll probably be up at the Hospital for checkups anyway. I remember one thing I looked forward to was driving again. I think that was about 6 weeks as long as your off of pain meds. So any questions I'm sure we can help answer.