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Heart transplant recovery

Hello, I received a heart transplant on April 5, 2017. Initially I thought my recovery was going pretty well but in the last couple of months I have regressed. Most days I have barely enough energy to leave the house. My mind is fuzzy and generally feel awful. Any exercise is out of the question because even a short walk wears me out. Transplant team says the heart is doing fine and really do not have an answer for why I am feeling so poorly.

They have reduced the dosages of my medications about as much as they can. One mg prograf twice a day. Are others having as much difficulty a year out as I am? It is really wearing on me mentally. Any comments would be welcomed. Thanks.

Merrill

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Replies

  • Hello Everyone,

    You resume driving a car when your sternum, or breastbone, is fully healed, which takes approximately six weeks. You may return to work after two to three months after the transplant surgery. It generally takes three to six months to fully recover from heart transplant surgery.

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  • Hello Merrill,

    I was one year out last Sun. 3-11. I agree with several others the side effects from meds are often the culprit. I have struggled with fatigue since day one.  My O2  saturation did not increase as much as anticipated. I stayed around 92-93. I was put into a sleep study and now use a CPAP. Again I was told I would feel much differently in 6-8 weeks. I don’t.

    Other than being tired I have done extremely well recovering. My doctors tell me regularly I ha e exceeded expectations. I don’t feel like it though.

    Have you had your annual exam yet? I passed e everything with flying colors and scores were above optimal. Until we did biopsy/IVUS test. The assumption is I have CAV, which concontibutes to fatigue. My cholesterol is 109 w with HDL of 63. Yet I have 50% blockage in my LAD. Protocol is check LAD, not other arteries. I’ll also mention my native arteries were clean, no plaque.Now I am taking double immusurpressents until Rapamune levels reach a point we can discontinue cell crept. I feel the most run down I have ever.....but it’s not permanent, so I can deal with it.

    I need to ask others if they are living with vasculopathy. In the last few elks I ha e gotten to where I really feel run down. Still make myself walk 3 miles daily and ride my bike 6-8 miles a week. Try my best to stay positive which I think helps tremendously at least in my case.

    I still take 5 mg  prograft.

    It is helpful to know I am not by myself.

    Best of luck. Please over look any typos, I am visually impaired as well.

     

     

  • I've had a heart transplant for 3 years and I've gone through similar phases. Usually it happens during winter time because of the lack of sun. Calcium with Vitamin D helped me pull through. 

    There were also irregular things that also affected me like when I had to get my gallbladder removed and when my tonsils were getting enlarged and they had to be removed but those things just happened last year and were not a regular thing. 

    Most of the time you're right, it is caused by the anti-rejection meds. But there's not much that you can do about them unfortunately. I've been at a dose of 0.5mg of tacrolimus twice a day and it still happened. 

    • Yes your rt the immunosuppressive meds like mycophenolate screw up you sleep but most of all no matter how great I feel I stilll hit a period in everyday that my body gets this exhausted feeling and I have to lay down for a bit. I never take a nap but rest.  Seems to be the norm it sounds like from most people. 

  • Hi I’m Danny and I’m 5 yrs post transplant and you sound like me!! It literally took me 3.5 yrs to recover enough to even start exercise. I felt like I had no energy and week when I over exerted myself. I finally in my head had enough and forced myself whether I liked it or not to eat a plant based low sodium diet and exercise. My whole life began changing before I knew it. It was weird I never have had rejection or anything but my body finally started doing its thing when I forced it to get into a routine. In the last year and a half I got back to completely normal and can do anything now. I don’t know your lifestyle but it’s not difficult like I thought to eat correctly and that seemed to make a gigantic difference. Get rid of processed food and bad carbs. It’s like feeding your new car bad gas! Force yourself to do at least what you can excercise wise and I’m telling you that you can do it. You will feel better. Recovery isn’t rainbows and sunshine like you expect. It’s a long process for some like you and I but you can do it. Good luck

    • You gave me hope I needed! I am one year out and struggling. I eat well, walk regularly about 3 miles daily, and ride my bike. Maybe my body just needs more time. 

      Thank you for sharing.

       

       

       

       

       

       

      • You are doing extremely well. Good for you. I think you should give yourself a big pat on the back and just be patient.  I was walking 1.5 miles 3 days a week 3 weeks after release and thought I was off to a good start. I wish I knew what has happened lately. Good lick.

  • Hi Merrill,

    I had a heart transplant in January of 2017, and am experiencing some of the same symptoms you are. I'm also getting the same answers (or lack thereof) from my transplant team. I initially felt I was making pretty good progress, but about 6 months ago began to be bothered by increased difficulty exercising, leg pain and general fatigue. My only suggestion would be to try as hard as possible not to let it get you down, and to keep trying to exercise. I suspect it's related to the medications - you're, luckily, on a very low dose of Tacro - I currently take 8mg daily.You may also want to consider getting a consult for depression. In my opinion, the hardest part of a transplant is living your life in 12 hour cycles, always having to boil things down to "don't forget to take your meds." Well, that and the maddening lack of answers from the doctors.And the constant fear/concern about an infection/cold/rejection... You get the idea, it's a lot and it's overwhelming at time. 

     

    Best of Luck,

    Andy

    • Thank you Andy. It is really good to know I am not the only one. I wish you were doing better but I am encouraged by your comments. Best of luck to you.

  • Merrill, have you been tested for CMV? That manifests itself in a number of ways. Also don't rule out an allergy of some sort. I had a heart transplant almost 9 years ago. I've had periods similar to yours, but maybe not as long lasting. Good luck 

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