I am a 26 year old male who just underwent his fourth open heart surgery, consisting of a full heart transplant.  A little background, after 2 successful heart surgeries several years ago, I developed bacterial endocarditis and as a result my heart was completely destroyed beyond repair.  Fast forward 2 years and my EF had dropped to less than 10% and I was in the late stages of severe heart failure.  I spent that last 6 months on the transplant list but miraculously received my new heart last Friday.  I am so grateful for the opportunity at a new life but have had a really hard time coping with the side effects and just my general new "feeling"

As far as my symptoms, ever since my transplant, they seem to be getting worse.  I have almost constant terrible headaches, aches, chills, sweats, my neck, chest, and back hurt, and insomnia.  All of these side effects were ones which were explained to be side effects of the medications I am on (Prednisone, cellcept, prograf, etc.) but I am also having extremely hard times with daily tasks.  My hands have gotten so shaky that I am unable to hold a pen or do anything with my hands really besides type.  I also get terrible "White-out" spouts when I stand up and walk more than 10 seconds (my BP is completely normal).  I feel like instead of things going in a good direction, I am merely getting worse everyday. My doctors have assured me that all of this is normal but I don't see how I can be feeling worse when I should feel better.

Just looking for anyone with similar experiences and symptoms and seeing if this is normal and I should start to accept this as my new feeling on life.  I know i'm only a week out but as previously stated, I feel worse everyday and am getting very discouraged.  

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  • Now you were about to die, that's not encouraging, then you've got a heart and the feeling must be just wonderful but that's major surgery and a huge stress for your body.

    The longer the surgery takes the higher the exposure to anesthesia, that's take a while to fade off and depends on the patients. You've got a heart, it requires strong medication initially and people reacts to it. The immune sups you got before surgeries (those which ensure there won't be much trouble initially are as strong as it can get and have side effects and those won't go away in only one week.

    Prednisone saves our lives, that's a lot more true for you than it is for me (kidney patient, small rejection, a ton of cortisone to stop it) but it has it own little dear side effects crawling up our backs. It sucks for a while but then we have a life, you need to be patient on that front. I'm still sleeping less than three hours a day, sustaining heavy tachycardia and feeling murderous at times.

    Then with everything coming from nervousness and headaches, insomnia and friends (pred/cortisone) shakiness (prograf but it could be cortisone too) neck chest and back pain (that I'd hang on the surgery you know, it happened to me). You weren't really running around before surgery and that has consequences and the body needs more than a week to adjust.

    Ask your transplant team, tell them how you feel and the challenges you face on daily bases, their goal is to get you as healthy and functional as possible the fastest, and that's your goal too so you are in this together but they need feedback to adjust your therapy.

    Nobody expects you to take it slow you know, after all been through and being a young guy with a new chance at life but as you see your body is clearly telling you "I need time to get over this".

    So in time you'll get pass the hardest part and go out there living, hang on, you already show your strength and now you'll get your patience test :D

    Hugs, 

    Luce

  • Hi Andres, I don't know how much help I can be but I wanted to message you any way. I am 25 and am about 2 months post double lung transplant. I am taking the same meds as you. I to feel like I'm not sure if I'm improving or just slowly getting worse every day. I have shakes which I believe is from the prograf and I'm on 60mg of prednisone because I have a cough. The meds have destroyed my appetite made me moody and slowed down my digestion very much. It's hard because I feel so blessed and cursed at the same time. I just want to get back to somewhat normal. It's great for me to not need to carry around oxygen 24/7 like I use to but my body still has a lot of work to do to recover. For the both of us I think we need to give it time. Keep focusing on staying healthy and doing little things that we enjoy and try not to get to stressed over things we can't control. I wish you the best of health and happiness. Take care.

    John
  • Don't get discouraged. It will take  weeks of adjusting the meds to get them right and a lot of what you are feeling are caused by the medications. Things will get better I promise. It can be tough till they get the meds where they need to be but they will it's just everyone reacts differently and they have to figure out what works for you. Hang in there and just ve grateful you are post transplant and headed in the right direction even if it doesn't eel like it right now.

     

  • Hello Anders, as everyone else has stated your side effects is completely normal and everything will be alright. I celebrated my 13th year on Sept 24, so hang in there my friend, you're in good hands!

    Cecil
  • Hi there Anders. Eleven plus years out (5/1/2001) I was on Prograf in the begining. I also had hand tremors, severe headaches, difficulty breathing, after nearly two years of that I am now on Cellcept.
    That being said, I presented with a fever, chills, weakness, and a couple other symptoms about two weeks after my txp. I was rushed to the hospital, and admitted. Blood cultures were started, and a few days later learned that I had MRSA infection. It started a while chain reaction of illness, and injuries that has left me disabled.
    I am not saying any of these things is what is going on with you, but please give it time. Keep in contact with your team. Don't ignore anything you feel unsure of.
    Your body was already weakened before your txp. Add to that the trauma of txp surgery, and you have the potential for any number of side effects. Everyone being different, they can only observe, test, and treat the combination of your specific symptoms. Medicine is not an exact science so it will take a little time to figure it all out. Thanks to your "new heart" you probably have that time now.
    Always question your team if there's something you don't understand, and always tell them when there's something new going on, or you don't think a treatment is working.
    Jean Snell
  • Hi Anders, how are you doing?  It has been 7 or 8 months post transplant.  How are you feeling?  Are your symptoms getting any better?  Like everyone says it will take time.  The further you get away from your transplant date the better everything will get I promise you.  I had a heart transplant back on May 11th, 2010.  My first year was rough, but as the months went by things got better as they will for you.  Take care of that new heart of yours and have a very Happy Thanksgiving.  Patricia

  • Hi Anders. I too was on Prograf after my tx. The reason I am now on Cellcept instead is because my tx team determined that it was the most probable cause of some of the very things you are having. It did not make everything better, but some like the hand tremors, and frequency of headaches lessened. Just a thought. Also remember you are now putting new drugs into your body that try to undo what your body does naturally, as well as the fact that you did just have a very major surgical trauma. Stay calm, and always discuss these things with your team. If I hadn't told them about all those things, I might still have no relief from the pesky side effects. Hope your system calms down soon. Jean
  • Hey Anders,

    I also experienced many of the things you described. As the others have commented, these effects will subside over time and you will notice them go away. Challenges may seem more daunting than you want them to be but they don't compare to a transplant and you conquered that. My transplant was 25 years ago in Houston at the Texas Heart Institute. Progress might be measured on a small scale for now but tackle on a daily basis.The days become weeks, months, years, and decades. In my first annual newspaper interview, I commented "Everyday is the best day of my life" and that still holds true today. Keep positive my friend.

  •      Hey there Anders,  Congratulations on your new heart. My name is Marc and I had a heart transplant in 1989 at Stanford hospital. All the symptoms you describe are normal, the headaches, shakiness, etc. will all dissipate with time. They may lower the doses of some meds but you will be amazed at how your body can overcome the side effects with time. I know you feel week and listless but that is just your body recovering. Take it slow and listen to the docs. 

    • Anders I agree it will all pass with time ! But sorry I had to laugh at your statment "Full heart Transplant" Had someone say that to me one time and I laughed in his face ! I said what I am only going to get half of the heart ??WTF ! I am 14 years post heart TXp myself doing great and Loving LIFE every day !  Dont worry al will pass ! Dont give up ! Keep fighting !

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