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    • #17978
      Mark Koziol
      Keymaster

      One of the more prevalent side effects from lung transplantation is having trembling and shaking of your hands. When I awoke after my lung transplant I noticed shakiness in my hands. The shakiness felt like it was not under my control. My hands and fingers did not want to respond to the messages my brain was sending. This was frustrating. My hands felt swollen even though there weren’t any signs of this. I was in the intensive care unit (ICU) for several days after the surgery, and I didn’t need to do anything but relax.

      When I was moved to the transplant floor, the first thing I noticed was I could barely hold a writing utensil or text on a phone. The ordeal was frustrating to say the least. Writing was out of the question. My penmanship was something to be desired before the transplant, and now my printing was not legible. Eating was a disaster for the first couple of days. The task of moving food from my plate to my mouth was an awkward an inefficient task; especially since the first couple days I had a soft diet, mostly consisting of soup. Holding a phone was ok, but texting or navigating through websites was a difficult undertaking. The shakiness of my fingers and hands did not allow me to have any type of dexterity.

      I spoke to the doctors about this problem and unfortunately, hands shaking and trembling is a side effect of the group of medicines I am prescribed. They stated these symptoms would go away from 9 months to a year. In my particular case their estimation was correct. By 9 months the trembling and shakiness I had in my hands had subsided. I felt lucky because my symptoms were better with each passing day. When I go to clinic, I always observe and talk to other transplant patients and how they are recovering. I am always drawn to their hands. The trembling of the hands appears to be a side effect majority of the patients have. I am interested in how many others in our forum who have been through a transplant have encountered trembling and shaking as a side effect.

      Have you ever experienced tremors or other new symptoms/side effects after transplantation, medication changes, etc? If so, how did you adjust?

      Sometimes, symptoms and/or side effects can be permanent; what are strategies that you have used to cope with these permanent changes?

      Have you ever had to change your daily routine due to medication side effects or post-transplantation side effects?

       

    • #18007
      Eileen Owen
      Participant

      I had my lung transplant 11 months ago and I too had tremors in my hands and also felt that my legs were shaky. I had the exact same symptoms as you reported and had to ask family members to call me and not to text as it was too frustrating trying to text back. One of my doctors prescribed clonezepam .5 mg 1/2 tablet twice a day. He said I might find myself getting too tired from the medicine so it would be alright to cut it down to 1x a day, which I did when I felt like I was sleeping too much. I was worried because I had nice handwriting and I thought I had lost that, but it has come back and I am no longer on the clonezepam. I have noticed though that when I start to get chilled, I shiver and when I shiver, my hands will tremor again. I think there is still a slight tremor, but not noticeable most of the time.     My breathing was also off and that’s the best way I can explain it. When I got up to walk anywhere, I felt like I was still breathing heavy and yet my oxygen levels were fine. That cleared up about a month ago during a vacation to Florida.

      • #18015
        Mark Koziol
        Keymaster

        Hello Eileen, thank you for commenting on our topic. I am happy that you are doing well after your transplant. I know there were a couple of bumps in the road but you seem to be doing better. Makes me happy when I hear of patients who are doing well. Your suggestion of the clonezepam will help our readers who are going through shakiness and hand trembling.

    • #25252
      RJ
      Participant

      Thank you Mark and Eileen for sharing your experiences.

      I had my single lung transplant the end of May and was dismayed by the tremors in both hands as well as the loss of my voice. Has anyone else experienced problems with their vocal chords? If so, what did you do?? I am also experiencing foggy memory. These side effects are very alarming.

    • #25253
      Mark Koziol
      Keymaster

      Hello RJ, congrats on your transplant. I hope you are recovering nicely other than what you have described. Hopefully these tremors will soon pass. I did not experience any problems with my vocal chords. I hope you recover from these ailments soon. I did have a little problem with short term memory, mostly while speaking. Its not fun when your wife has to tell you to use your words. Best wishes, Mark.

    • #25282
      Dennis Rowe
      Participant

      I too had tremors after my bi-lateral transplant.  They were mostly prevalent in my hands, but sometimes most of my body would shake!  The tremors happened quite frequently, and finally got less and less.

      I got very frustrated during the lengthy stay I had in the ICU!  I had a tracheotomy so the only way I could communicate was when they handed me a pad and pencil.  My printing was unreadable, and I got very frustrated when no one could read what I was trying to say!  I wasn’t very nice to them, and had no idea why! A lot of hallucinating took place, but it finally resolved itself…

    • #25285
      Mark Koziol
      Keymaster

      Hello Dennis, thank you for sharing. Tremors are a horrible side effect to deal with after a major surgery while you are recovering. I am relieved they don’t usually last. I was fortunate to not have any hallucinations. Sorry you had to endure this. Thanks again and breathe easy, Mark.

    • #25316
      Les Viegas
      Participant

      Generally, tremors are a side effect of tacrolimus.  The tremors begin to subside over time as your body adjusts to the dosage levels, or the levels are reduced to a more steady state. I know because I experienced severe tremors after my transplant in 2014 and am mostly recovered now. Kidney transplant patients have the same experiences.

    • #25318

      Thanks for sharing Les! I’m sure many will benefit from hearing that your tremors have subsided over time. Congratulations on your 2014 transplant – so glad to hear you’re doing well 🙂
      Char.

    • #25493
      Boshra
      Participant

      Hi

      hoping you will become better every day

      I did not do transplant

      but I need you please to advice where to go to do it

      I am not from the USA but willing to travel if there is any opportunity

      have a great day

    • #25494
      Mark Koziol
      Keymaster

      Hello Boshra, thank you for reading and engaging in discussion. There is website operated by funds from the federal government. It monitors all the organ transplant centers in the USA. Here is the link http://www.srtr.org. The website is a point and click operation and fairly easy to use. The site provides a lot of information. Have a good day, Mark.

    • #25504
      Robert Obrien
      Participant

      @mark-koziol

      Mark, I had a bi-lateral in June and my situation is the mirror image of yours. Tacorlimus as well as Prednisone are the culprits but thanks to you and your empirical data, I now know what to expect.  Thanks!

       

    • #25506
      Mark Koziol
      Keymaster

      Hello Robert, first of all congratulations on receiving the gift of life. It’s a wonderful thing to hear. I hope you are on the downside of the tremors. Hopefully they less noticeable to you. I wish you continued success in your recovery. Please stay as active as your body permits and of course follow doctors orders. Thank you for reading and engaging in our forum. Mark

    • #25524
      David Ota
      Participant

      Hi guys

      The title caught my eye.  I’m 4+ years post transplant (May 2016) and I recall 20 months post, back at work on a travel assignment.  My hands were shaking so bad I could not use a computer touch pad.  I had to get a coworker to ‘help’ put my cursor on an excel spreadsheet cell.   How embarrassing.  I started carrying a mouse with me.  I did not try and address the tremors with more or less meds, just tried to ignore it.  My voice is more rough, scratchy and hoarse now.  I think something was damaged during surgery.  I never inquired, I thought it would get better.  It did, but I still sound like an old man (luckily, I am an old man). My tacrolimus has steadily been decreased and the tremors have gotten better.  I’m not sure of the cause and effect there, but I can use a touch pad these days.  I still always carry a mouse.

      To answer Mark’s question, my entire life has changed due to the transplant.  I’ve moved states to be closer to the transplant center, I’ve lost 20+ lbs because I cannot eat the same ways as before the transplant, I avoid the sun like a vampire due to the instance of skin cancer on these meds.  I avoid crowds, and not just because I’m a crabby old man and Covid-19 made it acceptable.  I carry hand sanitizer in my truck, on my desk, when I leave the house.  I do not work on my car or yard because of how fast I get tired.  I cope one day at a time.  I knew my life was going to change after the transplant.  It’s like having kids.  I knew my life as I knew it was over.  Now, like then I try and get through one day at a time and try and plan for a future that is so nebulous that my plans feels more like crossing my fingers and hoping than a well thought out guide.  It’s still fun, tremors and all.

    • #25525
      Mark Koziol
      Keymaster

      Hello David, nice to hear from you. You have an amazing attitude. I think you sum everything up in your last sentence. This ride is fun and like you I don’t want this ride to end. Thank you for sharing your story. Your comments are always insightful. Stay in touch and take care, Mark.

    • #25554
      RJ
      Participant

      @mark-koziol

      It is so helpful to hear of how each of you has dealt with life post transplant.

      David, I feel exactly like you, terrified to be out in the sun, in the garden or pick up anything more than 10 lbs, even my grandbaby! This is the new reality of my life and I am hoping after a year or two things will get better. However, my voice is not improving and last week after more testing I was informed that during the transplant I have paralysis in my vocal chords that is not going to resolve itself.

      I am exploring my treatment options for the paralysis now. Has anyone had this problem and if so, did it get resolved and  what did you do?  Please do share.

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