Lungs — TransplantLyfe


Awaiting lung transplant

KathyjTransplant Patient
Updated August 4, 2021 in Lungs

I am waiting for a single lung transplant. I keep hearing about ALL the meds I will be taking for life after the transplant. How have you all been with those medications ? I’m afraid I’ll have to live in a bubble is that true?

can someone give me some insight please. Thanks


1 - 7 of 7 Replies

  • AliEm14Expert
    Transplant Patient

    I'm liver transplant but I feel like a lot of drugs are similar between transplants. From my perspective a lot of how you react to the drugs depends on how sick you were before (not necessarily physically react but process being on them). I was really sick my entire life pre transplant and on so many medications so switching to immunosuppression meds actually gave me a ton of freedom back. I haven't noticed any insane side effects from the meds. I do have tacrolimus tremors, which is pretty common. Mine are mild, and once they stabilized my dose they lessened. In the beginning it's a bit of trial and error finding out what works for your specific body, so that's a little bit of a pain but once that's figured out I personal feel like it becomes less of a big deal.

    As for living in a bubble, I got transplanted right in the middle of Covid so I did live in a bubble for a few months. Now I don't feel like I'm in a bubble anymore. I work from home because I can and I choose to, not because i have to. When I do go out, I just wear a mask (currently) and sanitize my hands a lot.

    July 5, 2021
  • ChefAmandaTransplant Patient

    I am a heart transplant recipient but like @AliEm14 said a lot of the medications are the same. Honestly it just takes time to adjust. There will be side effects and medications you don’t like. It’s all about your outlook.

    As for the bubble… in the beginning you may feel like that but over time the restrictions aren’t as intense.

    July 6, 2021
  • bhameisterTransplant Patient

    I am almost a year and a half post liver transplant. Like state above, a lot of the medications are the same, but there will be some that might be different than someone like myself (as a liver transplant recipient). It may seem like a lot of medications at first, but doctors will try their best to either reduce the dose or try to keep the time frame minimal to taking some There were a few supplements I only took for a week after transplant. It might be different per person and the organ transplanted. I also did have side effects, Tac Tremors, but one thing I learned is to make sure to communicate that with your transplant team.

    I had my transplant right before Covid started. I worked from home for a year and am now back to work in the office. I am still taking all the precautions (masking up and washing hands). Try to enjoy the outdoors and it will help to not feel in such as a bubble (it helped for me).

    July 7, 2021
  • KathyjTransplant Patient

    Thank you all for your responses. Hearing from you (who have been through a transplant) makes me feel much better. Sometimes just reading about the side effects sounds much worse than it may be. I hope I do as well as all of you! Thank you

    July 11, 2021
  • rlmcguireCare Partner

    We're 8 years post double lung transplant. Taking several meds a day is a small price to pay to see great grand children born.

    September 8, 2022
  • ShelbycreatesTransplant Patient

    @Kathyj I had a kidney transplant 4 years ago. I went back to work at an elementary school a little over a year after my transplant (October 2019 to June 2020-with the shutdown in March)

    I made sure to wash my hands, sanitize, and pretty much never touch my face in public. And I didn’t get sick one time working there, even when teachers and half a class was out with illness.

    I have been hospitalized for weird illnesses (CMV and cryptosporidium) that are consequences of transplant meds, but we got these things righted and now I’m pretty much back to living life normally.

    I might shield more if it was just me, but I’ve got 4 kids (15, 12, 10, and 5) and we were all having a difficult time with isolation. They need to be in public and I’ve started being in public now that I’ve had the Evushield injection. 3/6 of my family members got COVID in June and I was able to avoid it then.

    The first year is the hardest, because they’re messing with your meds, but it gets better and more normal. Best wishes to you!!

    September 8, 2022
  • DonnyCTransplant Patient

    Late to the game here, but like all said, the meds are about the same. I am a lung guy. Only difference is typically the dosages between different organ types. Yep, for most it will be lifetime. You will quickly adjust. Side effects are unique for recipients. If a medication is giving you significant side effects, there are typically alternatives that your team my try instead. I had a couple shortly after transplant that were more of a nuisance than a real issue; they subsided after time and I don't have them anymore. Stay in this space and we'll all be happy to help you with this journey.

    September 25, 2022
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