Pulmonary Fibrosis News Forums Forums Lung Transplantation Unknown facts about lung transplants

  • Unknown facts about lung transplants

    Posted by Charlene Marshall on June 19, 2023 at 6:00 pm

    In my experience, people are always curious to hear about organ transplants. They seem particularly interested in how to qualify for a lung transplant, the frequency of the procedure, and how successful the operation is when speaking with me. There are also a lot of assumptions about this life-altering surgery; the biggest one is the assumption that once you receive a lung transplant you’re cured and life is “smooth sailing” after that. That’s certainly a myth and something I often try to clarify when I talk to people about lung transplantation.

    In addition to myths, there seem to be a lot of unknown facts about the limitations of lung transplant recipients following the procedure. Just recently, I was talking to someone who couldn’t believe that gardening, because of the bacteria in soil, is off limits for people who receive a lung transplant, along with probiotics (including kombucha). It’s always interesting to bring up the topic of lung transplant around people who’ve never had to think about it and share information to make them more knowledgeable.

    What are some of the other unknown facts about lung transplantation you’ve shared with others?

    As a patient with IPF, who needs or has received a lung transplant, do you take it upon yourself to educate others about the process? 

    Elle replied 8 months, 1 week ago 3 Members · 4 Replies
  • 4 Replies
  • colin-o-driscoll

    Member
    June 20, 2023 at 6:34 am

    Yes, people tend to think an organ transplant is like getting and fitting a spare part for your car.

    There is an enormous difference. For the rest of your life, barring advances in medical science, your immune system is reduced to a basic level which provides a first line of defence, but that’s all.

    So besides immunosuppression you need to take a cocktail of drugs to fight off bacterial, fungal and viral infections and other drugs to counter the side effects of the immunosuppressants, such as osteoporosis, diabetes, vascular problems.

    There are restrictions on what can eat and what ye an do, one of them being gardening.

    Beyond that, you are more vulnerable to cancers, especially skin cancer, and eye problems.

    But at the end of the day, you are still alive and your overall queof life is greatly improved – no more gasping for breath.

     

  • jillgerber4gmail-com

    Member
    June 21, 2023 at 8:47 am

    My husband is 4 weeks post transplant and the lungs are doing great, and his breathing is wonderful. He loves not having to drag oxygen with him 24/7. He’s having a tough time on tube feedings since intubation during and post surgery injured his swallowing reflex, but hopefully he will get off the feeding tube this week.  He’s getting stronger and adjusting to the meds and we’re optimistic his quality of life will continue to improve and be greater than pre-transplant.  We have received much more nuanced information about restrictions. For one thing, we were told that as long as he wears a well fitted N95, KN 94 or K95 mask, he can dig in the soil. When doing other gardening, such as pruning, he’s ok without a mask, unless there is a lot of pollen or dust in the air, in which case he should wear a mask or stay inside. There are more restrictions the first year, and especially the first few months, than there will be after the first year. For instance, he needs to not eat fresh vegetables at a restaurant at least for the first six months, maybe forever, certainly never at a fast food restaurant. We were told to never eat sliced meat from a deli counter, and only hot meat from a restaurant..like get a sandwich grilled, for instance. We’ve been masking in public for three years now anyway, and barely notice it anymore, we only get together with friends when everyone is sure they’re not sick, and not eating in restaurants anyway since covid. These restrictions all seem pretty reasonable to us, and we’re not daunted by integrating them into our lives. We were able to integrate all the restrictions that came with him wearing oxygen and being on ofev and not being able to fly, and being fatigued etc, and I’m sure we’ll adjust to all these, as well.  I think these will impact the quality of his life much less than all he was dealing with pre transplant.

    • colin-o-driscoll

      Member
      June 22, 2023 at 9:15 am

      Yes, I mentioned the restrictions simply for patients who are not yet transplanted. I entirely agree that the restrictions are worth the improvement in life quality.

      As for differing advice, different health providers have different views. It’s a matter of subjective judgement. For example, one consultant told me to give up using turmeric in my food because of interactions with one of the immunosuppressants. Another said don’t worry. The fear was based on one case where someone was taking 25 teaspoons of turmeric powder a day and ended up in an ER (!)

      • Elle

        Member
        June 22, 2023 at 9:41 pm

        Hello everyone, I would like to thank you everyone for all the support. Everyone is super informative and kind and being a single woman with no type of medical support, or family support, I just wanted to say thank you first. I am feeling worse every day, it is a battle for me to find a doctor that has empathy in the horrible state of New Jersey. I did receive my Oxygen, from Inogen. I don’t know if others are also using the same type of Oxygen. But, I cannoit even get on the waiting list because, I only have Medicaid, I do not have Medicare. So, my treatment has been only the Oxygen and the Promethazine DM. No pulmonologist gives cough syrup here, The girls at my doctor’s office or rather the medical staff are horrendous. They called Lincare maybe once and went on to send me a horrible e-mail saying that they wash their hands. So all of this basically “abuse,” does get to me. I am living at my dad’s who rents from his sister who is more evil then the devil himself. I caught Pulmonary Fibrosis from second hand smoke from the violent young woman that lived upstairs, For four and a half years , I had to put up with her verbally abusing me, and to the point of entering my home and sucker punched me in my right eye. The cops did absolutely nothing to help me. So, a couple days ago, I was thinking what if I got that part that is scarred(dead) as, I call it remove. Can, I give myself more time to live being that, I am only middle aged. So this was very intereting to read. Again thank you for all the people that are suffering as I am , or even worse. It is so hurtful when people just do not get that there is no cure for this disease. And, I never thought, I would literally feel this sick. Last year exactly, I could at least go outside and buy my Vegan food or shop for women things at Marshalls. Now, even to take a shower is  a mission.

  • david-ota

    Member
    June 22, 2023 at 3:22 pm

    Hello Charlene

    7 years post transplant:

    1. No grapefruit (interacts with meds)

    2. No lakes (too much chance of waterborne infection)

    3. No Buffets (This may be my own restriction, buffets are just too horrible for me to think about now)

    4. No restaurant salads (unwashed vegetables)

    5. No water with fruit in it (Sliced lemons in your glass from a restaurant)

    I do eat sliced deli meat and cheeses, but that’s more about my weakness.  There may have been a restriction but I forget.

    My wife does the gardening and mows the grass now.

    Like all things, in a pinch, rules bend.

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