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Lung Transplant

Is there anyone in this group willing to answer questions from a newbie about lung transplants?  This is my second post, and not receiving any replies to my first, I want to make sure I am in the correct group.

Thank You

Brenda

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Replies

  • Brenda, I am a single lung transplant survivor, post 3 years and happy to try to help with any questions 

  • New question for you post lung transplant pals - can we take prebiotic with out harm to immunity issues? 

  • Hi Brenda

    I had a double lung transplant 2 year,s ago, i also had copd, mine was in England but i would be happy to answer any fear,s or question,s you may have the best i can :)

    • Hello Chris,

           Thank you for your reply.  I suppose my next questions would be mostly on the anti rejection meds, and rejection.  If the meds have such potent side effects, how do you know if it is a side effect or rejection?  Do all rejections eventually lead to another transplant or do they eventually stop. I had read that most all experience rejections within the first 90  days.  Can a transplant person get pneumonia like a regular person, or the flu, and

      I know you are suppose to wear a mask all the time, so other than staying home all the time, how can you protect your self from things like tthat other than the usual, mask and hand washing.  I guess what I am trying to say is, with no immune system at all, a person would have to wear a mask every time they went outside, or went to church, shopping, ect.

      You can not take vitamins to build up your immune system, oh well, my questions are way out there!!

      Thanks for all the replies.  There is so much I just do not understand and sometimes medical is not 100% honest with people.  It is not like you can return the lungs if you are not satisfied.  One man on here was having trouble "remembering to breathe" . I do not think he was a lung transplant, but that would be so scarry!!  Has that ever happened to any lung transplant people? 

      • Hi Brenda

        I had rejection 5 times in the 1st few month,s, when this happen,s you are put in to isolation ( a room by yourself) & doctor,s nurses, & only close family allowed have to wear mask,s. I was given intravenous steriods over a 24 hour period, The steroid,s bloat you out a bit, but by the next day i was feeling fine & much better. As i said ive had this done at least 5 time,s & my doc,s say rejection is nothing to worry about because it can be dealt with & is not a problem. Yes you can get pneumonia & the flu, i got pneumnia after a chest infection after a few days in hospital & antibiotic,s i was fine. You should get the flu jab every year it definatly help,s. I have never worn a mask the doctors just said stay away from crowded area,s & try to stay away from people who have cough,s & cold,s or anything else for that matter lol, that,s only in the 1st year, i can go anywhere now just had a great family reunion, & although i found it a bit tiring towards the end  i was fine.So be carefull but dont shut yourself away, you do get stronger as time goes by. My 1st year after the transplant was horrible i must admite i had rejection,s infection,s, kidney failier, & honestly thought i had done the wrong thing!! but this last year has been great a couple of minor cold,s but im getting stronger every day. Now that my medication has been sorted out & my body has got used to it all, its the best thing i have ever done, & now i just live a normal life with a trip back to hospital every 4 month,s or so to make sure everything is fine. I really hope i have helped to answer a couple of your question,s & made you feel a little better about it all. Feel free to ask anything you want & i will answer as best i can.  :) x

        • Thank you Chris,

             Your answer has helped me a lot.  I am already beginning to feel better about all this.  I know I do not HAVE to get the transplant, but I know I need it.  I am still going thru testing, today was a marathon of blood draws, ex rays, lung scans, dental, sonar grams, ect!!  And this is just the first of many I am told.  But each of you have helped me understand more, the good and the bad, and that is what I wanted..  Thank you again

          Brenda

  • Hi Brenda, I am careful around chemicals, smells, smoke etc. Feel that these aren't good for anyone. Most of your questions can be answered on the site or by your pre transplant team.

    One thing to tell you, exercise pre transplant (and post) is critical. You need to be as strong and healthy as possible.

    This decision is for you. I am grateful for every day that I wake up and breathe. Small price to pay for the return. Take care and best wishes.
    • Thank you Beth.

         Yes my team has me doing rehab because doctor said I am not strong enough. I don,t know that I will ever be as strong as they want me, but I am doing all I can to get that way.  I started all this late in life, but it is never to late I guess, and I have been told this exercise will continue after transplant.  I start next week on the blood work, sonargrams, ect.  My main hold up is my back pain after I exercise a few minutes or walk a few, it almost brings me down hurting s much.  But they know about it, so I guess it will hopefully get better. It just seems like I am on an express train going somewhere I do not know and every few minutes someone comes and does a test of some kind and tells me it will all be ok. Thanks for your reply.  I will keep learning and asking.

  • Thank you Hostess Ris'e and Beth for your answers.  I am going thru tests to get on the list for transplant, I have stage 4 copd, and my questions concern the differences if any.  With copd any irritant, fume, germ, ect. can cause a lung infection and lead to pneumonia, or just severe sob, which destroys more tissue.  Is it the same for transplants? Can I go to the beauty shop and get a perm, or be around barbeque or fireplace smoke, ect.  What are the restrictions?  I also want to know how likely it is the anti rejection meds will damage my kidneys, make me diabetic, or cause cancer?Are you able to travel and if so, how did it work out?  This is a new program I am in, they have only done 3 transplants, even tho they have done hundreds more during their careers, but things seem to be on the fast track here

    and I need someone to slow down and re assure me this decision is worth all the side effects, new diseases, and other hardships I may go thru.  In other words, I am on the fence scared to go either way.  I am 66. 

    Thank you for any answers

    Brenda

    • Brenda,

      Wow it appears you and I are in the same boat, same organ, same age, same concerns, and both in end stage! One more hurdle to jump and I think I will maked the list. What facility are you working with? I am with Shands in Gainesville, FL at the University of Florida. Dr. Baz and Team. I have not heard anything about a new program please enlighten me? Thanks

      Regards Patty

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