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  • Hello everyone again,

    My PFT level is 60% and it has been almost 6 months since transplant. My oxygen rate is 98-100% which makes me very confusing. It is so easy for me to breath and I don’t feel lack of oxygen. But because of the “PFT” levels, my doctor is worried it might is a rejection - maybe chronic. It made me very anxious since I am only 19. Does anyone think why this is happening? Any thoughts? 

  • Hello friends,

    I am post 5 months of double lung transplant. As I research about my medications, I get worried about the long term use of prednisone [steroid]. I know the level of dose will get lower as time goes by, but still worried. How much are you on? Is there anyone who stopped with steroids?

    • HI Ellen, I'm 11 years and 9 months out for a double lung TX.  Been on pred the whole time. Your body needs it.  My doc reduced the dose to from 10 to 7.5 mg but "everyone is different so what works for me may not work for you".  Just do what the doc says and live your life to the fullest.  Tomorrow will take care of itself.  RZ 

      • Thank you R_Z for your reply. Next week is my 6 months since surgery, so I was hoping my prednisone will go down. But, I guess it won’t happen due to my declining PFT levels. Hope evrything is well for you

    • Hi Eileen,

      I've been taking 5mg of Prednisone the past 10 years. Last year I was prescribed Fosamax, because of my DEXA scan showing obvious signs of bone loss. The doctor has credited this to the long-term use of prednisone. 

      • Thank you Amber for your reply. Hope everything goes well for you. Are you having any other side effects like moon face? Does it get better as time goes by? 

  • It’s you or the cat  which is most important ?

    that cat crap will kill you sorry but again you or the cat goes.  I vote the critter 

  • I'm a recent single lung transplant (December 7, 2017) and am doing very well. Because I live alone, I have moved in with my sister and her family since being released. I've been approved to go home but am not permitted to scoop or clean my cat's litter box,  Did any other lung transplants have this issue and how did you solve the situation.  She's been with me for 18 years, so please don't suggest giving her away.

    Thank you




  • Hi Lung Tx friends,

    I'm reaching out after having my one year post op BLT consult yesterday. Was informed my kidneys are battle weary so to speak and at stage 3. That being the case, should I have expected such a blow to my non-tranplanted kidneys? Not that it would have changed my mind but are any of you lung tx peeps also dealing or have dealt with kidney issues?

    I'm now interested in all that I can do to better maintain my kidney's health.

    Your ideas and suggestions are more than welcomed.



    • Mark, I'm curious what your docs are recommending.  Did you get a second opinion?

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