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  • Hello

    I am here on behalf of my father who had a double lung transplant July 15th, 2018.  He’s having a tough time... infection, rejection, c-diff. He is so dizzy, loss of appetite, weak. My dad is losing hope and it’s so concerning.  Has anyone experienced difficulties who could offer words of advice?  I would be so appreciative. Thank you in advance.


    • Annie, it may take a while for the docs to work out the meds. Sometimes a year or so. Expect changes in meds and responses to them during the process and be patient. It's a process of trial and elimination since we all respond to meds differently.  Hang in there and keep praying.      

  • Hello Friends,

    I am enjoying a nice health uptick at 17 months post-op. Started pool arobics, bike riding and power walking. Doing wonders to get up and get moving. Pushing back against the Meds energy depleting side effects. Hoping to stave off my next bug as long as I can. I have a gift for you brother and sister Transplant Warriors but you have to email a mailing address to me at Details on my Tumblr blog @ #ProclaimYourVictory #TransplantWarrior #MiracleInside

  • 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 

    • 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. 

  • 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.



    • Hi Mark,

         My kidneys are also in stage three. I am 1 year and 9 months or so out. I'm # 495.

      I'm looking for a Kidney specialist closer to home. My doc in Phoenix is great and monitors me closely but I try to be proactive when it comes to my health and I'm living in upstate NY right now so it makes it harder on my Arizona health care professionl.

         Be well,


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