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  • 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.



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

      • Sorry for the delay with my answer. I did follow up with a Renal Specialist who is now monitoring my kidney health. As I learned, the main culprit is the Prograf. Can't stop taking it so the maintenance effort will be to find that sweet spot where my prograf level keeps my lungs working and causes minimal kidney issues.

  • Hello everyone I’m new to this society! 

    I had a double lung transplant on September 2017 due to pulmonary hypertension. Nowadays I am having some depression because all of my hair is falling out, getting bald at age 19.. - I’m taking prograf, prednisone, and azathioprine for immunosuppression medicines.

    Does anyone have this experience? Will it grow out eventually? How did you manage this problem? I am crying every night after I take a shower... 

    Please give me some of your experiences with it. Thank you so much 

    • You can thank Prograf for the hair thinning/loss. After almost two decades taking it,(for Kidney Tx,) my hair, whatever I have left, is baby fine and all but invisible.  Many have found success treating this with Biotin and Keratin-based hair products.  The level of loss tapers off after a few months or when your dose lowers.

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