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  • Hi all, I'm 4 years 11 months out from my double lung transplant, I spent November in icu due to a cold and back in again in Jan/feb for 3 weeks. I haven't been out anywhere since except for the doctors. I've been having a lot of issues lately meds getting changed and new ones added. Anyway, how's everyone handling this covid19 bug? Just asking.

  • Please watch this and pass it on,it may save a life.God Bless.

    https://youtu.be/RssdiSvFnS0

  • 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

    • Hi Annie, I've gone through a lot of the issues your father is, I haven't had any rejection so far. I've had a number of infections in my lungs, got them cleared up, c-diff is from too many antibiotics, dizziness could be from low blood pressure, they put me on medication to raise my blood pressure pretty high. Doctors did the lying, sitting & standing tests on me, when standing my blood pressure would drop to as low as 59/40 sometimes I would get dizzy, sometimes I would black out. Something to look into. I wish your father well.

      Tim

    • This was posted a year ago.  I hope your father is doing better Annie.  I had  a bi-lateral transplant June 2, 2015.  It was rough at times.  I would get strong and have issues but kept on going. the meds cause problems, and the adjustmens are made continuously, until they find what works for you.  I just always realized I had to keep my stength.  God bless you both.  Would love to know how he doing now.

       

      Evie 

    • 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 Gilbuddy453@gmail.com. Details on my Tumblr blog @ www.heronotzeroproductions.com. #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. 

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