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Hope for longevity for us Lung Transplant folks.

So I live in Naperville and there is an organization in town called "Organ Transplant Support".  OTS for short.  Google it if you like.  In addition to monthly meetings where very qualified presenters share info on transplants as well as social events, OTS also sends out a bi-monthly newsletter called "The Miracle Messenger" with transplant related info.  On pages 8 and 9 the latest issue it shows the names of two people that are celebrating their 19th anniversary of their lung transplant!  Yup 19 years!  So happy for them.  Just wanted to let you know.  Does anyone know of a person with more than 19 years post lung transplant?  If so please share the good news.   

I'm a new member to and think it's great.  

BTW, you can see my faith based transplant story that I posted two years ago if you go to YouTube and search for "Randy Z Story".      

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  • There is a lady in Houston who is 23 years post her name is Laurie and she is still going strong last time I talked to her at a gathering.

    Numerous people in Houston who range 8-15 years
  • I forgot to say my first double lung lasted ten years and I am going on my 11th years with my second double lung tx.  Recently, I had a series of lab tests which all came out really healthy. I managed to lower my A1c to 5.3 and my kidney numbers have always bee super healthy (liver too). 

    We all have something to be very grateful for!!

    I feel grateful for each day!!

  • That's fantastic Randy! You guys who get lung & heart Txs are the most inspirational of all!
    You guys remember BreathinSteven from Transplantbuddies? He once posted that a lung Tx only lasts 5 years on average! Is that still true?? Below is an article from 2012 that says only 55% of lung Tx patients live 5 years! Has it improved? Anyone know what happened to BreathinSteven? He had some of the best posts on Tx Buddies!
    • Hi Neal

      I've been around since those Buddies days. As far as I know, Steve is still with us, living in Chicago. Here's the thing about survival statistics; They count every person that died, no matter the cause. Heart attack, cancer, suicide etc...all figured in. It's not just the lungs going bad. I'm at almost 8 years, and I know at least three people that were there with me, and still are. I think survival has improved. Not sure what your organ was, but I hope you're still doing great.

      • That's good to hear Armand. BreathinSteven was such a catchy name! He was also one of the best posters and had some memorable posts at Buddies. I even exchanged PMs with him once or twice. My organ is kidney and I'm doing great. You know why Steven isn't over at this forum?? He loved to post at Buddies!
  • Wow!  Thank you so much for this, Randy.  I will go check both out.  I'm a new member to transplant friends, too.

  • Is this your wonderful story?

    • yes it is.  :)

    • Yeah, I saw that too so I'm sure that's it.
  • Hi Randall

    Welcome! Thank you for sharing your transplant organization OTS- I have heard of them and I am sure they would be pleased that you are sharing with us.  I know of many people who lived longer with their lungs post 19th years.

    There is also a great facebook group for lung transplant patients- several of them.

    I will look for your story

    Thank you so much!

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