Reese got a lung transplant

[Ratatosk]

Long time member of this site, Mom2RT recently posted on facebook that her 14-year-old son recently got a lung transplant. Those of us who've been on this site for awhile have watched Reese's progress. He was recently the rock start of the month on the following site:

http://letsrockcf.org/rock-star-of-the-month/

 

[Jane]

It is such wonderful news!

 

[mom2two]

wow, 14 years old. Science REALLY needs to figure out what makes his double delta f508 situation different from other ddf508's who make it much longer. Clearly there are mitigating factors/interactive genes which have not been ID'd. Orkambi works great for some, is seriously harmful to others-- why? There is so much we dont understand about CF. Blessings to you Reese.

 

[Imogene]

This is Reece's second lung transplant I think he had one at 7 or 8 years old...am I remembering correctly?
So happy for the family! Let' s pray this one lasts for a long time.
Salt and Light,
Jeanne

 

[Ratatosk]

I believe he had surgery several years ago, not a transplant, but to remove a very infected, diseased lung. So his transplant was a single rather than a double lung transplant.

 

[Ratatosk]

wow, 14 years old. Science REALLY needs to figure out what makes his double delta f508 situation different from other ddf508's who make it much longer. Clearly there are mitigating factors/interactive genes which have not been ID'd. Orkambi works great for some, is seriously harmful to others-- why? There is so much we dont understand about CF. Blessings to you Reese.

Unfortunately, it's the luck of the draw. You can do everything you're supposed to do in terms of treatments, meds and still have issues. Locally we had a 12 year old who had a double lung transplant a few years ago. Got a nasty mycobacterium infection, while in the hospital. Damage to his lungs was so severe, despite iv abx and treatments. Today he's back in school, was on the school hockey team, goes hunting....

 

[beautifulsoul]

FANTASTIC News!!

wow, 14 years old. Science REALLY needs to figure out what makes his double delta f508 situation different from other ddf508's who make it much longer. Clearly there are mitigating factors/interactive genes which have not been ID'd. Orkambi works great for some, is seriously harmful to others-- why? There is so much we dont understand about CF. Blessings to you Reese.

I had my transplant when I was 15. I'm not so sure it's a mutation issue. Everyone has transplants at all ages who have different mutations.