Cystic Fibrosis patient shares lung transplant story

POSTED: 2:42 AM Dec 24 2013   UPDATED: 10:29 PM Aug 09 2013
WILLIAMSTON, MARTIN COUNTY -

The 36th Annual NewsChannel 12 Cystic Fibrosis Telethon will feature a very personal story on Saturday.  Danyell Scott of Williamston underwent a double lung transplant exactly one year ago.

This is the transcript of her story, told to NewsChannel 12's Wes Goforth earlier this week:

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"So tell me about an average day for you--what do you do?  Oh, I get up around 9, 10 o'clock...take my meds first thing."

At 31 years old, Danyell Scott says she's alive again.  She made time with me this week, for a stroll alongside one of her favorite places-- the Roanoke River in her hometown of Williamston.

Danyell's new life began one year ago today--August 10th, 2012.   She underwent a double lung transplant at Duke University Medical Center:

"I got called in at 9:30 that night, telling me they had a set of possible lungs for me."

Around midnight, they took me back to the OR.  The surgery started about 4:00 in the morning and it ended 8 hours later, around 12 noon. "

The first year of her new life has been an adjustment.


"I don't have to do breathing treatments.   i no longer have to do chest routine any more.  the vest--i don't have to do any of that, which is kind of hard to put my head around because i did it for 31 years.  you know--religiously--every 4 hours while awake.  I'm very happy i don't have to do that anymore.

Oh, and about those pills first thing in the morning--there are 29 of them.  By the end of each day...she's taken 69 pills.  483 pills a week... to reduce the chance of infection, transplant rejection, and many, many other drugs to battle the CF that's still in the rest of her body.

Danyell's journey to this new life began the night she was born, 31 years ago:

"She had surgery when she was 24 hours old.  Of course, she was officially diagnosed at 3 months old."

And the grueling routine of treating...and living with cystic fibrosis began for a little red-haired girl and her family.

Danyell fought--she fought hard.  Graduated from Bear Grass High School in 2000 and Martin Community College in 2004.

For 12 years, she made the trek from Williamston to New Bern to sing at the cystic fibrosis telethon.

"I could tell the last couple of telethons you just weren't feeling very good at all.

" No, not at all."

" And of course, you were singing and that requires a lot of air.  Right?

"Yes it does, but I had learned to breathe around my problem, using as little bit of air as possible, taking as many breaths as possible. I had taught myself to do that through time."

Danyell was running out of air, and time, a year ago.  She waited for days on the transplant list.  Through agonizing nights, dozens of vials of blood drawn, not really living--just existing she said.  But it was all worth it.

"I'm glad.  Because I was worried.  Every time I called over there and talked to her, she was in the bed, she didn't feel like doing nothing.  So i'm glad now that she's able to get up and go.

Danyell says it's the little things that means the most now-- spending quality time with her husband, Chad, playing with her dog and cat, having the breath to vacuum the house, go swimming for the first time in 5  years, and:

"I climbed Jockey's Ridge.  One hundred feet above sea level in about 20 minutes."

"That's hard enough to do for someone with perfect health and perfect lungs, right?" 

"Yes it is."

The news for Danyell and her family is much better, but their fight against CF isn't over.  

"Do you have a message for people who are watching the telethon and supporting CF foundation?"

"Just continue to support the foundation, so they can continue doing reserach to come up with a cure for CF.  There's a lot behind the scenes that you really don't know about." 

"Transplant is great, but it's not a cure.  Cause you're always worried about infection and rejection and needing a second transplant.  It helps for a while, but it's not a cure.  We need to find a cure for CF.  We need to maek sure that they future generation of cf children that are living with it now don't have to go through what I went through.  It was a very long, very hard process and no one should have to go through it if there was a way to prevent it."