Versailles woman recovering after five-organ transplant
In January 2019, Rachel Downey-Cox told the Sun, “I don’t know what it
feels like to feel normal.”
Crohn’s Disease, undiagnosed until 1997, had badly damaged her liver,
kidneys, pancreas, stomach, duodenum and large and small intestines.
She’d been on IV nutrition (mixed with medications) for years, had
already undergone a dozen surgeries, and the week before Christmas 2018,
was put on a national organ donor registry list.
Two weeks ago (after three “false alarms”), the call they’d been waiting
for finally came, and at 3:30 a.m. on April 1, a team at IU Health
University Hospital in Indianapolis began to transplant most of what she
was waiting for – all except for new kidneys, her husband, James Cox,
said. (Doctors decided her kidneys, aided by the new, healthy organs,
would heal on their own, he said.)
They’d expected Rachel’s operation to last at least 10 to 14 hours, but
the procedure took “just” six-and-a half hours and went, “As perfect as
we could have hoped for,” James said.
Two days after the surgery, Rachel, 46, walked a bit, and seven days
after that, James, 44, said she was doing “amazingly well.”
“She’s having a lot of muscle pain, probably more than anything,” James
said. “Obviously, going through a five-organ transplant – there’s lots
of new pain that she’s not familiar with. In the past, if something
hurt, she could tell you, ‘My stomach’s hurting’ or ‘My kidneys are
hurting’ or something like that. Now, she doesn’t know what it’s really
supposed to feel like and so, she knows muscle pain, but the other pain
from the actual (surgery) – that’s all new pain to her.”
Last Friday, she began drinking clear liquids – including a favorite,
Cherry 7-Up. Popsicles are next, followed by a soft liquid diet, then,
one day, food.
Monday, James said Rachel had a rough go over the weekend and doctors
were trying to figure out the source of her pain, but that her organs
were doing really well. She’ll likely be in the hospital through the end
of April and will then need to stay in the area for another six to eight
weeks for tests and check-ups, he said.
“It has been a difficult journey, but I truly feel like Rachel and I
were put together for this exact reason,” James said. “I’m a very
positive by nature person; Rachel’s positive in her own way, but when
you’ve been through as many procedures and surgical things as Rachel
has, sometimes you tend to – I don’t know if ‘lose hope’ is the right
phrase, (but) your mind can’t help but go there. So I feel like I’ve
been able to be the calm to her storm for several years, and I just try
to stay positive …”
There are other challenges to that glass-half full approach. The
multi-organ transplant alone cost about $1 million, and bills from her
after-care and the drugs she’ll need to prevent organ rejection the rest
of her life will be massive.
Friends created a GoFundMe page (“Rachel’s Road to Recovery”) and
another is donating her sales commissions for a month.
“Honestly, prayers and thoughts are all I could ever ask for, but yes,
the expenses are adding up quick,” he said.
Rachel and James met on the eve of the 2006 Kentucky Derby at the Austin
City Saloon, a country and western bar in Lexington. Ironically,
considering what was to come, it was James who appeared unwell that night.
“I was getting ready for back surgery and I could barely even walk at
the time. … So I was just kind of posted up at the little lean-to and
... just kind of struck up a conversation with her and we didn’t talk
real long – just long enough for her to say, ‘Hey, I’m having a Derby
party tomorrow …’” he said.
He thanked her and said he might just do that.
“I would have never in a million years went there (to the party), but
something told me the next day, ‘You ought to give this a try.’ So I
actually showed up at her party, and we’ve been together ever since,”
James said, laughing.
They married the following year. Since then, the illnesses that nearly
killed Rachel have played a huge role in their life together, which
includes two daughters, Laynie, 12, and Peyton, 24.
“They’ve never known a healthy mom,” James said, not mentioning that
he’s never known a healthy wife. “It’s definitely been a rocky road.
We’ve had our fair share of ups and downs, but in the long run … I think
we were meant to be. We mesh pretty perfect.”
They’ve long discussed what they’ll do together when she’s healthy
again, including a return to Austin City, where they hope to dance to
their wedding song, “Fall,” by Clay Walker, which features this refrain:
Fall into these arms of mine
I’ll catch you every time you fall
Go on and lose it all
Every doubt, every fear
Every worry, every tear
I’m right here, baby, fall