‘I don’t remember what it feels like to feel normal’
Rachel Downey, 43, needs a new liver.
And new kidneys.
And a new pancreas.
And a new stomach.
And a new duodenum.
And new large and small intestines.
There’s no transplant that will cure her of the Crohn’s Disease that led to nearly a dozen surgeries that forced Rachel onto a national organ donor list a few weeks before last Christmas. When a small-framed person (male or female) with antibodies and blood type matching her passes away, Rachel will be scheduled for surgery immediately. She’ll get all of the organs at once – if, that is, the phrase “at once” can apply to a 16-hour surgery.
She keeps a bag packed for a trip to the hospital.
This is how Rachel feels every day: “Tired. Walking from (the living room) to the kitchen, I get short of breath. I can’t walk very far; I can’t stand very long,” she said, then pointed to what appears to be a large purse or beach bag. Hidden in the bag is a plastic bag, from which extends a tube that runs to a port in her chest like that used by chemotherapy patients.
“It’s got IV nutrition in it and I have to do that, like, 16 hours, and we try to start it in the early evening and run it overnight until morning, and then I do hydration, three to four bags, a day. Basically, if I don’t do them, I don’t stay alive,” Rachel said.
The fluids, which include several medications, give her body what she needs to stay alive, but they don’t curb her hunger. She especially misses hamburgers and steaks and salads, and the only fruit she can tolerate is a banana.
“I’m able to eat food, but I usually regret it when I do,” Rachel said. Her stomach usually hurts after she eats, and she doesn’t know how quickly the partly-digested food will gather in the bag she’s uncomfortable with taking out in public.
“That keeps her from wanting to go a lot of places,” said her mother, Ellen.
“Or feel comfortable in my own skin,” added Rachel. “It’s just … disgusting.”
Rachel said her husband, James Cox, has been very supportive during her ordeal. “Sometimes overly,” she said with a chuckle. “I really couldn’t ask for much better as far as being supportive.” James and Rachel have two daughters; Peyton, 22, and Laynie, 10.
Before getting the organs she needs to stay alive, Rachel may well be back in the hospital again to fight sepsis, the dangerous infection she’s been fighting the past few years, every two weeks to two months. She said the mix of vitamins, minerals and fats she receives through her port line, which itself has been replaced 30 times, are a breeding ground for infection. If there’s an upside to her ongoing battle with sepsis, it’s that she now recognizes the symptoms.
“You feel the usual, then all of a sudden, you’re shaking all over, you’re freezing, you’ve got a fever, you’re hurting all over, and you’re septic,” Rachel said. When that happens, she knows to get to the hospital immediately.
Doctors haven’t given her a date by which she must receive the transplants to stay alive – but they have told her if she doesn’t receive them, she’ll die as a result of sepsis or malnutrition.
Rachel’s health woes began even before 1997, the year she was diagnosed with Crohn’s Disease. The Mayo Clinic defines Crohn’s as “an inflammatory bowel disease that causes inflammation of the digestive tract, which can lead to abdominal pain, severe diarrhea, fatigue, weight loss and malnutrition.” She said the disease caused so many problems that she let surgeons remove parts of her diseased small intestine, again and again – eight times in all.
“It never really helped anything, but each time, made things worse,” she said. Rachel and her mother said the negative impact of the surgeries, which eventually caused short bowel syndrome, is one reason they decided to tell her story.
Asked if she wonders from time to time, “Why me?” Rachel nodded her head, then said, “Way too many times. Probably numerous times a day.”
Rachel still finds blessings here and there. Her husband discovered that she can undergo the transplant at Indiana University in Indianapolis, meaning she didn’t have to move to Cleveland to be near the Cleveland Clinic. At IU Hospital, she told staff that she’d like to meet someone like her, because, as her mother said, “She thought she was so different.” There she met a 28-year-old woman named Haley who’d already undergone the type of transplant Rachel needs. Ellen said a friend in her Bible study class knows a Danville woman who’s also received new organs, and they plan to meet her one day when Rachel feels up to it. She’s also made friends with lots of nurses, and Ellen said she and her daughter have become best friends.
Rachel, her husband, and their parents are all on a list of people who’ll receive calls when doctors believe they’ve found a match. Even the prospect of life-saving surgery, however, brings Rachel mixed feelings, because for her to live, someone else will have to have died.
It’s not an easy life in any way.
“She’ll call me and, you know – having her cry makes you very sad, because there’s not anything to say except, ‘I wish I could make you better,’” Ellen said. “I’m actually pretty good about it most times, because I feel like the Lord is in control of everything that happens to us, and I also feel like the doctors would not even suggest doing the (transplant) surgery if they don’t have a good idea it’s going to be successful.”
Ironically, the Crohn’s Disease that led to all this is in remission now – a small favor for someone whose liver and kidneys were damaged by the disease and the medications used to treat it.
What keeps her going?
“Family support,” Rachel said. “I think if I didn’t have it, I probably wouldn’t be here. Faith – I’ve said that for a long time. Because they’ve always said, ‘We don’t know how you’re still here, we don’t know how you’ve made it through another infection.’ After so many times, I kind of feel like I’m here for some reason, and at this point, I want to do much but can’t, so I just think this is going to work.
“This is going to give me my life back, and I’m going to be able to help more people like me …”
Rachel said though the medical community doesn’t suggest surgery for Crohn’s patients as often these days, she wants to be able to tell people afflicted with Crohn’s not to think that surgery is a cure.
“If somebody had told me that, I’d never have had all the surgeries I’ve had,” Rachel said.
Until she and her loved ones get that call, Rachel will keep her bag packed and her hopes up – along with her appetite for that first steak or hamburger or salad after she heals.
Note: Rachel’s husband James Cox has set up a GoFundMe page and an account at United Bank to defray some of their medical expenses, which include $200,000 a year for IV nutrition alone. Both accounts are titled “Rachel’s chance at a better life.”