Waiting for more life

By Julie Rausch

Rachel Fletcher is determined. She’s determined to graduate summa cum laude in December and she’s determined to save her life.

Fletcher, 21, an integrated marketing communication major, suffers from cystic fibrosis, and she is going to die if she does not get a double lung transplant soon.

Cystic fibrosis causes the body to produce a thick, sticky mucus that clogs the lungs and the pancreas.

Fletcher got on a transplant waiting list in December and she has about a year to raise $100,000 so she can have a chance to survive into her 30s. The lungs won’t cure her condition, but they will give her something of which a monetary value can’t be placed — time.

Time for a quality life to be with her family, friends and longtime boyfriend, Quinn. Time for a career that she’s worked so hard toward. Time for her to grow and develop and do some of the things the rest of us enjoy.

And it will give her father and mother Lee and Phyllis Fletcher more years to cherish their only daughter.

Rachel has always been a very giving person, says Phyllis Fletcher, assistant professor of nursing at WSU. "She’s always been one to offer a hand of friendship to others," and now, Phyllis and her family hope that others will give to her daughter.

Rachel’s brother, James, 25, also has CF. Phyllis says he has always been physically stronger than Rachel, and so far, James, who is a pipe fitter, has endured the disease better than most.

The specific defective inherited gene that causes CF was discovered in 1989. Both parents must be carriers for their children to have the disease, and even then there’s a 25 percent chance that a child will have CF.

Her mother said as a child Rachel ran, swam, played volleyball and fully participated in many other school activities until the disease began taking its toll.

Phyllis and Lee made sure that they had quality family time, such as boating and skiing vacations. And when they celebrated their 25th wedding anniversary with a cruise, Rachel and James shared in the occasion.

It wasn’t until Rachel was about 17, and her health began to deteriorate, that she was fully aware of the extent of her disease.

"My health isn’t that great now. I have problems breathing and I’m coughing all the time," Rachel says. "I have to take three or four hours each day to do breathing treatments and chest physical therapy and my medications."

Now, she’s playing the waiting game. When she went to the doctor in September, her lung capacity was at only 30 percent. That’s when her doctor suggested it was time to consider a transplant. Without it, her survival time has been estimated to be one to three years.

"The waiting list is about 1 1/2 to 2 years," says Rachel. "You put in your time, and when you get near the top of the list they call you and you move to where the hospital is, which in my case, will be St. Louis. I’ll be there from anywhere from three-to-six months before the operation, and I’ll wear a beeper all the time and hopefully, I’ll get the call."

The window from lung donor to the recipient is a shorter period of time than for another organ, says Phyllis. Matches are made by blood type and general body size.

Insurance will cover the cost of the transplant expenses; however, it does not cover pre- and post-transplant care and recovery. Deductibles and co-pays for ongoing medication cost thousands of dollars, as well.

The family suffered a blow a few months ago, when Rachel’s dad, Lee, was laid off from Boeing after working there 12 years. Phyllis’ insurance at WSU may carry some of the surgery expenses. Phyllis also is a critical care nurse at Wesley Medical Center.

Friends and co-workers say that Phyllis is amazingly strong in the face of this crisis.

"Phyllis has always led a full life as a professional nurse and a mother; many who know her do not know that she has two children with CF," says friend and colleague Phyllis Jacobs. "She has a strong sense of humor and a zest for life that masks the stress of being the parent of two chronically ill children. Phyllis is always there for others who need support, especially her students when they are having a difficult time dealing with severely ill patients. Her work as a critical care nurse is reflective of her care and concern for others in face of her own anguish."

Rachel says that it’s tough to think about the fact that she likely won’t live a full lifespan.

"But I can’t let that stop me from living life to the fullest now. I’d like to make the most of the time I do have, and that means doing everything I would have done if I didn’t have CF. That’s part of the reason why it’s so important to me to get my degree.

"As I’ve gotten sicker the past few years, I haven’t been able to do as much as I used to; I want to be able to finish what I started here at WSU."

Rachel says that the prospect of a short life and feeling sick most of the time can be depressing. But through family and friends she has "the best support system.

"My family and my boyfriend are always there for me when I need them. I always feel better about things after talking about them, and I always have someone to listen. And with the fund-raising effort now, it’s made me feel really good with all the wonderful people who have come forward to help, friends and strangers."

Rachel says she has been able to continue to reach for her goals through such adversity because she is determined.

"I feel like I have more to do in this world, and I’m working to get the time to do it."

Rachel is working through the Elliott School of Communication to put together some fund-raising events. She has a Web site, www.rachelfletcher.org, with information about how you can help. Campaign volunteers are needed.