Kerry Baumann Kerry Baumann, pictured here with her husband Ben in the
this summer, needs a new pair of
. She was diagnosed with
at 6 months old.
Summary: Kerry Baumann, 24, was diagnosed with cystic fibrosis when she was 6 months old; now she is preparing to undergo a rare lung-liver-
Breathing isn't something you think about.
But for Kerry Baumann, it's something she's looking forward to - taking that first breath with a new pair of lungs.
Her lungs are functionality at about 25 percent capacity right now as cystic fibrosis causes mucus to clog her lungs, creating a breeding ground for infection. The 24-year-old
resident needs a double
, a new liver and possibly a new pancreas, because of the toll cystic fibrosis has taken on her organs. A lung-liver transplant has been performed only 40 times in the United States since 1988, according to the Organ Procurement and Transplantation Network. A lung-liver-pancreas transplant has never been performed at
, said her doctor, David Zaas, medical director of Duke's lung transplant program.
It's major surgery, but Baumann is excited. She met a woman who recently underwent a lung transplant.
"She said it was really worth it, just to wake up and take that first breath. So I'm kind of excited. I want to have that feeling."
About 900 lung transplants are performed each year in the U.S., and an estimated 120 to 150 of those are cystic fibrosis patients, according to the Cystic Fibrosis Foundation. Baumann is being treated at Naval Medical Center
, one of five care centers in Virginia accredited by the Cystic Fibrosis Foundation, until she goes to
, N.C., for the transplant.
Her husband, Ben Baumann, thinks they'll be bound for Duke in about a month. There, Kerry Baumann will undergo a pulmonary rehabilitation program of weight training and cardiovascular work for four hours a day, five days a week, to prepare her for surgery, which will take 12 to 24 hours, Zaas said.
"They say the surgery's pretty stressful, and they want you to come through," she said.
They'll be there for about a year waiting for a donor. After surgery, Kerry Baumann will undergo post-operative care and
, including exercise sessions five days a week. Family and friends are throwing fundraisers to help cover costs not covered by insurance and living expenses for their stay . The Baumanns have been told the temporary relocation will cost about $40,000.
MULTIPLE HOSPITAL VISITS
Kerry Baumann was diagnosed with cystic fibrosis at 6 months old. Things were pretty normal for her until her teen years, when she was hospitalized for the first time. About once a year, she would end up in the hospital again to get pumped full of antibiotics to fight off infection, said her mother, Nan Harrington, of Newport News.
"She is a strong girl. I am just a wimp. If I had to go through the stuff that she goes through, the poking and the prodding..." Harrington said, trailing off. "When you're pregnant carrying a child, you want a normal, healthy baby. She wasn't, and that's OK. We have a very strong faith. This is the way God made her."
Kerry graduated from Summit Christian Academy in 2004, where she played volleyball, and met her future husband at church, Peninsula Community Chapel. They married Dec. 20, 2008.
Kerry Baumann's health began to worsen about a year ago, but she pushed through to finish the registered
"Going to school was real tough for me. I'd be out for hospitalizations a couple, three times a year. Just overall energy, it was tough to keep up," Kerry Baumann said.
She had to quit volunteering at the
Free Clinic in
, too. She wants to be a nurse, but must protect herself with a mask, gloves and gown to avoid catching an infection. She hopes to land a job as a
education nurse - she also has diabetes - which will reduce her risk of coming in contact with sick people.
"My main goal is just to I want to be able to work and support my husband so he can go back to school and get his teaching degree," she said. "He supported me when I went for my nursing degree, so I want to swap. And I want to play sports and play with my dog."
LOOKING INTO THE FUTURE
New lungs mean no more "vest" - an airway clearance device hooked up to a compressor. Three times a day for 45 minutes at a time, she straps on the vest, which shakes her chest to loosen the mucus stuck in her lungs, Kerry Baumann said.
It does mean trading one health condition for another. Although she'll be off a lot of cystic fibrosis medications, she'll be on anti-rejection medications.
But cystic fibrosis doesn't go away. The condition might slowly resurface, refilling her lungs with mucus again.
"My hope is that this is a way to give her five, 10, 15 years at least of a good quality of life," Zaas said.
Baumann is cheered by the progress of one double-lung recipient who has only had a few infections.
"A little bit concerned, but seeing how she's doing and other people I talk to, they're doing really well," she said. "If you take care of yourself and your organs, you'll be in pretty good shape."
WANT TO HELP?
Tori Bay Salon, where Kerry Baumann's aunt works at 758 J. Clyde Morris Blvd. in Newport News, is holding a fundraiser for Kerry Baumann today from 1 to 6 p.m. It includes a cut-a-thon, raffle, a car wash and a bounce house for kids.
You can also donate online at www.transplants.org/ donate/kerrybaumann or by mail at the National Foundation for Transplants Virginia Multi-Organ Fund, 5350 Poplar Avenue, Suite 430,