Source: The Abilene Reflector-Chronicle

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Abilene woman awaits double lung transplant in Colorado hospital

by By DENA O’DELL Special to Reflector-Chronicle

June 14, 2014

Darcy Ode, of Abilene, holds up a scrapbook she made in honor of her brother, Jason Christiensen, who died in 1997 from primary pulmonary hypertension. Darcy also has the disease and is on the waiting list for a double lung byPhoto provided by Dena O'Dell.
The constant hum of an oxygen concentrator is a sound Darcy Ode and her daughter, Taylor, 19, have become accustomed to. Since being diagnosed with primary pulmonary hypertension, or PPH, in 2010, the machine and the three large liquid oxygen tanks that inhabit the corner of Darcy's living room have become her lifeline.

Now, the 1987 Abilene High School graduate and single mom is fighting for her life in a University of Colorado hospital from the same disease that claimed the life of her younger brother, Jason Christiensen, in 1997. Darcy is currently on the waiting list for a double lung transplant and a matching donor – one who must have the same blood type and the same size of lungs as her own damaged ones.

The symptoms

Once an avid walker, Darcy noticed she began to have shortness of breath and felt fatigue any time she exercised or exerted too much energy. She initially associated how she felt with being out of shape and allergies, she said.

For the next few months, Darcy was tested for asthma and allergies, and was put on steroids.

"That's the way (PPH) happens for most people. They get misdiagnosed with either asthma or an allergy issue," Darcy said.

But then she noticed her legs and lower extremities began to swell, and she began retaining excessive fluid. That's when Darcy was admitted into a Salina hospital and was told she was having heart failure. It wasn't until doctors began doing a series of tests and delved into her family's medical history when she told them she had a brother who died from PPH.

"I guess a light went off for them, and they honed in on that," she said. "I was a little bit shocked that they mentioned PH because I thought, 'There's no way. How can two of us have this?'"

In April 2010, Darcy was sent to the University of Kansas Medical Center, Kansas City, Kan., for further testing.

There doctors confirmed Darcy's worst fear.

Like Jason, Darcy had PPH, a condition in which pressure in the vessels that carry blood from the heart to the lungs is abnormally high, resulting in the destruction of the small and medium pulmonary arteries.

"It just happened so fast," she said. "One month, I was all good, and the next month, they think I caught some sort of virus, and bam, that PPH showed up and hit me like a ton of bricks."

PPH is rare, with about 500 to 1,000 new cases being diagnosed each year in the U.S.

Darcy's PPH was classified as familial pulmonary arterial hypertension, or FPAH, because her brother also had the disease.

According to the Pulmonary Hypertension Association, it is estimated only a few hundred families in the U.S. have FPAH, which is caused by an inherited mutation, or change, in the genetic directions for making a protein called bone morphogenetic protein receptor 2, or BMPR2. Other factors – genetic or environmental – also are needed to produce the disease because only about 20 percent of individuals with the mutation actually get the disease.

While at KU Medical Center, Darcy learned a large concentration of people in her area have PH.

"They said that in a 50-mile radius of Abilene, there's like 150 patients (who) have this. They're thinking either it's genetic or environmental, but they haven't started a research program to follow up with what it could be," she said. "There's just so many options on what it could be, it would be really hard to pin point … Who knows, we could all have that gene, and something in the environment could trigger it."

Day to Day

At the time of her diagnosis, Darcy was still working full time as a graphic designer for a local business.

"I was still trying to maintain a full time job, be super mom at home," she said. "I still felt really good. I would have never thought I had PH."

As the year wore on, her health began to deteriorate.

"I was to a point where I couldn't even walk into the doors at work and clock in," Darcy said. "I would have to sit down every few feet to get to the clock."

Darcy became panicked she would run out of oxygen at work or while shopping at the grocery store.

Upon the recommendation of her cardiologist at KU Medical Center, Darcy quit working in January 2011 and went on disability.

"I knew I had to stay alive (for Taylor)," she said. "I have to be there to train her for life – give her advice. Help her through life. I've got to be there."

Because the symptoms of PPH can vary so much from day to day, oftentimes, Darcy can't leave her house. The weather, stress, too much salt in her diet and even Kansas humidity can all be factors in how she feels.

Some days, just walking up and down the stairs can be a chore, while other days, she said, she feels like she's not even sick.

Taylor helps her with the laundry, vacuuming and keeping the house clean and orderly, among other things, Darcy said.

"I know the stress gets to her," Darcy said. "And, I know I am having her help me out so much here, which is a lot more than a lot of kids have to take on."

Family legacy

Jason lived just seven months from the time he was diagnosed with PPH. He died in November 1997, a month after turning 23. Once a high school track star and state track champion, Jason received a scholarship to run track at Cloud County Community College in Concordia. It was there Jason began feeling tired and out of shape.

"He was complaining about shortness of breath when he first started college out there. And, I think he was having some problems at the beginning of that. He thought he was just out of shape," Darcy said.

Jason completed his associate's degree and was working toward a degree at Kansas State University in Manhattan when he was diagnosed, Darcy said.

Jason was put on the list for a double lung transplant. Because of his disability, he received Medicaid insurance, but, at that time, Medicaid did not cover double lung transplants. The family needed to raise more than $200,000 for the transplant.

Jason didn't live long enough to receive the transplant, and, by the time of his death, about $50,000 had been raised. The remaining funds were sent to a foundation to help others in need of transplants.

"He was just so sick," Darcy said. "They think he probably wouldn't have survived (the transplant). And, they probably would have had to do a heart transplant, too, because his heart was two to three sizes bigger than a normal heart."

After Jason's death, "that's when the laws changed," Darcy said, referring to double lung transplants not being covered for patients on Medicaid due to a disability, and also referring to the persistence of Vincent Graves – also an Abilene High School graduate who helped the family with Jason's fundraising efforts.

According to Darcy, Graves advocated for Jason and wrote letters to Kansas legislators to push for the law to change.

Although neither Jason, nor Graves – who died last fall – lived to see how they helped her, Darcy said she believes they are the reason she is able to have her transplant paid for today.


a transplant

Darcy is now at the University of Colorado hospital and will not leave until she receives her new lungs.

"I'm excited with a little bit of nervousness," Darcy said about her impending transplant. "I just can't imagine that first breath – just to take that first breath. I'll probably cry. I know I will. It will be like, I'll cry and then think about the person who had to pass for that, but I'll also think, well Jason, my brother passed, and he donated what he could to other people, so that maybe full circle would come around, and I could get life again."

After four years, Darcy said she is looking forward to being able to live a normal life again.

"I want to be able to walk again," she said. "And take long walks, and smell the trees and stuff. I miss that a lot."

After the transplant, Darcy will remain in Colorado for at least three months of recovery and for doctors to monitor her progress to ensure there is no infection or rejection of the organs does not occur.

That also is the timeframe not covered by insurance in terms of lodging, food and travel expenses. A fund has been set up for Darcy under the "Darcy Ode Transplant Fund" in care of Great Plains Federal Credit Union, Abilene, KS 67410. Cards also can be sent to her at: Darcy Ode, Room 1076, University of Colorado, 12505 E. 16th Ave., Aurora, CO 80045.