Clayton girl suffering from pulmonary hypertension on transplant list

By Lou Fancher Correspondent Contra Costa Times

Although Kathy Groebner knows pulmonary hypertension (PH) is a condition restricting the flow of blood and oxygen through the arteries traveling from her 11-year-old daughter's heart to her lungs, she thinks of PH as a thief.

"Katie Grace used to have infectious laughter. She tries to laugh, but the disease pulls it back. That's the hardest part," Groebner says.

The disease has also pushed Katie Grace's BNP (brain natriuretic peptide) from 79 in March 2012 to 1,380 last November. The leaping numbers indicate the right ventricle of her heart is failing, and the 21 pills she takes daily, the IV bag hooked onto her slim body and the oxygen tank she relies on for the easy breath PH has stolen, are losing their efficacy.

"Anything over 600 BNP puts you on the list," Groebner says.

After completing necessary tests, Katie Grace will "graduate" to a position her family hoped she'd never achieve. Her deteriorating condition has placed her on the active list for a heart and double lung transplant.

Twenty-six tubes of blood, a sleep test and a complete write-up from Dr. Jeffrey A. Feinstein, associate professor of pediatrics and cardiology at Lucile Packard Children's Hospital at Stanford, are the final steps in her improbable, five-year odyssey.

Diagnosed with an enlarged heart in December 2007, the Groebners had battled reality (a small hole in Katie Grace's heart from birth) and misdiagnoses (acid reflux, pneumonia, overanxious mothering), before a procedure to repair the hole revealed the actual condition, PH.

The family learned their Mankato, Minn., hospital could not provide the transplant the doctors believed Katie Grace required. Stanford Hospital could, so Groebner, her husband, John, Katie Grace and Savanha, Katie's now 14-year old sister, packed themselves into an RV and headed west.

Transplant candidates must live within two hours of the transplant hospital: John landed a job with Thor Doors, the kids were enrolled in school, and Kathy Groebner found Clayton Community Church.

"The community gives me strength. Our faith is huge. Katie Grace asks me every night, 'Do you think God has a plan for me tomorrow?' She knows her heart can stop at any time," Groebner says.

Within three months of their arrival in California -- and with medications working so successfully Katie Grace did not qualify for a transplant -- a church family invited the Groebners to live in an available cottage.

Community members held fundraisers (over the holidays, 22-year old Jeffrey Holmes choreographed a light and sound show to raise support) and neighbors took care of Savanha during her parents' frequent absences to accompany Katie Grace to the hospital. A much-needed van arrived last week.

"It needs new tires and fuel injection work, but it's drivable and it's ours," Groebner says, fighting tears. "My kids see all of this and realize there's kindness and love in this world."

"My parents are gone a lot. You don't realize until they're gone how much you talk to them. You wish you could talk to them more," Savanha says.

To keep a balance, she stays busy, getting good grades, playing soccer, singing. She also tells herself, "God never gives you more than you can handle," a phrase antagonistic to some, but for her, a comfort. "I've gone through something awful and I'm here, so it's true," she says, explaining how her faith helps her be strong when her sister's failing health causes her to doubt herself.

For Katie Grace, playing is the key to finding comfort.

"I annoy my sister by making weird noises, I play Wipeout, Infinity and Mindcraft (video games) and I go to secret places outside. Come see what I built with bamboo," Katie Grace says, darting off her stool and running to a kitchen window.

Asked if the 20-foot sprint has made her out of breath, she says, "No," but her mother later disputes the claim.

Regardless, Katie Grace is a bundle of youthful exuberance as she points to bamboo sticks in the backyard and says, "We made bows and arrows and slingshots." Then, remembering hospital games with fellow patients, she adds, "I like to scare the nurses by playing dead."

The admission is typical Katie Grace: impish, impressive and impossible not to admire. At the hospital, her mother says she pulls children whose parents rarely visit them into her room.

"Friends stick up for each other," Katie Graces says, simply.

The arduous road ahead of her will play to her favorite soundtrack, the Jonas Brothers' "A Little Bit Longer," because "it says you'll be fine at the end of everything."

Until she has her 12th birthday, on July 16, she will not qualify for adult organs, and Groebner knows her daughter may be on the active list for months, or years. New medications will keep her heart from failing and even after a transplant, Groebner says her survival is 35-50 percent.

"I feel like I'm being told again, for the first time, that we're at the end. I have to keep holding on to that she's been a strong girl. When I'm alone, it gets really hard. Then I think of all the what ifs."

She also thinks of the loss another family must suffer for her daughter to survive. Mostly, her thoughts go to parents of other children with PH.

"Almost all kids end up being diagnosed the same way: after years of parents begging for doctors to realize something is wrong," Groebner says. "If they could be diagnosed earlier, the medications are less severe and the condition can be treated."