Mary and Judy Hart, Gardner, are running a marathon of sorts, and the finish line is somewhere on the other side of St. Louis.
“I’m hoping we run a marathon that we win,” Mary said. “Not all of them are (won).
We’re just focusing on the best outcomes.”
Judy Hart, Mary’s daughter, was diagnosed with Cystic Fibrosis shortly after birth when doctors discovered an obstructed bowel. The disease, also known as mucoviscidosis, affects every organ in the body that secretes fluid. The genetic disorder can also create cysts in the pancreas and discourage growth. In males, it can cause infertility. Most critically, an abnormal ability for cells to transport chloride and sodium leads to thick mucous secretions that over time, scar the lungs. For Judy, a Gardner Edgerton High School senior, the disease has lead to CF-related diabetes, due to CF’s affect on her liver, and a myriad of hospitalizations for lung-related illnesses.
The number of hospitalizations increased this fall.
“It’s gotten to be pretty intense,” Mary said. “We went from hospitalizations very infrequently to having hospitalizations two-to-three times per year to her being in the hospital in June, July, August and September, and then again in September.”
During her last hospital stay, Judy was coughing up blood clots.
“That was kind of a scare,” Mary said. “The infection was just so bad in her lungs.”
When Judy left the hospital, her lung function was higher than it had been in a very long time.
Mary recalled that Judy’s lung function was at 19 percent when she was placed on the inactive transplant list in 2010. Her lungs were functioning at a similar level when she was hospitalized in July and September.
“When she walked out of the hospital with a 32 percent, we thought, that’s awesome,” Mary explained. “We got the call the next week.”
The call meant that Judy soon was to be placed on the active transplant list. The status change meant Mary would need to quit her job as a nurse at Overland Park Regional Medical Center, and together, she and Judy would need to move to St. Louis to be near the hospital that will eventually perform Judy’s double lung transplant.
They were given two weeks. On Oct. 27, they’ll move to St. Louis for an indefinite amount of time.
The two-week deadline was ample time to make most of the preparations.
“The task-oriented stuff like packing, we have family and friends for that,” Mary said.
The move won’t be like other moves in which the duo can come home on weekends and holidays and visit. Once on the active transplant list, the pair will be essentially on-call, with orders to stay within about an hour’s drive from the hospital. For example, Mary said if they wanted to visit Six Flags amusement park, located approximately an hour away from the hospital, Mary would seek permission from doctors before booking her tickets.
“If someone dies that is an organ donor that matches her, Judy has to be right at the moment to have the lungs transplanted into her,” Vicky Chandler said. Chandler is one of Judy’s former teachers at Pioneer Ridge Middle School.
A few days ago, Mary secured a place to live while Judy awaits a donor. For now, the pair will live with Mary’s former college roommate. They may eventually find a place of their own. They don’t really know how long they’ll be there.
When Jamie Moore, also of Gardner, received a lung transplant 10 years ago, she waited six weeks. COTA estimates they’ll need to fund their living expenses for up to six months, but it can take longer – up to a year or more.
The mental part of the disease and transplant may be the hardest, Mary said. Though she received a transplant handbook and met with specialists four years ago, Mary said she hasn’t dwelled on the numbers.
“I will tell you years ago, there was an 85 percent survival rate the first year. And then by the third year, it dropped by like 50 percent. I’m hopeful those numbers have improved over the years,” Mary said.
She is focused on the best outcomes. Mary lists those she knows who have had lung transplants.
Moore received a transplant more than 10 years ago and continues to thrive, but not all transplants end as well. Mary has another friend whose son was on the transplant list for several years.
“He went in and he had his surgery and he had a massive stroke and never even took his first breath,” she said.
Another friend had a daughter who survived for one year, and another friend just celebrated his one-year transplant anniversary.
“It’s in God’s hands,” Mary said. “The only thing that is in my hands is having Judy be compliant. She’s very mature for her age and that’s what she has to do. We’re praying for a very successful outcome.
For Judy, the mental part involves fears, of course, but there are other complications. She’s a senior at GEHS, hoping to graduate with her class in May.
Judy will keep up with classes on her own, and teachers and administrators have gone out of their way to assist, Mary said. Specifically, Mary credits GEHS’ Melissa McIntire and Principal Mark Meyer. The pair, she said, has been in Judy’s corner, getting assignments to her, making sure she stays on top of her classes, and allowing the use of school property to do fundraisers in preparation for the move to St. Louis.
The Children’s Organ Transplant Association (COTA), an organization that assists organ recipients in fundraising and paying living expenses during the transplant and recovery, estimates that double lung organ recipients will need up to $60,000 for extra expenses related to the transplant.
Live2Love Judy Hart, a foundation created by friends of the heart, has reached its initial goal. To date, they’ve raised just over $60,000 for the transplant. However, Vicky Chandler, a Pioneer Ridge Middle School teacher who helped found the group, said they are still interested in raising more money. Whatever funds the Harts don’t use, COTA will donate to other children awaiting transplants.
The money the foundation has raised has come primarily from the Gardner-Edgerton area. Teachers and students have stepped in to assist. Sydney Clarke, a GEHS senior, has organized a fundraiser for Nov. 8. The Buff Puff volleyball tournament will feature teams of high school boys, competing for top honors at the high school. All money raised will benefit the Live2Love Judy Hart Foundation.
Mary says she is extremely grateful for the way the community has helped.
The foundation, she said, were like gang busters.
”We are very appreciative of that,” Mary said. “Having those funds available for non-hospital related expenses for anything Judy needs that isn’t covered by insurance, I don’t have to worry about where I am going to get the money, because the Gardner-Edgerton area has helped with so much fundraising. That has been awesome. It’s a very, very supportive community in such a big way for such a small community.”
The foundation will host a send-off for Judy on Oct. 23 at Tumbleweed Bar and Grill. The send-off will be from 4 p.m. to 8 p.m. Mary hopes that many of Judy’s friends can attend.
“She’s very upset about having to leave school, and she’s really upset about not being with her friends,” Mary said. “It would be awesome if the kids that are in her school were there.”
The lung transplant won’t cure Judy.
“Having the donated lungs will not cure her,” Chandler said. “It will hopefully buy her some time. It’s such a bittersweet thing. You can imagine the emotions.”
Anyone interested in following Judy’s progress, can visit a Facebook page, Live2Love Judy’s Journey. Those interested in donating to Live2Love can visit her COTA page at http://cota.donorpages.com/PatientOnlineDonation/COTAforJudyH/. Funds will also be collected at the Buff Puff Tournament on Nov. 8 and at Tumbleweed for the send-off on Oct. 23.