Janet Rippee with cake and gifts from her classmates at Ozark High in celebration of the first anniversary of her liver transplant.(Photo: Submitted photo)
OZARK – High school sophomores honored one of their own recently at an assembly with gifts and a cake to celebrate the first anniversary of a successful liver transplant.
Janet Rippee — an active, vibrant and extremely articulate 14-year-old — has cystic fibrosis. She is very knowledgeable about her transplant surgery Oct. 19, 2014.
School nurse Debbie Barnes said Janet’s classmates planned the celebration themselves.
“They made a beautifully decorated cake, brought her out (in an assembly) and sang happy birthday to her,” said Barnes. “She was pleased and a bit embarrassed,but said she was OK with it.”
Barnes pointed out to the students what a significant milestone the anniversary was and how very sick Janet had been and also that it was sweet of the students to have a party for her.
“Without that liver, she would not be with us any longer,” Barnes said.
She took the opportunity to make them aware of the importance of organ donation. Also, the sophomores will be given a chance to sign up to be an organ donor when they get their driver’s license.
“Now you know a recipient of a donated liver,” Barnes said.
Sharing her experience with friends is done sparingly, not knowing how they’ll take it. She wonders if they will believe, care or really listen. Some may think it’s a joke or that she wants attention.
“A lot of them don’t understand that there are kids out there who are sick, who have this cirrhosis or something,” Janet said. She added that some have asked what she drinks and stuff like that.
“It’s a genetic disease caused by my CF,” she tells them.
She explained that cystic fibrosis is mostly respiratory, so it mainly affects lungs, but it can damage the heart, lungs, kidneys and other things and cause cancer, diabetes… anything. She could potentially have cirrhosis again.
Many believe it’s never going to happen to them, but in the future, if they have cirrhosis or another illness or condition, they may remember and wish they’d listened, she said.
Janet and a friend who has CF and cancer have talked about how their parents have been affected by their illness.
“There are so many times our moms have cried watching us go through the pain. There are times I would sit at home and cry, couldn’t move, and would tell her I just wanted the pain to go away. She would say, ‘I would take it away if I could.’ So many times she would say that.”
She recalled that before the transplant it seemed she faced such a long time of recovery, but “I knew I was going to get the transplant and nothing was going to get in my way after that.”
Nearly all her life Janet Rippee, who has cystic fibrosis, has been at Stage 1 of cirrhosis. Then in just four months, she quickly advanced to the end stage.
Last year doctors did an ultrasound and found a little scarring but said there was nothing to worry about. A few days later the doctor called her mother to say they were going to do a transplant evaluation. That’s when she ended up in the hospital.
“Up to the day they put me on the transplant list — outside of being tired my entire 13 years — I had been in the hospital once. For the typical CF kid, it’s like every other month,” said Janet.
“As soon as my liver went bad and they said I needed a transplant, I was hospitalized five times within a year. They were talking to me about the transplant, which was freaking me out even more.”
Needless to say, she was scared.
She explained that her score of 8 pretty much determined where she went on the transplant list. It meant her liver was very bad but still functioning some.
At the time she only weighed 58 pounds and her weight was still decreasing. An NG feeding tube was put in.
As she got older and her liver got worse, her lung function also decreased.
“The lowest I’ve ever been is a 27 the first time I ever got sick, which was back in 2010.”
“Before my transplant, my lung function was at 40 percent,” she said. “In October when we went to St. Louis for a doctor’s appointment, my lung function had gone up to 57 and now it’s 59 percent. Highest I’ve ever been is 82 when I was 6.”
When doctors at St. Louis Children’s Hospital called to tell Janet and her mother Heidi Newburg they had a liver, Janet was getting ready to go to Stockton to sight in her rifle for deer hunting.
“My mom was crying, and at first I thought something had happened to my dad. She pointed to my stomach. Then I burst into tears and said, ‘I’m not ready.’”
Her mom said, “Yes, you are.”
Janet said she was overwhelmed and cried the whole way.
Doctors explained the process and what could and could not happen.
“If the donor liver’s no good you’ll go home without one. If it’s good, it’ll take about seven or eight hours,” said Janet. “I was one of the rare cases; it took only about five hours. When they cut me open they said they didn’t understand how I was still functioning with it.”
Surgery went fine but afterward, there was so much pain she was pressing the pain medication button too often. It hurt a lot to be rolled over on her side and propped up. She discovered that if she followed the pain medication right away with nausea medicine, she could sleep without pain.
“The whole 10th floor was proud of me,” she said. “They said they were going to ball me up into a pill and distribute me to everybody on the floor.”
They said that most kids who have CF and a transplant are down in the dumps and don’t want to do anything, which makes their recovery take a lot longer.
With a lot of determination, Janet was walking the next day — still with a drainage tube. She got only about two feet on the first attempt. She increased the second day and then on the third, walked 10 laps around the entire floor pulling her IV.
“They then unhooked me when I was walking so I would have to pull it,” Janet said.
Because of all the immunosuppressants, she couldn’t be around groups of people at first.
“I wasn’t able to come back to school for about a month. If I had gotten even the slightest sickness, I could have ended up back in the hospital.”
CF doctors said she would probably never be able to return to PE, because of the continuing possibility that something could happen to the liver.
However, she was able to participate during the entire band camp and through all of the marching season. Playing her flute has helped her lungs, she added.
“I was released in about March to pretty much I have my life back with horseback riding, swimming and things like that.”
When asked if she owned a horse, she replied, “Sadly, no.”
In addition to her parents, Janet has an older brother Christopher, sister-in-law and nephew.
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