SPRING CITY >> When Karlene Novotny goes out to see her 10-year-old daughter in a school play, she doesn’t just grab the camera. She carries her pump and bags of fluid nutrients.
And even when the lights go down and the audience is asked to turn off all cell phones, Novotny leaves her phone on. She doesn’t want to risk missing the most important call of her life. That is, the call that tells her an organ match has been found for her small bowel transplant.
Although the surgery is risky and frightening, it is also Novotny’s only hope of living anything close to a normal life. Or even for living at all.
Novotny, 53, suffers from short gut syndrome. She endured her first serious illness at age 16 and her first intestinal surgery eight years later. Since then, she has undergone more than 30 surgical procedures to remove portions of her intestines and colon.
Finally, in 2004, her colon shut down completely, forcing doctors to remove it. For more than a decade, she has survived on intravenous nutrition. She eats and drinks only for pleasure, but gets no nutrients from food. Instead, she relies on total parenteral nutrition, or TPN, which comes in bags of fluids that are fed into her system through an intravenous line 24 hours a day.
While the TPN keeps her alive, it comes at a great cost, both financially — she pays more than $700 per week out of pocket for the $1,000 bags — and physically.
“Most of your immune system is in your colon, and I have no colon,” Novotny said. “You can’t be around people. There’s no energy, there’s no strength. Food goes directly into my liver and its actually destroying my liver.”
The continuous IV line leaves her prone to blood infections, like the one she contracted in February that caused her to be hospitalized for several weeks, spiking a fever of 105.
Despite the fact that Novotny lives with the constant menace of life-threatening infections, liver failure, blood clots and internal bleeding, she remains resoundingly upbeat. She is a woman of strong faith, tight friendships and close family ties.
“God and my faith and my family keep me grounded,” she said. “God’s got it figured out. If there’s anything I would love to come out of all this it would be, if there’s someone out there who is suffering, I want them to know, there’s always hope. Don’t give up. The woe is me attitude isn’t going to get you anywhere.”
Her husband Steve and their adopted daughter Ava, 10, are her main support system, but she’s also garnered an overwhelming amount of support from Coventry Christian School, where her daughter attends school, and where she volunteers whenever possible. Her church community at Christ Lutheran Niantic, in Barto, and her sister, Kathy Kalinowski, have also helped bolster her.
That support has carried her through some difficult times. Like in November — only a month after getting on the transplant list — when she was called for a transplant only to find upon arriving at Medstar Georgetown University Hospital that the donor intestine was not healthy.
“The support helps, but it doesn’t stop the anxiety you feel when the area code 202 (for the hospital) comes up on your phone,” she said.
While the transplant surgery is risky, with possibility of rejection or serious infection, Novotny has been told she has a 90 percent chance of success.
“The doctors attribute that to my attitude, and to the fact that I keep myself as physically fit as I can,” she said. “I’m not going to sit back and let life pass me by.”
While Novotny, who formerly worked as a CPA, makes a point of staying active, she is no longer healthy enough to work. That, coupled with her high medical costs, have brought an added financial strain to her family.
Because many transplant-related expenses will not be covered by insurance — including co-pays, deductibles, travel and temporary relocation to be near the hospital for four months — a fundraising campaign has been established in her honor with HelpHopeLive, a non-profit that assists transplant patients. Established by friends, that campaign seeks to raise $400,000. To donate visit helphopelive.org and search for Novotny.