Granville Summit woman wages health battle
GRANVILLE SUMMIT -
If Valerie Kisner and her mother, Jessie Zander, could have one Christmas present this year, it would be a life-saving operation for Valerie.
Valerie, a 23-year-old from Granville Summit, suffers from idiopathic pulmonary hypertension. There is no cure, and she needs a double lung transplant to live. She is on an organ donor waiting list.
"She needs it badly," Jessie said.
A couple years ago, Valerie, a 2010 Troy High School graduate, was working at the Dollar Tree in Towanda when she started throwing up blood.
After going home, she and her mother then went to Troy Community Hospital.. Jessie said the doctor thought her daughter was in heart failure.
A couple of hours later, Valerie was taken by ambulance to Arnot Hospital. Doctors there thought her aorta valve was leaking, Jessie said.
Arnot Hospital suggested Valerie be taken to the best hospital for her condition, which Jessie said is The Miller Vascular Heart and Lung Center in Cleveland, Ohio.
Doctors at that hospital tested Valerie and diagnosed her as having idiopathic pulmonary hypertension.
Jessie said the vessel between Valerie's heart and lungs is tiny, and much smaller than normal. Idiopathic means there is "no clue" as to the cause, Jessie explained.
Pulmonary hypertension (PH) is high blood pressure in the lungs, according to the website of the Pulmonary Hypertension Association.
Then, the doctors advised Jessie and Valerie that Valerie needed a pump that would pump medicine into the vein in her chest. Valerie must wear the pump and have the medicine continually pumped into her to keep herself alive.
"Everywhere she goes she has to wear this little pump," Jessie said.
The medicine is called Remodulin and it keeps Valerie's vessel big enough so that she can live. It has a staggering cost, at $20,000 a month. Even more extreme is the projected cost of a double lung transplant for Valerie, which Jessie said is estimated at $1.5 million
Once a month, Jessie and her daughter must travel to the University of Pittsburgh Medical Center (UPMC) where Valerie sees a heart specialist.
Jessie said Valerie is AB positive, which she said makes it harder to find a suitable lung donor, due to the fact that AB tissue is more rare. One bit of good news is that Valerie is not on oxygen yet. At the same time, however, this hurts her chances of getting an organ donation of lungs because there are people in worse shape and are ahead of her on the waiting list.
At their home on Route 514, Jessie has put up signs stressing the importance of becoming an organ donor.
"Recycle yourself, become an organ donor" is the message on the sign, which refers people to the www.donatelifepa.org.
Jessie is also asking people to pray for her daughter on another sign.
Jessie said she had never heard of the disease before her daughter's diagnosis. She found that to be the case with everyone in the area.
"Most people don't understand this disease," she said.
Jessie is counting her blessings that Valerie has had only one infection in the last two years.
"Praise God," she said.
There was another incident that caused some concern when, by accident, a dog got caught in the tube on Valerie's pump and they had to go all the way to Pittsburgh to get the tube stitched back in.
Valerie has had to put her life on hold because of her condition, which has disabled her and prevents her from working. But she maintains a positive outlook on life.
"Her attitude is awesome," Jessie commented.
Some days, Valerie's health is OK. Other days, her mother said, her daughter can only lay around.
The family had to rearrange the house and put Valerie's bedroom downstairs because she cannot climb steps. As a result, the living room has become Valerie's bedroom.
"But we manage," Jessie said.
Jessie said the fact that someone has to die in order for her daughter to receive lungs is a "hard concept" to deal with, but they know the outcome if she isn't able to get lungs.
Meanwhile, Jessie is proud that she and her daughter have been organ donors themselves for a long time.
They became donors after Valerie had another health problem when she was 11 years old.
Jessie said her daughter had a tumor on her leg, and doctors at Geisinger had to crush up someone else's bone in order to make her daughter's leg stronger. The tumor was cut out, which was embedded in her bone, and the crushed bone from a donor was needed to fortify her leg.
Jessie and Valerie are grateful to area residents, who have helped them with lodging, gas, and food expenses and bought Jessie's potholders, which she makes and sells to raise money for her daughter's lung transplant. The expensive costs associated with Valerie's care and treatment are all the more difficult because Jessie had to quit her job in order to care for her daughter.
"We have a beautiful community that has helped us a lot," Jessie said.
Jessie and Valerie have a private Facebook page detailing Valerie's health battles, titled "Valerie's Journey." Jessie said anyone wanting to access the "Valerie's Journey" Facebook page should contact her by phone or through her own Facebook page under "Jessie Jo Zander." Jessie can be reached at (570) 364-5655. Anyone wanting to assist the family can also contact Jessie at this number.
Jessie thanks her husband, Greg Zander, who helps out and drives them to Pittsburgh, providing "good moral support." Valerie's older brother, James Kisner, also provides assistance.
Eric Hrin can be reached at (570) 297-5251; email: firstname.lastname@example.org.