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Smith sets sights on lung transplant
Hope. That's what lays in store for Amanda Smith, as she prepares to move across the state. Amanda lives with her parents Leon and Kathy Smith, in a modest home on a quiet country road just east of Nevada, but she and her mother will move to St. Louis soon, so they can be near the Barnes Jewish Hospital, where Amanda will eventually undergo surgery for a double lung transplant.
Amanda's need for a lung transplant follows a long history of treatments that began when she was diagnosed with leukemia at age 16. She had a stem cell transplant in the fall of 2000 to treat the leukemia. After seven months in the hospital, she went home and has now been in remission for nine years. Smith missed her junior year of high school, but she returned as a senior to graduate and go on to earn a degree in graphic design from Pittsburg State University. She moved to Kansas City and found a job and was going back to school to become an X-ray technician. Breathing difficulties plagued her all the while.
Her doctors kept telling her it was asthma, but the breathing difficulty continued. "It took them eight years to figure out what it was," Smith said, but doctors finally diagnosed Smith with constrictive bronchiolitis. The stem cell transplant in 2000 has caused her body to reject her lungs. Amanda's lungs do not expirate all the air taken in so there is little room for the air that she does inhale; a lung transplant is the only way to alleviate the condition. Her condition forced her to quit her job and school and move back home with her parents to prevent her health from deteriorating further.
Now 25, Amanda finds herself forced into a one-sided situation, so in order to be near the hospital and prepared for what may be a short notice procedure, she and her mother are moving to St. Louis. "We have our apartment; we're ready to move," Kathy said. She will accompany her daughter as the "support person" required by the transplant program.
The Smiths' time in St. Louis will not be idle time. "They want me to be there for pulmonary rehabilitation and to track my condition. It's frustrating trying to get things done, going to St. Louis, and then waiting will be the hard part," said Amanda.
The Smiths say they will take in some of the attractions while they are there, but they don't have any idea how long their stay will last and they have to stay in the city, even during holidays, until everything is done. It may be as long as a couple of years, during which time Amanda's father, Leon, will remain at home and travel back and forth for visits during her stay. The apartment should be ready soon and they are planning on moving by mid-October.
Though she's not looking forward to the move or the surgery, Amanda isn't scared of it either. "She's never been scared of anything," said her mother. "I'm not really going to worry about the transplant until I get there and get on the list; I don't see any point in worrying about it," said Smith. "Just to get it over with and being able to breath is what I'm looking forward to."
In the meantime she spends a lot of time with her boyfriend watching comedies and horror movies. She reads a lot of mysteries and likes to work puzzles. She sees her friends a lot and has spent part of her time writing a couple of grant applications to help out with the living expenses they will incur in St. Louis. Her activities are hampered by the ever-present oxygen that she has to take everywhere she goes, but she still stays active. Sometimes to her detriment. If she tries to do too much she has to spend a bit of time recuperating.
And Amanda harbors no illusions as to the future; she knows that the real work will begin after the operation. She will be facing several months of intense pulmonary rehabilitation therapy and a lifetime of anti-rejection drugs. She will also be closely monitored for the rest of her life.
Amanda Smith is an extraordinarily brave young woman who smiles a lot and just wants to keep moving forward and live a normal life. "I just try to look to the future, like when after they get done with all of this, like all of the things I'll be able to do that I can't do now."
The financial burden for something of this nature is tremendous and Smith and her family are grateful for the support friends, relatives and the community have given, however there are ways in which the public can continue to help.
On My Own is sponsoring a drawing this weekend at their annual casino night. Two $100 bills are being raffled off and all of the proceeds will be donated to the Smiths to defray living expenses.
On My Own is also in the process of setting up a trust fund for donations. For more information contact On My Own Inc. at (417) 667-7007 or (800) 362-8852, or contact Amanda or Kathy Smith at (417) 667-6811.