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The Staff of Living With COPD

Bill and Jan told their story in the stories feature of this site.  You may read these stories by clicking on the photograph of the individual.
 
 

Papapoo Bill Powell

Jan Frankie Artist

Alisa is our humorist and the only member of the permanent staff who is not afflicted with COPD.  However, she has had two lung transplants brought about by Cystic Fibrosis!  Here is her story.
 

Give  The Gift of Life! Be An Organ And Tissue Donor!               Wouldn't It be nice if you could just go to the corner store and buy a lung?

Alisa lived most of her life in the Chicago suburbs.  Even with the complications it carried with it, her disease did not ruin her childhood.  She was a member of advanced reading groups, the Student Advisory Board, the Yearbook Staff; the Drill Team and even took Spanish classes.  In high school she had her artwork displayed in a district show and was a member of the elite dance company, called ORCHESIS.  Her dance troupe was good enough to perform at Arie Crown Theater, a famous theatre in Chicago.  Unfortunately, her problem was diagnosed and treated as “allergies”.  In February 1979 during her senior year in high school, she was properly diagnosed with CF.  Alisa grew up with parents who were heavy smokers and drinkers.  Fortunately, she did not have the same addictions, and despite the problems inherent in CF, graduated 64th out of a class of 544. Alisa went to college for a year but quit because she was bored.  Instead, she went to work to support herself. She has always enjoyed listening to music, singing, writing poetry, stories, and other prose as well as being creative, dancing, telling jokes, making up jokes, and developing greeting cards.  She loves to travel and once accompanied her husband, Rob, to England on a business trip.  Having no children of her own, Alisa enjoys spending time (and spoiling) her nephews and nieces. In October 1995, she became a Godmother to her nephew, Anthony, and is quick to point out that without a lung transplant, she would not have lived long enough to be so honored.   Anyone who has a lung disease of any sort has a serious ailment to consider and a discussion of CF is beyond the scope of this web site. While we do not want to minimize the seriousness of COPD, it would well be worth the time to read the unbelievable trials and tribulations that this remarkable young lady has endured. We include this information because it tells the real story of who Alisa is and illustrates that despite these extremely difficult episodes, she has remained a  fighter. Her attitude can well be a role model for us all. In the early 90’s Alisa’s condition began to worsen and she endured all the hell of someone with CF.  In and out of the hospital, pneumonia, malnutrition and supplemental oxygen were the indicators of the need for new lungs. To try and gain weight, and improve her nutritional status before the first transplant, she had a G-Tube surgically inserted into her stomach on March 11, 1993.  That day she hemorrhaged, because the tube was not attached tightly enough to the stomach wall.  She was getting liquid supplements directly into her stomach up to 16 hours a day - not a pleasant feeling.  On September 26, 1993 she received “The Gift of Life”.  You would think that the story would end there with the typical  “They Lived Happily Ever After,” but that was not to be.  Unfortunately she had chronic rejection from the beginning and while there were many happy times, they were unable to halt the rejection process.  During this time she developed Insulin-dependent diabetes, high blood pressure, excessive body hair growth, jaw stiffness, herpes mouth sores, CMV, ear infections, a pneumothorax (caused during a biopsy procedure), erosion of her esophagus, sepsis caused from intestinal infection (which narrowly escaped emergency surgery because the symptoms mimicked those of appendicitis). In addition, she had a Port-a-Cath surgically inserted into her chest. While the doctors tried to stop the rejection with Solu-Medrol IV treatments, Oral Methotrexate, radiation therapy, Plasma Pheresus (with and without Gammaglobulin), and Photo Pheresus, her survival depended on a second transplant. On August 15, 1998, after two false alarms (and eight wrong numbers on her beeper), Alisa received her second double lung transplant just 8 days before her 37th birthday.  Since her second transplant she has had lung infections, outpatient groin hernia surgery, skin lesions removed, Pinkeye, allergic skin rash to antibiotics, severe pain, nausea, tremors, insomnia, and many other complications.  However, she has not seen any evidence of rejection of the new lungs.  For that, we can only say, "Thank God!" Once again she is enjoying spending time with friends and family members.  She spends a great deal of time corresponding with her newly acquired friends from the Second Wind Lung Transplant Support Group.  She still enjoys creating greeting cards, writing jokes, reading, watching movies, and listening to music. Alisa also enjoys decorating clothing and other textile items with free-hand painting which she gives away as gifts.  She believes that  humor has brought her through many traumatic situations, and besides sharing love with others, she surmises that sharing laughter with others has magical results. She has slowly learned the ins and outs of  her  home computer, although she still considers herself an amateur in the world of Cyberspace. Unlike most people, she is proud to reveal her age whenever anybody asks her.  She feels lucky to have made it this far, and hopes to live many more years. Says she, "I am positively an advocate of Organ Donation, and I am living proof that the 'Gift of Life' is a splendid gift, indeed".. Click Here  For more information including the 10 misconceptions about donating as well as a  printable organ donor card.