Memorial story

Kelli Cornett

by her parents Allan and Virginia Cornett

“Why me again?” was our daughter’s thought in her challenge for life.

On a warm summer day in 1971 as Kelli returned from her annual eye exam, our robust, active fourteen-year-old daughter commented with laughter that the opthalmologist said, “There was something showing in my brain.”

And she told him, “I’ve rocks in my head.”

The recommendation was to visit a neurologist for follow-up diagnosis. We selected a physician; and after the initial bore-hole, a team of three neurologists then operated only to find an inoperable tumor on or near the thalmus. No biopsy was done for fear bleeding could not be controlled. After a long and difficult operation, a brief period of recovery was allowed before implanting a new “automatic” shunt for draining of fluid.

The challenge now shifts to thirty sessions of cobalt radiation at Swedish Hospital in Seattle. The mental and physical response on the part of our daughter was always positive. Leaving home at 8 a.m., Kelli would have her treatment and be in class by noon at the Anacortes Middle School.

Graduating with her class of 1973, and with additional study, she joined the staff of a medical records company in Seattle. Always very conscious of individuals and their problems, she could never have children, and the possibility of the tumor growing was always with her. Much of her time was spent helping seniors and teaching her faith to children.

Receiving her annual physical in 1993, the physician was not satisfied with his findings. She had flu-like symptoms most of the winter of 1992 and 1993 and concern about “fatigue.” He was also concerned about the possibility of a hole in the heart. Surgery at Providence Hospital in Seattle did not confirm a hole. Dr. Peter Albo and Dr. John Fleming suspected PPH and recommended the University of Washington Medical Center and David Ralph, Attending Physician, Pulmonary and Critical Care Center.

After heart catheterization and other tests, Kelli was found to have a rare disorder called Primary Pulmonary Hypertension, usually fatal. Cardiac catheterization showed pulmonary artery pressure greater than 100; normal pressure is less than 25. She was placed on some medications. Now what to do? She continued to work, found an apartment without stares and acquired a reserved parking space at work.

Our daughter’s first attempt with Flolan was a near-fatal disaster. This drug was still in the test stages; so when the proper dosage was resolved, progress was achieved. She always volunteered when asked by physicians and medical students to listen to her heart and observe problems with this disease. “Go for it” was her response for trying anything new for herself or others.

There were two attempts to determine if the shunt was still working. The first by medical students and physicians was to penetrate the shunt in the neck, which ended in failure and considerable pain for Kelli. The second attempt by surgery determined the shunt would not affect the Flolan procedure. The surgeon informed us that our daughter had died, but they revived her. We cannot convey our reaction upon hearing of this incident.

The PPH/PH Support Group at the University, of which our daughter was very active, and all support groups are critical for those with this same challenge for life. A special thanks to Gail Boyer Hayes for her outstanding participation and for the survival guide.

Kelli, after the PPH was becoming more difficult, signed up for a lung transplant, knowing at the time that survival for one year was 50% to 60%. It was now time for her to come home to be with family and friends. Visits to the hospital were only four hours round trip – no problem. On one visit, Kelli was hospitalized for a week in the cancer wing for critical care patients. My wife remained with her for company and to mix and change medication. Many nurses had little or no knowledge of the disease. Walking through the wing, Kelli would talk to patients, giving them her bright smile and words of love and support. Keep your faith and have a positive attitude. After all, she defeated a brain tumor 29 years ago.

One example of why it’s critical for PPH/PH patients to have family and friends aware of what to do in an emergency: at 11 p.m., a leak in the connection of pump to catheter resulted in “heavy bleeding.” We contacted emergency personnel for Flolan who talked us through the crisis. Sadly, we know of Flolan patients who do not even carry the backup pump and meds, much less explain and review what to do!

Late one evening in June 1997, our daughter became very ill. We rushed her to our local hospital. Then she was airlifted to the University where she died. Her question ,“Why me again?” still haunts us, and we have no answer. As an organ donor, she made it possible for two individuals to see again, one a career military officer. For this family, it is most important to remain positive. “Keep your chin up,” for surely the day and hour will come when PPH/PH are defeated. Stay active in your support group! Our appreciation goes out to Dr. David Ralph and his staff for their efforts and kindness, which will not be forgotten.


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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.