OUR JOURNEYS

Caregiver story

Pat GunnPat Gunn

In 1993 my husband, David Gunn, and I were living in an isolated area of far west Texas, ranching. We had a son, who was graduating from high school, and a daughter, who was attending a university in Texas. David had not been feeling too well for awhile. In February of that year he had had to "walk a fence" that we had just had built. He had a terrible time making the walk back to the pickup. Later that same spring he was burning some salt grass so that the new lamb and kid crop could eat the new growth when a gust of wind caused the fire to get out of control. He said that he felt as if his legs were made of lead when he tried to get into the pickup to call for help. He KNEW then that something was terribly wrong.

He was diagnosed in May of 1993 in San Antonio, Texas, with Primary Pulmonary Hypertension. The doctor told me that David could not live for long because there was no treatment, and there was no cure. He told me to take David home and get his affairs in order – he was 42 years old! The doctor also told me to not say anything to David because of David's depression at the time.

Of course I called my mother and cried and cried. She told me to tell David the diagnosis, and to talk and pray together – she would be praying, as would my whole family. I told David. We cried together!

David as adamant that he was going to finish the rounding up and shearing in July. I begged him to not do it, but he persevered! When it was finished, we left for Chicago to visit with Dr. Stuart Rich.

I had not taken the diagnosis "lying down" so to speak. I called every doctor I knew; read every book I could find; I even called the networks that presented Dateline, Primetime Live, and 20/20 to see if they had any research on the disease. I finally got in touch with the Jewish Lung Hospital in Colorado. I talked to a nurse, who in turn put me in touch with Bonnie Dukart in Long Island, New York. Bonnie was the first person who gave me hope. I could hear her son, Brian, in the background--I thought, "She has a life." She gave me the name and number of four areas in the United States that could at least see David. She also said that Dr. Rich was her doctor, and that we should try to get in to see him as soon as possible.

We were in Dr. Rich's office in September while he was still at UIC. He tried David on calcium channel blockers, but David did not respond. We came back to Texas to wait for an appointment to have David put on Flolan.

In October, we went back to Chicago where David was put on Flolan. He stayed on it up until the nurse in the CCICU asked me to turn off the pump July 23, 1999, the night that David died.

David and I had so many laughs and fun moments in all of our years, but most especially from 1994 to 1998. We lived each day for what it had to offer--no more--no less. Yes, we panicked at times about the reality of what could happen, but we made a conscious decision to not live in fear.

We got involved with PHA almost at its inception. We went to all of the conferences. We volunteered at the second conference to do whatever the "new" president, Bonnie Dukart, needed. It was also at this conference that we met Bonnie. What a tearful, joyful moment that was!!!!!!!! I volunteered to chair the conference planning committee for the third and fourth conferences. David planned the board meetings. We sent out the new patient packets. David kept count of the volunteer hours. David distributed grant money to those in need of help getting to the conferences. David also served as an officer. I'm sure that there are other things that he did, but I cannot recall them at this time.

The people that I've met through PHA are my "family". I hurt when they hurt. I cry when they cry. I am overjoyed when each one takes a giant step toward maintaining "normalcy". The conference is that lifeline that connects us to each other. I pray each day for a cure – until then we have HOPE!

 

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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.