Almost 18 years ago, I was having nausea and felt like I was going to pass out frequently. I had been to the school nurse and she gave me Pepto Bismol. The urgent care gave me medications for nausea, but they made me sleepy and I couldn’t take my finals, so I stopped taking it.
One particular day, I had been doing inventory at the bookstore at my college and I went home feeling pretty bad. That night (May 8, 1990) I went to the bathroom to throw up and I passed out. The ambulance was called. They made me walk to the ambulance. Oh my mother was hysterical.
They did a pregnancy test, which was negative. They did an EKG and it was abnormal. They asked me if I had ever taken diet drugs—this was prior Fen-Phen, but there were others out there. They asked me if I did illicit drugs. All of these answers were “no”. I had been anemic for about 4 years but that was from not eating right. That week I had ultrasounds, had an echocardiogram in which the technician said that I had a hole in my heart and that it could be fixed pretty easily.
On Friday, May 11, 2000 I had a heart catheterization and they diagnosed me with primary pulmonary hypertension. They told my family that I had six months to three years to live and that I would never be able to have children. I was set to get married May 11, 2001, after graduating college. So, essentially they said I might not even make it a year.
My doctor started me on 30 mg of Procardia and coumadin. I was referred to the Mayo clinic in Rochester for a second opinion.
In July of 2000, my family and I flew to the Mayo clinic. I felt like crap—I had oxygen on the way there but didn’t wear it. After about ten days of testing, they put me on 240mg of Procardia and Coumadin, and they evaluated me for heart lung transplant. Thank God for my parents, especially my mom, who had to make some hard decisions about tests and treatment that would benefit me. Even thought I was a young adult, it would have been too overwhelming for me to decide. They told me to come back in a year. I wore the oxygen on the way home and felt a little better with it. Of course, I didn’t fly for ten years after that, but that is another story.
THE FIRST YEAR
Fast forward a year. I finished out my college career by student teaching. It was a horrible experience and I didn’t know how I would ever teach school. In one month, I graduated college, got married and traveled to Barnes Hospital to be evaluated for lung transplant. They determined that I was doing well on my meds and that they would just put me on the list to build up time. Back in those days, the longer you were on the list, the higher you were on the list for transplant. So, they put me on the list and I went on my merry way.
This is where I first met another person with PH, who told me about UPAPH and Pathlight. So I looked them up and ordered that past year’s worth of Pathlight, and that is how I got involved with PHA.
GETTING ON WITH LIFE
Well, I got a job at the newspaper because every teaching job that I applied for wanted a coach. I knew that I could possibly make it through the day teaching, but never all the extra stuff that goes on for coaches, etc. I worked at night and substituted during the day. I was, essentially, working all day. During this time my PH was pretty stable. Things were rocking along. I was going to St. Louis about every year and getting checkups. I was taken off the active transplant list when I reached the top at 792 days. They said I could go back on at any time. I had my tubes tied during a visit to St Louis because they would not touch me in my hometown because I couldn’t be put to sleep. I separated from my husband. He didn't understand all about PH and that I could die if I had children.
At this point, my mom was paying for COBRA insurance—it was very expensive. Neither substituting nor the newspaper job provided insurance so I started looking for one full time job to support myself and get insurance. My stepfather had worked for State Farm for many years. I had State Farm insurance for all my driving life. I really liked the company. I interviewed for some claims jobs, but they wanted me to move. I couldn’t really do that so I took a job at a local State Farm Agents office. In 1994, I started with a new agent.
MY FIRST PHA CONFERENCE - 1994
In 1994, I attended the first ever PHA Conference in Stone Mountain, GA. My boss didn’t know I was sick. I just told him I was going to a conference; he didn’t ask why. This was where I got involved. I had some contact beforehand with the conference committee. They needed stuff for the goody bags. So, I went to Conference and took all kinds of stuff from State Farm for the goody bags. When we got there, we helped stuff the goody bags. I also helped with assigning room hosts and I acted as a moderator for one session.
At this time, I think I started doing membership. I kept up with the members by state. I received new members and then sent them to regional contacts. I think registration for that conference was $95 for a patient and that included the room. My mom, step dad and husband attended with me. My husband still didn’t understand the whole issue about children. Even after talking to the doctors. This was the weekend that OJ Simpson ran from the police and they captured it on national TV. We will never forget that conference weekend. That weekend was great because we got to meet other patients and family members that were dealing with this disease. I met Ed and Judy Simpson for the first time. Teresa Knazik, the author of Pathlight was there. Pat and Jerry Paton were also there. It was just a great experience.
I have the results from the survey in 1994 and there were 127 people that completed the survey. 54 were patients. Most of the things that were evaluated were deemed very valuable. We did blood testing at this conference also. Way ahead of the times.
My 2nd PHA CONFERENCE - 1996
Well, since the last Conference I divorced my husband because I was tired of defending myself about not being able to have children. My pressures were increasing from the stress of my relationship with him, and I had to go up on my medicine. They tried to start me on Flolan in February of that year but it was not approved. I told them that I felt better and that my pressures were down. I was right. I continued the same regime of medicine.
Again, Conference was in Stone Mountain. Again, my mom and stepfather were in attendance. My future husband was there also. We had a system. I told them what sessions I wanted to go to—they picked the sessions they wanted to go to and we spread out.
My future and now current husband had been a friend of the family. He remembers when I went to Mayo when our family was going through all the issues with my sickness. When we met, he knew about my illness. He had a two year-old son and understood that I couldn’t have children. Luckily for me, I became a bonus mom when we married later that year. What a blessing for me!
This conference was even better. We got the hang of this stuff now. More people were in attendance. We even helped the Wojo's get some drums so that they could play for us. What a great time! I think this was the conference that Dr. Tapson did his limericks. Hilarious! I think this is when they started hounding me about being on the Board of Directors. I attended the board meeting at conference that year. I declined the invite because of all that was going on in my life.
To come - the other 5 conferences I have been to, how I got involved in support groups and fundraising.