Bonnie Dukart, who served as PHA's president for 3 years, died on January 19, 2001. Bonnie's life was a gift to the PH community. She was the rock upon which PHA was built. Here is her story:
I was diagnosed with PPH in January of 1982. I knew that I got more short of breath than my friends, but had no idea that I suffered from a fatal disease. A snowstorm and chest pains brought me into the emergency room of North Shore Hospital on LI. The cardiologist on call was Robert Dresdale, son of the late David Dresdale, who identified and named this disease in the 1950's.
Within a week, Dr. Dresdale's initial diagnosis of primary pulmonary hypertension was confirmed. I was 25 years old and I was given approximately two years to live. At first, nothing brought down my pulmonary artery pressures (PAP). The doctor then came in and told me about a very new drug called Procardia. He asked me whether I wanted to try it, and told me that the drug might help me or it might kill me.
I decided to try the drug, and it worked. My PAP went down and my cardiac output went up. We had no idea how long this would last.
Over the next few years I worked as a banker for a large New York Bank, becoming one of the youngest female vice presidents at the age of 31.
I worked in operations and then in marketing. I managed with this disease by using flextime so that I could get a seat on the bus or train and by working smarter, not harder. I didn't have the stamina of my colleagues so I had to make sure that I worked efficiently. I used the weekends to rest.
Since my PPH was stable, we decided to adopt a baby. I worked until our son was 18 months old and then decided to stay home and enjoy being a mother. A variety of volunteer work in community services and a part-time job assisting the comptroller of a local organization was a good mix with motherhood.
My PPH was stable on certain tests, but I knew that I wasn't doing as much as I had been. I was very worried because I didn't know of anything else that could help me. It was the early 1990's and my son was in nursery school. My husband has always been supportive, but it was still a scary time.
In 1992, I started researching PPH on the internet. I found UPAPH (PHA under it's old name) and a wealth of information on this disease. I had spent 10 years thinking that I was almost the only PPH survivor. We had read articles that stated that Procardia hadn't worked for very many people and if it worked, it was only for a short time. I was pleased to find other people like myself, long-term survivors with this disease. After a few months of phone calls and correspondence with other patients, I flew to Chicago for my first support group meeting. I had been diagnosed 10½ years and I was about to meet other patients for the very first time. When everyone told their story in the support group, I felt like I had come home. I wasn't alone anymore. Here were people who understood exactly what I was going through. I was also pleased to find out about a then experimental drug called Flolan and the possibility of lung transplants.
At least there were other options.
I went back to New Jersey and started a support group there. People came from as far away as Philadelphia just to meet other patients. We were a small, but close group. We were a very lucky group, too. Four out of the first six members are still alive. The other two died because Flolan didn't work and transplants just weren't readily available or very successful.
I switched my medical care to Dr. Stuart Rich in Chicago. After a week of those "fun" tests and discussions with my husband and myself, it was decided that I would try a new calcium channel blocker called Norvasc.
The drug was absolutely wonderful for six years. I studied martial arts, rode a bicycle, traveled and was able to do a multitude of household tasks each day. As my husband noted, I had very few "couch days", those days when all PPH patients want to do is sit on the couch and do nothing.
I also started volunteering for UPAPH At the beginning I took calls from patients, set up the mechanics of our hotline and did a limited amount of PR work. As the years went on, I co-chaired two of our conferences, got volunteers to set up our first web site and set the pieces in motion for volunteers to write and review the book, "Pulmonary Hypertension: A Patient's Survival Guide. I also raised money for our first leadership training seminar, hired our first employee and in general brought PHA from a kitchen table organization to the point where we needed, and hired, an executive director. In 1999, after finishing as president of PHA, I began PHA's fundraising and research program with the help of many able volunteers. In one year we raised enough money to award three research grants to researchers in the field. This year we hope to do even better.
My health started failing after the 1998 PHA conference. At first the decline was slow, but after a number of months the deterioration was rapid. In August of 1999, I entered the clinical trials for United Therapeutics new drug, UT-15. Unfortunately, I was placed on a placebo and my health declined. Most of my days were couch days. I couldn't cook, clean or even go to the store. My husband did everything. My son helped out as he struggled with the reality of having a sick mother.
In October of 1999, I finally got the real stuff, the real UT-15. And, it worked! I was so thankful. The improvement was very slow, but steady. At a little more than five months on the new drug, I can cook, shop, take classes, take care of my son and lead a somewhat normal life. I have very few couch days. I am looking forward to the time when I can do everything again. We are anxious to take my bicycle down from the hooks and get it geared up for the nice spring weather. We hope to resume traveling this summer and have already begun to entertain and socialize again. My son is finishing his first year of middle school and looking forward to a great summer. My husband can finally be a husband again, instead of a caretaker.
I am very grateful to be able to see each sunrise and enjoy the little surprises of each day. Even doing the laundry is a pleasure. With all of the new treatments on the horizon, I am also looking forward to the day when this disease is cured and the day when I can ride a bicycle with my yet-to-be born grandchildren.