I need to preface that my brother died from pulmonary hypertension in July 1988. At that time he was on the heart-lung transplant list at Pittsburgh and Yale. After watching him become weak and eventually make the decision to remove oxygen and life support, I did not think much more about the disease.
I have always been an active person, maintaining an annual health plan, running two miles a day, and meeting all physical standards of the Army National Guard and Reserves, spending active duty in the field conducting and evaluating units. I would climb stairs instead of using escalators and elevators.
Then in August 2001 while flying from Philadelphia to Munich, I became dizzy and fell in the aisle, got up and then fell while blacking out. I woke up with a stewardess monitoring my blood pressure, a doctor straddling me, and a male nurse taking my pulse. The first thing I heard was he could not find a pulse. Second, my blood pressure was significantly low.
There was communication between the doctor, pilot, and the ground. The pilot was ready to turn the plane back to Philadelphia, but I said, let’s land in England or France, otherwise the other passengers would be angry with me. Anyway, I was stabilized and lay on the floor of the aircraft for about five hours.
When we landed at Munich, it took about 20 minutes for the doctor on board and the doctor at the airport to make the transfer. My baggage was brought to the ambulance and customs was also done at the ambulance. As soon as I was cleared, I was taken a local hospital’s emergency room.
I was able to clean up, get a change of clothes, and take a number of tests. They wanted to keep me over the weekend and conduct additional tests, but I signed myself out for I was on vacation.
When I returned home two weeks later, I contacted my internist who gave me a complete physical, saw a change in my EKG, and called a cardiologist to see me right away. I took a battery of tests and finally saw a pulmonologist who referred me to a colleague who had just finished a fellowship.
He gave me a quick synopsis of pulmonary hypertension, that there was only one therapy approved by the FDA, Flolan, and he wanted me in the ICU as soon as the insurance was approved.
I entered the ICU and stayed five days. The first day I had both a right and left heart catheterization, an increased dose of Flolan until I had an adverse reaction, and then was given a milder dose with oxygen.
A nurse from Accredo (formerly Gentiva) came to the hospital and trained my wife and me to mix and understand the daily routine of treatment. She came several weeks to my home. I was on disability for about three months, but was anxious to get back to work.
In February 2002, I began my return to work starting at about 50% and increasing about 10% more each month. I also attended the local support group that met every other month. When I got up to about 90%, I made the decision that I couldn’t work full time or compete with the younger colleagues so I decided to retire. I was asked if I would continue part-time and agreed to work up to 800 hours a year which became 1,000 hours.
I now attend two support groups that are in Connecticut and assist other persons who have issues of family and loss. I have been a military chaplain for over 20 years and also am a licensed clinical social worker. I am available to meet or speak with anyone who has pulmonary hypertension or a family member.
My work activity is working with religious groups in reducing their exposures to accidents and losses and conducting education and training programs. My assigned territory is New England and Westchester County, NY. The rest of my time is spent reading, playing games on a computer, and watching television.
My daughter lives in Norway and I visited her a couple of years ago. I met with several persons with pulmonary hypertension in the Oslo area. I also needed to get some supplies from a local hospital because my supplies were held up at customs and never got to me and spent some time with the physician and nurses at the ICU.
I can no longer do many of the activities I used to, but I can walk, drive, and travel by plane and boat. I like to travel and see new things, sit on the beach and read, speak with people about anything interesting.
I am currently on Flolan, Tracleer, and Ravatio. I try to be as independent and I can be and try to keep a positive outlook on life. When I was diagnosed in 2001, there were about 60 others in New England. Now there are more than 100 in Connecticut and over 400 in New England.
Newly diagnosed people have several choices for treatment that were not available four years ago. With the sponsorship of the Pulmonary Hypertension Association and the commitment and perseverance of several members of the medical community, there is a unique collegiality of physicians, nurses, care givers, and patients. Seminars are held throughout the year as well as an international gathering every two years.
I attended the PH Conference in Miami and the education and networking was phenomenal. I also participated with the American Thoracic Society Workforce Committee and attended a meeting in Washington with a representative of the Association of American Medical Colleges and met with congressional aides of the States of Alaska and Connecticut.
My personal concern is that I am one of the patients who has a genetic mutation and I am concerned for my two adult children and my four grandchildren. I look forward to the Conference in Minneapolis and a tour of the Mayo Clinic.