Living Many Years
I was diagnosed with PH in 1987. I had been sick for close to three years before I got the correct diagnosis. Growing up I had asthma so when I told my doctor that my breathing was worse and I was getting tired my asthma was treated more aggressively. After a couple of months and no response to the new asthma medication I went back to the doctor with the same complaint. The difference that time was the fatigue had begun to set in. He then ordered an EKG and chest x-rays. My diagnosis changed, I now had a prolapsed Mitral Valve and I needed medication for that instead. I went home with my new prescription hoping this would help. Well it didn’t. After a few phone calls and more visits to the doctor I was then told that it seemed I was having anxiety attacks and suffering from severe depression.
Of course I was depressed! I was 24 with a great job and going to school. I always thought I was invincible and could do whatever I wanted, but every time I went to my doctor I was told something different and I felt horrible. I was missing time at work and I had to cut down on my classes. My social life was being affected; I just couldn’t keep up with my friends. I tried all the medications, I went to the psychiatrist and I rested. I knew something terrible was going on but was almost afraid to say anything. I already felt like maybe I was a little “crazy?”
One day after work I was walking up the stairs to my apartment and I passed out. I woke up in an emergency room. There were a couple of doctors and nurses around the bed who began to ask me questions. They were concerned and confused. I was admitted and more extensive testing began. I had my first cardiac cath in April of 1987. The surgeon came into my room and had three very short sentences. You have Primary Pulmonary Hypertension. You cannot have children, there is no cure and if you don’t have a heart and lung transplant you will not live beyond 2 years. Honestly when hearing pulmonary hypertension I didn’t think it sounded that bad and there was a sense of relief because now what I was feeling had a name. Then everything in my world came to a screeching halt.
I had to wear oxygen all the time, I had to move to a first floor apartment, I couldn’t only work part-time when I felt well enough and I was done with school. Life as I perceived it at that time changed completely. I no longer felt invincible. I felt so alone and hopeless.
Life as I perceived it at that time changed completely. I no longer felt invincible. I felt so alone and hopeless.
In 1987 there were no medications available to treat PH. There were no support groups or PHA to help patients. There were less than 200 diagnosed patients and I was one of them.
I was in contact with the N.I.H and N.O.R.D. All of the information I received I gave to my doctors. I had been referred to the transplant program at very large hospital in Connecticut. They took care of me the best way the new how. I didn’t want a transplant – it was a terrifying thought. They were patient with me.
This all happened over 28 years ago. I remember thinking if I lived to be 30 I would be lucky. I am 52 and I feel great. Yes I have pulmonary arterial hypertension. It is genetic in my case and I have lost a brother and sister to this disease. I also have a younger sister in N.Y. who is a ph warrior.
This all happened over 28 years ago. I remember thinking if I lived to be 30 I would be lucky. I am 52 and I feel great.
This disease is something I wouldn’t wish on anyone. It is a roller coaster ride that goes on endlessly without any stops along the way, and yet I have many blessings in my life that I know are because I have PH. I have met some pretty amazing people with this disease and the incredible medical community that fights with me. I have a new appreciation to the small wonders of daily living. I am alive and kicking!!
I love to help others with this illness whether they are newly diagnosed or someone that has had it for a while and just needs to talk. I have many commitments to help others. I work on advocacy for our legislation, I do awareness activities, and I help with our international conference, etc.
I am heavily involved with the ph community because it helps me. I now know I have a special purpose and my voice counts. I have hope for myself and for everyone that may read this.
My take away message is “Always have Hope and Never Ever Give Up!” Be sure to laugh out loud along the way
We are inspired by Diane and her continuous desire to help the PH community. This month Diane is walking 75 miles to raise funds for the PHA Research Registry. Read more about her effort to walk PHAR for PH here (and please donate to her cause today)!