NZPAH Trust and Support Group

Supporting, educating and promoting awareness of PAH

But You Don't Look Sick

 

JudithOn 5 September 2003, a visiting specialist from Auckland Hospital told me that I had Pulmonary Hypertension. I had never even heard of this condition before. He told me that Pulmonary Hypertension is high blood pressure in the lungs, and a small number of people with congenital heart defects, like me, get it. The doctor talked about some medications that were available here and overseas, and if medication didn’t work, the last resort was to have a heart/lung transplant. I was 42 at the time. How did I feel about this? I felt very alone. I didn’t look any different. I didn’t look sick, but I had just been told I had an illness that couldn’t be cured. I felt different and nothing would ever be the same again.


I suppose I had been getting out of breath for about 3 years or so when I think about it. It just kind of crept up on me. My husband suggested that I may be unfit - so I started walking, but never felt any improvement from it. I started to avoid walking up stairs or up hills if I could as I would get so breathless. I finally mentioned it to my doctor who wrote a letter of referral to the hospital. After an appointment with a cardiologist and many tests, the Auckland specialist finally gave me the answer to why I get so out of breath. By this time I was getting out of breath just walking across the car park to work.


Since then I have had several trips to Auckland Hospital for tests and a hysterectomy. Then I got a Medic Alert bracelet. I will be taking several medications for the rest of my life.


What is it like to live with Pulmonary Hypertension? I still feel very alone at times. I need regular tests to make sure everything is ticking along nicely. I still work part time, but some days are a real struggle and it is hard to stay positive at times. I have good support from my family, especially my Mum who comes to all my appointments with me. I have modified my lifestyle quite a bit since my diagnosis, but I still do lots of the things I enjoy.


While there is no cure for Pulmonary Hypertension at the moment, I live with the hope that one will be found in my lifetime.
Regards - Judith