NZPAH Trust and Support Group

Supporting, educating and promoting awareness of PAH

My Story by Susan


SusanI was diagnosed in June of 2011.Its one of those life events that stand out mainly because of the shock of it. I was devastated. I saw my whole future just disappear in a heartbeat. I was told 18 months to 2 years was all I had left. I left the office with my husband and cried my eyes out in the carpark.


It got worse in the days ahead and each morning I woke and the first thing I thought was ‘I am going to die”. Well, of course everyone is but I just hadn’t thought it would be so soon. I was 53. I had Lupus and Raynauds and Asthma but I had cheated the grim reaper with all of them. I was getting a bit cocky even thinking I took such good care of myself that everyone around me who took their health for granted would expire first! I thought no one around me understood afterall it wasn’t happening to them. This isolated me even further and I slipped into a deep hole.I waited to be seen at the clinic as as it took awhile I developed the idea that they were going to let me die because I was so bad.


To make things worse at the same time I’d been diagnosed with Limited Scleroderma and told there was no cure.I stopped dreaming even, felt all was hopeless and the only thing that kept me going was “training” for the 6 minute walk. I was going to prove I wasn’t a “goner” yet by crikey!
In the meantime I mulled over what had led me to this diagnosis. I had been short of breath for years. Well, I had asthma but my kids kept saying “Mum, why do you stop mid sentence to draw another breath”. My husband would say”Geez, you’re unfit woman” as I attempted another set of stairs. I decided through the years I had the wrong inhaler, several times I had a spirometry test and they said I must be using my inhaler improperly. I promised myself not to mention it again to anyone as I was obviously unfit or old or both, and no-one was listening to ME anyway.


In 2009 I got the ‘flu despite vaccination and ended up with a mild dose of pneumonia and was admitted to hospital. They said I hadCorPulmanole heart waves and had chronic Bronchitis. So this was it, I decided. Following that I got bad asthma and needed a huge dose of prednisone to get me over it.But at least I knew what it was. I got a Pneumonia shot. I had begun to think a dose of flu would kill me.


It wasn’t until we went to a sports game and had to walk some distance to the stands(for which I had been “training” for) that I nearly passed out. I felt terribly ill and decided it was my Lupus and I better get it reassessed.  I found a new specialist and he suggested a new medication but first I had better get my lungs checked. So off I trundled for a Lung function test. No good they said. You have lost 30% of your lung function. From there it was for an echocardiogram and also a lung CAT scan. Everything showed abnormalities and the Respiratory Specialist said it didn’t look good. Something was very wrong. From there it was to a Cardiac Specialist who broke the awful truth to us.


Well, finally I was seen at the clinic, the doctor sounded serious but positive they could do something for me. All was not lost. I came out stunned but hopeful. I survived the dreaded 6 minute walk!  I was introduced to Sandy and Allan Edmondson. There was Sandy with her oxygen on and her mini cylinder in a shopping trundler.” Come with us they said” and we were whisked off to the support group.
 That was a red letter day for me. I met the most amazing group of positive caring people I have ever met.We even had a few laughs that day! Something I had forgotten how to do!! I met people who were worse off than me but still so positive. “If they can manage, I can” I thought. I CAN do this and I am not alone.


Subsequently I was given my medication, Viagra, some of us call it Sidenafil because of all the silly jokes out there but whatever you call it, it’s a lifeline to a better life. It’s no wonder drug but it does make life easier.I have learnt to adjust my life with tips and ideas from my mates at the support group.Life is actually VERY good. I am still alive, and have a new appreciation of family and friends. I have realised being something of a hermit and non joiner that we all need people. I have things to do yet. I have joined the Board of NZPAH and started our FACEBOOK group so there is always someone there if you need a friend or just a listening ear.


The support group members have become real friends who I can count on for information and support because, oh, you do so need it. This is an invisible disease and people do not understand. You really do need help and you only have to reach out and we will be here for you.


Which is why I joined up? So no one has to feel alone and despairing like I did. You will NEED people.


We are here. NZPAH. Reach out……


May 2013