I had been feeling unfit for a while but exercise was not helping, in fact it made me struggle even more, and around 2005 I was running into problems with breathing and heart palpitations as well as chest pains, migraines, asthma and general fatigue. I was 41 at the time. After several stints in A and E and hospital, I was sent to breathing therapy, and I was told my problems may be related to hyperventilating and stress and possibly angina. At times it felt as if people thought I was a hypochondriac because often symptoms would settle down once I was lying down in a hospital bed.
Pulmonary Hypertension was detected in an echo cardiogram around this time but in the follow up echo this no longer showed so it was not pursued. I ended up in A and E several more times over the years and started seeing a cardiologist for misfires in my heart where the sequence of the heart contracting would go out of synch, and to help this I received medication to relax my muscles.
The cardiologist was increasingly concerned and ordered another round of tests and as a result of these it was in June 2010 that I was diagnosed with Pulmonary Arterial Hypertension as well chronic clotting to my lungs. I was referred to the PH Clinic.
At the time I was told I had about 3 years to live. I was naturally shocked and confused, I started thinking why me, how come this took so long to figure out, what it meant for my family etc. I was often angry that this had happened to me, and that it had not been picked up sooner.
After slipping into depression I was lucky enough to be introduced to some other PH/PAH patients. They were a wonderful bunch of people and helped me so much in coming to terms with this illness. I made some new friends and still find it very rewarding being able to chat to people who face the same challenges and who understand where I am coming from completely.
In the beginning I really struggled to open up to my family about what was going on even to the point where I initially decided to hide the diagnosis. This is one thing I really wished I had done different. Their support and understanding have made life so much better.
Another hard part of having PAH was asking for help at work and having to tell my work colleagues that I have a problem especially when it comes to heavy lifting, or working on cold mornings. They would often remark that I looked so well, and that I had put on weight etc. We usually don’t look sick when we have PH/PAH, at least not when it is well controlled, and as people are not familiar with this illness they do not understand how it affects us. Luckily I do work for a company that has been very understanding and supportive, especially those that work with me directly. I have reduced my hours a little and have more absences due to sickness than most but I am glad I am still able to work.
My PAH has stabilised with the medication I am on (Sildenafil and Warfarin) and the enlargement of the heart has largely subsided.
But at the end of 2014 I started to feel more breathless and fatigued than I had been for years and in 2015 I was diagnosed with Sarcoidosis to my lungs as well. This lead to a new round of medications which I am finding it harder to adjust to than the PAH medications I am on.
Learning to live with PAH is difficult especially if you are very active. I have learned to simply enjoy the things I can do without getting worked up about the things I can no longer do. I am trying to spend more quality time with my family, travelling around New Zealand or visiting friends and developing my interest in photography. Remaining active is important as well as learning to stop and rest when I need to.
My dear friend Franca, who passed away in October 2012 due to PAH, would often tell me to “take one day at a time” and that’s what I am trying to do.