Well where do I start... the thing is I have had Ph since I can remember, I am 37 now and have only been on drugs for just over a year.
I was born with Transposition of the Great Arteries and Ventricular Septal Defect. This caused my PH and is classed as Eisenmenger Syndrome. I have had a pretty normal albeit less physically demanding life. I have come across many ignorant people but then there are those special huge hearted people who just make it all worth while. You know who you are. I love to travel and have done so, I also love to garden and strangely enough am happy to work.
I never just developed or had the shock that many of you get at first, I always had a clear diagnosis and a fantastic specialist who I have known most of my life now. She has become almost like a mother hen to me now. I have good days and bad days and sometimes it can draw out to be a year or 2. There have been times when I was young that revelations were made such as, you can't have children and you won't be able to work, you will need a heart lung transplant but not yet, you will die young and all those things. The more that was revealed the more determined I became to live a full and long life.
My hardest time was when I was a teenager and all the revelations came out, you cannot relive physical pain only remember that you had it, but emotional pain is another thing. This is probably the hardest thing we all deal with. Saying this when we achieve something that we are not meant to do then the emotion of it is heightened and all the more sweeter.
I became real ill in Oct 06 and it was declared that would need a Heart Lung Transplant or try a new drug (Sitax) that is being tested..I knew this day would come but no one is every fully prepared. It could keep me off the list and give me a longer life if it worked. So there was really no discussion to be made about what to do, I had no choice in a way. Transplant is a last option and the drug may work. So signed up I did, and set about organising my will and Power of Attorney, much to the heartache of those around me. I had had a minor heart attack and 2 minor strokes in the last year or 2, with a number of lung bleeds, I needed to do something before I lost everything. I cut back my hours at work, they let me job share and I worked at getting my life back on track.
Today I live in Brisbane with my hubby (not really married) of 12 years with our furry child (Labrador retriever) Henry. Dennis has been my greatest support and I know that he suffers just as much if not more than I when things go down. He is always there to hold my hand, tell me that he loves me no matter what I throw at him and make me smile even when all I want to do is cry. I love Dennis and my life and would not change it for anything. (well maybe a cure)
I try to live my life as fully and normally as possible, try to stay positive and remember that I have come a long way from the little girl who was not going to live at all. My life expectancy has grown over the years and the last time I asked one of my specialists, he told me the sky is the limit, they just don't know anymore. Technical advances in procedures and drugs have opened up the world to us and given us the possibilities of becoming long livers, in the meantime I just deal with each thing as it comes.