I feel my PH journey started with my struggle to get diagnosed. I had been steadily getting more breathless and tired and having blackouts and fits, I was treated for inner ear problems, told it could be my weight or stress (becaused I had lost my mum and had to give up work as a secretary due to Repetitive Strain Injury) and although a chest x-ray showed my heart wasn't pumping right I was told they needed to get my fits sorted out first. Even the Neurologist said all the tests ruled out Epilepsy but he wasn't convinced!
I eventually saw a locum GP and she said I had a heart murmur (I had been born with one but the usual GPs said there was no trace of it) and referred me to a cardiologist. He diagnosed an enlarged heart, gave me Beta Blockers which caused more blackouts and I started to go blue. I ended up in my local hospital where Drs noticed I had a problem with the right side of my heart and gave me Verapamil.
I had an Angiogram at Harefield Hospital and on the 14th Decemeber 1998, the same cardiologist that gave me the Beta Blockers told me "it was a bit of a bummer but I had this condition (IPAH), we could try the old rat poison but if he was a betting man he wouldn't lay money on it working"! Thankfully he had a lovely registrar who arranged for a colleague who actually knew about PH to talk to me & my husband and gave me hope again. They told me I could try Diltiazem and Warfarin but it may not work, however I had noticed a slight difference with the Verapamil so I was positive this was going to help. As you can imagine it was a very emotional time and I tried to make it a Christmas that my children would remember, thinking it could be my last one.
By April 1999 I was on the transplant list for a heart and lungs, however because the medication seemed to be helping I was adamant I wanted to put that off as long as possible and even refused it when I got a call because I was seeing Professor Higgenbottom in Leeds the following day to see if I could have Prostacyclin instead. He didn't think I was sick enough for either the drug or a transplant which reassured me so I pushed my illness to the back of my mind and tried to get on with life.
In 2001 I was asked to take part in the Sildendifil trial which thankfully worked and I have taken it ever since. I am always willing to take part in studies or trials and although medication doesn't always work that's the only way that treatment can move forward and feel that even if it doesn't help me it may help someone else. Eventually Harefield moved me to the wait and see list for a transplant and I have never looked back.
I tried to fill some of the boredom by going to art classes but still felt exhausted and kept thinking perhaps it was because I had no purpose in life. My daughter was 11 and my son 19 by this time so in 2003 I decided to go back to education, still with the hope that a cure could be found and that I could eventually go back to work. I completed an access course which enabled me to then do a degree. I graduated with a BA Hons in Sociology and History in 2007 and although I haven't used it for employment yet I felt it was a huge accomplishment to complete it with PH.
It has been an emotional journey going from thinking that I would never see my children develop into adults to eventually becoming a grandmother to 3 gorgeous grandchildren. I now fill my time with helping to amuse them during the holidays, various arts and crafts and have even joined the Women's Institute. Although I don't relish getting old, it is great to think I will be celebrating my 50th birthday next year when after diagnosis I didn't think I would reach my 33rd.