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.
No comments:
Post a Comment