PHighter Friday: Karen S

I was diagnosed with IPAH 8 years ago at the age of 52, after years of palpitations and breathlessness on excretion. Prior to diagnosis I presented to my GP on various occasions with my concerns about these symptoms. Each time I was told that it was anxiety/depression and finally prescribed anti depressants. Despite the advice from my GP my concerns and symptoms remained.

I would become breathless during my household chores, especially vacuuming and climbing the stairs. My palpitations would start, or as I referred to them, my flutterings. I even called it my 'jelly heart'. I would joke to my family ''you will remember this when I've gone''. I never dreamed it would soon be so serious.
The breathlessness and palpitations continued and were now accompanied by dizziness. I would become dizzy just walking from work to my car. I knew it was time to return to my GP.

At that visit my usual GP was unavailable and I was seen by a locum doctor. I was not expecting much but to my surprise I truly believe that this doctor saved my life! He listened to me, examined me, and decided to send me for an ECG. There then followed a battery of tests at my local hospital which lead to a diagnosis of IPAH and a referral to Papworth Hospital. I had no idea what IPAH was. When I inevitably consulted Dr Google I felt like I had been hit with a sledgehammer. I was in turmoil, I panicked I didn't know what to do with myself. I wanted answers, why me? I was a healthy woman, I had never smoked or abused my body how could I have something wrong with my heart and lungs? The words 'incurable' and 'fatal' kept going round in my head.

After attending Papworth for a 5 day stay, I felt more hopeful as I was now on a drug - bosentan and had now been given a prognosis of about five years.

I was doing well on Bosentan but it suddenly began affecting my liver and so I had to stop taking it. I was then put onto sildenafil. A few months later I agreed to take part in a trial for a pill form of treprostinil.
I was feeling so much better, I could climb stairs, I had more energy, I would go on walks and bicycle rides. Life was good again. I continued like this for about five years 'the deadline'. Then very, very worryingly, I started to feel ill again. The breathlessness and palpitations started again. I was in panic mode again and denial, I even lied to the team at Papworth telling them I felt ok, but they knew differently. I was then prescribed ambrisentan along with the other drugs that I was taking I was elated, another ray of hope. I just got better and better. My 6mw improved and my lung function tests were better. I was back to my normal life.

Then a few months ago I was asked to take part in another trial. This involved having iron infusions. I felt fantastic! My family noticed a difference in me and my daughter claimed she had her 'mom back'. My exercise tolerance and general wellbeing were like they were before I ever had PH.

A diagnosis of PH is frightening and devastating, but I am testament that with a positive mental attitude, support from a wonderful family and friends, a wonderful team at Papworth ( and mustn't forget the drugs ) life can go on and there is so much help available. I feel very hopeful for the future.