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.

PHighter Friday: Clair

My diagnosis came on much like it does for many other young women.  During high school, I began to notice an increasing amount of chest pain, a racing heartbeat, and shortness of breath.  Characteristic of a developing adolescent, I denied that these symptoms were abnormal.  I attributed my inability to breathe and instances of passing out as being out of shape.  However, after a year of tests, hospital visits, and appointments with doctors and specialists, I was diagnosed with Primary Pulmonary Hypertension. 

As a senior in high school preparing to leave for college, the diagnosis was devastating.  Even though my doctor gave me the green light to go away to college and a positive long-term prognosis, I began to find that the emotional toll of having a progressive disease was more difficult than its physical manifestations.  Even though I attempted to cope with the anxiety that stemmed from my diagnosis with PH, it began to extend to other aspects of my life.  I began to doubt what I could make of and do in my future, and this doubt precipitated new insecurities.

Although there wasn’t a dramatic turning point, the woman with PH I am now is a stark contrast from that newly diagnosed teenager.  I changed the way I took care of myself.  I began to eat healthier by eliminating junk and adding fresh produce to my daily diet.  I also started practicing yoga and working out.  Of course, my workouts are modified.  I’m not running miles upon miles or doing intense cardio, and probably never will. But I keep a consistent schedule of yoga and lead a rock-climbing and yoga club for my students at the school I teach.  I do what I can, and I’m certainly doing much more than I ever thought would be possible after receiving my initial diagnosis

This past summer I spent 6 weeks in Europe.  I climbed Mount Vesuvius, a large volcano in Italy, climbed over 600 stairs to the top of a church in Florence, hiked in the Alps, and visited 6 countries.  The people with me understood that although I said yes to every adventure, I was going to do it at my own pace.  When I climbed Mount Vesuvius, I stopped a little at first, but as the altitude increased, I had to stop every few steps.  In our group, I was the very last person to make it to the crater and I didn’t care. I was only focused on completing my journey to the top no matter how long it took me.

Now a decade into my journey with Pulmonary Hypertension, I’m currently in the process of planning a trip this winter to Zambia, Africa.  Disease or not, everyone has one life.  Dwelling on what will or will not happen will only cause unnecessary worries.  Had I never broken free from my initial doubts or my perceived, grim outlook on my future, I know that I never would have taken the chance to start yoga, or to attempt an ambitious climb to the top of a volcano.  However, I was allowed to do both of these things, and I will continue to experience life, because I am committed to doing the absolute most that I can with my disability.  I will not allow Pulmonary Hypertension – or the psychological toll that comes along with it - to take away my potential and the opportunities that come my way.