In 2012, we met a special young woman at the PHA International Conference. Her name is Philippa. We talked with her and she allowed us to share her story about her diagnosis.
Her story became our first blog post about to living with PH.
Now as we approach our first major race of 2015, we look forward to our reunion with Philippa, and again share her story with updates.
It is for Philippa and other people living with PH that we ride. Her story motivates us to race to make a difference in the lives of patients with pulmonary hypertension.
Original post pre-PHA conference 2012
Wellington, New Zealand
In the summer of 2007 I noticed that I was starting to develop chest pain, I thought this was not normal for a 22-year-old. My parents were away at the time, so that evening of the first occasion of severe chest pain, I went to ED. I had already been to see the G.P. several times complaining that I could not get a full intake of air and being told that I had mild asthma.
At ED I had a chest x-ray, blood test and an ECG, they said all was fine and sent me home at 2 am.
Three days later I got a call from my G.P. saying he wanted to talk to me about my chest x-ray because I had an enlarged heart. The G.P. then said I might have mitral valve incompetence and he would book me in for an echocardiogram.
Meanwhile my parents went to Hamilton for a family birthday and meet up with a medical relative who told mum and dad to book it privately and to not wait around. When they came home they booked me in for an echocardiogram.
The next day while I was at work mum got a call from the G.P. saying that I had pulmonary hypertension. I was seen by a cardiologist that afternoon and was admitted to coronary care unit that evening, to further investigate and to consult with Auckland because I also had liver disease and sleep apnea.
I started on Sildenafil straight away. There was talk that I would need one or more organ transplants.
A few weeks later they started me on Iloprost which I had to inhale 5 times a day. I went to Auckland and the outcome was that a liver transplant would stop the progression on my PAH.
Six months later I received a liver transplant and things were touch and go for the first week, but over the three months to a year I got better. However my PAH did not stabilise.
I stopped the Iloprost and started on Bosentan as my body reacted badly to the Iloprost.
My PAH is still up and down. Today I am on Sildenafil and Bosentan and try to stay as fit as I can. 18 months ago I went to visit my sister in London and travel Europe. I hope to go to the PH conference in 2012.
Since 2012 – Update from Philippa’s mother, Judy
Unfortunately, there has been a steady decline in her health since 2012. She is on oxygen most of the day.
In 2014 Philippa was listed for a lung transplant but had a small stroke so that was unable to be done.
There was further decline in her condition and she was started on Macitentan. After 4 months there was some improvement.
Philippa is the first to start this drug in New Zealand and is currently self-funded.
We continue to keep busy every day.