Suzanne Potterat’s PH Story

March 06,2017

My name is Suzanne Potterat and I am from Australia. I live in ACT and I have been diagnosed with PAH 11 years ago, 5 years being on the pump.

That’s when they told me that I was about to die of heart failure.

I have a closing artery from my lung to my heart. I am on Veletri and I take sildenafil three times a day. Tracleer, frusid, spiractin.

I went to so many doctors and was misdiagnosed for so many years I lost count.

During that time my body was building up with fluid, and I remembered everything with help of my mother and listening to music (headphones).

My nose was pushing over to one side of my face, in which I had to have it fixed in hospital. But when I woke up I found myself hard to breathe on my right side of the lung, it wasn’t moving for a moment it was scary and I told the nursing staff and they didn’t believe me.

So time as went on and it was very hard to walk anywhere. I would often ask myself all throughout my life, why am I not normal like everyone else. I am pretty much sure it was 2001 I had my first epilepsy attack everything came back clear. But only 3 or 4 months after I started to feel really funny in the legs, I felt like each time I need a drink lots of water, my legs were getting harder. I couldn’t move them.

I didn’t know what was happening to me so I rang my younger sister who lived nearby me, and we went right away to see my doctor. The doctor said that I need to go to hospital right away.

That’s when they told me that I was about to die of heart failure.

I couldn’t believe it and that it was about to happen to me. I am very much grateful that my health problems have been noticed, but when I was told of the illness my first thought was Oh no this sounds like a name that people might make fun of. But I am very much proud to help, to get the awareness out there to people. I am very thankful to my doctors to whom I see: Prof Anne Keogh, Dr. Peter French, Dr. Stephen Tang, and my family support: my mother and two sisters.

Story Photos

Suzanne Potterat in a hospital bedSuzanne Potterat

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