Please email us with your story using the contact form page and we will then publish it here. You can keep your story totally anonymous or simply use your first name for privacy reasons.

Our Stories:

Nicola’s Story:

Life was all I had hoped for and was going well. I had just gotten married and bought my first house with my new husband, I had a challenging and exciting job as a high-school physical education teacher and was planning children in the near future… Read more…

Julie’s Story:

Pulmonary Hypertension and I became acquainted professionally in 1998, but prior to that I can recall the early symptoms as far back as 1985.  At that point I was 45 years old and leading a very busy and active life. Read More…

Judith’s Story:

On 5 September 2003, a visiting specialist from Auckland Hospital told me that I had Pulmonary Hypertension. I had never even heard of this condition before. He told me that Pulmonary Hypertension is high blood pressure in the lungs, and a small number of people with congenital heart defects, like me, get it. Read More…

Franca's Story:

I was diagnosed in 2005 with Idiopathic Pulmonary Hypertension a few weeks before I turned forty. My diagnosis was quite quick. I just thought I was unfit until everything became too hard. When I found out the diagnosis, my world fell apart. My dreams for the future just went out the window. Read More...

Sandy's Story:

Wow, how life can change. I was born in 1948 which makes me 62 now.
When I was a young mum my fingers would lose their colour and be very cold. I asked my GP at the time “what could be wrong”. He said “you have Raynaud’s Disease”. “Okay, so what do we do about it”. He said “there is no cure, just keep warm”. The fact that it was not painful, I carried on being a mother, wife and living life to the full. Read More...

Barbara's Story:

I will never forget the summer of 2003; I had just had my third child, a baby boy. I was so happy and he was a precious bundle of joy. Whilst I was still in hospital with my baby, the staff kept saying to me, my oxygen levels were low and I had to stay on oxygen, which I found weird as this wasn't the case with my previous 2 children. Being an asthmatic, I thought that was all it was, it was after tests at Auckland hospital whilst my baby was still in National Women’s Hospital and I saw a Specialist and Doctors who diagnosed me with Pulmonary Hypertension. Read More...

Jill's Story:

I was 64 and experiencing extreme breathlessness. My doctor said, lose weight and said it was my asthma. One of the nurses was talking about me to one of the other doctors. This doctor said she would check me out.

She listened to my heart and told me that one of my heart valves was leaking slightly and referred me on to a specialist at the Super Clinic. It was all free, and after a heart scan, I was told I had Pulmonary Hypertension. The right side of my heart was enlarged and the arteries in my lungs were closing up.

I was referred to Greenlane Respiratory Clinic. They were very helpful and I didn’t feel so alone with my condition. At present I go every three months for my six minute walk and checkup. I am taking two expensive pills to help me. I do not have to pay for them.

The Support Group is a great help as it is a rare disease and the people who go, help one another. I want to make the most of my life I have left.

Philippa's Story:

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 echo cardiogram. 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 echo cardiogram. 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 apnoea. I started on sildenafil straight away. There was talk that I would need one or more organ transplant. 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 stop 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.