NZPAH Trust and Support Group

Supporting, educating and promoting awareness of PAH

Patient Stories


Caleb's Story

Caleb and his identical twin Jayden were born prematurely on 12 May 2010 at 34 weeks (Caleb 3lb5oz/1580g and Jayden 4lb10oz/2250g).  Caleb’s birth weight was low for his gestational age – this was due to intrauterine growth restriction and twin-­to-­twin transfusion syndrome. When the boys were in NICU we were told Caleb had two holes in his heart ­ a patent ductus arteriosus (PDA) and an atrial septal defect (ASD).  Both holes are common in prem babies and we were told that the PDA would close once Caleb got to 40 weeks and the ASD should shut by the time he was 5 years old.

>> Read Caleb's Full Story


Gary's Story


I had been feeling unfit for a while but exercise was not helping, in fact it made me struggle even more, and around 2005 I was running into problems with breathing and heart palpitations as well as chest pains, migraines, asthma and general fatigue. I was 41 at the time. After several stints in A and E and hospital, I was sent to breathing therapy, and I was told my problems may be related to hyperventilating and stress and possibly angina. At times it felt as if people thought I was a hypochondriac because often symptoms would settle down once I was lying down in a hospital bed.

>> Read Gary's Full Story


Janice's Story

In 2004 at aged 69 I was diagnosed with Diabetes 2 which scared me no end as I could only see insulin injections ahead and I don\'t get on very well with needles.  I was told to exercise and watch my diet.

I was retired and was able to go walking every day but after some months I found myself becoming breathless and having to stop to catch up.  Eventually I realised this wasn\'t right. After seeing my GP she referred me to a Cardiologist and in 2004 was put through the usual tests.

>> Read Janice's Full Story


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 Judith's Full Story


Lisa's Story

At the beginning of the year Lisa Erikson could barely do simple chores like brush her teeth without getting out of breath but eight months and a double lung transplant later and she feels like a new person.
She is only the 173rd person in New Zealand to have the transplant done

>> Read Lisa's Full Story


Sandra E's Story

Three years have passed since I was diagnosed with Pulmonary Arterial Hypertension (PAH) and it has been interesting to say the least. At the beginning I struggled to hang my washing on the line, have a shower without someone being there in case I fell and make the bed, now I can do all of those things with more ease. I have learned that one of the best things to do is to keep yourself in a more relaxed state of mind.

>> Read Sandra E's Full Story


Susan's Story

I was diagnosed in June of 2011.Its one of those life events that stand out mainly because of the shock of it. I was devastated. I saw my whole future just disappear in a heartbeat. I was told 18 months to 2 years was all I had left. I left the office with my husband and cried my eyes out in the carpark.
It got worse in the days ahead and each morning I woke and the first thing I thought was ‘I am going to die”. Well, of course everyone is but I just hadn’t thought it would be so soon. I was 53.

>> Read Susan's Full Story


Rajitha's Story

I am Rajitha, 31 years old. In 2013 I was pregnant. After my 5th month I noticed cough. It is increasing gradually, I informed to my midwife, she suggested some tablets but not worked.

Went to GP, also he prescribed cough tonic but not worked. Day by day my cough is getting worse. I’m getting tired and breathless. My nails changed blue colour and some of the body, also, 8 month time I had continual cough I was tired and breathless. My husband was shocked and took me to hospital emergency ward. They did some blood tests. Nothing wrong they said, it’s a pregnancy pressure cough it will go after delivery.

>> Read Rajitha's Full Story




Stories from PAH sufferers


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