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.

When my first visit to Hearty Tower at Greenlane Hospital came around, I was a complete mess. Thankfully, the team of Specialists, coordinators and support people were really good and put a lot of things into perspective for me. They recommended Sildenafil (Viagra) as a treatment. You can imagine the laughs I got from friends and family. I was already on Oxygen and taking Warfarin. Two years later, I was also put on Bosentan which has kept me reasonably stable for last three years.

The condition has had a major impact on my life from being very fit and active, doing my housework, gardening, running around with my children and farming with my husband, to not being able to do things to the same extent as before. It has been hard. I have adjusted to doing things that I can still do, and making the most of what I have. So has my family. My husband, children, parents, sisters and friends have all been very supportive. I do get treated different to before, people don’t include you in as many things. My social network has got much smaller. If I offer to do things for others, they look at me and say “Oh no you’re sick’, even though I will offer to do things I can do.

I have regular visits to Greenlane and am on Oxygen 24/7. I am on the transplant list now. This was a huge decision for me to make. I get funny looks because of my Oxygen. This is generally by people who do not know about my condition.

I’m glad that I had the opportunity to join the PAH Support Group. I was very much on my own with this condition. No one had heard of it and no one had it, it is quite rare in NZ. Those of us who have it are very spread out across the country. So to have this support group who meets every three months, so we can talk about all sorts of things and get handy tips is just great. To have the website for information that applies to us in NZ is fantastic. It is also good for the families of patients with this condition to get information. I congratulate and thank Nicola for all the hard work she put into getting all of this off the ground, for this to be of help to others who might find themselves in this position.

Remember to take things one day at a time.

Franca - 19/05/2011