Wendy Duff, a PH patient, describers her struggles with diagnosis and treatment. This article originally appeared in Pathlight magazine, a member benefit of joining the Pulmonary Hypertension Association.

In 2001, I was diagnosed with liver cancer and placed on the liver transplant waitlist and sat patiently — well, sort of. I had a tumor that was 2.5 cm and we couldn’t let it grow to 5 cm. So, in April 2002, I got the go-ahead call for the transplant and made my way to the hospital ready for this big scary thing.

I awoke in ICU feeling unusually well, but was soon told the transplantation did not happen. During the pre-op preparations, a previously undiagnosed condition called pulmonary hypertension (PH) was discovered. Thus began the challenge of learning what this new condition actually was. This included many right heart catheters to measure pressures and a search for funding grants to get the only medication used in New Zealand at the time, Iloprost. The liver transplant team was able to slow down the growth of the tumor by literally blocking the main vein in order to shrink it. But this was only a temporary measure.

Getting proper treatment for my PH was a real struggle. I only met one other person who had the same condition as me. She taught me how to mix my Iloprost and all the side effects — it seemed the medical staff did not know this. I was in turn called upon to teach another lady the same procedure.

During this time, I was also becoming disillusioned about my transplant ever taking place. I had an 8-year old son with autism, and I had to be around to set him up for his future. I sat down at my computer on a mission to find out how to beat this unknown condition. I saw that PHA-US was holding a conference in Los Angeles. Determined to go, I applied and received a grant to attend. I ended up learning so much at that Conference, such as what medications I should be on and what type of nebulizer was needed to deliver a correct dosage of Iloprost. I went back in New Zealand fully armed with the information that I needed to blast PH “in the butt.” I even informed my liver transplant team specialist of what I had learned, including that I needed to take Viagra to help my condition. After a year on Iloprost and Viagra, I was well enough to be placed back on the transplant waitlist and was finally able to get my new liver in March 2003.

But the struggle to continue getting proper care and raise awareness about PH was ongoing. One thing that I found extremely hard was the lack of support — there are no support groups or PH association in New Zealand. Slowly though, things have been changing. We now have an incorporated PH society, NZPAH. The group is very tiny, and the chair, Allan Edmundson, does a lot of traveling around to newly diagnosed patients to provide support and answer any questions that they may have. This is at his own expense. There is also now a PH clinic in Auckland for those who may be lucky to have another professional refer them for testing. But, New Zealand is spread over two large Islands, so there is not enough funding for everyone to attend the Auckland clinic. So many go undiagnosed as the general knowledge around the rest of the country is lacking regarding this rare condition. The general practitioners or even hospitals are not even picking up on this condition until it is almost too late. But at least the clinic works with us and refers new patients to the society. It has been a long battle to get this to happen.

We do have a Facebook page where we post a lot of the info coming from PHA. This is our main source of information about the latest advancements in PH and how we support newly diagnosed patients.

Additionally, we try to hold bimonthly support meetings, but because of the scale of the country only those living close to Auckland can take part. My aim is to see if we can get more support groups set up around New Zealand so that more patients can attend. There is no doubt in my mind that you learn the most from talking to others who have the same issues.