June 13, 2017

Kevin’s story – Pulmonary Hypertension

My name is Kevin, I am 47 years old and a father of three beautiful daughters. In 2010, I was diagnosed with severe Pulmonary Hypertension (PH).

Even before 2010 my body was telling me something wasn’t right but I wasn’t really listening to it. I would get short of breath a lot easier than before and I joked about getting older and unfit. I was being treated for asthma but the various medications didn’t seem to help. I joined a CrossFit Centre to get fit, increase my cardio and put an end to the jibes of being unfit. After about six months I felt that I was getting fit, my body was feeling good but I still struggled with the shortness of breath.

Thursday 2nd of September 2010 was when my life changed forever. I felt strange, and after arriving to work the feeling got worse. I was worried and starting to panic but I couldn’t talk. The ambulance arrived and did all their normal checks. I was released from hospital four hours later with stroke being ruled out and no definite answer of what had happened that night. I saw the local cardiologist for tests and I was told I had signs of PH and needed to go to Adelaide for further investigation. I still didn’t know what this meant or how life changing those words would be.
In September 2010 I was in Adelaide for a left and right heart catheter. It was during this procedure the Atrial Septal Defect (ASD) was discovered. During my follow up appointment I was informed I had Pulmonary Hypertension (PAH). This disease has progressed to the point it has as a direct result of the ASD.

I still hadn’t grasped the concept of how serious PAH is and I was still coming to terms with being told I would never work again and that I wouldn’t be able to do the normal everyday things I was used to doing. Leading a ‘normal’ life was a thing of the past.

For two years I was set on fixing the ASD and PAH. I didn’t know what purpose I had anymore, not working. I had always been very active and I felt useless. At a check-up the clinical nurse suggested I contact a PH Support Group on Facebook. This was the reality check I needed, my focus now turned to living and managing PH. This was my only shining light seeking out the PHAA support group. I wasn’t alone, although geographically isolated, I had engaged with people who understood what I was going through. They were an enormous in helping me understand and cope with PAH.

I was also referred to the Alfred Hospital in Melbourne and told I was a prime candidate for a double lung transplant and in November 2014 after testing to ascertain my eligibility I was deemed eligible however I was not going to be put on the transplant registry, transplant wasn’t an option for me at this stage of my PH journey. This was devastating initially, how could they put me through this?

In 2015 I felt my medications weren’t helping me anymore and I started new medication. Since then I haven’t looked back, I’m feeling the best I have for a long time. In 2016 my goal was to get back on track with my life and I also become the Vice President of Pulmonary Hypertension Association Australia (PHAA).

PAH has had a huge impact on my overall life. With professional help I was given the opportunity to look at life differently, from a positive perspective. I am now able to do all the things I missed out on when it came to the girls and that’s being an active part of their lives. Dealing with PH on a daily basis though is just that, daily.

So how do I cope with this disease? Firstly there is the medical side of it. As you have heard I take medications that in the end help prolong my life and help give me a better quality of life. Every year I have the flu injection, something I never had until PAH.

Coping with PH on a personal level is not something I had thought about until recently. I keep myself busy within the limitations that I have. I’m a cook, cleaner, taxi service, referee and friend. I am also the head sports trainer/first aider for a local football club for ten months of the year. During summer I have an admin role for a local cricket club. My brother bought the local trophy business and I am now working part time doing engraving and make honour boards, I’m a carpenter by trade. These are the things that are my release from PH, the things that let me be normal, the things I love doing.

Although I have been the Vice president of PHAA for the past two years, the PHAA support group is always there for me when I need them, regardless of my position. I am a patient so I will always reach out to them. This group has helped me through some low times and been a great support to me through my journey. Prior to becoming the Vice President I was on the general committee for about one year.

Who is Pulmonary Hypertension Association Australia (PHAA)?

We are a not-for-profit organisation. We are a support group. We provide hope, support and education for anyone who is touched by PH. This is all inclusive of patients, carers, family and friends. We also promote awareness and to advocate for the pulmonary hypertension community and pride the latest information and research on Pulmonary Hypertension. For more information visit: http://www.phaaustralia.com/