In 2010 I was living comfortably with a good job until one night at work I thought I was having a stroke. After being treated at the local hospital, a stroke was ruled out and I underwent numerous tests to determine what was going on. One of these tests was an echocardiogram, which indicated I had pulmonary hypertension (PH), a condition I had never heard of before but one that would soon become my life.
I was sent to Adelaide for further testing at a PH specialist centre. I also had a left and right heart catheter put in. This was to be the turning point in my life as I was diagnosed with a 2.8-centimetre atrial septal defect (ASD) which is a hole in the wall (septum) between the two upper chambers of my heart and I was also diagnosed with (PAH).
I found out that PH occurs when the pressure in the blood vessels that carry blood from the heart to the lungs is higher than normal. The type I had, PAH, meant the blood vessels in the lungs are narrowed, blocked, or destroyed. I discovered that the increased pressure in the blood vessels of the lungs meant that the heart has to work harder to pump blood into the lungs. This can cause symptoms such as shortness of breath, chest pain, and light-headedness - all of which I had experienced in the two years prior but which was misdiagnosed as asthma. If PAH isn’t treated, the increased pressure can damage the heart which could lead to serious or life-threatening complications, such as heart failure or arrhythmias.
On initial diagnosis I was also told that I would have to stop working immediately and start on a regime of medications to help with the PAH. With the word’s ‘incurable disease’ ringing in my head, I felt I was just given a death sentence.
In 2010 Kevin was diagnosed with severe pulmonary arterial hypertension (PAH). Source: Supplied
For the next two years I focused my attention on the hole in my heart and the possibility of having it repaired. As I had been told the hole was the cause of the PAH, I figured that if I had this repaired the PAH would just go away and my life would return back to normal. I pushed the diagnosis of PAH into the background believing that this wasn’t as important to my health. I was in complete denial.
It wasn’t until one of my regular check-ups a specialist that I realised I had been focusing on the wrong thing for the last two years. My specialist told me to forget the hole. They said it wasn’t going to be fixed as there was too much pressure and risk involved and PAH should be my main focus in regards to my health. The nurse at this time gave me some details of a support group for PAH and suggested it would be good to interact with others with the condition. Up until this point, I thought I was the only one who had it.
I looked up the Facebook group called Pulmonary Hypertension Association Australia (PHAA) and requested to join. This was another turning point in my journey, as I finally found others with whom I had something in common. I found a community of people at various stages of their PAH journey who had all been through the same diagnosis rollercoaster that I was on. I found a whole new family who I could talk to and who understood everything I was going through.
PAH is less common among men, so engaging with other men is important, as we tend to have different ways of dealing with health issues. One of the main issues for me was not being able to work or bring in an income to support my family. This had a huge effect on me mentally, as I felt like a failure and that I was letting my family down.
My hope for the future is that diagnosis of PAH is quicker and that when people present with shortness of breath that all avenues of it are examined and not put into the easy diagnosis category of asthma.
I suffered from depression as a result and felt I had no worth in society anymore. I also went through a marriage breakdown which exacerbated the depression. As a result of the breakdown, I became the full-time parent of our three children. As low as I was, I knew I needed help, not just for me but for me to be the parent the children needed at that time.
I was offered professional help and began counselling sessions. As a man, I was sceptical of the whole process, but I knew I needed to try something to pull me out of the darkness. I can honestly say it was the best thing I could have ever done for myself and the children. To be able to speak to someone who is not emotionally involved with you, like friends and family, was an awakening. The counselling sessions made me see things from a different perspective and gave me valuable tools and strategies to help me cope when the darkness rolled in.
My hope for the future is that diagnosis of PAH is quicker and that when people present with shortness of breath that all avenues of it are examined and not put into the easy diagnosis category of asthma. It is important early diagnosis and treatment is attained to give people longevity and a better quality of life.
I am currently in a good place with my lifet. I am working part-time for my brother’s trophy and engraving business and the children are going great. I am the president of a local football club, I am also the vice president of the Facebook PHAA and an advocate for PAH patients. I met someone else and my partner and I are now planning on getting married later this year. I’ve managed to lead a relatively normal life despite living with an incurable disease.
An Australian-first has been launched, marking the first time that the patient voice has been incorporated into guidelines around standards of care. The PAH community hope to see increased understanding that the management of PAH is complex and requires a multidisciplinary specialist team from allied health and social support and the early recognition of PAH by wider understanding that the symptom of breathlessness always needs a diagnosis.
