I’m Aware That I’m Rare: Kevin Burke

Transcript:

My name is Kevin Burke. I’m from Australia and I’m a pulmonary hypertension patient.

In 2010, I was diagnosed with pulmonary hypertension. I just was getting short of breath, probably like most people do over a number of years. But being a man, never went to the doctor. I was old, unfit, not playing sport anymore and working shift work, so I put all those excuses together. It wasn’t until one night at work I thought I was having a stroke. I got sent to hospital. Stroke was ruled out. I was sent to a major center later on for a catheter and discovered that I’ve got congenital heart defect and pulmonary hypertension at the same time.

Before that, I didn’t know I had congenital heart defect or pulmonary hypertension, I just got short of breath. My journey since then has been a rocky one. To start with, I think, probably like most people, I felt isolated and alone, especially living in a rural town in Australia. If you know, Australia’s pretty big and we can be isolated quite quickly. A couple of years before I realized there’s lots of other people out there with pulmonary hypertension. I found a support group, which is PHAA and it was an amazing journey with them to realize that I have friends who are going through the same, probably mental issues that I was going through as well as the health issues.

Joining the support group and dealing with those mental issues was probably more important and realizing that people go through the same emotions as what I was going through, especially in that initial period. Since joining the group, I ended up being on the general committee for about a year and I’m now the vice president of Pulmonary Hypertension Association Australia. My role, I suppose, is more behind the scenes with trying to lobby government and politicians and drug companies and things like that.

Everybody knows that when you’re depressed, you’re depressed. You don’t have to be told by a professional that you’re depressed. So how do I deal with that? Well, obviously, I get on the support group and just say I’m having a low day. In Australia, we have a saying, and it’s called “I’m suffering from the black dog.” I want to kick the black dog because he’s biting me, basically. I deal with it through the support group and the support of many people who go through the same emotions every day. You know that it’s going to get better. I live by (I don’t if you know the comedian Stephen Fry, who wrote a letter to a lady who was suffering from depression). It is a fantastic way to explain how to deal with depression and he talks about peaks and troughs. So, we go through peaks where we’re good. Then we go through troughs. Yes, we’re going to have bad days but what we’ve got to remember about those bad days, at the end of those bad days, there’s another peak coming, and you’ll have good days. And yes, you have good days and you will have another trough coming and have bad days. And it’s how you live through those troughs to get to that peak. It’s a very good story.

I also go to counseling. My marriage broke down, sort of made me go to counseling. It was offered to me. It was the best thing I’ve ever done, and I highly recommend it. A lot of men probably don’t go down that avenue or path because of the stigma of men getting that sort of help. I recommend to any man, if it’s offered to you, counseling, professional help, take it, grasp it, use it and you’ll be better for it because I know I am.

Currently in Australia we have eight medications available. The health system, obviously, in Australia is universal healthcare, a lot different than the United States. One of the things we’ve been working hard on is getting another drug approved through the pharmaceutical benefits advisory committee so that’s to do with getting drugs cheaper and reimbursed.

I went to a meeting last year with Medicines Australia in Canberra and from just a chance meeting with the head of one of the drug companies at a meeting, I was able to facilitate the PBAC to come and speak to us as a patient group. In the whole time of their existence, the PBAC, we’re the 13th patient group in the country that they’ve spoken to in their lifetime. We’re the first patient group that they actually come to us. Usually people have to go to Sydney or Canberra to speak to those guys. On our patient day that we have once a year, the PBAC and four delegates come with a heap of information that they wanted to gather from the 35 patients at the patient day. And out of that, they took back a lot of information with them in regard to the needs of pulmonary hypertension patients and what it means to be able to have the availability of more drugs, that obviously are available in other parts of the world. Even doing all of that, they still knocked back the latest drug that we’re trying to get approved. So, it’s still hard work. And like, I think, most governments, it costs them money and they don’t want to spend money on things that they’re not going to make any money back on. So that’s the hard road for us.

Awareness is the key, isn’t it? Everybody needs to be aware. I think the medical community [needs to be aware]. I think what my vision for the future is if somebody presents at their local doctor in their local town, it doesn’t matter if there’s 100,000 or 1,000 people living in that town and you present with a shortness of breath, all avenues of shortness of breath are investigated. And I think that comes through awareness.

If the medical community are aware that there’s not just one avenue of shortness of breath that I think that we’re all familiar with, a lot of people getting misdiagnosed. There are other avenues then I think we’re on the right path to making sure people get treatment earlier rather than later.

I think we’ve heard this advice plenty of times before. Don’t go on the internet. And I know that was one of the best bits of advice my specialist first gave me. He was adamant. Don’t Dr. Google or don’t get on the internet and search up because what you read is not reality. There is some truth to what you read, but there’s a lot of misinformation out there as well. So, don’t get on the internet. Trust your specialist. Listen to everything. If you have questions, write them down in a notepad so next time you see your specialist, you’re prepared with a lot of questions instead of trying to go in there and trying to remember everything.

I write a lot of letters that don’t get answered to politicians, especially local members. It’s crazy. I’ve got nothing to offer them. I’m asking for something. I’m not giving something. So, engaging a politician is pretty hard. There are things like last year World PH Day in May, I actually hounded the daylights out of my local newspaper with my story. I kept messaging, messaging, messaging and so on the fourth of May, they rang me up and said, “We want to do an interview for the paper.” And finally got my page in the paper and the feedback from the community, small community, I suppose, 50,000 people that’s small, compared to a lot of cities. The feedback from a lot of people in regard to that was pretty good. We were able to get some awareness raised, through my local paper through persistence.

My name’s Kevin Burke and I’m aware that I’m rare.

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