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I'm Aware That I'm Rare: the phaware® podcast

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Justin Gulliver - phaware interview 322

Apr 21, 2020

COVID-19 SPECIAL EDITION: 
Justin Gulliver is a pulmonary hypertension patient from New Zealand as well as a health social worker primarily working with people who have chronic and long term health conditions. Justin discusses being on both side of the health system in NZ. He also discusses the impact that social distancing is having on his practice in a time of coronavirus.
#phaware #COVID19

My name is Justin Gulliver and I live in Wellington, which is in New Zealand. I was diagnosed with pulmonary hypertension in November of 2018, but I’d had some problems, probably symptoms for a lot longer than that. It all started when I was about 11 years old and I got a virus that kept me in hospital for quite a long time. That virus caused some problems to my liver, which turned into portal hypertension about 11 years later. Then over time, that's gradually developed into pulmonary hypertension.

Portal hypertension is caused by problems with the liver. Most commonly, it's caused by cirrhosis of the liver, but that's not what I have. It affects the portal vein, which is one of the key veins that connects the liver and the lungs and heart all together. They're not 100% sure for me why that happened, because I actually have a really healthy liver, but it's caused damage to my lungs which is where the pulmonary hypertension comes from. So, officially they call it portal pulmonary hypertension.

New Zealand is a pretty small country. There's only about 5 million people on a good day, so that means that the number of people who have pulmonary hypertension is quite low. I think it's kind of about 200 people in the whole country that are known to have it. It's not very well recognized. As with everywhere in the world, it's not easy to diagnose. People aren't automatically looking for it. We have access to most of the same treatments that are available in the rest of the world, but we have some restrictions around how much is funded. So, for the first line therapies, [sildenafil], that's the only one that's easy to access and is funded for New Zealand citizens. The other ones within that same category aren't funded at all. To get them, you have to have special sign off from the doctor and from the government to access them. So, it's quite a different system from what I'm aware of around the world.

All of our healthcare is free in New Zealand, so my diagnosis happened on the back of an acute kidney problem, which then led to sepsis and then lead to heart failure. While I was getting ready to have that kidney issue sorted out, that's where they realized that there was something else going on. So, it took an acute illness for me to get diagnosed. But I'd been having tests over probably the previous three years, because I knew that something was wrong, but no one else really understood what I was talking about and the symptoms that I was describing. When I finally got the diagnosis of pulmonary hypertension, I was actually relieved. I'd probably spent three or four years going backwards and forwards to doctors telling them that I thought something was wrong.

I work in the health system and I've been able to do a bit of research, so I'd actually heard of pulmonary hypertension before, so I knew about it in relation to portal hypertension. That meant that I was already thinking about pulmonary hypertension, but I couldn't get the tests. When I brought it up with the GPs and the other doctors that I was seeing, I couldn't even count how many specialists I'd seen in that time, they would just dismiss it as a cough. I put on heaps of weight because I couldn't exercise, so they said that I was unfair to overweight. They diagnosed me with asthma at one point. So, there was those kinds of things happening. Once I actually got into hospital, even though it was a really traumatic event, getting really, really sick and almost dying, when they actually said, "You've got pulmonary hypertension," I went, "Yeah, I know, and I'm really relieved to hear you say that finally and get the treatment."

I mentioned that I work in the health system in New Zealand. I'm a social worker and I primarily work with people who have cancer, but I also work with people who have long-term chronic health issues. So, I was kind of aware of a lot of the things that go on for people when they get a serious and new diagnosis like this. I guess being a patient in the hospital that I work in was quite a strange experience. There was some really good things about it, that I got a private room and people knew that I was there and they kind of really went the extra mile, because they knew who I was. But there was also the whole everybody knew where I was and they assumed that I understood and knew things that maybe I didn't understand that well.

Then we sort of moved into the outpatient setting, whereas going to my assessments and tests and other things, and I realized how tricky and difficult the health system can be for people to navigate without support. Because even as a staff member trying to coordinate my appointments and get information back from doctors and that kind of thing, I found it really, really tough. The doctors were really great in front of me when they were sitting in front of me, but it was those times in between where you didn't have necessarily someone to talk to. In Wellington, where I live, they don't have a nurse specialists for pulmonary hypertension. They don't even have one for respiratory illnesses. So, we didn't have anyone that I could go to directly with questions or problems that I might've been having. I found all of that really hard, especially when I was working with people in the same health environment and advocating for them to have that information.

I have a better understanding of what my patients are going through now than I did before, because I've been where they are. It's different because it's a different illness and it's got a different future and trajectory and I'm not going through kind of chemotherapy treatments every week or anything like that. But I understand the limitations that an illness can cause. There's always in the back of your mind that little thing about we don't really know what's going to happen in the future and my life may be shorter than it could have been if I didn't have this illness. So, I think I have a better understanding and I'm able to empathize with my patients there are a lot more than I used to. But I have also had health problems since I was a kid that have assisted me and led me into the work that I do.

I've probably become a little bit looser with some of my boundaries than I used to be in the last 18 months or so. But I don't want to give them my problems, so I don't really talk about my own health issues so much, except in my head I can kind of go, "Yeah, I understand where you're coming from." I think sometimes it actually can make it harder, because I can empathize with some of the complaints that they have.

Living in New Zealand with such a small number of people with this condition, there isn't a lot of people around and a lot of opportunity to meet with them. We do have a Facebook group, Pulmonary Hypertension New Zealand, which I help to administrate. That's really been a really good connecting place, both for me to hear what other people are going through and to help them, the ones who have come after me as well. One thing that is really great, is that we have a National Center for Pulmonary Hypertension, which some people can go to which is based in Auckland. When I'm up there, I get to meet other patients when we're kind of sitting in the waiting room waiting for our six minute walk test or to see the specialist or whatever we're doing. That's really good because you get to talk to them about their experience, and people seem to want to connect. I think we've found ways of doing that across quite a big distance with quite a small number of people. I think that's really important to connect with people who are like you, because no matter how much you describe to people who aren't going through the same things, they never really understand it.

COVID-19 has had a pretty big impact here. We're probably a few weeks behind where the States are at and where some of the other countries are at. But our country has gone into complete lockdown two weeks ago, nearly, and that just means that nobody is seeing anybody. I'm now working from home, which is a bit weird, because I normally would be working at the hospital in the frontlines, but I can't do that because it's not safe for me to do that. That's been quite challenging for me. The approach that our government's taken is that we're completely in lockdown and we're trying to break the chain of transmission, and it's too early to say whether that's working, but we haven't seen the full kind of force of what this could do like some of the other countries that we're watching. We're just all sort of quietly sitting in our lounges hoping that we've done the right things.

I think New Zealand is or Kiwis have been pretty responsive. Our prime minister kind of sat down one day and said, "You have to go home and you have to stay there." And we all kind of have. Everyone's just gone, "Yeah, okay, sure. We'll do what you say and we'll try and get through this." Everything's really supportive and there's lots of centralized government advertising about what we're going to do and how are we going to do it and how we are going to be towards each other. We're very lucky, because we probably produce 80% of our consumable goods in New Zealand and we don't have to worry and rely on the rest of the world too much.

Our biggest moneymaker is tourism, so we've been heavily affected by that. But our government have gone very much on the caring side where they want us to get through alive and to have as few deaths as possible. Our communities banding together and our supermarkets are still open and helping each other out. I was able to get a priority assistance from my supermarket, which meant they just dropped everything at my door, and I've got extra slots that I can choose from where the general public don't have those. They're looking after us, I think, and they're trying to get everybody through together.

The thing that helped me the most [with my diagnosis] was finding places where I could talk to others and hear information about this condition that wasn't so scary, because a lot of the stuff that I first found online, it was all about short life expectancy and all of that sort of stuff. As you go through the process of getting onto the right therapies and working with the doctors, you realize that that's not actually the case anymore. It might've been a few years ago, but it's not so bad now. I think I found that really helpful. My advice, I guess, is seek out good information. Talk to people about what they're going through, and speak up when you're with the doctors. Tell them what you want to know. Don't wait for them to give you the information because they're probably as uncertain as you are.

I think the other thing is that I found it really helpful just talking about this with my family and friends, because they don't really understand what it's like and what the physical limitations are. For me, I look fine, so they don't really fully understand all the time what I'm struggling with. Unless I tell them that, they're not going to know.

My name is Justin Gulliver, and I'm aware that I'm rare.

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