Nicole Dempsey - phaware® interview 572

Don’t Let PH Ground You: A Real-World PH Travel Playbook

For Nicole Dempsey, travel has always meant freedom. After being diagnosed with pulmonary hypertension, that freedom suddenly felt fragile. Nicole shares how she continues to explore the world, raise her family, and find freedom beyond fear, proving that even with a rare disease, life doesn’t have to stop.

My name is Nicole Dempsey. I'm from Cambridge, Ontario, Canada. And I have pulmonary arterial hypertension. I was diagnosed 12 years ago. Today, I want to talk to you a little bit about traveling with PH. When I was diagnosed, I had been a heavy traveler and I knew that having a diagnosis like pulmonary hypertension, traveling might be greatly affected. I didn't want it to, so I just decided that I was still going to travel. I knew there would be barriers, but we would work around that. That's exactly what I did.

Some of the barriers that we need to overcome when traveling as a PH patient are obviously the medications. Especially, if you're on IV medication or infusion medication, there's a lot of medications to travel with. It’s just bearing in mind that you put them in a carry on and you get a letter from your doctor, if you so wish, that identifies what the medication is and you travel with them. It's no different than being at home. Other barriers might be oxygen. For myself, I'm not on oxygen, but I know that a lot of PH patients are. That's another barrier. But all the barriers can be overcome in order to travel.

For me, one big thing is when I travel, whether it's internationally, locally, I typically rent a car, and I find this helps a lot to get around places. I know a lot of people like to walk to places. That's just not something that I can do as a PH patient. Even though I'm stable in my disease, I still rely on having a car and being able to get around. It's a reassurance for me to know that if I need a break, I just go sit in the car. We get to actually see more places. When we're out and about. In Europe, for example, we've gotten to see a lot more landmarks in different places. If we would've had to rely on public transport, let's say, it would've been much more difficult to get to all these places. So that's a huge tip for me.

I know some people can get really, really intense on looking up the hospitals, looking up PH centers. My pulmonary specialist, he knows a lot of people in the world that work with pulmonary hypertension. Sometimes I'll say to him, "I'm going to Ireland," and he'll say, "I know Dr. So-and-so in Dublin, and you'll be in good hands if something were to happen." Or he'll say, "Okay, you're going here in the Caribbean. I know there's a clinic in, I don't know, Barbados." So you know that you're not going to be in trouble. You'll have some clinics around. I don't get too intense about that. I just know that I'll be okay in some capacity if there's a clinic within a certain radius.

Prior to being diagnosed with PH, I always had the urge to travel. Growing up without the means to travel meant that I did not travel. So once I got older, I knew that I wanted to travel the world and see a lot of different places. When my kids came along and the diagnosis, I thought I really needed to expose them to as much as possible at a young age and to see whatever we could. If it meant that we could also go to Europe or further places than Canada, then that's what we would do and just explore new places and have them enjoy where we're going, as well, and have them have the urge to travel lifelong because it's amazing.

Obviously when you're traveling, there are barriers. With a disease like this, it can be so unpredictable. You might feel like, "Yeah, I can do this today." Sometimes you're like, "I may not be able to do that hike that we had planned." Hiking for a PH patient is quite daunting. So for me personally, I have never said to my family, "Hey, go and I'm going to stay back," because of the whole FOMO thing, and I don't want them to go out and enjoy something while I'm going through site pain.

What I do is I come along and I sit if I need to and they'll go and do what needs to be done, or I just chill out while they go and maybe climb a hill that I can't climb. My kids, they want me to be okay. They don't want me to miss out, and they never felt like they missed out because of maybe something I couldn't do. If I say, "Oh, I won't do that," they like to say, "Oh, that's okay, mom, we'll stay with you," but I encourage them to go. I don't want them to miss out on a situation, but it's never been a problem in my family. I think that stems from... My kids were so young when I was diagnosed, they were three and five, and that's all they knew. So it wasn't anything lacking for them that mom is tired, mom is sick, mom may not be able to walk this distance during our vacation. They just really easily go with the flow.

As far as PH is concerned, and especially if you're on the IV or the infused medication, packing for that and planning takes a bit more time. You should always plan to bring more than what your travel time is going to be. If you're going for a week, I would plan to bring for a week and a half or even two weeks if you really want to be very conservative. With your oral medications as well, I always bring a little bit more than what I require. Always, always keep your medication in your carry on. I think most PH patients know that, but it's a good reminder sometimes.

Some of the places I was fortunate to visit was South of France. The South of France is beautiful and hot in the summer. So I guess a tip for someone who might want to travel and see the South of France might not be to go in the summer. It's a beautiful place, but someone with our disease and not adapting well to humidity and intense heat is not ideal. I've seen France. I've seen Portugal. I've seen Ireland. I've seen some islands in the Caribbean down south and Mexico. I've always got on quite well managing everything, managing the barriers.

Of course, if you have the means to travel, by all means, do it. This disease is all day every day, 24/7. It doesn't leave us. Traveling sometimes lets you leave and escape for a minute. I know it's always with you, but when you're away from home, you don't have it right in your face constantly. Whereas at home, your thoughts are a bit different. When you're away, you can just divert yourself a little bit, explore, and realize that you can travel while being sick. But yes, I think it's important to carve out time for yourself other than just being home and being saturated with disease. Especially if you're not working, if you're just home and you're sitting and you're thinking about this disease all the time, and it's consuming. I just think having a vacation on the horizon gives me will to live because sometimes it's hard. It's hard, the medication, the side effects. When I know I have a vacation on the horizon, that just gives me hope.

A lot of people worry about going through customs with all the medication that you travel with, especially again with the IV and the infusion. A lot of people will get doctor's notes. Personally, I've never been asked in 12 years for the letter that explains the medication that I'm traveling through. For all the travel I've done, which is a lot, my medication has maybe been flagged twice. It'll be flagged. They'll look at it quickly and then they close it and you're on your way. I walk through the metal detector with my pump on. Some opt to not do that. I walk through it. It very rarely sets it off, as well. I don't know if that's because my pump looks like a diabetic pump and they just assume it's diabetes. Sometimes, I get pat down, but it's very rare that it does that.

I think a lot of the travel component, that's what makes it daunting for some patients and why they might not want to fly places. They'd rather drive if they can do that. I know it can be scary for people who don't travel frequently. So for the first time, if you can talk to someone who's a seasoned traveler and that can give them peace of mind.

I was in a travel session recently at the Pulmonary Hypertension Conference in Canada. While I'm not personally on oxygen, that's another thought that people have. Those who need to travel with oxygen will often travel with a POC, which is a personal oxygen carrier. There's a special sticker that they might need to put on it so that they don't get flagged. There's patients who've also specified that they need to increase the amount of oxygen while they're in the air. As I said, I'm not on oxygen myself, and it's obviously something that you're going to speak to your doctor about if you are on oxygen and how to manage that, but there's absolutely a way to do it with oxygen. Don't let your disease limit you.

If travel is something you want to do, hope that you can do in the future. Don't let the disease deter you. If you're not well, wait until you're well and then give yourself that vacation to look for on the horizon. Because sometimes with this disease, we don't always have things to look forward to. Going on vacation and have something to look forward to is definitely a way to live well with the disease.

My name is Nicole Dempsey, and I'm aware that I'm rare.

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware
Share your story: [e-mail] Like, Subscribe and Follow us: www.phawarepodcast.com. @phacanada