Traveling Down Under - With PH as a Companion
PH Patient Ann Arnott
By Ann Arnott, PH Patient
This past December, I had the pleasure of summering in Australia, New Zealand and Fiji for three weeks. Summering? Well, they're in the southern hemisphere, so the seasons are the opposite of our U.S. seasons. I'm not going to give you a day-to-day account of my trip, but I want to share how I dealt with pulmonary hypertension during this three-week, multi-country vacation.
I'm not bragging, complaining or in any way trying to compare myself to how any other PH patient would fare on this same trip. What I would like to do is share some tips for how a trip like this can be possible for someone with pulmonary hypertension.
The PH Planning
My primary PH medication is IV RemodulinTM, which means I need to mix a new "batch" every other day. Even though each mixing kit is relatively small and light, three weeks of supplies adds up. Plus, my specialty pharmacy nurse insisted that I carry even more than I would actually need, including pump and dressing change kits. I occasionally had to remind her, "I'm going on vacation. If more supplies can't reach me by the time I run out of all this, it probably means the whole group is in deep trouble somewhere."
Another important part of my planning involved PHA. PHA put me in touch with PH leaders in countries I would be visiting, just as it had done when I vacationed in Europe three years before. These leaders acted as my emergency contacts - what I call my "umbrella." Being prepared means you probably won't need the backup.
Our first stop was Cairns (pronounced "cans") on the northeast and tropical side of Australia, bounded by the Great Barrier Reef. The glass-bottom boat experience was thrilling; the incredible diversity of living, waving coral, schools of brightly colored fish and huge tortoises was mesmerizing. Because of my catheter, I couldn't go snorkeling, and in any event I was in a restricted area due to shark sightings! The weather, however, was another story. It was in the 90s, with equal humidity and a heat index of about 100 degrees. Everyone was wilting, but it was harder on me due to the PH and a related PH problem, neuropathy of the feet. I'll admit that I was getting weary pretty quickly and looking for every opportunity to sit down - more for the "tired, achy feet" than from overexertion. Fortunately, periods of sitting coincided with one of my first memorable experiences: a long gondola ride up, over and in the massive rain forest.
From there, I went on to Sydney, Australia's biggest city, where the weather was much kinder to all of us. The walking, however, was something else. Our tour guide kept saying, "It's just a wee walk..." Eventually, I said, "Please define 'wee' a little more specifically." The group laughed and, indeed, many of the walks were more than "wee," but I kept up; or at least I didn't hold anyone up. When I visited museums on my own, I could go at my own pace.
I loved New Zealand with its diverse topography of lush valleys and glens, steep and abundant grazing lands for sheep and cattle and snow-capped mountains. The climate was better, and either the activities were less strenuous or my body or medication levels had adjusted (probably both). I had no trouble keeping pace with the group. I did, however, claim a fear of "heart stoppage" to avoid the optional activity of bungee jumping from the spot where this sport originated.
Ann (pictured right) with Sandy and Allan Edmondson,
New Zealand PH support group leaders
A highlight of New Zealand included meeting with the New Zealand support group leader, Allan Edmondson, and his wife, Sandy. Sandy is a pulmonary hypertension patient and Allan runs the New Zealand support group. They drove me to their home in Auckland where we talked a lot about pulmonary hypertension. Allan stepped in to help when their support group leader became ill, and he ended up as the leader. It sounds like he and Sandy are doing a good job having regular meetings, but they face challenges finding speakers, getting names of newly diagnosed patients and generally meeting the diverse needs and interests of their group. Sounded familiar!
The trip ended with a few days in Fiji, and then the real adventure with my PH started. Three experiences on my return trip sum up the unexpected that can happen with PH:
The lights go out! On the flight from Fiji to Los Angeles, I had carefully planned my schedule to prepare my next two-day supply of RemodulinTM during our long wait between check-in and boarding time at the airport, but I planned to make the switch well after we were airborne. All went fine but just as I reached for the prepared pump, all the lights went off! I only really needed a light to confirm that my pump was successfully switched on and blinking "2 d." What to do? My new iPad to the rescue! The backlight from the iPad was sufficient for the task. Do you suppose that I should inform Apple that "there's an app for that"?
- A light goes on. On my continuing flight from L.A. to Kansas City, my seatmate was a lovely third-year resident at an Osteopathic College in Des Moines. When I said, "I'm going to educate you on something," he was interested to learn that I have pulmonary hypertension because "I've never met one of you before." By the time we deplaned, I'll bet he was better informed than any of his classmates.
- The nurse's revenge. So, I'd made it to three countries on two continents, luggage intact, PH medication problem-free, but although I arrived home, my luggage didn't. But, no worries! I not only had my usual complete backup kit, I had my excess RemodulinTM and enough supplies for six more days in my carry-on. The extra precautions were justified!
Looking back on my trip, no one in my group of 32 (except for a nurse who, I think, quietly filled in a few others) was at all familiar with PAH. I continually tried to find the line between being an advocate and being a bore. I hope I succeeded.