It starts in Belize. In order to get to the first zipline platform, we have to hike up a
hill, and then climb a ton of steps.
Part of the way up the steps, I feel like I
can't breathe. I’ve been exercising
every day, how can I be this out of shape, I think. I let the others in our group pass
by me, until I finally catch my breath. I climb the rest of the
stairs. I have no issues for the rest of the day,
or the rest of the trip. I shrug it off as a fluke.
A few months
later we travel to Colorado. We decide to go hiking at Chautauqua Park
in Boulder.
We take an easy trail that meanders up the mountain.
I’m having an
impossible time. Going up, I can’t walk more than twenty steps without having
to stop.
I can’t seem to breathe. It’s not a huffing from too much exercise
can’t breathe, I’m gasping for air, only able to take short breaths that do not
seem to be delivering oxygen to my lungs.
It takes me forever to get up the
mountain. Fortunately once we level off and make our way down, I’m back to
normal.
Just after
our Colorado trip I get a huge surprise. I’m the winner of Un-cruise’s 20th
Anniversary essay contest (here’s the link to the essay if you’d like to read it). My prize
is a trip for two to Costa Rica and Panama. Seriously awesome! While reviewing the itinerary, I
notice that there is a good amount of hiking. I don’t want to be the weird girl
who can’t breathe during the hikes, so at my routine appointment with my
rheumatologist (because I have Lupus), I mention my recent issues. She thinks it
might be related to the pulmonary embolism (due to Antiphospholipid Antibody Syndrome)
I had a few years ago, but it seems easier to rule my heart out first before
poking around in my lungs. The rest has been a blur…
-Echocardiogram
-
-Call from the doctor-pressure found in the right side of my heart. Must go to the hospital immediately for something called a V-Q scan. The test involves breathing in nuclear gas. Sadly I do not develop super powers. The test is clear, no blood clots in my lungs.
-
-See a cardiologist. Lots of appointments with my rheumatologist.
-
-Get a right heart catheterization. Pulmonary arterial hypertension confirmed. Start treatment (taking Viagra, yup, you read that right).
-
-See the pulmonary hypertension specialist. Because it is a rare condition, there aren’t a lot of specific pulmonary hypertension specialists. I’m lucky because I live near The Hospital of the University of Pennsylvania in Philadelphia. They have an entire pulmonary hypertension center.
Fortunately
for me, my pulmonary hypertension was caught early. My prognosis at this point is positive. My
heart is still strong and healthy. Most people are not so fortunate. Most people
aren’t ziplining in Belize, hiking in Colorado, or doing other activities that trigger symptoms this early. The majority of people don’t experience being short of breath until they
are doing everyday activities. Usually by this point the pressure has been
quietly deteriorating and weakening their heart, and things are pretty bad (sometimes in heart failure bad). I am grateful to God for an early diagnosis and a whole team of doctors who are dedicated to, as my new specialist put it, keeping me from "falling off the cliff."
The
condition is incurable however, so I’m stuck with it. Actually, I’d like to think that
it is unluckily stuck with me. I’m not in the habit of feeling sorry for
myself. I am a fierce kick ass warrior. I plan to continue to travel for as
long as it is possible, which will hopefully be a very long time.
There will be
challenges that I’ll have to face as they come. For example, since we fly often, I already have a special High Altitude Simulation Test scheduled to see if I need supplemental
oxygen when I fly.
I've been greatly
blessed to be inflicted with wanderlust and an ability to travel often. If it wasn't for the trips we took that triggered my symptoms, who knows how long it would have taken to discover
there was a problem. I feel like travel saved my life.
*Extra Note- Although this
site (and hopefully my new website coming in 2017) will primarily remain a
place for me to tell fun travel stories, I will add information about my
pulmonary hypertension when it’s relevant. I couldn't find any other travel bloggers with the condition, so I hope to offer as much advice as I can to any in the future. With everything I do, my goal is
always to be an encouragement, whether it is encouraging someone to not let a
chronic illness destroy who they are, or encouraging everyone to get out and
experience cool, new things.