Traveling while on IV Remodulin

Hey PAH Warriors,

This is my second go on IV Remodulin. Always because I have to and not because I want to. I love the beach life and its always a sad day when I have to put the bikinis away. But then I remember pictures like this one where I couldn’t even see my pump and my heart was shrinking because it didn’t have to work so hard. Then Waah Laah! Like magic I’m inspired and round two is off the ground. So, I m going to Alaska you’ll!

Can you see my IV?
Can you see my IV pump?

First: As soon as I know I am going on a trip I start setting aside the extra supplies that I have. It seems like there is always extra! I save one set of the original labeled bag for each of the items that I am taking. For Remodulin that list can get pretty long! However, I do pre-mix several cassettes (carry-on) to eliminate having to take an excess amount of supplies with me. This makes me a happier person and alleviates the load. I add 5 days of additional supplies to my travel stash. I fill all of my other oral medications and pack them in my carry-on, NEVER under the plane! My pill case stays in my purse empty to avoid getting asked what each pill is. Tip: To make sure that you don’t forget anything try to use the invoice slip that comes w/every shipment as a checklist. If you are traveling in the U.S ordering supplies will be alot easier if you do forget something.

Second: I ask my doctor if she can recommend a local doctor or clinic where I will be vacationing. For Alaska she couldn’t find any PH doctors so she looked in Canada and still no joy. She gave me the number to a cardiologist in Washington Sate. However, I know a bunch of PH’ers on-line that live in Canada so I will network. Get on Instagram and look up #pulmonaryhypertension or #phaware and see who and what you find. There are tons of support groups on Facebook or just search by starting with www.phassociation.org they are a one stop shop. We must utilize our resources, we are so lucky to have them at our fingertips. Puerto Rico had a PH Support Group on-line which is why I felt so comfortable going there not once, but three times. Hawaii also had a tons of clinics and docs for PH.

Hiking Pipeline Pass in Anchorage, AK.

Third: Considering the climate I must pack accordingly for every trip. Everyone usually does this regardless of having PH or not. But I always look up things like the sea level to determine how I will be breathing on this trip. I’ll never forget my first trip to Colorado, 6,256 feet above sea level at some points, I was miserable the first few nights. Acclimatization takes time and thinner air usually means trouble for those of us that have lung issues. Some recommend taking folic acid to improve your red blood cell count before you travel. For Alaska, even though I went in September it was still in the 40’s, so I packed thermos and hoodies. From glaciers to whales,  those areas were chilly and windy. The last thing my Hickman needed was Pneumonia as a companion.

Fourth: Call the airline or travel station. The lady I spoke with was kind, but they aren’t always this way. Don’t let that ruin the fun that you have planned. I tell them that I am disabled and cant stand for long and that I will have liquid medication in my carry-on luggage.  You can get a disability pass and get into the shorter line. Sometimes the line goes off into a side room where they are a little more thorough with their search into your medicines and will wipe down your pump to test it. Sometimes security will recognize when a person is on IV therapy, but try not to be offended if it’s new to them.

Airports = a long day, so my tennis shoes are laced up and I usually chug a Monster (the vitamin one), no judgements. GRAWWLLL!! Put your game face on!

Fifth: I do take some extra steps in protecting my Hickman line once I am on the ground and ready for adventure. For instance, I may put an aqua guard over my tegaderm, in case I may be in a splash zone. I also bring Saran Wrap to secure my Q-syte right before I head into the fun. I do not leave it wrapped all day because that tends to create moisture.

Yes, I know were aren’t supposed to do A LOT of things but some of us just do. In case this is you, you may as well be as safe as you possibly can when you’re out in the wilderness of the world.

Kayaked in the Bioluminescent Bay!

Once I went kayaking and only my bottom got wet. Thankfully it was in a lagoon and there weren’t waves to splash up on me. Shhhhh, don’t tell anyone! Either way I still had my pump in a ziplock inside of a fanny pack. Then I wore it as a neck sling so that there was no way it could get wet or fall off. After a hike or a long day at the sunny beach your tegaderm will more than likely want to fall of your skin. Be kind to yourself and pack extra kits and tape so that you don’t have to worry as much. I have taken my pump to the beach & spent the day on the sand like every one else. I just left my bag around me the entire time. I put a large nude colored band aid over my tegaderm to blend it when Im in a bathing suit. Works like a charm! Tip: Please keep in mind that I do these things at my own risk and I am only sharing with you so that you can have a safer experience should you attempt a little adventure.

Sixth: Good luck and have fun!!! Have questions or comments fire away!

Author: PAHWARRIOR

I am a 36 year old woman traveling this beautiful earth with Pulmonary Hypertension and sharing the experience.

2 thoughts on “Traveling while on IV Remodulin”

  1. Wow I had no idea how much planning goes into your trips! You’re really an inspiration to witness! It’s awesome to see someone to live life to the fullest regardless of obstacles!

    1. Hi Marty,

      Thank you for the kind words! I think planning a trip gives us something exciting to look forward to on the in between days that Im sure we all face. The first few years I stood still, in shock.Then all of a sudden like a ton of bricks it occurred to me that I was waiting time. There is just too much world for us to see. Stay tuned and thanks so much for reading The PH Traveler.

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