Traveling while on Tyvaso

Hey PAH Warriors,

I was on Tyvaso for over 8 years and I loved the flexibility that it offers you when you want or have to travel. You can hike to the top of a waterfall or go bike riding without the constant fear of dropping your IV pump. But I never get to comfy. Here’s what I’ve done in the past when I am out and about.

First: I always make sure to set aside my additional vials, insert cups, filters, and a container of distilled water. This should be the first thing that you pack at least 1 week in advance. If  I am leaving for 10 days then I will take 5 days of extra medicine. **Keep in mind that if there’s a delay 5 days should be a sufficient amount of time to order more meds and supplies from your specialty pharmacy to where you are temporarily located. Leave each item in its designated package or bottle so that security can read the labels and not have to question you. Removing my pills from my handy little pill case and putting them back in their bottles is a pain, but it has to be done.

Tyvaso on a hike to the waterfall
Tyvaso and I on a hike to the top of a  waterfall!

Second:   I always call the airlines or travel station in advance and let them know that I am disabled and can’t be standing for extra long periods.Airport: TSA Cares. Also that I will be packing liquid medication in my carry-on bag. Never send your medications under the plane because it may not make it to where you are going. Luggage gets lost, rerouted, stolen, and damaged. I did this once and needed one of my medications during the flight for my diarrhea. EWE! Nothing is to personal. We are all in this together and can learn from each others experiences. Carrying my handicap parking decal seems to help me move through the lines and explain my illness with ease.

Third:  I find a doctor and pharmacy in the city or country that I’am traveling to. It sounds like a lot but trust me it’s a few clicks on your I-phone and you’re done! My doctor always knows when and where I will be. Sometimes she will recommend a local doctor just in case I run into an emergency. Tip: Keep your lids on tight. I’ve had my medicine evaporate in the heat when the lids were slightly ajar. Also when my pump tips over the medicine doesn’t always fall back into place. Carry extra vials!

Fourth: Setting my alarm to sound every 4 hours and having a travel buddy do it with me was how I started off every morning. When traveling is intensely engaging who has time to stop and take a breath right? Wrong!  I thought I was the biggest burden ever, having to stop and inhale these delayed sequences of medication. BEEP! BEEP BEEEEEEEP! But when I looked around they were just as tired and glad to be resting along side me. My friends were more supportive than I could’ve imagined. Through my journeys I have come to realize that while I may be s.o.b the person next to me may have sore feet or bulging discs. So I learned to ignore that part completely when I am on a date with mother earth and just keep going. Again I am not a doctor. Take on life at your own risk, just have fun while you’re doing it!

Fifth: Have fun and good luck! Have questions or comments, fire away!