Traveling with Pulmonary Hypertension

I was very fortunate to be able to go to the Pulmonary Hypertension Association's PHA On The Road. One The Road is a mini single day conference. Information, support, friendship and hope abounds at On The Road and Conference a like! I was asked to speak about Traveling with Pulmonary Hypertension... I have had lots of experience traveling with PH, while on the iv medication Flolan, and on regular oral medications. So I felt confident talking about this subject.

I usually feel very nervous when speaking in front of people, even though I love the feeling I get when I'm told that people learned from me, like I did after this On The Road day. But since I'm so nervous, I like to have written down what I'm going to say, so that I'm not sitting there going uhm! uhm! uhm! lol

the following is what I said at the PHA On The Road
#PHAware #PHAssociation #PHAOnTheRoad #SickGirlProblems #HugsnPeriwinkleKisses

Travel like Most things in Life can be as stressful or stress free as we make it out to be. Even outside influences can be made easier with a bit of planning. In order to get here at a good time, i made plans a-b and c. I had to watch my granddaughter Ellie over night so my daughter could work a 13 hour shift. If my daughter couldn't pick up my Elie before 8, I wouldn't be able t get a ride with my sister and her husband, and I would have to find a different way to get here.  I researched grey hound and found the ride was about 4 hours long and a little more than $20. Then , I thought, if she's not here by 10am, I'd have to figure out something else. I called a friend I knew was coming and told her of my dilemma. I went to bed felling so much more confident that I would make it here without too much hassle! 

Planning what you will take with you is very important but  knowing where you will put ur belongings can become a matter of life and death, when traveling with a chronic and rare disease like PH. if you pack your flolan or Remodulin in ur check in luggage on an airplane, did u know it will freeze and become basically useless. What if ur check in has been lost? All ur mixing supplies, meds, oral meds, etcetera could be gone. where would you go to get them replaced? 
Researching and planning for these unforeseen and unfortunate events could very literally save your life. Did you research local ph docs before coming here today? What about ordering O2 for the day or night ? 

Have you flown since being on IV meds? When I was on flolan, I flew at least once a year home to SoCal. Going thru security I was always told to remove my fanny pack. No matter how many times I insisted they still said I needed to remove my cadd pump. That's when I would take out my medical binder from my backpack. By planning ahead and talking to my doctors before hand, dr frost, my specialist, agreed to write a letter to anyone who insisted I remove my catheter, or asked me why I was carrying around 20 bottles of meds.  
Your pumps should also never go thru the X-ray machines. The frequency of these machines can mess up your pump, either by screwing w the dose or other just as dangerous things. 
Flying with your Cpap can also cause issues if you are not prepared. Just like ur laptop, your Cpap or bipap machine has to come out of its bag  at security. Under the discretion  of the tsa agents, they may remove the Cpap from the conveyor belt and swab the machine. You have the right to request they use a clean pair of gloves and a new swab stick & pad. You should never let ur machine out of your site either. Walk with the agent as they check it, making sure u 1. Don't lose it, and 2. It's not dropped or broken.  

Before booking your tickets, if needed, you can request a wheel chair at all locations. I do recommend getting the wheel chair. I always do. Travel is exhausting for me , packing and preparing for the flight, driving the airport or taking a shuttle, unloading luggage standing in line and more. Who knows how much energy I'll have after all this.  So I always ask for a Wheelchair. 
If oxygen is needed on the flight , at Your destination or anywhere in between, contact your local O2 company who will give u the info you need. Plus now, you need your own personal portable oxygen concentrator for any flights. Tanks are no longer provided. 

As with most all things you do for the first time after being diagnosed with pulmonary hypertension, consult with your specialists to make sure it's ok for you to travel out of state or out of the country. 
As you can see with a little preparation and research you can actually enjoy your trip and not be stressed out before ever leaving your home.