This topic contains 18 replies, has 4 voices, and was last updated by  Jen Cueva 3 weeks, 4 days ago.

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  • #21054
     Colleen Steele 
    Keymaster

    The holiday’s are quickly approaching and if yours will involve travel than you might be starting your planning soon. I remember how much organization it would take to prepare for long car rides with my son and flying was even more complicated.

    If you are going to travel with your PH child over the holiday’s how will you prepare for that? What are your biggest concerns? Share your experience and tips with others.

  • #21075
     Brittany Foster 
    Keymaster

    Colleen,
    something that has really helped me recently and has also helped to put my mom’s mind at ease is when I have a doctor’s form that briefly explains my top medical conditions that impact me and my treatments the most. On the list is my medical conditions with a brief explanation of the ones most doctors would have to google LOL and also a list of my medications, treatments, and current important test results. Even though I have luckily never had to use this piece of paper when I’m away, it’s still a good way to help ease my anxiety around the worry “what if something happens?”

  • #21086
     Jen Cueva 
    Participant

    Great topic, Colleen. I can imagine the planning with a PH kid is much tougher and takes time planning. I like the tip that Brittany shares about the doctor’s form. I especially love the terms and diagnosis that one may need to Google! Great addition!

    I have an “Important Emergency Info” pack, it includes a copy of my current medications, diagnosis, doctors and contact info, as well as my allergies. I really think that I will add that “Google” section to my list.

    For parents with those on meds that have to be kept cold, do you use a small cooler? I know that these meds can be even tougher to travel with. You have to worry about extreme temperatures, too. I am an adult with PH on all oral meds, but thought this would be a great question, plus I love learning about all tips.

    • #21093
       Brittany Foster 
      Keymaster

      They have really good thermal coolers now that keep things cold or hot. My mom always carried some extra cold packs in them too and putting the cooler in the freezer overnight was something that she did too. I forget exactly what kind of cooler it was, but it was a good way to keep them cool for long car rides. I am not sure how this is done with flying though! Maybe the airline would be able to help with this? I always make sure to talk with the airlines ahead of time especially if I have special requests or need early boarding.

      • #21126
         Jen Cueva 
        Participant

        Thanks, Brittany, I appreciate the information. I would think that the airlines could help with the cold packs. I do know that some of the IV meds are not shelf-stable so they do not require the cold. I am not sure which ones still, require this.

        Hi @rockie436, I am not Brittany, but for me, I just flew to San Diego with my oxygen on and no issues. I was unable to fly for several years because of my health but thankfully I have had some improvements. In most cases, it would depend on your doctor. First, you would ask if you are medically able to fly. Then, the use of oxygen, which I know I cannot fly without. But, I just get some lightheadedness, headaches, and more fatigue. I also usually will not fly for more than 3-4 hours. I am sure that Brittany can add to this.

  • #21111
     Rockefeline Denis 
    Participant

    Brittany,
    How’s your breathing when you’re flying? Since diagnosed with the disease I’m scared of flying

    • #21127
       Brittany Foster 
      Keymaster

      Flying was always a problem for me, even when I was younger. I had a few undiagnosed medical conditions at that age that probably contributed to it. But I make sure to take on my Portable oxygen concentrator. You need enough battery life for the whole flight plus flight half time. So if the flight was 4 hours they make you have a 6 hour battery or enough batteries to last that amount of time to prepare for any delays or anything. You can’t use the outlets in the planes. The air in planes is just so stagnant. When I didn’t use oxygen on flights my levels would drop and I would have a pounding headache for days after. Do you have a POC? There is also a way to see how much oxygen you may need and what you would have to bring the o2 up to in order to make up for the pressure and air difference. The doctors can do this. I would ask yours if they have this test or if they know of how you can be tested properly. Maybe they can recommend a liter flow to go up to in case you need a higher rate. If you do have questions about flying, I did JetBlue and they were really good about the oxygen needs and accommodating.

  • #21137
     Jen Cueva 
    Participant

    Thanks Brittany, great additions. Funny, I think we were typing at the same time. Hehe

  • #21182
     Rockefeline Denis 
    Participant

    Thank you, Brittany. The pulmonologist did say I cannot fly without a portable oxygen. I do have a POC. I must check my oxygen level often. I’ll will talk to him about the test before I book a flight. Usually I am strong but when it comes to that I’m just being chicken.

    • #21190
       Brittany Foster 
      Keymaster

      I think that it’ completely normal for you to be worried about your oxygen on the plane. It especially made me nervous the first time I did use it because it was all so new to me. Any new experience like that would be nerve wracking for anybody, especially when you are in a plane and unable to have access to your healthcare professionals while you’re up in the air. Planning ahead and making sure you are informed as best as you can be will help to lessen the anxiety.

  • #21220
     Rockefeline Denis 
    Participant

    Thank you Brittany for the advise. I will take it into consideration.

  • #21221
     Rockefeline Denis 
    Participant

    Jen,

    Thank you for your input. Usually, I don’t let fear get into me but ever since the doctor said it was not safe for me yet to fly I am nervous about it. I have to find a way to get rid of that fear that eating me inside.

    • #21227
       Jen Cueva 
      Participant

      @rockie436, it is OK to feel scary and anxious since this is a new journey for you. Flying with your POC can be tough the first time, but not scary. Anxiety, I think because you are unsure of what to expect.

      I just did a 3-hour flight to San Diego and back last month. It was nerve-racking at first since I had not flown in years, but it went well.

      Be sure to voice your concerns to your PH team.

  • #21230
     Rockefeline Denis 
    Participant

    Thank you so much, Jen. I spoke about it with my pulmonologist. He advised me to wait until I feel ready to fly.

    • #21232
       Jen Cueva 
      Participant

      Hi @rockie436, I am glad that you discussed this with your doctor. I know for several years I was unstable and my PH team would not allow me to fly either. I hope that in time that you will feel well enough to fly if you want and/or need to.

      Is your family near you or long distance?

  • #21238
     Rockefeline Denis 
    Participant

    Jen,
    Thank God my family is near me but I would like to be able to schedule my vacation with them without thinking twice about where we’re going. However, I’m grateful and blessed that I am alive and still breathing even though breathing can be hard at time. I can still plan something.
    My doctor wants me to wait another year before I make plans to fly overseas.

    • #21269
       Jen Cueva 
      Participant

      I am so happy that your family is nearby, @rockie436. I would not give up hope for flying, I have not always been as stable enough to fly. You are not alone. Plus, thank God for research and advancements, things are improving for us living with PH.

      Great share, Colleen.

  • #21264
     Colleen Steele 
    Keymaster

    @rockie436 here is post from last year that shared tips for traveling by air. You might find it helpful.

    7 Tips for Traveling by Air With Oxygen

  • #21267
     Rockefeline Denis 
    Participant

    This is a really great information. Thank you Colleen

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