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  • Ed posted an update 9 months, 1 week ago

    HI Charlene, I am new to the forum and enjoyed following your Hawaii holiday. I am going on a vacation in May which will take me from NL to Las Vegas for 3 days ,then to Hawaii where I will spend 3 days before boarding a cruise that will take 3 Islands in Hawaii then of to Vancouver. I was diagnoses with IPF in 2016, successfully taking Esbriet . Both my wife and I are a little anxious about the long flights and the sun exposure. Reading your post has put us as ease a little! I am very careful in the sun, maybe a little paranoid, but I do want to enjoy Hawaii to the fullest. Any suggestions you may have I would appreciate!

    • Hi @edgeorge

      Nice to hear from you, thanks for writing and welcome again to the PF forums. My holiday in Hawaii was one I’ll never forget, it was an amazing experience and I hope you love the islands just as much as I did. I was also diagnosed in 2016, taking Ofev. The sun exposure is something I’d really caution you to be careful of, especially on Esbriet. The sun is very hot in Hawaii, and I noticed a big difference compared to our sun here in Canada. I bought a sunscreen unique to Hawaii – called Sunbum – and bought the 70 SPF. I also love it because it is reef safe, leaving out two ingredients that are killing our reefs in the ocean. The other thing I did on day two was buy a rash-guard which is like a bathing suit material t-shirt that I threw over my suit to protect my shoulders, back and chest from the sun. This was so helpful!

      I didn’t have any trouble with the flights, just make sure you get up and walk to avoid any risk of clots… I tried to do that every hour 🙂 Hope this helps. I’d love to hear how your trip goes. Keep in touch.
      Charlene.

      • Hi Charlene,
        Our Hawaii vacation is getting closer and now the coronavirus is a concern! How are IPF patients coping with travel? We cruise from Hawaii to Vancouver after a three day stopover in Las Vagas, then we fly back to NL. This is my retirement cruise and very much looking forward to it, but not at the risk of harms way.
        Have you heard how the threat of the virus is affecting travel in the IPF community?
        Hope you are well,
        Ed

        • Hi @edgeorge

          Thanks so much for writing and on such a pertinent topic right now! The coronavirus is quite scary for those of us with lung conditions and compromised immune systems. I am currently on my way to California for some rare disease day initiatives and a vacation and the coronavirus was concerning to me at first as well. It still is, but when I spoke with my transplant coordinator about this she said that there is nothing we can do ultimately to prevent its spread. We can help ourselves by wearing gloves and a mask (I’ve been in my mask all day in the airport and I am so hot, but it is worth it to stay protected) and also wipe down all surfaces with Clorox wipes which my RN confirmed kills the virus. It is still scary though! I also use a Vogmask, not just a standard surgical mask because those don’t offer enough protection supposedly. I would be a bit more worried (as you seem to be) about a cruise, as viruses can spread on cruise ships a lot easier ,as we know. Do you know that the cruise line is doing to be proactive in detecting anyone potentially infectious? If I knew they were screening people before boarding the ship, that would even help ease my concerns a little bit. I am still doing things I want to – I also was super sick the last while and have really missed out on opportunities – but am just taking as many precautions as I can. Not sure if this helps at all? Check out the cancellation/delay policy too, which might make you feel better but I know that is not ideal given the circumstance around the cruise (happy retirement).

          Let me know your thoughts.
          Charlene.

          • Thanks for your insite Charlene! I guess to be vigilant and try to protect yourself is key. Sorry to hear of you recent illness, you obviously fought your way through it, good for you. Enjoy your trip to California, stay well! We are looking forward to our vacation, it’s kind of a “do over” as two years ago we had a Mediterranean cruise booked and 10 days prior I had a brain aneurism and I’m very lucky to have survived it. I will keep on living my life and won’t go down without a fight, as many IPF warriors!
            Safe travels!

            • Thanks Ed, you too! It is so tough not to be worried about this new virus, but I think it is important for us to know we’re doing everything in our ability to protect ourselves from it. However, I just can’t let it interfere with my love of travel (IPF has done that enough, although I would completely respect someone’s decision not to travel right now because of it too. Really is personal preference). I’m so hope you enjoy this “do over” trip — you deserve it! Stay well and keep us posted on how you’re doing. And, circle back if you can to let me know how much you loved Hawaii!!! 🙂
              Charlene.

              • Ed replied 5 months ago

                Hi Charlene, we cancelled our vacation! It was just to risky cruising with this virus so contagious. As it is disappointing maybe the third try will be the charm…
                I wish you good health, and to all my fellow warriors – stay safe, healthy and strong at this trying time.
                😷 Ed

                • Hi @edgeorge,

                  Thanks for writing me, although I am so sorry to hear you had to cancel your vacation. For what it’s worth, as this disease continues to spread like wildfire, I do think this was the right decision. I’m sure you are so disappointed, but think ahead to when you will get to go and enjoy every minute of it worry free of this virus. Right now, I’d be concerned you wouldn’t be able to enjoy your trip as you’d be so proactive and focused on avoiding the germs. Good decision, though I’m sorry COVID-19 forced you to make it. Wishing you good health as well, and keep safe and healthy during this tough time. I hope it all passes soon, I can’t get our “PF family” out of my mind during this trying time…

                  Talk to you soon.
                  Charlene.

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