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    • #30902
      Stefanie
      Participant

      I’ve been on oxygen for about 3 weeks now and am slowly getting used to it.  I’m sleeping better and have no aches and pains in my back and hips. I don’t know if it’s the oxygen or not.

      we usually cruise at Christmas time.  We have a 25 day cruise planned for this December.  Is it possible this can happen?  I will be disappointed if we can’t go, but I understand if  we can’t.  Any tips will be appreciated.

      Thank you.

    • #30905
      Sue Hewson
      Participant

      I have been on oxygen for five years and we have cruised a lot. You have to let the cruise company know that you are on oxygen. If you are on a CPAP machine for sleeping they will provide an extension lead and distilled water. It depends how much oxygen you are on – I used to be able to manage with my Imogen portable and several spare batteries to keep charged up but now I take along my Imogen home concentrator for use in the cabin and my portable just for when we are out and about. Make sure you have adaptors so that you can plug several things in one outlet. And make sure you have enough spare batteries for any shore excursion. Where are you going – presumably more than just around the Caribbean – so do you have to fly! If so, post on the thread as I have lots of flying tips. Just go and enjoy yourself – cruising is better than medicine for us.

    • #30906
      Jen Cueva
      Keymaster

      Hi @stefanie,
      I have not yet been on a cruise with PH. I went on one months before I began to have symptoms. We had a blast. It sounds like you are familiar with cruising. The others will all work out fine with some extra planning ahead.

      Your pain benefits from oxygen are not uncommon. My pain management doctor told me that going so long with low oxygen can cause chronic pains when I started seeing her last year. I forgot the term and need sleep but saved it somewhere. I went with chronic pain 15 years almost before I would see someone. That is such good news.

      Have you flown yet with oxygen? It is much more simple now compared to my earlier PH years.

      Looking forward to that cruise should be exciting. Thanks to @sue-hewson for such excellent tips. I am ready for one after reading her post.

      I have flown with my oxygen and will again in August, but I may look into a cruise once we renew our passports. Thank you, Sue, this is such helpful information.

    • #30933
      Stefanie
      Participant

      Thank you for your great tips.  We are going on a 15 day to Hawaii and then a 10 day to Mexico, no flying thank goodness.  My husband has a cpap and we have cruised many times with it.

      I’m just getting used to the portable oxygen going to dr. Appts, but they are only two hours.   I have to say I am feeling better with the oxygen.

      thank you again.

    • #30935
      Sue Hewson
      Participant

      You’re both very welcome. I find flying more difficult now I am on more oxygen. At home I am continuous 3 and 4 pulse on my Imogen portable. But 4 is just a number not an amount – with 20 breaths a minute you are still getting less than one litre. So now I am nervous. No airlines seem to give you available oxygen on domestic flights but wonderful British Airways will give one person per aircraft 4 full litres a minute on Transatlantic. Does anyone know of any others??

    • #30937
      Stefanie
      Participant

      I really want to work this cruise out.  Do the cruise lines have vendors who rent concentrators.  The one I have at home is way too big and heavy.

      I don’t mind buying a portable one that lasts several hours.  Where do you start?

      I had a lung perfusion exam yesterday.  So far all I know is my oxygen is low and haven’t been diagnosed with anything.

      thank you all again for your help.

      • #30942
        Jen Cueva
        Keymaster

        Hi @stefanie, I know one PHriend went on a cruise a few years back. She called and had all set up on the cruise before she arrived. She said they provided a concentrator and extra tanks as needed. That helped her make it through the cruise without any issues.

        Because I have not yet cruised with my oxygen, I don’t know much about how they are making accommodations now for those needing oxygen. But I would think it should not be an issue.

        Maybe @sue-hewson has more updated information on that.


        @sue-hewson
        , I use my Inogen on flights, but I have not traveled more than domestic flights any longer than 4 hours so far. I use my Inogen with extra batteries. Yes, none offer in-flight oxygen unless it is an emergency. This is what we were told two years ago when we last flew.

    • #30960
      Mendo Bruce
      Participant

      Stephanie,

      Your oxygen provider should provide the oxygen you need at your point of departure (even if this is in another state) This should include a nightime home concentrator for your cabin and a portable concentrator (or enough tanks to last the entire cruise and trip home) for walking on the deck and travel to and from the boat.

      Be sure to let your provider know ASAP as they may have their portables available on a first come basis, also they may need to contract with another provider at your departure site. Ask for anyforms that need to be filled out both from your provider AND the cruise line.

    • #30975
      Aunt Lizzie
      Participant

      Hi Stefanie,  Something I don’t think anyone has raised, is the risk of contracting COVID on cruise ships.  Here in Sydney, Australia, we had an awful occasion when a huge cruise ship docked in the middle of Sydney, and all passengers disembarked without any health checks.  Respiratory problems had been infecting passengers before the docking, but no-one raised the alarm, so the infection was spread far and wide, a large number of people died.  Same thing happened in Japan.  The ventilation systems in cruise ships has not been designed to prevent this.  I love cruises as much as you, but I could not be paid to even consider going on one yet, and I don’t see the COVID spread abating for a long while yet.   It only takes one person to infect a large number.  Of course things could be OK by December – fingers crossed.  Do you have travel insurance if you do have to cancel?

    • #30985
      Stefanie
      Participant

      Thank you everyone for your great tips.  I would not consider a cruise unless 100% of the crew and passengers are vaccinated.  I know Oceania is making sure everyone is vaccinated.  That is our favorite cruise line, but not the one we are going on this year.

      but I appreciate all the wonderful ideas everyone has.

      • #30997
        Jen Cueva
        Keymaster

        Hi @stefanie, I hope you will feel safer traveling by the time you are ready for your cruise.

        Being prepared in advance is key, so you are ahead of most. Once you go and return, we would love to hear about it.

        Are you planning to travel using other options before your cruise? For instance, any road trips or flights?

    • #31042
      Stefanie
      Participant

      We’ll I just found out that Princess cruises is not allowing oxygen for the foreseeable future, so we are going to have to cancel.  Some of the cruise lines are allowing oxygen.

      We don’t have any other trips planned right now.

      thank you for all of your help.

    • #31104
      Stefanie
      Participant

      Hi Colleen,
      Some of the cruise lines are allowing oxygen, but unfortunately princess is not at the moment. I think after cruising starts up again and things are normal, what’s normal anymore, that they will allow oxygen.

      Thank you for your kindness.

      I’m still getting used to this and still have more questions, but I will read up on some other topics.

      • #31109
        Colleen Steele
        Keymaster

        @stefanie please feel free to ask as many questions as you wish. That is what we are here for. It doesn’t matter how long ago something was posted, if you want to comment or question something, please do. You may also start topics of your own at any time.

        If you have any questions about using the forums, please let me know.

    • #31136
      Cindy
      Participant

      I am a Nurse of 24 years.

      Yes, it is the Oxygen, I am it is working.

      The cruise, yes, you can go, With your Oxygen. I recommend a portable concentrator,
      But, you must see your Pulmonary Dr. and talk to him/her, before you do Anything.
      The cruise my want a letter from your Dr. stating it is safe for you to travel.
      If your Dr. gives the green light, then you need to contact the cruise people and
      find what, what they require, if anything.

      Cindy

    • #31141
      Jen Cueva
      Keymaster

      Thanks, @cindy2021, for your expert advice and words of encouragement for others. Yes, my POC is a lifesaver, literally, LOL

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