Oxygen Use at WDW

[Checkers]

My DH has advanced COPD and just recently was placed on oxygen 24/7. We have a trip scheduled in Dec. and are in need of guidance. We will be flying (2 hr. flight) and know that portable oxygen will be needed. What we don't know is how long these last since from time of departure until we arrive at the resort it will probably be at least 3 1/2 to 4 hrs. and he would need to use one when he goes to the parks, etc. Also, he will need a portable concentrator for the room once we get there.

He is on Medicare with a supplemental so it should be covered insurance-wise. Should we expect our local supplier (with instructions from his doctor) will be able to arrange something with a supplier in the FL area to take care of this?

Any information or guidance is greatly appreciated. He doesn't want to go because he thinks it will be too much trouble. He will be using an ECV and has used one the last several years. TIA.

[Pirate Granny]

We didn't need potable oxygen, but did have a night concentrator. We used Apria and had no issues. They even provided a wheelchair. Pick up and delivered to our resort. Wonderful service

[Checkers]

Thanks, Pirate Granny. Our local supplier is also Apria so that should make it easier to coordinate.

[Mrs Bus Driver]

I haven't done this myself yet but have looked into it. I have been on oxygen 24/7 for about a year and a half, been on tanks, portables and home concentrators. It can be hard getting the information you need as most people don't know, even the ones selling you the equipment and doctors for the most part don't have first hand experience. Yes start by contacting your supplier. As for battery life that depends on a lot of things, is he on pulse or flow? How many liters? I can only use myself for an example. If I want to be active I have to have a flow of 4 liters. Portables usually only go to a flow of 3 so I have to use a tank it can go to 5, that means that I need a wheelchair/scooter if want to go the parks. If I go with a wheelchair that means someone has to push all day, I won't do that to my DD and a scooter would let me get around on my own if I want. BTW when at home I don't use a scooter, I have a really nice walker, it carries my tank and portable and I can sit on it if I need to. Talk to your doctor about getting him a walker it can make a world of difference in his ability to get around and he might be able to use it at the parks. If he can go with pulse of 2 to 4 that opens up a lot. When I could get around on pulse of 4 or less I could use an inogen one with the larger batteries (double size) and get from 4 to 8 hours per battery depending on the setting. I still use it in my car and when I am out and seated it helps extend the life of my tanks. Also if flying you need a prescription from your doctor for the airline and contact your airline well before (like when you get your tickets) each airline has their own rules about what portables are except-able though most portables are. Bring extra batteries and a charger, some planes have plug ins and you will want extras for the parks. Also the higher the altitude the more oxygen he will need so don't be afraid turn it up (talk to your doctor first of course). Oh and I almost forgot to mention if he is using tanks he will need a portable for flying or the parks, because you can't use tanks on plane or in the parks, not that you would want to. Know its a lot to think about but with a little planing he can do pretty much anything he wants. Sorry this post has been so long but I know what it is like when you first go on oxygen. If you have any questions feel free to ask, but always talk to your doctor before doing anything.

[Mrs Bus Driver]

One more thought, depending on his oxygen needs some portables can be used in the room.

[Checkers]

Thank you, Mrs. Bus Driver, for the wealth of information! He is mobile around the house and doesn't need a walker, however, at WDW he does rent a scooter. He has a home concentrator and for sedentary and sleeping he uses 2 units and when mobile he uses 4 units. The concentrator is located inside the front door and the piping is over 75 ft. long and reaches throughout most of the house.

I spoke with the provider and he said to talk to the Dr. about making arrangements for a more portable unit which I know will have to be used on the plane and in the parks.

One question -- what is the difference between pulse and flow? I think what he has would be considered flow.

It would be ideal to have a portable that had a battery that would last 4 hrs. and be rechargeable. We could then have a concentrator delivered to the resort for use in the room. Am I just dreaming? Thanks again for your help!

[Pirate Granny]

Apria provided free of charge since we didn't need our local Apria..I can't remember the lady's name cause it's been 6 years ago.

[Mrs Bus Driver]

Thank you, Mrs. Bus Driver, for the wealth of information! He is mobile around the house and doesn't need a walker, however, at WDW he does rent a scooter. He has a home concentrator and for sedentary and sleeping he uses 2 units and when mobile he uses 4 units. The concentrator is located inside the front door and the piping is over 75 ft. long and reaches throughout most of the house.

I spoke with the provider and he said to talk to the Dr. about making arrangements for a more portable unit which I know will have to be used on the plane and in the parks.

One question -- what is the difference between pulse and flow? I think what he has would be considered flow.

It would be ideal to have a portable that had a battery that would last 4 hrs. and be rechargeable. We could then have a concentrator delivered to the resort for use in the room. Am I just dreaming? Thanks again for your help!

Okay I will start with pulse/flow. When using pulse it is only activated when he breaths in. Flow is continuous (on all the time). If he can use pulse it will make batteries last longer. He needs to be able to breath in deeply enough, you will have to talk to the doctor to know if he can do this. There are some portables that can do both pulse and flow. Using myself as an example I use pulse when seated, like on a scooter, then switch to flow when I get up like to get on a ride. This would make the battery last longer. Most portables have batteries that last from 2 to 4 hours. Flow uses more battery life then pulse and when you turn up the liters from 2 to 4 you use more battery life. When talking to the people who rent the equipment they always tell you the longest the battery will last. Which is usually on a pulse of 2 you will get 4 hours, but on a pulse of 4 you only get 2 hours.
All portables are rechargeable. They have lithium batteries, you will have a cord to plug the portable in and it can be plugged in while he is using it. If you will have a car be sure to get a car charger. I have one in each of my cars as well as the one in the house. That way I can keep my battery charged in the car.
Now just speaking for myself for a trip to WDW I would have a separate charger for my extra batteries (at least while on vacation). Take at least 4 batteries (unless you can get the bigger batteries) keep 1 on the charger and take 2 spares to the parks. My plan for hitting the parks would be to go in the morning then head back to the room either before or after lunch. Then I could recharge the batteries and myself and be ready for the evening fun.
And the last thing yes you can have a separate concentrator in the room be sure to ask your doctor to write the prescription that way. Make sure you Doctor writes the prescription so that he can get every thing he needs to be comfortable on vacation. Have fun on your vacation, wish I was going. :mickey:

[Checkers]

Okay I will start with pulse/flow. When using pulse it is only activated when he breaths in. Flow is continuous (on all the time). If he can use pulse it will make batteries last longer. He needs to be able to breath in deeply enough, you will have to talk to the doctor to know if he can do this. There are some portables that can do both pulse and flow. Using myself as an example I use pulse when seated, like on a scooter, then switch to flow when I get up like to get on a ride. This would make the battery last longer. Most portables have batteries that last from 2 to 4 hours. Flow uses more battery life then pulse and when you turn up the liters from 2 to 4 you use more battery life. When talking to the people who rent the equipment they always tell you the longest the battery will last. Which is usually on a pulse of 2 you will get 4 hours, but on a pulse of 4 you only get 2 hours.
All portables are rechargeable. They have lithium batteries, you will have a cord to plug the portable in and it can be plugged in while he is using it. If you will have a car be sure to get a car charger. I have one in each of my cars as well as the one in the house. That way I can keep my battery charged in the car.
Now just speaking for myself for a trip to WDW I would have a separate charger for my extra batteries (at least while on vacation). Take at least 4 batteries (unless you can get the bigger batteries) keep 1 on the charger and take 2 spares to the parks. My plan for hitting the parks would be to go in the morning then head back to the room either before or after lunch. Then I could recharge the batteries and myself and be ready for the evening fun.
And the last thing yes you can have a separate concentrator in the room be sure to ask your doctor to write the prescription that way. Make sure you Doctor writes the prescription so that he can get every thing he needs to be comfortable on vacation. Have fun on your vacation, wish I was going. :mickey:

Thank you so much! We meet with his dr. on Tues. for the 1st time since he has been on oxygen and at that time we will find out the results of the extensive testing. I will definitely be asking about all the options you recommended. Still trying convince him to go. We are going again in Feb. (meeting our daughter, son-law and grandchildren from Seattle) so he thinks he will be more comfortable with the oxygen by that time.

Thanks again to all. I so appreciate all the advice and recommendations more than I can say.

[WDWdriver]

You will be okay at most of the attractions, but be aware that some of the rides require that you secure or stow all loose items, which may preclude you taking portable oxygen on board. Check with a CM at the entrance.

Also, a ride can break down unexpectedly at any time (most utilize complex systems with computers and many moving parts). It can take up to 45 minutes to evacuate guests from a stopped ride. So be sure you have sufficient oxygen with you.

[Mrs Bus Driver]

You will be okay at most of the attractions, but be aware that some of the rides require that you secure or stow all loose items, which may preclude you taking portable oxygen on board. Check with a CM at the entrance.

Also, a ride can break down unexpectedly at any time (most utilize complex systems with computers and many moving parts). It can take up to 45 minutes to evacuate guests from a stopped ride. So be sure you have sufficient oxygen with you.
Agreed there are some rides like coasters that should be skipped. On water rides bring a poncho to keep your portable from getting wet, just don't cover to tightly as the machine needs to take in air. Many portables are not much bigger then a purse and can be stowed. The extra batteries can go with you in another bag so that you can switch one if necessary, but that really shouldn't be a problem on rides as the portables tell you how much battery life they have left. Thank goodness Disney has more to do then just coasters. In the past I was always about the rides especially the coasters. Now when I go I will be doing more shows and the tamer rides. My favorite rides like POC and HM are very doable. There are always risks in everything we do but you shouldn't let that stop you and your husband from doing things. It is much worse to stay home afraid to do anything. Portable oxygen will make it possible for him to get out. I know how easy it is to get depressed when suddenly your on oxygen 24/7 and you wonder how you will be able to do anything again. Well with portable oxygen I have been able to get some of my life back. When I go to the grocery store I just put my portable in the basket of my shopping cart and away I go. I am able to drive because of my portable and so my DD doesn't have to take my to all of my appointments. I love going places like museums and craft fairs, having a walker which carries my tank and portable, while giving me a place to sit when needed means I can still do those things. And you would be amazed at how nice people are even though I know how to get through doors with my walker people are always opening them for me and offering to help carry things for me. Sorry I'll get off my soapbox now I just don't want you and your husband to get discouraged.

[Checkers]

Agreed there are some rides like coasters that should be skipped. On water rides bring a poncho to keep your portable from getting wet, just don't cover to tightly as the machine needs to take in air. Many portables are not much bigger then a purse and can be stowed. The extra batteries can go with you in another bag so that you can switch one if necessary, but that really shouldn't be a problem on rides as the portables tell you how much battery life they have left. Thank goodness Disney has more to do then just coasters. In the past I was always about the rides especially the coasters. Now when I go I will be doing more shows and the tamer rides. My favorite rides like POC and HM are very doable. There are always risks in everything we do but you shouldn't let that stop you and your husband from doing things. It is much worse to stay home afraid to do anything. Portable oxygen will make it possible for him to get out. I know how easy it is to get depressed when suddenly your on oxygen 24/7 and you wonder how you will be able to do anything again. Well with portable oxygen I have been able to get some of my life back. When I go to the grocery store I just put my portable in the basket of my shopping cart and away I go. I am able to drive because of my portable and so my DD doesn't have to take my to all of my appointments. I love going places like museums and craft fairs, having a walker which carries my tank and portable, while giving me a place to sit when needed means I can still do those things. And you would be amazed at how nice people are even though I know how to get through doors with my walker people are always opening them for me and offering to help carry things for me. Sorry I'll get off my soapbox now I just don't want you and your husband to get discouraged.

We aren't big thrill ride people so he won't feel we are being deprived. We like Soarin', TSM, HM, POC, those type of rides. We can always find things to do. We are anxious to see his Dr. this week to find out all our options but I am optimistic.

Thanks for the encouragement!:mickey:

[Checkers]

Well, I'm back and the news is not what we expected. My DH is not able to use the pulse portable oxygen as he requires more oxygen than they provide. He has decided not to go to WDW in Dec. but insists I go with my sister in his place.

We are, however, still planning on going in Feb. and I am hoping that his doctor will have some other ideas for us. I may just drive down if it is easier. Right now when he goes anywhere he has to drag an oxygen tank (and those things are heavy). It seems to me there has to be an easier way!

Thanks for all the advice and information.

[Mrs Bus Driver]

Sorry to hear that, but if he needs a flow higher then 3 I don't believe you can find a portable that will do it. It may take him a while to adjust to this new situation. I'm going to suggest that you ask your doctor about Pulmonary Rehabilitation classes, they will help with breathing and exercise techniques. Insurance should cover it for up to 10 weeks after that you have to pay to continue. The classes did me a world of good, being around other people with similar problems and getting to exercise. They even convinced my to get a walker (which I really didn't want because I'm not that old). I have to go down a flight of stairs where I live, thats the easy part well I learned how to go up them, they still take the wind out of me but I no longer have coughing fits at the top. They provided extra classes for free about diet, medications and a lot of other subjects that were very helpful. Also he should have an oximeter (your doctor should be able to write a prescription for it) that will allow him to check his oxygen levels often so he can learn how to better do things and when to slow down or stop for a few minutes while his oxygen levels go back up. I have one and always take it with me when going out. Hopefully things will get better but if there is anything you want to ask me about please do.