Questions about oxygen

[Randi]

My son has heart failure & is now on oxygen 24/7. He has been using it just at night with a CPAP machine & we were able to travel to WDW by using just the CPAP for a week. But now I am really ignorant of how to manage just everyday life much less travel. I have read other readers' questions & answers so I have learned some info, but anything you can share would be most appreciated, either for traveling or just living connected to a machine! Are there any web sites, I haven't found much so far.
Thanks.

 

[SueM in MN]

First, some pixie dust to you in learning how to deal with your new challenges.
I work with some Respiratory Therapists and I will ask them (after Monday) if they can point me toward any really good sources of info.

 

[laurie31]

Originally posted by Randi
My son has heart failure & is now on oxygen 24/7. He has been using it just at night with a CPAP machine & we were able to travel to WDW by using just the CPAP for a week. But now I am really ignorant of how to manage just everyday life much less travel. I have read other readers' questions & answers so I have learned some info, but anything you can share would be most appreciated, either for traveling or just living connected to a machine! Are there any web sites, I haven't found much so far.
Thanks.

Try these

http://www.lungusa.org/support/traveloxygen.html

http://www.breathineasy.com

http://www.travelwithoxygen.com/



The following companies can arrange oxygen in a growing number of destinations around the world. They do charge a fee for the service, but will take care of all the details.

TravelMed 1 800 878-3627 thom@travelmedintl.com
The Oxygen Traveler 1-937 848-7100 Oxygen0202@aol.com
Medical Travel (800)778-7953 oxygen@medicaltravel.org

(note I have not personally dealt with any of these - I just found the info...)

Good luck! and as for more personal tips, is there a support group in your area for parents of technology dependant kids? You will get the best advice from a parent who has experienced traveling with technology. Maybe your MD/case coordinator/etc could put you in touch with someone? Usually they know if a mom wouldn't mind being asked such things. Most parents are happy to share their knowledge to help others see that life can still be lived to the fullest, even though it will require more planning and effort on your part. Go to Disney, go to the beach, go to church, go to the grocery store!

Laurie

 

[Randi]

The web sites you gave me were quite informative. I hadn't thought about looking under breathing difficulities. My son is an adult, age 33, but he has had this genetic condition since birth. It causes lots of problems, and is progressive so the heart failure was not totally unexpected. He had his first spell nearly 4 yrs ago., but has been able to work, etc. Now the last episode he had in July has led to the oxygen 24/7 and he can no longer work. He has had a lonely life, even with school and work. People can be judgemental as we all know. He does so love WDW and if there is any way to get him there again, I will do it. In Dec 2004, the support group for the condition he has is having their annual convention at WDW. The thing is that most of the children who have MPS are still children as the life expectancy is not great. So at his age he is more of a pioneer for the others and there aren't many answers for us.
Again, thanks. I look forward to reading what info a respitory therapist can supply. We have a doctor who is also not well informed and as of yet we don't have a respitory theripist.

 

[laurie31]

Oh wow - sorry for assuming your son was still a child. On the one hand, I'm glad he has been able to live so long, but on the other, I know you want him to live to be 80+ like everyone else (I hate that line people say when a child with health problems dies "well, you're lucky he lived this long." No one would say that to a parent who lost an able-bodied child in a car wreck!) I am not a parent of a differently abled child, but I am a nurse who works with technology dependant kids. I love to see them living life to the fullest. Many of them are very intelligent and are capable of lots of things, just because they can't walk, or can't breathe on their own doesn't mean they don't think and feel, or want to play and love and be loved. Most of all, they are capable of showing us the finer things in life.

I'm sorry your MD isn't as informed as you'd like. I'm also surprised you don't have a RT when your son is oxygen dependant and also on cpap. Do you have a home health company that supplies your O2? Just thinking about where you could go for more info. Hopefully someone with more personal experience I have will answer

Pixie dust for you!! I hope you make it to the convention in 2004 -and I hope you can go to WDW before that as well!!

Laurie

 

[tdfam]

I am a respiratory therapist/General Manager of a home care company with 25 years experience (19 years experience in homecare). There are several no hassel options for you and your son to use when traveling while using oxygen.
1. Have your current provider arrange for your oxygen needs for you to be provided at your hotel when you arrive if you are flying.
2. Make sure you have an oxygen conserving system and extra tanks for your trip if you are going by car. The conserving systems work great and can allow you nearly 35hours at 2lpm with an E type tank our 5-6 hours with the smaller m6 tanks. They pulse the oxygen on inspiration onl therefore lasting a long time. You should also check with your provider to see if they have the small travel concentrators to use in your hotel once you arrive.
3. Make sure to take a copy of your prescription with you in the event you need assistance while on the trip.
I would be happy to speak with you if you have questions, please feel free to email me.

 

[SueM in MN]

I'm glad other people stepped in and answered your questions. We've been very busy at work and I didn't get a chance to ask anyone. It looks like you got some excellent resources though.
Another one that I had forgotten about is www.medhelp.org
They have a lot of good info in the form of questions people have asked. You can search their forums or ask additional questions.