Charys
New member
- Joined
- Dec 12, 2008
- Messages
- 9
- Reason
- Loved one DX
- Country
- UK
- State
- Hampshire
- City
- Southampton
Hello all, this is my first visit to this site, or any ALS/MND site, and I am hoping to glean some valuable information from experienced people here.
My Dad has MND, and has now reached the stage of using night time BiPAP ventilation. He had the fitting done earlier this week and had managed to use the unit very well for a number of full nights. Before he was diagnosed as needing the BiPAP unit he booked his dream holiday of a lifetime, a few weeks in New Zealand. At the time of filling in the disability forms he required no additional medical equipment, but now, of course he has had to notify them of the need for on-flight oxygen and the use of the BiPAP (on lowest settings) for any period where he sleeps. He had the fit to fly test two days ago, and the physios in the pulmonary unit seemed certain that there would be no problem with him flying using the BiPAP, they said they knew many people who did.
The airline have replied with a standard letter, saying that he can not use the machine on the flight and only CPAP can be used ! (it has an internal battery and a spare battery ) He is devastated, it has been a taxing week with various hospital visits, and this is his main focus for the future. I don't even know where to go on this problem ? What can we do ? Why are they not allowing it ? He has got back in touch with his physio, who is speaking to the consultant to find out if he could just have oxygen for the flight alone, but I suspect this will not be sufficient as he will need to sleep on sch a hugely long flight.
So, my questions are this, and I'm sorry for so many but I am so desperate on his behalf......have any people here flown using BiPAP ? Which airline did you use ? Is there anything that we could do to change the decision of the airline or would their policy be black ?
Thanks for anyone reading this, I am hopeful for some replies and advice. Best Wishes to you all !
My Dad has MND, and has now reached the stage of using night time BiPAP ventilation. He had the fitting done earlier this week and had managed to use the unit very well for a number of full nights. Before he was diagnosed as needing the BiPAP unit he booked his dream holiday of a lifetime, a few weeks in New Zealand. At the time of filling in the disability forms he required no additional medical equipment, but now, of course he has had to notify them of the need for on-flight oxygen and the use of the BiPAP (on lowest settings) for any period where he sleeps. He had the fit to fly test two days ago, and the physios in the pulmonary unit seemed certain that there would be no problem with him flying using the BiPAP, they said they knew many people who did.
The airline have replied with a standard letter, saying that he can not use the machine on the flight and only CPAP can be used ! (it has an internal battery and a spare battery ) He is devastated, it has been a taxing week with various hospital visits, and this is his main focus for the future. I don't even know where to go on this problem ? What can we do ? Why are they not allowing it ? He has got back in touch with his physio, who is speaking to the consultant to find out if he could just have oxygen for the flight alone, but I suspect this will not be sufficient as he will need to sleep on sch a hugely long flight.
So, my questions are this, and I'm sorry for so many but I am so desperate on his behalf......have any people here flown using BiPAP ? Which airline did you use ? Is there anything that we could do to change the decision of the airline or would their policy be black ?
Thanks for anyone reading this, I am hopeful for some replies and advice. Best Wishes to you all !