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Charys

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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 !
 

rose

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Charys,

Welcome to the forum.

I can only give you information about Continental, but maybe you can take this and see if you're better able to communicate with the airline your dad wants to fly on,

Continental has a service where a traveler can use medical oxygen supplied by Continental. It is quite common for passengers to use this service, they just aren't allowed to bring their own oxygen tanks on board. (it is a safety hazard and prohibited by FAA regulations, the reason being, there is a limit to how much of a flammable matter that can be transported in the cabin)

So, you could purchase the oxygen through the airline he is to travel on, and have the airline supplied medical oxygen connected to his bi-pap rather than just to a cannula for his nose. Your father's doctor will need to fill out the forms, and tell the airline how many bottles he might be expected to use during flight. All of those bottles of oxygen will be pre boarded by an agent at his assigned seat. I do not see how there could be an objection to this, and am surprised it was not offered to you as a suggestion. Continental also now allows oxygen concentrators.. There is paperwork required for this, he couldn't just bring it on the plane, but they are still permissible. (An oxygen concentrator separates the oxygen from the air). Again, I can only speak to the guidelines I knew as a Continental employee. I pulled out my FAA flight manual to make sure I was giving out the correct information. I would guess, but do not know, that all airlines would be governed by the same basic guidelines.

The best way to proceed is to call the reservations department of the airline he is to fly on (Quantas?) and ask about how to arrange for medial oxygen for him to be boarded for his flight. There will be a fee for this, although I think probably he will be reimbursed for any oxygen he didn't actually use.

Which ever way it is accomplished, to avoid extra unneeded hassle, have some clear, easy to read paperwork explaining what he is using, to bring along (in addition to the forms that will need to be filled out for the actual process to reserve the oxygen), and have it for the customer service agent that will do the actual set up at your father's seat at the time of boarding, also double check to make sure that this agent has briefed the head flight attendant, so everyone is in the loop, and knows what it is used for, and that it is acceptable. It is imperative that the flight crew understand in advance that what he is using is approved.

Good luck to you, I hope this helps. :)
 

Al

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I would call the airline and ask for their medical dept. for travellers. There should be no difference for the CPAP or Bipap if it has back up batteries. As you say it just a form letter, speaking with a real person may make a difference. You might have to get the doc to write them explaining that there isn't really a lot of difference between the 2 machines. We know there is but we have a saying over here that BS baffles brains. Some of the people sending out these letters wouldn't know the difference between machines if it bit them in the butt.

AL.
 

Al

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You may want to go to Mike's site aka www.quadbliss.com and read his tips for airline travel.

AL.
 

rose

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I'd misread this.... Al, I'd thought that the problem was with the use of personal oxygen with the machine (which is forbidden) when I first read this.

When I saw your response, I read it over again... the thing is, a BiPAP is a CPAP. They both have continuous positive pressure airflow, its just that the bipap is at two different levels. (which of course I know that you know) but, my point is that it technically is just a version of a cpap . I learned this from watching Respironics little video during one of my titration sessions. They call it a variable pressure cpap, or something to that effect. The machine looks exactly the same, and no one at the airlines is going to know that it is in any way different than a regular cpap. Its like the same model car, and one has an automatic transmission, and the other is a stick. The aircarrier would have no more concern about if it is a bi level or one level, that they would in having an interest in what pressure it is set at. I think that they too might have thought that Charys's dad wanted to bring a machine that supplied oxygen onto the plane.

There is not a problem with bringing a BiPAP on board. .... I'd misread it to be the concern over trying to use personal medical oxygen. The passenger must use the airline's medical oxygen.

Charys, I hope your dad has a wonderful time on his excursion. :smile:
 

Charys

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Thanks so much for your replies, i really appreciate them. I will relay the information to him and let you know how we get on with it. At the moment he thinks he won't be going to NZ, and I so hope that we get this resolved. He is flying wtih Air New Zealand and although I've seen loads of positive info. from Quantas I have to say that at the moment I am a bit disappointed with Air NZ who are not being terribly helpful.
 

Charys

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Can I just ask another question of you Rose and Al ? If the CPAP (Bi) ventilator is not on the approved list of the airline (which I have now found out it is not), what is the likelihood of the unit being approved ? Has anyone had experience of this problem and not been able to fly ? I know that without it for use on the flight he can not travel so everything seems to be resting on the approval of the unit. All this needs to be put in palce very quickly, as he is travelling in a matter of weeks and was only diagnosed as needing the unit a couple of weeks ago.
 

rose

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Charys,

I understand your frustration. There is no reason for this one airline to exclude any form of CPAP machine, whether it be a straight cpap or bipap. I know that the manufacturers of the machines tell you right up front that you can fly with them. So that might be an avenue to pursue - get something in writing from the manufacturer of his machine, and submit it to the airline.

I remember when I first was evaluated for use of it, the respiratory therapist was telling me how I could even still fly with it, which I thought was a hoot, - like I was going to sit in the jump seat with a mask on while I was working. :smile:

You do need to get it resolved, and have a copy of the paperwork for him to keep with him during the flight, I've seen too many inexperienced flight attendants tell a passenger they can't do something (that they can) just because they don't know any better and are trying to comply with regulations (they think).

So, maybe the manufacturer's website would have something useful for you to submit.

Also call the airline and talk to someone about your dilemma. Be very clear that his machine does NOT generate oxygen. This is the big thing. You may remember the Value Jet crash in the Florida Everglades a number of years ago? The cause was found to be from the oxygen generators that they were transporting thin the cargo hold.

Other than that, maybe check out Quantas,.. I'm assuming that your dad has already paid for his tickets on ANZ, so there are financial considerations to be had as well, but, its worth going forward with something that has meant so much to him. Making memories and fulfilling dreams are two important aspects of quality of life.

Good luck, and please let us know what you are able to accomplish.
 

Charys

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Thanks Rose. I have looked on the maufacturer's website and indeed they quite clearly give flight advice for the machine and say that there is no issue with using it. I am most grateful for your thoughts as it gives a direction to start proceedings. This is all, as you can no doubt tell, very new to me. I have already advised him to start searching Quantas as they seem less rigid and more clued up about CPAP etc. As you say,e ven though the tickets/flights are all booked, the money isn't the issue here, as you rightly say this is a 'dream holiday' and is worth more than money. Thanks so much again, I will let you know the outcome.
 

Al

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If worse comes to worse would it be possible to split the longest portion of the flight and stop for 1 night, sleep and then the bipap issue is nonexistant. This would be a last resort and more expensive but might work.

AL.
 

Charys

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Well, a minor update here, for those kind people who gave me advice a few days ago. After speaking to the respiratory consultant, who said that my Dad could not use another deivce for the flight as this is the right one for him (he was possibly thinking about asking to use one from the airline approved list, my Father has contacted Air NZ again. This time he has asked for approval for his Bi-level CPAP (note change in terminology LOL!) and given details of the model, manufacturer, medical details and so on. Basically, given them every bit of information that we had to hand. He asked for some urgent feedback as to the likelihood of approval. They did not get back to him today, but possibly they might have referred it to medical/engineering dept. and are awaiting a response ? So in the meantime Quantas were approached, who can provide flights in a few weeks time, a slightly different route but getting there in the right date. They were very positive and see no problem in the use of his device. Those tickets will be on hold for a couple of days to give Air NZ time to sort things out, and if not then Quantas will be flying them. I am here breathing a sigh of relief, as they will certainly be getting there for their holdiay of a lifetime, somehow ! :D
 

Charys

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Approval has been given for th Bi-level CPAP ! Hurrah. Thanks for advice when I needed it most guys. :D
 

Al

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Glad to be of service. Hpoe he has a great trip.

AL.
 

Marjorie R. Wilcox

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I am SO happy this has worked out for our prospective traveler, but let me put another spin on the problem, as Rick and I had to travel by Amtrak train last summer for our vacation instead of flying.

When a person needs this kind of assistance to sleep, it is crucial enough for their health to warrant liability issues for the airline concerning the possibility of your death. We all know, and they may not catch it, that a Cpap is merely for sleep apnea and the bipap for a MND. The airline cannot be responsible for your health in that scenario even though you take on board your battery backup.

We were told that Rick could fly if he took a physician along with us. That physician would be responsible for his health on the flight.

Everybody has to protect themselves against a lawsuit. To us the breathing machine is as simple and comfortable as carrying a comb or a toothbrush, but to them it is that startlingly flagrant life saving device..

If you travel by train you see, and have a medical emergency, you can get off at the next stop more readily than you could on a plane.

We had two weeks time for our vacation to Montana and had to cut it short for four days travel time. At least we so enjoyed seeing parts of the country we wouldn't have seen from the clouds, but it is a shame we couldn't spend that time with my brother too, visiting Yellowstone Park etc.

Hey, one good thing came of it. We asked for the least costly sleeping accomidations, and were given, at no more cost, the private spacious wheelchair accessed room on the train..... with our own bathroom! We paid for economy and went 3/4 of the trip first class. Can't beat that!

Count your blessings where you can, and if you can't, then look for some!
 

rose

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Charys,

I'm happy to hear that it all worked out. I hope they have a wonderful time. I'm sure your dad appreciates what a loving daughter you are. take care! and keep in touch :)
 
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