NvrGiveUp
Active member
- Joined
- Jun 12, 2007
- Messages
- 42
- Reason
- CALS
- Country
- US
- State
- FL
- City
- Orlando
Hey everyone. Sorry to have been absent for a while... was busy graduating and starting grad school and visiting lots of doctors with T. It has been crazy. The time in a day keeps getting shorter and shorter. 
Well... my question is has anyone taken a LONG plane trip before while having to use a bipap machine? We are going to Brazil and the long plane ride that we are worried about is the leg of our trip from Miami to Sao Paulo... I think it was around 10 hours flight? American Airlines does allow bipap machines and the reservationist wasn't exact about the details but informed me that a disabled services specialist would be calling us tomorrow to answer all of our questions and make any other necessary arrangements. It was really a relief to deal directly with the airline after dealing with customer service reps from the internet "deal" businesses who really didn't understand my questions. So even though it was a few bucks more, and I do mean few, we booked directly with the airline. We even got the days and times that we wanted. The other worry was about baggage claim and making sure I wouldn't be stuck trying to tow suitcases and push T's wheelchair at the same time. It will be American Airlines the whole trip so the luggage will (theoretically) be forwarded all the way. Of course we have to temporarily get the bags when we go through customs in Sao Paulo, but everything is near so after getting through customs, we just put the bags back on the little conveyor and then we are off to Recife (one more flight). Also, we will have assistance with an airport wheelchair at each airport, since her wheelchair will be checked once we get to the first flight's gate. I will be helping her board the plane since she can still walk short distances OK. Right now she still walks slowly around the house, but uses a walker at work. We use a wheelchair whenever a LOT of walking is involved.
So back to the bipap issue. The reservationist did tell us that we cannot use the plane power, something about liability if the power were to malfunction I think? I will find out for sure and let you all know the reason. SO this means buying an expensive battery pack? Does anyone know if these things can be rented? I saw a really nice one that I might buy against T's will (she doesn't want to buy something that will be used with rented equipment that we don't know how long she'll have). It was only 2 and a half pounds and had a recharger and nice case. It was from CPAP.com for $279.99. She has a Respironics "BiPap Synchrony S/T" and I just have to make sure the battery pack will be compatible. It is worded a bit confusing in the description, so I'm going to call and speak with their customer service. We are going to leave on September 10th so I don't have a whole lot of time to dilly-dally.
Unfortunately, T's lung function has decreased. Her doctor switched her bipap to one that has a backup rate (in case she doesn't take a breath within 5 seconds, it will give her a breath). This new fancy machine is a little too fancy. It seems like the tech who delivered it didn't know what the hell he was doing. Or maybe the machine just sucks (and blows!) It supposedly goes by your breathing rate and is supposed to "synchronize" with it. NOT! T is so pissed... she'll have two normal breaths and then a double "in" breath with a short exhale. We got the tech to come out last night at 11 PM to try to "fix" it. It still isn't right. Thank God that she is doing a sleep study at the hospital tomorrow night for the purpose of calibrating the machine to her exact comfort... because right now, it is not there. Unfortunately, she had to use it anyway last night and tonight and will be struggling to sleep well, but I guess it is better than nothing at all. When the guy came to drop it off originally I tried to talk him into leaving her other bipap just in case of a problem, but he wouldn't because of the doctor's order of a machine with a backup rate. As if two more nights was going to make a difference.
About lung function, or I should say diaphram (SP?) function, T is supposedly down to 30% now. The number isn't really accurate since they never measured this when she was first diagnosed. But the trend is decreasing. The doctor started talking about the trachea thing. I know not a lot about this... on purpose, because I guess I was avoiding the probability that this stage would get near. Can anyone who is currently using this let me know what they think. He was saying that some people like to wait until as long as they possibly can before getting it, while others get it a little earlier. Also her neurologist was mentioning a few weeks ago that she might want to consider getting a feeding tube soon. She has lost around 15 lbs but still eats and drinks fine... she just doesn't have a big appetite. She HATES the idea of a feeding tube because she will have to give up her exercises in the pool (which she will have to give up anyway if she gets the trachea thing?). Everything is so confusing. This is the main reason T wants to go home right now because she can still walk a little bit, is still talking, eating, drinking.... we were originally going to wait until after this semester ended (December), but thanks to the internet and my classes being recorded, we decided to go as soon as we could. We'll be back Oct 1st. I wonder if her family is going to let me bring her back? She hasn't been home in 5 years. Her mom was here this past Christmas, but T's condition has worsened quite a bit in the past 9 months. T still works... I don't know where she gets her determination. She is amazing. To be clear, even though things have gotten worse... we still haven't given up hope. This disease is horrible for everyone, but I think that it is even harder when someone is in their thirties or less and feels as if they have just begun to live. We are both still in disbelief about this. We're going to fight it tooth and nail. There is one thing that we are comforted by, we know this is not the end-all, be-all of life. We know, thanks to God, that we will see each other again if we are forced by ALS to physically part.
Please let me know of your airplane bipap experience if you have any... that is my most important question. I appreciate all the help and advice.
Prayers and Warm Wishes,
Pam
Well... my question is has anyone taken a LONG plane trip before while having to use a bipap machine? We are going to Brazil and the long plane ride that we are worried about is the leg of our trip from Miami to Sao Paulo... I think it was around 10 hours flight? American Airlines does allow bipap machines and the reservationist wasn't exact about the details but informed me that a disabled services specialist would be calling us tomorrow to answer all of our questions and make any other necessary arrangements. It was really a relief to deal directly with the airline after dealing with customer service reps from the internet "deal" businesses who really didn't understand my questions. So even though it was a few bucks more, and I do mean few, we booked directly with the airline. We even got the days and times that we wanted. The other worry was about baggage claim and making sure I wouldn't be stuck trying to tow suitcases and push T's wheelchair at the same time. It will be American Airlines the whole trip so the luggage will (theoretically) be forwarded all the way. Of course we have to temporarily get the bags when we go through customs in Sao Paulo, but everything is near so after getting through customs, we just put the bags back on the little conveyor and then we are off to Recife (one more flight). Also, we will have assistance with an airport wheelchair at each airport, since her wheelchair will be checked once we get to the first flight's gate. I will be helping her board the plane since she can still walk short distances OK. Right now she still walks slowly around the house, but uses a walker at work. We use a wheelchair whenever a LOT of walking is involved. So back to the bipap issue. The reservationist did tell us that we cannot use the plane power, something about liability if the power were to malfunction I think? I will find out for sure and let you all know the reason. SO this means buying an expensive battery pack? Does anyone know if these things can be rented? I saw a really nice one that I might buy against T's will (she doesn't want to buy something that will be used with rented equipment that we don't know how long she'll have). It was only 2 and a half pounds and had a recharger and nice case. It was from CPAP.com for $279.99. She has a Respironics "BiPap Synchrony S/T" and I just have to make sure the battery pack will be compatible. It is worded a bit confusing in the description, so I'm going to call and speak with their customer service. We are going to leave on September 10th so I don't have a whole lot of time to dilly-dally.
Unfortunately, T's lung function has decreased. Her doctor switched her bipap to one that has a backup rate (in case she doesn't take a breath within 5 seconds, it will give her a breath). This new fancy machine is a little too fancy. It seems like the tech who delivered it didn't know what the hell he was doing. Or maybe the machine just sucks (and blows!) It supposedly goes by your breathing rate and is supposed to "synchronize" with it. NOT! T is so pissed... she'll have two normal breaths and then a double "in" breath with a short exhale. We got the tech to come out last night at 11 PM to try to "fix" it. It still isn't right. Thank God that she is doing a sleep study at the hospital tomorrow night for the purpose of calibrating the machine to her exact comfort... because right now, it is not there. Unfortunately, she had to use it anyway last night and tonight and will be struggling to sleep well, but I guess it is better than nothing at all. When the guy came to drop it off originally I tried to talk him into leaving her other bipap just in case of a problem, but he wouldn't because of the doctor's order of a machine with a backup rate. As if two more nights was going to make a difference.
About lung function, or I should say diaphram (SP?) function, T is supposedly down to 30% now. The number isn't really accurate since they never measured this when she was first diagnosed. But the trend is decreasing. The doctor started talking about the trachea thing. I know not a lot about this... on purpose, because I guess I was avoiding the probability that this stage would get near. Can anyone who is currently using this let me know what they think. He was saying that some people like to wait until as long as they possibly can before getting it, while others get it a little earlier. Also her neurologist was mentioning a few weeks ago that she might want to consider getting a feeding tube soon. She has lost around 15 lbs but still eats and drinks fine... she just doesn't have a big appetite. She HATES the idea of a feeding tube because she will have to give up her exercises in the pool (which she will have to give up anyway if she gets the trachea thing?). Everything is so confusing. This is the main reason T wants to go home right now because she can still walk a little bit, is still talking, eating, drinking.... we were originally going to wait until after this semester ended (December), but thanks to the internet and my classes being recorded, we decided to go as soon as we could. We'll be back Oct 1st. I wonder if her family is going to let me bring her back? She hasn't been home in 5 years. Her mom was here this past Christmas, but T's condition has worsened quite a bit in the past 9 months. T still works... I don't know where she gets her determination. She is amazing. To be clear, even though things have gotten worse... we still haven't given up hope. This disease is horrible for everyone, but I think that it is even harder when someone is in their thirties or less and feels as if they have just begun to live. We are both still in disbelief about this. We're going to fight it tooth and nail. There is one thing that we are comforted by, we know this is not the end-all, be-all of life. We know, thanks to God, that we will see each other again if we are forced by ALS to physically part.
Please let me know of your airplane bipap experience if you have any... that is my most important question. I appreciate all the help and advice.
Prayers and Warm Wishes,
Pam
