A little worried about a long plane trip...

[NvrGiveUp]

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

 

[janf]

I Haven't Had The Airplane Bi-pap Experience But, We Flew Delta From Atlanta Ga. To Sacremento Cal. My Husband Was So Worried But We Were So Very Pleased They Come To You Push You Ck Everything In For You And Help With Baggage. They Did Everything For Us. You Will Be First On The Plane .and We Were Last Off. We Bought The Addapter For Our Car To Plug In But I Feel Sure You Could Rent Them At Med Rental Supply . Don't Worry Enjoy Your Trip Do Take Something If You Have Pain. Hope This Helps. Janf

 

[NvrGiveUp]

Anyone else know more about this? Flying soon.

Hey, anybody else have any advice for me? The trip is in 1 week. So far I have found out that insurance companies think that PALS should just stay home. They suck. Well, I did just go ahead and buy the DC adapter plug thingy that Respironics says to buy. This will plug into a cig. outlet in a car, but also another item that I bought converts that cig adapter into battery terminal adapters. $50 bucks just about. The next thing I did was buy a deep-cycle marine battery with 110 Ahrs, which I heard should last 3 nights for the bipap she is using and the current draw. Next I will buy a dolly to roll the thing around on. At least when and if she has to change machines, we will hopefully be able to use the same battery, instead of spending $400 on a battery pack made specifically for the machine she is using now.

So far the American Airlines people have been very helpful, and also the TAM airlines that operate the AA flight in Brazil. So she will be allowed to use the bipap as long as it is with our own battery power, just not during take-off and landing, which is fine. We are getting a letter from her pulmonologist just in case security gives us a hard time, even though the airline didn't request one.

I hope that our trip will be a good one. I really hope that T will be happy to see her home country again. My biggest worry is that I hope her lung function will not decrease while we are on the trip because I think that soon after we get back she may have to get the feeding tube. I saw that sometimes PALS have to do this even before they have trouble eating if their lung function starts to decrease close to a certain point due to the anesthesia. I'm kind of pissed that her doctor didn't mention this danger. Let me know if you have any pointers on this as well.

Thanks!
Pam

 

[brooksea]

I don't have anything to add to help you out, but was curious about how you handled the insurance dilemma. Did you have to pay an astronomical amount?

 

[NvrGiveUp]

well... insurance wants you to stay home

Hey Jimercat,

I spent about $270.00 in order to make T's bipap useable on the plane. About $50.00 was for the DC plug for the bipap machine and the battery terminal clamps that plug into it. The battery was $217.00. At least the battery could be used for many things that require 12 Volts DC current, so if for instance she has to change machines again, we will probably be able to use it still, unless the new machine needed more voltage. Also we'll be able to use the DC cig lighter adapter plug for car trips like the one we took a few days ago (3+ hrs)... so I won't have to worry if she dozes off. It is a good thing we got the marine battery, since it is hurricane season and you never know how long you might be without power.

I say insurance companies want PALS to stay home because T's didn't cover battery packs or anything associated with it (adapter, etc.) Maybe just Aetna... I don't know how others have fared with their insurance providers. Just doesn't seem fair to me.

Pam :-?

 

[brooksea]

NvrGiveUp,

thanks for the info. Hope the trip goes well! Keep us informed. Y'all are helping others here see that PALS are not limited to confinement.

Good luck!

 

[Rae]

Long plane ride

Hi Pam,
Just a comment about T's swimming with a Peg Tube. My husband resisted getting one and I pushed him to get one. What a difference it made! He regained weight that he had lost and he never really had a problem with it. T should be able to swim with it - it will be under her bathing suit. My husband used to take showers with his on and we never had a problem. Also, I'm glad you got the BiPap battery dilemna straightened out. We had the same machine. I got a small motocycle battery with cables and a small charger. We only had to use the battery a couple of times, but it worked great. I got everything at Walmart for under $60.00. I'm not really sure how many hours it would have lasted, but it was so lightweight (only a couple of pounds) that it was never a problem taking it with me. Since my husband passed away on Aug. 18th, I've been busy getting everything returned and donated to different agencies and I just read your post. Enjoy yourselves and have a safe trip. Rae in NJ:-D

 

[NvrGiveUp]

wow

Hey Rae,
Sorry for your loss. Thanks for the info about the peg tube, I'm kind of in shock. I thought that PALS with feeding tubes couldn't even take a bath. AM I nuts? Is it really true that she would still be able to swim? If so then I'm going to try to talk her into it right away! I don't think we have a lot of choice about it anyway since her diaprham muscle is getting weaker... I heard that you have to be able to be under anesthesia to get the peg, which means lung function is critical. The battery pack that you bought... I may be wrong, but I got the one that Respironics reccomended for the Bipap Synchrony S/T, a deep-cycle marine battery with at least 100 Amp-hours. I just found out that it will work only 8 hours, which kind of sucks since I thought it would power it for at least 3 nights. It seems that the statement I read was incorrect or referring to a different model. Oh well, we will just have to get it recharged before the trip back. Because of hurricanes, I will probably get another battery just in case, and also a charger to use at home to keep both charged up and ready to go.
Take care and God bless,
Pam

 

[quadbliss]

Hi Pam,

I have a trickle charger that I keep on my deep cycle back-up all the time. This way, the battery has a full charge whenever there is an unexpected power outage. You could also take this type charger on your trip, as long as you have two to three days to recharge before your return.

Mike

 

[NvrGiveUp]

thanks Mike

Hey Mike, thanks for the info. On another note, Rae (above) told me that her husband had a feeding tube and was able to swim with it. I thought that people with feeding tubes were not even allowed to take a bath anymore... I'm going to research it more too but just wanted to know your thoughts about this.
Pam

 

[quadbliss]

Hi Pam,

Although I have been sporting a PEG for over two and a half years, I have not yet been in a pool or bath tub. We are in the process of getting a lift over the tub, so I hope it is not a problem. I am looking forward feeling buoyant in the warm water.:-D

Mike

 

[brooksea]

Mike I'm sure you will feel wonderful. Good for you!

My husband wanted to take a bath rather than a shower the other night, but he thought it would be impossible to raise himself out of the tub. It really sucks when things you take for granted are no longer possible.

But you know what? Baby Boomers are gettin it done! We'll figure it out and find a way!

 

[oldmoor]

A little worried about a long plane ride

My sister was just told by her doctor that after she gets her PEG,she will have to heal (a couple of weeks) and then she can go swimming. This is incredibly important to her ,and her husband loves to share the experience with her. She has a lift that places her gently into the water,and it makes her feel so wonderful. She is an amazing person. By the way,this forum has meant the world to me. It has provided great insight into my sister's challenges, and made me a more valuable caregiver. Thank you.

 

[CindyM]

Glad we can be of help! Hope things are going well for you and your sister. Cindy

 

[NvrGiveUp]

Traumatized by American Airlines

:evil:
I hardly have the energy to speak about this anymore, but I knew a lot of you would benefit from knowing about the horrible experience we had on the way to Brazil. :evil:

When buying our tickets, the reservationist said that a person from their "disabled services" would be contacting us to discuss T´s bipap machine and other needs (wheelchair assistance, etc.) He did contact me. I had in the meantime been researching what kind of battery I could use for T´s bipap since they did not allow aircraft power to be used. I did this and saw that you could purchase a fancy battery pack for I think it was around $400, or also a deep cycle marine battery could be used as long as it had a minimum of 110 Amp-hours. This was half the price and T didn´t really want me to spend a lot of money on the one that would only be able to be used for that particular machine. Well, I gave in and started to find out if it was possible to use that deep-cycle marine battery on the plane. Disabled Services said yes, yes, and yes after I made sure that he knew what kind of battery I was talking about and that it would be on a dolly, etc. As long as it was non-spillable, yes, he told me. The company that made the battery also said it was FAA approved. :evil:

We get to Orlando International airport to take our flight to Miami, get through security, who were really thrown for a loop. Once they approved it and we were walking by, some higher up security people stopped us for another few minutes as they pondered if it was allowed. It was documented in our airline reservations and I had a note from T´s respiratory therapist. Finally, they let us through. T and I were feeling a little relieved, well, until we started to board the plane. All of the flight attendants started questioning the battery and if it was allowed on the flight. This stopped anyone else from getting on the plane. I explained to them how their "disabled services" employee assured me that it was allowed and annotated it in our reservations. Well, the customer service manager (monster is more like it!) came up to us and wanted to know her bipap model number and the battery model number and etc., etc,. They wanted to know why they couldn´t just stow the battery with the luggage. Then I made the mistake of telling them that if T fell asleep and wasn´t using her bipap that she could stop breathing. OOPS! I didn´t know then how hard that was going to come back and bite me on the a#ss. :evil: :evil: :evil:

Finally all the passengers are boarding the plane which was already 45 minutes late (the same amount of time to fly to Miami from Orlando). Everyone had their seatbelts on and I thought that we would finally be on our way. All of a sudden the customer service monster along with several flight attendants rush to our seats. One guy took our battery while the monster and a helper picked up T and threw her onto the aisle wheelchair as if she was a piece of trash. They talk us that we were being "de-planed" or something to that affect. When I asked what that meant she said we wouldn´t be flying to Brazil because the battery isn´t allowed and they can´t help T if she were to fall asleep and stopped breathing. :evil: :evil: :evil:

At this point I couldn´t believe that I didn´t have a nervous breakdown and strangle the woman! Imagine having a terminal illness, not being in your home country for 5 years, being so excited to get there, spending thousands of dollars on airfare and clothes etc to take with you, being reassured that you would be taken care of by a special "disabled services" department, and then being treated like dirt without any sign of remorse. I was halfway off the plane (literally I had one leg in the door and one leg on the ramp), when I asked the question about our huge bags that were below? They told me that the bags would go to Miami and then be flown back to Orlando. Right! T was practically ready to pass out from the shock of the situation and I then refused to get off the plane until I talked to someone higher up. Meanwhile, I didn´t even know if all of our carry-on items were thrown off with us (like T´s nebulizer, bipap, etc.) or other important things because they were trying to rush to get uf off the plane. The customer service monster was yelling to "CLOSE THE DOOR! CLOSE THE DOOR!" Even while I was still standing in it. T broke my heart because she was begging and could barely lift her arms up to motion for them to let her on the plane, and her tears were the only thing that I think melted one at first very cold male flight attendant. I was arguing with the captain at this point to please just let us go to Miami with our luggage so that we could be with our bags at least. They could have the battery for all I cared... we would get to Miami and I would get the "correct" battery so that we could get to Brazil the next day. Since the flight was only 45 minutes and we were obviously very awake, they finally let us on the plane... but our battery is still in Orlando somewhere. It was $200 so we better get it back, jerks!:evil:

As we flew to Miami we couldn´t believe what had just happened to us. We wondered what we would do when we got there... where would I get the right battery... and just what was the RIGHT battery, anyway? After the flight I spoke with the captain and he explained that probably what happened was that the disabled services guy didn´t really know what kind of battery I was talking about. JUST SO EVERYONE KNOWS, IF YOU ARE GOING TO TAKE A BATTERY ON A PLANE, IT CANNOT HAVE EXPOSED TERMINALS. Unless you plan on checking it with your luggage? Who knows? All I know is that I wish I would have just spent the money on the more expensive fancier battery pack from the beginning. Also, American Airlines disabled services should really be called disabled DISSERVICE.

We get to Miami and the people there were the exact opposite of the crew of the plane. The manager we talked to about the situation was very sorry about what had happened and basically said that if T felt she could stay awake/be alright, we could go to Brazil. It was an overnight flight of about 8 hours, then a 2 hour break, then another 4 hour flight. We both stayed awake about the first 4 hours, then I let T sleep as I watched her breathe for about 10 min at a time. The last flight was even harder, but we made it. Brazil is beautiful and it was very beautiful to see her reunited with her family and friends again. I will be getting the right kind of battery for the trip home.

God Bless and wish us luck on getting home in a couple weeks!

Pam