Doc Wont Clear Me To Fly...

[dizzygirl]

HI.. I was trying to get set up with angle flight network.. for an out of state appointment.. they got nervous when i told them that i would be traveling alone..b/c i do faint/blackout and have seizure things go on..

they spoke with my docs nurse.. (as they needed my cardio's ok for me to fly) and my doc flat out said no..b/c hea;thy people even have trouble flying..that and it will be a nonpressurized plane..

SO now i am wondering How I'm going to swing abus and or train ride to NYC in 2 months.. I have not checked into a train ride yet.. but i have checked into a bus ride.. the shortest quickest trip is 16 hours.. almost 17 from where i am.. and I cant do a long bus trip like that.. I'm nervous about that..i'm having trouble doing just like a short 20 minute ride around town..i cant really imagine a17 hours bus ride sitting upright or standing the whole time.. OMG! that just exhausts me thinking about it...ewwwww.

and a train ride i could probably get a sleepycar or something.. but i was told that its exspensive.. and I'm guessing would take about as long if not longer to get into NYC..

i was really hoping to fly b/c i would be so much quicker!! I thought about trying tto fly commercially instead of thru angleflight.. but my doc has good reasons for not wanting me to fly..so i dont know...

i do know its going to be a LONG trip though.. crud...

RATS!!!!!!stinkin' pots....

any travel suggestions would be nice!!

[Eli6596]

1)My trick is to make sure that I have my legs propped up during the entire trip. I need to sit next to an empty seat on the plane for this to work which is not always possible. If a friend or family member travels with you, you could prop up your feet on their lap if they are willing.

2)I also get up and walk the ailses at least every 45 minutes to get my blood moving from my legs. 40mm Hg compression stockings and more water than usual are key too. The airlines won't allow water anymore though.

3)I need wheelchair assistance to get from one gate to another in the airport since the distances are way too far. It is a HUGE stress relying on disinterested airline employees to get me to my connecting flight on time. And, they all want tips.

4)I hate flying because of the POTS. My symptoms flair for a week after the flight so that I spend most of my time in bed, not enjoying anything at the destination to which I have traveled. By the time I feel decent, it is time to fly back home. Due to the increased security at airports, the lines and restrictions will be even worse, so I don't really want to fly again even though I have done it in the past. Oh and if my flight gets delayed, I get the pleasure of lying on the dirty carpet of the airport floor. It is interesting how no-one finds the sight unusual.

5)A sleeper car in a train sounds much better to me, especially if your doctor suggested that you not fly.

Good luck

Karyn

[Ernie]

Hi,

When I have a long ride i recline for most of the trip. Or you could take the train and have a bed as suggested.

[yogini]

Linda,

Where are you going to be in NY? If it's a place I'm familiar with, maybe I can help you brainstorm...

[Dizzy Dame]

Linda,

I'm so sorry you're having these problems. This is just my opinion, but from the sound of it, a train or bus ride by yourself would be very bad for you. Even people without major health problems have problems sitting in one place for so long...and that kind of travel could send your symptoms over the edge.

Is there any way a volunteer could fly with you? Do you belong to a church? If so, perhaps someone from your congregation coulf fly with you. I think I remember you saying that you have a case worker, perhaps he/she could help brainstorm this with you.

While I understand your doctors concerns about flying, does he honestly expect you to sit on a train or bus for 20 hours?

I really hope you get a good solution to this problem.

Hugs,

Lauren

[mom4cem]

Regardless of whether he would o.k. for you to fly, you really should have someone with you. I know that is probably not a possibility for you since you posted that you would be doing this alone. That is a long trip for you and far away. I live in NY also and know I have wanted to make the trip back to the autonomic center in Alabama and have not been able to do so this year due to more complications. I'd be afraid to go alone.

I hope your Doc can help come up with a solution for you. The train is expensive but at least you could lie down but still would be great to have someone with you.

[dawn]

I was also told no flying. Last summer I took the Amtrak from Wisconsin to Washington state. I got the disabled sleeper car (which doesn't cost that much more than coach seating) and the trip was great. It even has it's own bathroom!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Your meals are included and they will even bring them to you if you want. The food is excellent. I spent alot of time laying down and got out when the train stopped and would take a little walk. They make your bed for you. I really enjoyed it.

Call the Amtrak agents they are really helpful and the rates are different on somedays. Round trip for my husband and I was about 850.00 and that was a 2 night trip.

Dawn

[Guest dionna]

perhaps taking advice from me may be dangerous but... i just fly anyway! i take doctors advice as just that--- advice. i know my limits far better than they do. i have no other way! sometimes i figure you gotta do what you gotta do. perhaps if you really don't want to take a train or bus (which i personally would never do--- that would be far more dangerous in my mind) you could discuss it again with your doctor and present it in such a way he understands that you know the risks but explain to him your other conserns. i promise you... if you tell your fligt attendant that you have a problem and that you need to stay hydrated and you give them your information, they will help you anyway they can... they want your business again. last time i flew they put me in first class, with the flight attendant sitting right beside me--- all the water, pretzels, and nuts i could want. perhaps you could tell the doctor that. make him understand YOU! after all aren't you the one putting food on his table tonight?

dionna

[yogini]

I think many POTS patients are able to fly, and even though it's a struggle it's not dangerous for most of us. But if you have severe POTS and your doc specifically says not to fly, I wouldn't. I think it's a lot safer to be on the ground, b/c elevation makes POTS sypmtoms worse, and it's easier to get to a hospital from the ground. Trains and buses are a pain to take by yourself, though, and worse when you have luggage. I do hope that you can find a friend or a volunteer to go with you.

[stellakitty]

Hi,

I read about Angel Flights, I was looking to get my daughter a flight. These people are volunteers flying these little "flyswatter" planes, they are not equipped to handle any type of medical emergency, (not that passing out for you would be be); but they are designed more for "chemo-type" patients who can actually sit/stand.

As a member of the "been there" club, I think it would be extremely unwise for you to try to travel alone. I took my daughter to Toledo from Denver to see Dr. Grubb, she siezed on take-ff and landing, passed out on my lap for the duration of the flight. The attendant could see she was having issues, gave us O2, was very cool about the ordeal, that was going to. On the flight back, she "siezed" during take-off, then passed out on my lap. She had to go to the restroom, passed out, almost hit her head on one of those metal serving carts, fainting is an everyday (was) ocurrance at the time. Let me tell you these people totally freaked out and wanted to divert the plane to Chicago and boot us off as a "medical emergency". I had to speak with the "ground medics" and do some fast talking to keep the bus in the the air. You do not want a plane full of people mad at you because they have been diverted! If you are alone, passed-out and unresponsive, they will land the plane.

Am-Trak is a better idea, you need to call in advance to ensure you get the "handicapp" sleeping car, we've done that too. Eighteen hours seems like forever, but when you are sleeping, the train is still moving. The Amtrak people will help you with your bags and whatnot, they will "golf-cart" right up to your car. Once again, I don't recommend you do this alone. If you pass-out, no one will find you until it mealtime.

Sorry to be such a "downer".

Angie

[Jan]

I have flown quite a few times since I have had POTS and find it much easier than a car.

Cars make me dizzy. And after a car ride I still feel dizzy for the rest of the day. Not so with a plane.

I agree with those who suggest trying to dig up a companion. Also see what your doctors real concern is.

Maybe he just doesn't know how hard other means of travel are for you.

I would let the airline know you need hydration now that they won't let us take liquids on board.