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rmlyonsfamily

Pots And Fying Across Country

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Kayleigh's boyfriend is in the Air Force Academy in Colorado... we are in North Carolina. She has an opportunity to fly there with his parents over Labor Day weekend. The nervous nilly Mom in me doesn't want to let her go, but I know she would LOVE to see him before he comes home in November. It would be a complete surprise to him that she'll be with his parents, and to her because we wouldn't tell her until the day before she left.

The flight itself is 7 hours of travel. She'd fly from NC to Houston, layover in Houston, then Houston to Colorado Springs. I'm worried about her POTS, fatigue, the air pressure difference causing headaches and dizzy spells, etc.

Thoughts? Experiences? Tips? Would you let her go?

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I II have done alot of traveling before during and after diagnosis. I think for this salt tabs nd to let the flight crew know she will need to drink one of the large bottles of water on each segment. Its good for her to tell them they are mostly good about it. Have snacks, real food and let the flight crew know she needs to move around. So she may need to stand and stretch in the back while they are providing service.

Let me know how she does. My son is in the military, special surprises are nice. Miriam

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Kayleigh's boyfriend is in the Air Force Academy in Colorado... we are in North Carolina. She has an opportunity to fly there with his parents over Labor Day weekend. The nervous nilly Mom in me doesn't want to let her go, but I know she would LOVE to see him before he comes home in November. It would be a complete surprise to him that she'll be with his parents, and to her because we wouldn't tell her until the day before she left.

The flight itself is 7 hours of travel. She'd fly from NC to Houston, layover in Houston, then Houston to Colorado Springs. I'm worried about her POTS, fatigue, the air pressure difference causing headaches and dizzy spells, etc.

Thoughts? Experiences? Tips? Would you let her go?

Hi Kayber's Mom,

to be perfectly honest, I'd have to say no, I wouldn't let her go ... The length of the flight is going to affect her POTS because she can't lay down or walk around as needed. I've never been affected by the air pressure just the fact that I couldn't lay down or walk.

She was just recently in the hospital with some very serious health concerns so I wouldn't consider her stable yet. At this point, you're comfortable with her symptoms but other parents may not be. And as far as liability goes, they won't have the authority a parent would.

Not the mention that fact that it's a holiday weekend where airport traffic is going to be higher than normal ... Meaning longer lines and fewer airport staff to help if there's an emergency.

I made the mistake of travelling over the XMAS holidays and regret it. There was a long line outside of the airport and I can't stand up for any period of time without feeling weak. I couldn't find anyone to help because they were sooo busy ... and for some reason, probably exhaustion, I was having petite mals all day. To make matters worse the airlines decided to bump us off our flight. I was a wreck ... in tears, etc etc ...

FWIW .. I've been embarrassed several times by all the attention I've needed when I've crashed in public and I'd hate for her to go through that too ... wheelchairs, emergency staff, etc etc ... I remember these vividly ... :blink:

He'll get to see her in November ... by then she should be stable ... tc ... d

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Kaybersmom,

I think Dizzy has some valid concerns. If it were a direct flight, that would improve the situation but it isn't. What if they cancel, overbook or delay the next flight. Flight cancellations have happened to me twice in the last 2 years, outrageous wait time for the next possible flight. And, what if she has a bad episode and the airline will not let her continue on and she is stuck in Houston. That is a biggie and I know of someone that happened to. I think ulimately they convinced the airline to let their daughter continue but it was tense. What if they didn't.

Is she doing school? This would most likely set her back some (whether a day or a week or two no one, not even K knows).

You are not being nervous nilly, you are actually being realistic. Even though she would love it, it isn't about what she wants right now, it is what she needs to stay stable.

It sounds like she doesn't even know this is a possibility as you mentioned it would be a surprise to her also. I just don't think it would be very good for her and the price too high. I know how much you want to help her emotionally as I know this is really hard. But I think the price is too high. What do her Drs. say because ultimately it is between you, K, and them.

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Being new to the site, I don't know Kayleigh and her situation so everything I say should be put into her particular context. With that caveat in place, I have to say that there is something to be said for maintaining normalcy as far as possible and filling your POTS-inhibited life with wonderful, fun experiences. I was 16 when I first got sick - now almost 20 years ago. Like everyone else here, I've had a lot of ups and downs, a number of near-death experiences, and a lot of public humiliation. But, what has made all of that bearable is the level of normalcy I've been able to maintain (despite my multiple serious health complications). Travel has been a huge part of my life, primarily because I live far away from my family, but also for various jobs. Yes, it wears me out, and sometimes I crash. There is typically an aftermath. But let's be honest, there's an aftermath to sitting through a full day of work. And often an aftermath to just getting out of bed. Personally, I prefer an aftermath that is preceded by an experience I love and will cherish.

I weigh all of the risks and potential aftermath scenarios in advance - I know the risks. But having a few days to be surrounded by my nieces and nephews, my siblings, and other family, does a lot to sustain me through the hard times and helps me pull out of the aftermath a little quicker (sometimes).

When I travel, I make sure I take it very easy the day before, go to bed early, sodium load, eat properly. I always carry a large bottle of water and a bottle of gatorade with me (I drink up just before going through security and purchase new ones as soon as I am through). If it will be too much for me to deal with a carry on, then I check my bag and make sure my small carry on is light enough (or on wheels) so I will be able to handle it even if I'm having a bad day. If I feel bad at the airport, I ask for a wheelchair (although, in all my hundreds of trips, this has actually only happened once and even then I tried to turn it down - I'm a little willful :) ) On my layovers, I always walk around a bit to get the blood flowing again, eat a healthy meal, and drink a lot.

Kayleigh has the added bonus that she will be traveling with others. If they are people who are familiar with her and with her condition, then this might be an almost ideal situation. When I travel, I travel alone probably 99% of the time. this can be frightening and I am more apt to question the wisdom of taking a particular trip for that reason. But I'm learning that fear is even more deadly than the illness, and it can trigger the illness. So again, I weigh the risks vs. the benefits and try to make an informed decision on a trip by trip basis.

Ultimately, the decision has to be made internally - with input from Kayleigh, Kayleigh's doctors, and you. I wish you and Kayleigh the best as you make this decision.

PS One other factor to consider is destination. Colorado is higher altitude than NC, so there will probably be some effects. I am traveling to Utah the same weekend and have the same issues. As long as she is aware of this and knows what to expect, it shouldn't necessarily be prohibitive, but it should be included in the risk/benefit calculations for sure.

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Jenny, those are really good points. I have posted about my own son (15) who after being really severe has finally gotten the right DR. and meds and stabilized enough to go to camp for 9 DAYS! He has also been to the BMX track and done a lot of other things. I am learning as his mom to let him make many activity decisions and read his own body and the more he moves and is active the better he is, physically and emotionally. He has been able to have more social interaction and be active with his friends, and he still crashes in between. School is starting and he has expressed that staying IN school is most important so I imagine late outings with friends are not going to be an issue :) You are right about needing to live as much as possible in spite of POTS. K and her family are the only ones who truly know if this is a good thing.

When we flew my son did fine. We ordered wheelchairs but he didn't use them, though the 2nd trip he wished he did. We didn't have layovers that time. a third trip we did change planes. He was ok but one leg of the trip had horrible turbulance and that made him so sick! I wouldn't say it affected him greatly afterward more than anything else, though.

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She actually would be flying on a different flight/layover than them - so she'd be alone.

She had a f/u with the doctor today. We talked about it with him and he said he is not comfortable with her going just yet. She has only been out of the hospital 3 weeks after a complicated 18 day stay that included her coding on more than one occasion. She does still have PVCs going on - he heard them today. Stress and anxiety (layovers, missed flights, delayed flights, etc) can all cause the PVCs to get worse and in her case that is what triggers the multifocal PVCs, bigeminy, dangerous heart rhythms, etc.

The more we talked - the more we realized that he is right. She is disappointed, but she also understands.

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Next time she thinks about flying to Colorado Springs & the Doc clears her of course, fly into Denver. They have tons more direct flights and it is only about an hours+ drive to the Air Force base. I would rather have a direct flight with a little more drive time than have to have lay-overs.... but that is just me.

I am trying my 1st flight to Phoenix soon...a short one, but trying to see if heart can handle it :blink:

Take care & I am happy to see that at least Kayleigh is living a little bit more of life than in weeks past ;o)

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