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Packing For Pots Testing


Guest tearose
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Guest tearose

I am trying to pack everything I will need for two - three weeks of testing and dx, away in MN and trying to remember how to do it so I am comfortable, warm and don't overpack.

I don't remember how to do it!

Any POTS packing lists out there?

I will need to take my POTS totebag and seatcane everywhere with me and I'm considering using a bag on wheels..is this okay?

any suggestions?

thank you, tearose

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a bag on wheels sounds great tearose!

are you travelling all on your own?

i was thinking about some of your favorite music, a good book to read and pen and paper to write things down when wanted/needed. maybe a warm blanket (fleece as we call it, don't know whether you have those as well in the us) and a small cushion to use in the plane (i'm always very cold in planes). i would also take something special from home (a photo or something else you love).

hope this helps!

corina :lol:

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Guest tearose

Thanks corina! I'm starting a "smart list" now!

I love the idea of taking a photo because I am going alone! :(

It is alot of expense and I'd rather go and take care of business alone and save up for a fun thing to do with my husband in the future. Fortunately there is email and video chat now and I can "see" my family on the computer while I am away.

hey cardiac, I know 2 weeks is alot but it always is into the second week with me before they wrap it up! I have no problem with this because I'd rather they be very thorough since I don't go back for many years.

Yeah, I know some of the testing already, they already booked some tests into the second week! I guess the wrap up at this point would be later in the second week but if something comes out in the second week of testing that needs follow up...I am NOT insisting on running out of there if I will learn more in a few more days.

I am trying to think of this now as "tearose tweak time". It is all about getting a picture of where I am now as compared to where I was five and ten years ago and then hopefully, preserving me for a looong strong growing older period.

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Hi T

Good luck with your preparations. A bag on wheels is a must for travel, I think. POTS or not.

I always bring along a good supply of rehydration salts that can be mixed with drinking water, although that probably goes without saying. Small comforts from home as corina suggests should help make your stay more relaxing. Try not to over-pack though since you have to haul it all. Packing is an art that I have yet to master, personally.

I hope this detailed snapshot of tearose will help with improving your treatment of your symptoms.

Katherine

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Travel by airplane is challenging for dysautonomics and may increase symptoms. Airplane cabins are pressurized to about 6,500 feet, which is high enough to cause some dysautonomia patients to hyperventilate. Hyperventilating makes a patient more likely to get symptoms of sympathetic activation (Robertson, 2002).

Those with POTS do need to know that the air in an airplane is some of the driest in the world. Flying can have dehydrating effects in normal individuals. How much more so flying might dehydrate someone with low blood volume. Everyone should be well hydrated before boarding a plane. Also, normal people sometimes have trouble with blood pooling in their legs during flights. Rarely, this can lead to the development of blood clots. Patients prone to pooling blood may want to wear compression stockings when flying. Patients may also want to request a bulkhead seat, as this will give them more room to elevate their legs.

http://potsplace.com/pots_an_overview.htm

incase that's helpful

good luck!

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Tearose, I always bring an empty water bottle to the airport. They will let it through security, them you can refill it on the other side from a fountain. I'm always DRY on the plane, so I bring a cloth to wet and run over my face.

Also Zycam makes a soothing nose swab that kills the rhinovirus that spreads on airplanes.

I hope you have a successful trip and keep us informed!

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Hi Tearose,

I don't know of a POTS packing list, but here are a few of my suggestions:

- Pack clothes that can be layered. That way when you get too warm you can easily shed a layer. And if it is chilly, you can add a layer.

- a good book or two for the waiting room/hotel room

- a notebook and pen to keep track of the tests, results, questions, etc.

- whatever snacks and fluids you need

- slippers, your own soap and shampoo, comfy pjs, and whatever else makes the hotel stay more comfortable for you.

I hope your trip to Mayo is successful. May you come backed perfectly "tweaked."

Rachel

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hello TEA!

yes definatly a travel bag/suitcase on wheels is a MUST.. it makes life a tad easier...for traveling.. a few things i alsways bring..

a small personal CD player with extra batteries.. for when im feeling up to listening to some tunes..

if they have dvd player.. maybe a few favorite dvd's that make you laugh

Um I always bring a cervical pillow with me to support my head while having to be upright .. i have a few.. one of full of buckwheat hull.. and 2 memory foam cervical pillows..its just good to have..its a life saver for me!

a light wait thro blanket....

and plenty of underwear!..lol.... i always pack more undies then i will actually need.. one time after i had had a lenthy hospital stay.. i ran out fo clean undies.. and i was so bugged by this..it was bad enough that i couldnt shower! but to not have clean undies was torture! im a bit OCD when it comes to clean-ness!.. so i always pack alot.. lol.. :lol::(:P

oh yea a phone card for just incasies..

a journal

and maybe some kind of small craft type project for some thing to do in a lull?

good luck tea.. i hope that your tweaking go well!!

are you going to be in patient? if so do you have any adress so we can mail you snail mail?

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Good luck on your trip to Mayo.

I would suggest that you bring your cell phone with a charger. Hotel telephone calls are very expensive.

Bring a craft like knitting or cross-stitch.

All your luggage should have wheels.

Ask the airline for wheelchair assistance (from checkin to airplane; airplane to baggage).

Pay for someone to carry your luggage.

I hope you are staying in a hotel that has underground access to the Mayo. BRRRRR!

Lois

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Hi Tearose,

We were at Mayo this summer! Hope you have great luck with all your testing.

Someone else stated that they hoped you had a hotel that's underground--if you do--they are fantastic, every one of the hotels has a plentiful supple of wheelchairs in their lobby for your use. It's so easy to get around down there. And so much more efficient than our hospitals in Cleveland. If you don't already have one and can afford the extra $$, I'd also book a 'suite' in your hotel. The one we stayed at was only $20 more than the regular hotel room. It was well worth the cost. There was a separate living room with a couch, microwave, tv, toaster, table and chairs, etc. It was great in between appts. when you just don't feel like laying in a bed all day.

Good luck!

Patti

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Guest tearose

:lol: oh you are the best bunch!

lots of great ideas! I think I will write up my final list and post it to help me and others remember for future pilgrimages!

I think since winter came so late to New England I have had to relearn how to dress warm!

You guys made remember that I love marino wool and I should use these to layer for warmth.

Thank you all for your good wishes too. I leave two weeks from tomorrow so I think if I plan right, I can pull myself together by then :( I feel as though I will look like a traveling circus with all the stuff I need to bring!

For the question about me being in patient...I am staying at the connected hotel except for the sleep study, that should only be one night...I know Mayo has this communication link that I can sign up for and get email so I will give it to you as soon as I figure how to register. Thanks for asking!

I planned on saving money on food and doing alot with instant foods and hot-pot-in-room-dining. I hope this works out. It is a little more costly for the hotel but I decided the value of being able to leave the clinic and go back to my room was worth more and that I could manage with instant foods for 2+ weeks. We will see.

back to my list...

tearose

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