Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
Hey I am about to fly across the country for a conference and am not really confident with how airports run because I typically don't travel alone. My doctor wrote a letter saying that I have to travel with medical devices and various prescriptions, and put his number on it in case any issues came up. I will carry on all my medical stuff so I know it is safely handled and makes it off the plane with me. I guess a few things I am worried about are their regulations on that. I am going to take all my pills in their bottles so the prescription labels are on them, but some of my medication is OTC, and I don't know if that will be an issue or as long as they are in the original bottle they will be fine? Some of my inhalers do not have the prescription label on the package since I get 3 month mail order and they don't label everything, but I have the full packaging. I don't know if that will be a problem. I would just like to get on my flight with minimal security interference!! Also, I have vials of medication that have to be kept cold. I can keep an ice pack on them for the trip, but I don't know if the hotel has fridges in the rooms. How do y'all typically handle cold meds? And last question, does anyone happen to know if you are allowed to take snacks or drinks on the plane with you or if there is a way to get around that? With my pancreatic insufficiency I cannot go 5 hours without a snack and fluids. It's ridiculous what a pain travelling can be when it involves airports. I don't think about any of this on a daily basis, and it all seems crazy. Any suggestions on medical and travel, or experience would be greatly appreciated. Nervous and excited for my trip all in one!!
1. Call the hotel ahead of time and ask if they can provide a fride upon request. Mine have done that but they usually were't very cold so ask them to put it in there as EARLY as possible OR you may need to take an extra baggie with you to fill up with ice once the ice pack melts.
2. I took a Norco, Xanax, nasal spray, allergy nasal spray, ibuprofen (in an unmarked pill holder) and had NO problems. If you have a lot maybe put them in a separate baggie in your suitcase. Also, are you taking any carryon? I would put your meds in that if you are. I got separated from my big carry on bag MULTIPLE times. When too many people bring big carry on they ask for volunteers to check their bag (valet style, sometimes you get it back right at the plane when you land - and sometimes it goes all the way to baggage claim) and then they force people to give up their bags if its too bad. So consider your meds in a smaller carryon that won't get swiped. In their original containers should be fine.
3. You can take snacks but absolutely NO DRINKS. All of the food courts, snacks, restaurants, etc are after security check and you can stock up :)
4. ANYTHING that is liquid or gel cannot be more than 3oz and all of these together MUST fit in ONE quart size bag. Buy a lot of travel size containers from target :)
5. Call TSA ahead of time (I think you can do this) and plan ahead of time with them. Let them know you will have meds and what forms do they require you fill out.
I have a friend who travels a ton with a ton of meds. I'll also ask her ;)
My experience is similar to Kelli's
I have had no problems with carrying on my 13 meds even narcotics. I never got pulled aside for examination of meds and never had a Dr's note.
It's great you have a Dr's note as back up though.
You can bring snacks, and you can buy water or juice or whatever once you get past security, (so plan to spend about $8.50 for a bottle of water) and you can bring both food and water on the plane.
Kelli is right on about calling TSA about things like liquid vials and ice packs etc...ask them everything...you'll feel better hearing all the regs directly from the TSA.
Getting your meds together is a pain, but so is pouring shampoo into those tiny little 3oz bottles. For all us CVIDers Packing happens to include med prep. Packing is a pain in the neck! So is baggage check, the line to get through security check, and the person sitting next to you who uses both arm rests. It's all part and parcel, but when you get to your conference, it is all worth it!
You are going to have a great time, and all your planning and prep work will be totally worth it :)
So ride the blue winds high and free( that is an obscure song reference, but a true Texan should know it! HaHa) and enjoy every minute of your trip! I hope you are going somewhere you have never been and get to see lots of cool new stuff and meet lots of new people!
:) LuLu
One thing I highly recommend is turning the vent directly on your face, it is filtered air and keeps the germs away (though wear a jacket). Also, bring a small hand sanitizer everything around your seat in a plane is very dirty... I can't say it's 100% effective, but it has kept me traveling better. I usually get sick from someone where I travel now!
I just started SubQ this week and will need to take the medication and supplies with me for that. I checked with TSA and they say I can carry on an extra bag with my medical supplies. The nurse I worked with this week suggested my supplies be packaged into plastic bags, not over crowded, so that TSA can look at them if needed without touching anything. Also, my medication (Gammagard) should have the prescription label on it. As long as it doesn't get over 77 degrees, it does not need refrigeration. I received a letter from both the pharmacy and the doctor to hand carry with the supplies/meds. This precious little bag will be placed under the seat in front of me. I've watched passengers move thins around in overhead compartments and I'm just too fussy about anyone touching my supplies/medication.
I took a 3 month supply of IgG with me to India this summer and while it was a very painful process at security, everything was fine. Just plan lots of extra time. The biggest problem with international travel is you have to go through security in every country. I nearly missed my connection in London because I had to take out all 24 bottles of medication and put them in clear plastic bags with handles to carry up the stairs and through security. They would not let it stay in the suitcase. So it can be painful but it should be fine.
I had labels on everything and had to show them my passport where it showed I am a resident of India to take such large quantities. I had a letter from the doctor also but was never asked. They did check the name on the prescription against my ID.
Since I'm super sensitive to fragrances of all sorts, other chemicals, smoke, dander, etc., I carry masks with me everywhere. Mostly a P95 rated or a carbon filter mask protwct me, but for travwling I also carry a half-face mask with canister filters protecting from gasses & particulates. I look odd wearing that mask and sunglasses indoors (when I have a migraine I can't shake)! Last rrip I was too ill with serious asthma & other resp infs (b4 cvid dx) to walk thru airport, so hubby sat me in a wheelchair at main entrance. Then we also had early boarding with no explanation needed. I couldn't have made the trip otherwise.
If hotels are involved, I spend hours on the phone asking about smoke-free, animal dander, fragrance in rooms, detergents & cleaners. Also about down or wool bedding, which trigger the asthma.
Sorry for the long post. My congrats if you made it this far in my posting!