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Thread: Vacationing with Wegeners

  1. #1
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    Default Vacationing with Wegeners

    Hi Guys,

    While I have never had much of a desire to travel since being diagnosed with Wegeners a few years ago, one of my friends is getting married down south. Not exactly sure where yet, probably the Dominican or St Lucia or Jamaica, Bermuda, etc... Of course I am in the wedding.

    She is my best friend and I really don't want to let her down but travelling scares the crap out of me.

    Does anyone have any advice or tips? Or stories of success?

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    Hi Carrie,

    Here are a few thoughts...

    1. Plan to enjoy the trip!
    2. Wear a surgical mask while on commercial airliners.
    3. Use hand sanitizer or wash your hands frequently.
    4. Carry your meds in their original containers and keep them in your carry on luggage.
    5. Avoid obviously sick people. You may need to ask to be re-seated on the plane. Politely and calmly explain your request.
    6. Did I mention plan to have a good time.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    I was planning on having the Pharmacy do me up my medication for the week or possibly 10 days to play it safe. They do it up in little bubbles. A lot of people have it done for trips. I will have to inquire further about this. Thanks Pete for the advice!

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    Default Vacationing with Wegeners

    Stay close to the venue so that you can go back and rest. Sit down. At functions everyone stands and talks. Sit down while you wait. Rest up as much as possible before the trip. Let your doctor know you will be traveling. If you are traveling out of the U.S. Let your insurance company know and ask them about coverage to get you home if you fall ill. Have fun and plan on that you will need time to recover when you get home. You may want to ask your doctor about taking airborne. Or an extra vitamin supplement to help you keep your energy up. Have a great time
    Last edited by Donna-from-Philly; 11-05-2014 at 02:19 AM.

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    I am pretty good stamina wise right now. I am currently working two jobs. One is a desk job but the other I'm on my feet. As long as things don't deteriorate too much I should be running around the beach

    I'm in Canada, I think my Husband's work has travel insurance. Will have to check on that as well. If worse comes to worst, I can be back in my city in about 12 hours if something crazy happens. Lots of direct flights about 2 hours from me, which is where my Doctor is anyway. I feel pretty safe that even though I will be far away it will never be too hard to get back.

    Thanks guys

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    Quote Originally Posted by carriej22 View Post
    Hi Guys,

    While I have never had much of a desire to travel since being diagnosed with Wegeners a few years ago, one of my friends is getting married down south. Not exactly sure where yet, probably the Dominican or St Lucia or Jamaica, Bermuda, etc... Of course I am in the wedding.

    She is my best friend and I really don't want to let her down but travelling scares the crap out of me.

    Does anyone have any advice or tips? Or stories of success?
    I have a couple/few tips.

    1. Airplanes and their closed loop air environment are scary for the immune suppressed gang that we are. I got a tip a while back and it seems to help me. I traveled once with a mask, and that totally sucked... not only for the lack of comfort in breathing through the whole flight but also the way that other passengers and flight attendants were looking at you. The solution to keep your lungs safe from bad bugs being recirculated in the cabin over and over throughout your flight - Polysporin in your nose. I squeeze a little on my finger and then coat my nose - inside - with it. It's a good barrier for germs and doesn't look out of fashion as much as a crappy mask. Also my doc told me the masks don't do you any good on planes because there are too many holes that the air can get through, so it defeats the purpose. I also ask my doc for a prescription for a good antibiotic (broad spectrum), when I went to China I also got Tamiflu in case I pick up some viral thing, and I also got a prescription for antibiotic ointment on my last trip (more intense than just Polysporin) as I had an issue with a toe nail and didn't want it to get infected on the beach. I never ended up using it but it sure is nice to know you have something in your bag in case of weirdness.

    2. You probably will not be able to get travel insurance. For me they wouldn't even give me insurance in case there is an accident, or they loose my bags, or trip cancellation. I made the error of telling them I have WG, so if you want to get the other insurance (aside from WG) just don't tell, and then your bags can be covered and trip interruption (as long as it's not because of a pre-existing condition, you'll be good.)

    3. Enjoy yourself. I know it's hard to let go of that feeling in the back of your head - I hope I don't get smoked in some way - but as long as you're careful and take the same precautions you take at home, you should be good. Keep in mind that you know how long it takes for a flare to materialize. You'll know weeks before if anything is brewing inside.

    Have a blast!!!!
    Last edited by marta; 11-05-2014 at 04:27 AM.

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    I know something about this... My home is in Washington state, but I'm in the UK right now. I have been here for a month. This is my 2nd trip to the UK in the last 6 months. In the last 2 years, I have been to the Virgin Islands, Cancun, Hawaii twice, Alaska, and in Dec, I'm going to Tahiti. My wegs is about as bad as anyone else's I suppose.

    I am immune suppressed (20mg mtx per wk), on 5mgxday pred, plus 2 injectable drugs and 2 schedule 2 narcotics. The point being -- I run the gammit.

    I don't carry my drugs in their prescription bottles. It would be ridiculously impossible. Instead, I have 10 weeks worth of am/pm pill minders and I load them up and seal them with tape so they can't come open. For my noon drugs, I just put those together in 2 or 3 bottles. I carry enough syringes for double my anticipated need and drugs are in convienent 1cc vials (I asked for that). I carry 50% more than what I think I'll need.

    For the feds, I carry a non-dated letter from my doc that lists all the drugs I have (23) and it references a list from the pharmacy. I have crossed many international orders and never been questioned.

    I don't take any more precautions than I ever have. No hand sanitizer and no mask. I've never had a problem. I have never paused to even consider that a crowded are might not be healthy. Almost no place is void of germs.

    My worst fear is food poisoning, so I carry an emergency pack of injectable "keep alive" drugs.

    Best advice -- take twice as many drugs as you need, don't carry them in one spot, don't put them in checked package, and don't worry.
    Last edited by vdub; 11-05-2014 at 06:38 AM.

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    I have traveled a little with wegs too. These are good bits of advice - my wife tried to get me to wear a mask on the plane but I flat out refused.
    One flight I had a terrible time with my ears. I used earplanes the next trip and had no trouble. The next trip I forgot the earplanes and had no trouble?!?
    One time someone gave me a drink ticket, so I bought a beer. That seemed to help..., ha!


    Sent from my iPhone while driving on the freeway, eating salt, and drinking a 78oz soda.

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    I have travelled from the UK to the US 4 times this year, on business. Two weeks each time. Mostly separated by 2 or 3 weeks back home. Was quite tired by the end of the last trip and it has taken me a while to get over it.

    I always take much more medication than I need - I did a 4 day trip to the US a few years back but a certain Icelandic volcano stopped me returning. I had to get more as I was running out after 11 days - had to jump through many hoops to get a prescription.

    I always take drugs in original packages but I am on much less than vdub. However, like vdub I don't take any particular precautions other than trying to stay well and safe (I tend to be careful what I eat to avoid potential food poisoning - not always possible as I found on a trip to Norway that kept me there for an extra few days)!

    Enjoy!

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    I was paranoid about travel initially, mainly because it is such a great opportunity to catch some kind of bug for anybody, let alone people on immune suppressing drugs. However, I have to fly in order to see my docs, and I have made several vacation trips as well. No big problems so far. I have temporarily adjusted my schedule for a few meds so I would not have to mess with them while traveling, such as the MTX injections. I definitely tire more easily during travel than I used to, but other than that no issues yet - - knock on wood.

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