To Travel or Not to Travel

As a newbie to WG (wife diagnosed 2 weeks ago w/mainly just lung involvement), we are interested in people's thoughts/recommendations for traveling with WG.
- Plane travel (or any public transportation)- okay with frequent hand washing/sanitizing? Wear mask or not? Other precautions? Not recommended period?
- International travel (ie Europe, Mexico, Australia/NewZealand). Any concerns besides long flights in an immune suppressed state and WG fatigue/weakness.
- Any difference in the answers to above if WG is active w/strong doses of meds (pred and CTX) versus WG in remission and in maintenance mode?

Thank you.
LovinLife (aka Loves2Travel)

For what it's worth, you may not want to travel while the disease is active, just in case it gets worse. If you're stable, practice good hand hygiene while traveling. On planes, some recommend wearing a mask, others suggest putting an antibiotic ointment in each nostril. Since you specifically mentioned Mexico, I'd be at least extra cautious about food/water borne illnesses.

Make sure your immunizations are up-to-date. You should avoid live virus vaccines. Talk with your wegs doc about your travel plans.

I have travelled to the US, and other destinations, many times since diagnosis but only when I have been in medication maintained remission. When undergoing treatment for my flares I have not travelled (my body usually tells me whether I feel comfortable with travel and whether I am OK with being away from my support network - I plan accordingly).

I take no extra precautions over the sensible hygiene precautions mentioned but I was taken quite ill in Norway and ended up staying a few extra days to be well enough to travel home! (never sure if it was food poisoning or a virus).

Always take plenty of extra medication - I was stuck in the US when the Icelandic volcano grounded the UK flights and ended up trying to get more medication out of the US system which was a very painful process!!!

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Originally Posted by LovinLife

As a newbie to WG (wife diagnosed 2 weeks ago w/mainly just lung involvement), we are interested in people's thoughts/recommendations for traveling with WG.
- Plane travel (or any public transportation)- okay with frequent hand washing/sanitizing? Wear mask or not? Other precautions? Not recommended period?
- International travel (ie Europe, Mexico, Australia/NewZealand). Any concerns besides long flights in an immune suppressed state and WG fatigue/weakness.
- Any difference in the answers to above if WG is active w/strong doses of meds (pred and CTX) versus WG in remission and in maintenance mode?

Thank you.
LovinLife (aka Loves2Travel)

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I went on a trip for business to Vegas (3 hour flight from Chicago) 2 months after diagnosis and didn't have any trouble with the flight part. I did have to scale back my activities once I got there and reprioritize my convention schedule, but I did it and lived through it!

Thanks, it's encouraging that we can hopefully still travel. We both love to travel and had all kinds of plans to go places during our upcoming retirement years. Sounds like that is still doable but will need to stay flexible on how much we do depending on how she feels and be prepared to postpone or cancel on short notice if need be.
On a side note, in my original post I didn't mean to trivialize "just lung involvement" so I hope no one took offense. That alone has been a big deal for her and I'm sure for a good many of you.
Thanks again.

I had five paragraphs typed regarding this topic after my experience a year ago. Somehow they got deleted.

Bottom line....if you feel good - travel. If you feel something is up- don['t.

Going to Hawaii this January on the credit from last years January trip cancelled 4 days prior to departure due to chest being cut open for emergency lung operation to save my life. Collapsed on Monday morning, was to leave on Saturday morning.

This disease can do terrible things if you (or your doctors) ignore the signs. That being said, we are not dead yet! If you think you can do it...do it!

Here's to getting on the plane this January!

Ps Marta .....ready to ski this year!

Colin

I travelled to Fiji when I was first diagnosed (even before meds started)

My ENT and GP both thought that the warmer climate and the laid back lifestyle would do wonders for my joints and my sinus.

Well it didn't help - but I didn't get worse either.

Since then I have travelled to USA and am planning on Hawaii and Memphis in April next year.

I make sure I take everything that I need to keep me good. For example, I took a full first aid kit. I also took a walking stick (just in case). I took a packet of surgical masks for the airplanes, I took cough mixture and meds for headaches, stomach upsets etc.

..........didn't need any of them - but other members of my travel party did :wink1:

I agree with Colin - if you think you can, then don't let WG stop you

Ditto what Colin said -- take the normal precautions...

I wouldn't normally bring this up, but since this thread is active, it seems appropriate...

I just got back from a trip to Tahiti. It was our 4th trip of the year -- 2 trips to the UK, one trip to Alaska, and then the Tahiti trip. I take no special precautions and live life normally. But, I go prepared for the worst. I have been carrying injectable cortisone and nasal desmopressin with me everywhere I go, but never had to use it..... Until this last trip.

We were on a cruise ship in Tahiti and docked at one of the outward islands. For whatever reason (unknown), I went into an adrenal crisis. My potassium and sodium dropped way low and my CRP went to 153mg/l (that's not a type-o -- 153 with no decimal points). I have had other ER situations, but mostly attributed to hypothyroid and never hypoadrenal, so I wasn't sure what was going on. The ship's doctor dx'ed me, stabbed two of my cortisone vials into me and I was air-evacted back to a hospital in Tahiti. I was in the hospital for one and half days. I don't remember most of it as I was slipping in and out of consciousness -- lack of cortisone is pretty serious and "time-to-die" is measured in hours versus days.

Anyway, long story short, I was stabilized in Tahiti and there was no reason I shouldn't continue the cruise, so we met up with the ship on another island. It was a 10-day cruise and the episode took 3-days out of it. Otherwise, we had a very good time.

Something similar happened when we drove to Helena, MT to meet with Phil -- he came down from Swift Current. We spent several days with Phil and had a lot of fun. But, I ended up in the hospital for that trip, too. It wasn't as serious as the Tahiti incident, but I was still overnighted in the hospital.

Bottom line is that you can travel and you can have fun, but be prepared, because the unexpected can happen. For my issues (wegs took out my pituitary -- you can see my story below), my endocrinologist has limited my travel to places with good western medical care. If I only had wegs, I think I would carry a lot of extra pred and have doc's permission and training to self-administer when needed.

My gosh vdub...I just asked how yr Tahiti trip was on another thread before I read this. How scary....so glad there was a dr. there that knew what to do. Do you know why your adrenals went haywire ? Have you seen your dr. since you've back to figure out what might have happened. At least,glad to hear you were able to enjoy the rest of your trip.

Ah, yes, I was going to refer you to this thread, but you got to it first. :-)

The doctor on the ship was one of the best I have ever encountered. She was a young lady from South Africa. She was absolutely fantastic. I can't even begin to say enough nice things about her. I had three other docs along the way; one on the small island of Rangiroa and two in the hospital at Tahiti. All were good, but nothing like the ship's doctor.

The docs in Tahiti called my doctor back here and all were in consultation. I haven't seen anyone since I got home. There really isn't a need. With the hormone issues associated with GH, you are always on the edge of something like this happening, so it becomes part of life.

BTW, one thing I didn't mention, to further answer the original question, if you go outside your country, make sure your insurance covers you. My little episode in Tahiti cost $18,000 USD and that doesn't include the hospital bill (which I haven't received yet). My insurance is worldwide, but most aren't. So, just make sure you are covered before you travel.

Vdub, that is crazy.

I'm so glad that you came through this episode and the ones before.

We may have to ban you from going away if this continues :tongue1:

I don't want to say its routine, but I have a relatively narrow zone to live in and, when I get out of that zone, bad things tend to happen. If I mentioned all of them I'd be pegged as a whiner and complainer, so I don't talk about it much. I only mentioned this episode because of the thread topic. I don't think people should be afraid to travel and do the types of things they want to do. We just have to make a few adjustments.