Where have you traveled with ITP?

And how low was your count and how did you do? Did you take any precautions due to ITP?

Hi Roberta!

I went to New Zealand recently for 2 weeks with counts 18,000. It was supposed to be an adventure holiday with white water rafting, bungee jumping and the like but my hema wasn't happy for me to pursue those activities unless I did a round of Prednisone before leaving to boost my counts. I decided to opt out the most high risk adventures (without Pred) and did lots of walking and some horse riding instead. Had I seen my hematologist just before the holiday I would have taken the Prednisone with me just in case. I had contact details for my doctors always on me and a note in my wallet about the ITP. Luckily everything went well, the only biggest challenge was the fatigue that made some of the activities exhausting for me but I never said anything and just kept pushing myself.

I'm ff to Poland in August and my hema wants to see me just before the trip to help me prepare for it so I may have some more tips then.

Good luck with your travel preparations!

Hi Roberta!

2 cruises to the Caribbean and work travel all over the United States. I have had no trouble at all. I do wear a medical ID bracelet or a dog tag (when I do not want the medical ID noticed), in case I would have an issue that would require it.

I have done dozens of long distance runs, very long distance bike rides, many swims over 1.5 miles, and never an issue. My platelets have ranged between 20k and 44k.

I did have to quit chainsaw juggling though.... I seen it was 80 in Indy today???? Whats with that? It is only 55 up here all day today!

Jeffrey

I think I am def going to get a medical Id tag or bracelet....smart thinking!

how do you guys work flying? I have been told you can't fly if your platelets are under 30,000.
I ordered dogtags as soon as I got out of the hospital. Matches my husband's for diabetes. We're a mess.

My hema never mentioned any risks related to flyig with low counts - I've taken numerous long haul international flights with platelets under 30,000. It would be interesting if anyone was advised otherwise?

There are differing opinions on flying, but this came from Dr. Drew Provan:

"Well, there's no evidence that flying in a plane is dangerous even with low counts and if your counts are in the 20s then air travel is fine."

www.ukitpregistry.com/phpBB2/viewtopic.php?t=104&sid=0d8039f3c2f8c6de0fb9f79fd8775701

Here is a past discussion:

pdsa.org/forum-sp-534/6-general-itp-discussion/26441-flying.html#26444

Ms. Sandi, thank you! I have never had a problem nor has my doctor restricted any activities at all. He just told me to cool it on the extreme races that are obstacles courses and to be careful on the bike racing.

I went to Nassau (Bahamas) with my husband and my parents when my counts were pretty low - probably 30s to 50-ish. I was taking prednisone, my dose was probably around 30mg/day. I told my parents, I was taking a medication the side effects of which were rage and hunger, so heads up.

I had no problems with air travel or anything else related to the trip, the rage wasn't too bad, and I found ways to soothe the hunger (conch fritters).
Erica

eklein wrote: I went to Nassau (Bahamas) with my husband and my parents when my counts were pretty low - probably 30s to 50-ish. I was taking prednisone, my dose was probably around 30mg/day. I told my parents, I was taking a medication the side effects of which were rage and hunger, so heads up.

I had no problems with air travel or anything else related to the trip, the rage wasn't too bad, and I found ways to soothe the hunger (conch fritters).
Erica

Now I want conch fritters! I love Key West! WHY did you have to say that??????

From Australia travelled around the world - USA > France > Spain > Aust. Count was <30>, no medication.
I wear a Medic Alert bracelet, managed to get travel insurance, took Dr's letter with me.
In the plane I used moisturizer & nose oil.
mj

No problems traveling over the past 10 years.
Oh sure, early on I would not drive 1,000 miles when my counts were in the 4k range. But that was before I was comfy with all of this stuff. Never had a warning about flying. Although, I no longer go up in small aircraft only to jump out of them. The primary thing I find nasty about flying is the TSA. I tend not to fly much these days simply because I don't care to be treated like a criminal, then stuffed into a child-size seat, all after paying out the wazoo for a ticket.

And one should never quit chainsaw juggling! I'd cut back on 'rabid-ferret juggling' perhaps, but not chainsaws.
.

weirdjack wrote: No problems traveling over the past 10 years.
Oh sure, early on I would not drive 1,000 miles when my counts were in the 4k range. But that was before I was comfy with all of this stuff. Never had a warning about flying. Although, I no longer go up in small aircraft only to jump out of them. The primary thing I find nasty about flying is the TSA. I tend not to fly much these days simply because I don't care to be treated like a criminal, then stuffed into a child-size seat, all after paying out the wazoo for a ticket.

And one should never quit chainsaw juggling! I'd cut back on 'rabid-ferret juggling' perhaps, but not chainsaws.
.

Ahhhhhhh! A kindred soul!

Jeffrey

weirdjack wrote: No problems traveling over the past 10 years.
Oh sure, early on I would not drive 1,000 miles when my counts were in the 4k range. But that was before I was comfy with all of this stuff. Never had a warning about flying. Although, I no longer go up in small aircraft only to jump out of them. The primary thing I find nasty about flying is the TSA. I tend not to fly much these days simply because I don't care to be treated like a criminal, then stuffed into a child-size seat, all after paying out the wazoo for a ticket.

And one should never quit chainsaw juggling! I'd cut back on 'rabid-ferret juggling' perhaps, but not chainsaws.
.

Jack!

Where do you get the ferrets at?

Jeffrey

Didn't just travel - moved.

About 2 months after diagnosis we moved to Tokyo with me on 60mg prednisone - blind, didn't know who my doctor would be or if I'd be given a hematologist. I did get one and he was THE best [turned out he knew my US hematologist, small small world]!

Then we moved to Hong Kong - again blind as I didn't know if I'd get a hematologist. Did - I knew more than she did and she tended to panic.

We flew into China, Thailand, Cairo, Rome, London, Singapore, back & forth to the States.

This was one opportunity I was not going to let our family miss out on just because of my platelets!!

Well.....I know I went to Seattle with low platelets, but I can't tell you how low. I was there in late Jan/early Feb with a cold/virus, and I had my first EVER bloody nose. My count was around 40K in mid-Jan, and by the time I got it checked again in late Feb, it was also around 40K, but I wouldn't be surprised if it was 15K or less during my trip.

Since I wasn't going to do anything about it as long as all I had was a bloody nose, I didn't find a place to get a CBC while on the trip.

EDIT: I should add that my lowest count ever was 3K, and I didn't have a bloody nose back then....

Got to agree with Weirdjack - the worst part of our entire travels was the airports. Was so anxious it was a wonder they didn't pull me over for looking suspicious!! Oh . . & having to remove my belt every time, hitching my britches, going barefoot (UGH) & keeping calm among the masses . .
mj

I too agree! The airport stresses me out as well. I start getting anxious even packing asking myself do i have all my liquids packed correctly. I am good once I get to my destination.

Tamar,

Nosebleeds are so weird. I have been at a count of 2, and never had one, but my boyfriend gets them at least once a week...and he does not have itp.

We tend to stick to different destinations post diagnosis (US, Europe and Canada) so we know the medical care will be decent and the blood clean if a transfussion is necessary. We travel with Prednisone and my husband has worn a Medic Alert dogtag since diagnosis. We've never had an issue *knock on wood*.

Does your boyfriend have high blood pressure?