Fear of Flying

I have been searching and searching for a definitive answer concerning if it safe to fly with ITP. I guess the concensus is not if you're under 30,000. I asked my doctor Friday and he was very serious about warning me not to fly below that, especially long distance. We have a flight coming up in November-- 9 hours. I have been doing well this past 4 months, but we all know, including my doctor, that that can change in a heartbeat. I have to admit that having an episode overseas is scary because last time I dropped like a rock to zero in about a day. I am still going, but I am a bit afraid at the same time.

Both my grandsons had snotty noses Friday when we had them. I can't help but feel nervous any time I see evidence of a virus. Will I ever get over it? I don't know. Maybe if I have a long remission it will get easier. I feel as if the Sword of Damocles is hanging over my head.

We had a doctor post here a long while back that the main risk in flying at very low counts was tiny blood vessels in your ears bursting and bleeding from the pressure.

I've flown at counts in the 30s. No problems. You respond to prednisone? Take some with you and if you have a drop, take a dose?

And don't sleep in that guy Procrustes' bed.
Erica

This is what Drew Provan has said. It's a judgement call, I guess.


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.

I agree about low counts and the turbulent rides - you would need a platelet count >50 for that.

Cheers

Drew

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

you need to tell your kids to keep thegrandkids home if virus factories - my kids would never do that to me - in fact younger one isn't coming over today as 1yr old has runny nose from hell. tell them to be more considerate of you.

If there's vomiting, I will. but you have to understand that we have taken them every weekend for 8 years. To suddenly tell them that they are too germy for Grandma would hurt feelings.

The problem about flying is, suppose I knew for sure I had 30,000 platelets. Nine hours later, I might have zero. I dropped from over 350,000 to zero in a matter of hours last time. It could happen that way again. Guess I'll just have to keep fingers crossed.

Roberta - that has happened to many ITP'ers. All I can say is that you have to live your life. You have everything on your side right now and hopefully, it will stay that way.

Interesting. My hematologist has never told me not to fly, even at sub-20k counts. I have not flown a lot in the past 11 years (I abhor the TSA and being treated like a criminal!), but I have done a few trips across the country with no issues.
Okay, I stopped skydiving for sport long ago...that sort of airplane ride is a tad much for ITP. Well, not so much the airplane ride going up as it would be the dive, then canopy ride coming down.
But a pressurized airliner cabin suitable for infants, is an entirely different thing.
I guess it goes back to everyone is different.
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Kids sick, they stay home - that they should understand at any age. I'm thankful my sons/wives don't bring ill kids over [in an emergency, yes].

If you are not comfortable flying then you should stay home - long flight, never know what may happen.

I have flown several times with counts in the 30's and 20's, and maybe lower! How would you know? Who cares! Jack is right, pressurized cabin, babies and expectant mothers, and they fly! I have never been told not to fly. I would not listen anyway! AND I am alive and living! I will be flying again next week! (hope my arms don't get tired!)

Jeffrey

Jeffrey I only use one of my witches brooms at a time, can lend you the other to save your arms - let me know

My doctors say there is no real evidence either way, but they aren't very happy for me to fly when my count is very low. I had a count of 2 last week, and needed to fly to Norway (2 hour flight), and they said I shouldn't go unless I could get the count above 10. Happily, with a bigger dose of Romiplostim, it went up to 22 in 3 days so I could go (and then to 141, since I had a count done while out here). I have a trunk full of steroids to take just in case!

But they just don't know. I did cancel plans and a flight last year because of low/unstable counts, but that was a 24 hour flight to Australia. They said it was up to me, but advised against going, so I didn't. The unpredictability of counts is really frustrating.

Sometimes I've noticed more bruising after a flight, but I think that's also because you knock your legs/knees/arms around more in the narrow cabin and carrying luggage.

Yes, it does come down to what a person is comfortable with. I guess we will deal with it. I have buckets of prednisone. My doctor said if I ever have signs of ITP on vacation to take 60 mg of it. but although prednisone appears to have worked well for me, last time it took ten days to get cranked, so it would not get me up to 30,000 after a day or two probably. Heck, I'm not even sure the prednisone did anything and that my body just didn't remit spontaneously. No telling.

I will just hope it doesn't happen.

I'd like to see Australia but not enough to fly that long to do so. It is so far away! I thought 13 hours to Beijing would never end much less 20 hours. I despise flying anyway. Despite what they tell me, I don't think flying is possible.

Had a cyst removed yesterday. She said it was "oozy" and asked what my blood count was. I told her as of last week it was 350,000. Seems like cutting into someone and messing up tissue to get a cyst out would be cause enough for being "oozy."

Melinda wrote: Jeffrey I only use one of my witches brooms at a time, can lend you the other to save your arms - let me know

Melinda!

You are after my own heart! I have been dying to make a "broom" crack and tie it into flying! LOL
I just don't want to offend anyone, but my sense of humor does run that way! So I assume you fly a lot? hahahahahahahahahahahaha

My broom has super turbo. It's shiny black with a thick thistle. :woohoo:

You can have mine - it's broke not for fear of flying - I just get sooooo sick when I have to fly :sick: :sick: :sick:

Cindy Ann

I flew to America a few years after having itp, granted i had perfect platelets around that period for six years but when I came back within three weeks they had gone down and I had been in remission for six years. Now that could have been a mere coincidence because I believe the cold I got caused it. I think it's more to make sure you have no virus or cold at time of flying. Ensuring you are perfectly well and hydrated. I have once flown with counts of 80 thousand and that was one hour trip. I understand the feeling of nervousness about it but I'm not sure there is concrete proof that platelets go down because of flying, if you do happen t have a dip is that not a men coincidence and nothing to do with the flight.i have to say personally I would not fly with counts below thirty but ite only cos im just a nervous person in general. I used to go to Drew Provan and the doctor told me above fifty would be fine. It's weird cos I see so many different levels they say you can fly at. If you are at say 20 I would say no. I think maybe if your platelets are stable and don't drop up and down all the time it should be safe.

My last point is I feel that there is no proof either way and its all just a guessing game as far as it comes to flying. I do think though stress brought on a few spots on my arm when I was overly nervous. I had a bad turbulent flight and I could actually see spots come up so just relax, stress will bring them down, if you decide to go on the flight just do something that helps you relax.

Ash!

How you been doing? Nice to see you back!

Jeffrey

If I waited until my platelets got up to 20k to do anything, I would never do anything.
But then I haven't seen 50k in over a year now....haven't seen 80k in the past 11 years.

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Jeffrey I have no fear of flying - my brooms are great.
What I'm afraid of is getting wet, don't want to melt

And we have had so much rain the past few days, and it isn't going away till Monday, so I'm grounded.

I think it is crazy to worry about flying when someone has a count over 200k - as I've mentioned before and you all are sick of hearing, I moved to Japan 2 months after diagnosis and on 60mg of prednisone and not knowing what I'd do once I got there. Was that stupid or crazy or wanting to live life? I say the latter.

weirdjack wrote: Okay, I stopped skydiving for sport long ago...that sort of airplane ride is a tad much for ITP. Well, not so much the airplane ride going up as it would be the dive, then canopy ride coming down.
But a pressurized airliner cabin suitable for infants, is an entirely different thing.
I guess it goes back to everyone is different.
.

Where did you jump 'Weirdjack'? Competitive or fun jumping?
Jac

Where did you jump 'Weirdjack'? Competitive or fun jumping?

Mostly at Greene County in Ohio. Small airfield which wasn't much more than the club and one hanger.
Purely for fun. I am not a competitive person by nature.
.

Weirdjack, are you on any sort of treatment at all? Just wondering. You said they haven't been able to get you much over 50K. What have you tried? Everything? It is so sad they can't do anything for so many people. That's what it means to be an "orphan." If we were diabetics, no problem. Lots of drugs.

Melinda, you are such a downer with every post. I feel as if you are hitting me in the head with a baseball bat every time I read one of your posts!!

My counts have ranged in the teens and low 20's for the past year, and I've flown regularly (about once per month). My doc doesn't like it, but--other than a decompression event, where my platelet count would be my LEAST worry--I haven't seen anything to make me think twice. And no, I haven't seen any increase in symptoms (my only real symptom has been bruising).

Interesting you feel that way RHofm as I am only agreeing with you - except for having sick kids over.

Jack,

I have always wanted to skydive but I think now that I will just wish I had done it earlier. My hat is off to you all that have done that, what a rush that must be!

Jeffrey

Hey Jeffrey.

I'm fine thank you. And yourself? Oh I'm always loitering around the boards haha. It's good to keep up with this site cos it's got loads of information. I'm plugging away trying to keep myself healthy and all that. my platelets are now 216 bout a month ago so I'm happy. Hope you are doing ll?

Ash,

I am fine! Doing quite well really. Knee surgery went well and I ran tonight for the first time in quite a while and it is only 17 days since my surgery! So I am happy! I am very happy for you! 216 what a nice number! That is where mine were after $80,000 USD worth of IVIG! LOL

I trust that everything else is well with you on your side of the Pond!

Jeffrey

That's great glad everything went well. So are you big Into sports?Oh my word 80, 0000 dollars. That's so crazy. I get stressed if my bill reaches 500 euro. I never had to pay for Ivigs. That's so mad.

Yes, things are grand still tired and all that but doc thinks I have a problem with blood pressure when I first stand I feel dizzy but I get better once I keep walking. And it's cos I asked them to check my blood pressure standing and it was different to when I was sitting. I mean I may as well have diagnosed myself lol. So I'm getting some sort of tilt test. And an endoscopy, haha. I just want my energy back. You seem to have lots send some my way.

Oh I see your profile pic. Yes, I can see u like sport lol. (Face palm)