Travelling with ITP - Airplanes

Wonder if anyone can help...

A bit of a background:

I am 43 years old.
I have been diagnosed with ITP in March of this year, I found 2 bruises and thought I didnt remember knocking myself they were normal size but dark and underneath my top leg I had a full bloodcount and it was 54 several blood counts later had a count of 12. At 12 I met with a Haematologist Consultant - I was then started on prednisone for 2 months and my count rose to 239 at its highest. Tappering off and been off it now for 3 weeks now. They test my blood every 2 weeks, it went from 239 to 187 back to 197 and this week 128.

I cant get my head around this and although my mother has ITP aswell and remains at a count of 74 for a few months. she seems to cope ok - she is 80.

This has hit me hard, and I feel very emotional most times. When my blood count is up and in the 190'2 I feel on top of the world at 128 I feel misserable, I know there are some people out there with counts in 1 or 2 digits and I should embrace life and carry on... I am just waiting for a drop or next week what if I drop...
I dont know as yet how to cope with life right now.

On Monday - 26th June I had booked to go with my mother to France, Nice, for 8 days, the Hotel is booked however I cannot bring myself to book airline tickets. I have the question WHAT IF, and if you knew me you would know I am a complete panicky, worry pot, and I always look at the worst case scenario. So my mother is suggesting we dont go as I wont enjoy myself.
The doctor I saw this week said its nothing to worry about and enjoy your holiday, I just feel I cant.
Is it safe to travel, what about air pressure, what if something happens, and what if I drop 60 in a week - I am just emotionally challenged
The doctor said to me atleast my diagnosis is not cancer as she sees a lot of people that she has to give that diagnosis to, I know that and I am grateful but I just feel emotionally challenged.

If anyone can give me some advise about going on holiday, travelling and how to live your life.

Fiona:

I know that you already know this, but your counts are great! It's perfectly ok to fly with those counts and many have flown in single digits. You respond well to Prednisone, so just take some with you and if you drop or get symptoms, you'll have it there.

I am more afraid of flying than I am of low counts. There are so many 'what if's' when traveling that far and your current count should be the least of the worries. Your doctor gave her blessing, you have to trust her! Stop looking at the numbers and pay attention to the symptoms. If you have none, you're doing okay!

Don't miss out on life because of this. The fear will only get you if you let it. This sounds like a great opportunity for you and your Mom. You might never get this chance again.

Yes please listen to Sandi. Do not let ITP control you!

Embrace life and live it to the fullest. Go on the vacation even if just a week forget you have ITP.


Life is not about the destination it is about the journey! (can't remember who said that)

Thank you Sandi.

Dont get me started on my fear of flying aswell but thats another Forum :laugh:
I know my count is good at the moment the only think I worry about is if it rockets downwards suddenly while I am away, and will I enjoy the break as I will be constantly looking out for bruises etc, unfortunately I am off prednisone so cant go back on them without doctors orders.
I just need to get it into my head to live now while I can.
But thank you!

Thank you - so hard to not let it control you but I guess it takes time...

Maybe you can ask the doctor to give you an emergency supply to take with you. That is not an unreasonable request.

Even if you do drop, low counts do not necessarily = death.

Hi Fiona,
A couple of years ago I flew from Australia to the US, across to France, Spain, then home visiting friends. None of the countries we went to had reciprocal health care. However I managed to get insurance & from then on I determined to make the most of the incredible opportunity.
Life is short (our friend in the US died 9 weeks later from a stroke) & I wasn't going to sit at home regretting & resenting.
It would be a huge benefit if you could get some help with your anxiety. I read a lot of books on complimentary healing & they all say our mind is the biggest factor in the state of our health.
Go, & treasure the time spent with your Mum.
mj

Fiona a couple months after my ITP diagnosis I moved to Tokyo with my husband & 2 sons - was on 60mg of prednisone and didn't have a hematologist there when we got on the plane.

I'm with MJ, life is short - and I am so so glad I did not say we can't move because I have ITP!!

Hi FionaJ,
When my platelets are in their 60's or 50's I start bleeding, bad bruising and achiness. I know a lot of people have no symptons at that range. You need to figure out where you feel ok. If you are not bleeding, bruising or having any other symptons, then go enjoy your holiday! I use to hike a lot and that was after I was diagnosed.
Melodie

I typically get itp symptoms if my count is below 20.

I went on holiday in October 2013 with a count of 40 and came back 10 days later only to have a blood test show my count had dropped to 24. No problems with flying at all (3 hour flights each way ). Just annoyed when I got home!! I did take prednisolone with me with instructions to start on a 20mg dose if I had significant bruising.

& I thoroughly enjoyed my holiday!!! I will admit that I DID have some bruising whilst away... But I DIDNT take any prednisolone. I put the bruises down to the effects of red wine :blush: (red wine decreases platelet aggregation & is known to make me a little less steady on my feet at times!!!!) Hope you can get past the numbers & concentrate on enjoying yourself

Since I'm traveling a bit these days due to a family health crisis, I'll add my thoughts.

If I have a platelet crisis, I know exactly what to do. I made a point to know my disease (as many people here have put it) when I was first diagnosed, and I gave the necessary info to my emergency medical contact person as well as key family members. So I live by the old Boy Scout motto of "be prepared" (but not paranoid).

I should have said at the time to FionaJ to make sure she gets the EHIC card, which is free, to ensure that should she need medical attention in Europe, that she gets it for free. But I missed her original post.. still, I've now said it for anyone else in the UK who comes across this thread.

Hi Ann, yes I did get the European Card, unfortunately that trip never materialised as I dropped down to 2 and was hospitalised, but in future yes will carry that with me - thanks!