Travelling with MDS

[christina]

I was diagnosed with MDS in 2009 and for the first couple of years whilst under Worthing hospital I was having regular blood transfusions as my Hb was low. Since then I have been recieving treatment at Kings and at this time am on 500ug of Darbopoiten and 263 mcgs of G-CSF weekly. I have an appt. for a routine bone marrow test (anyone want to take my place) on the 8th April. My Hb seems to be slipping again but everything else ok. hopefully we can find out why.
When we decided to travel overseas to visit our daughters there seemed to be a great deal to organise, I spoke to doctors and nurses at Kings who were all very supportive and with a specail cool bag was able to carry my injections (I self medicate) along with a letter from my doctor, I had no problems at the security gate and only had to show the letter once. We travelled through Singapore, Australia and New Zealand. These bags are good for up to 22 hours however I didn't need that long and the when we arrived the injections were placed straight in the fidge. I also carried a thermonitor to check that the fridge was at the correct temp.
Insurance was the most difficult as for the length of time we were away and the fact that we were spending a week in Singapore and they will only allow 24hrs, would you believe I was quoted £2.000 from one company who are in the Macmillan booklet, more than the cost of my flight, so after a lot of phone calls and applying online I went with a company who insured me for everything except my MDS, I felt that if the worst came to the worst with my MDS I could fly home cheaper. But glad to say all went well and whilst in New Zealand had 2 blood tests over two months and this was so easy, I paid around £8 and had the results the next day, these I emailed as an attachment to Geke Ong who kindly emailed back the next day.
I feel very blessed to have been able to play golf with my grandsons and also to share some precious moments with my daughters, I even went on my old "boogy board" and caught a couple of waves with my grandson Sam. Yes there were times that I felt tired but I think the warmer weather helped and having so much support from everyone helped me be very positive about the whole trip, my feelings were that I had to do it while I still had the energy. Please contact me if you have any questions, Tina (Christina)

[chris]

Hi Tina

Thanks for posting. Bet you won't get anybody on this forum volunteering to take your place for the bone marrow biopsy on 8th April!!! Though it is all down to the doctor's skills and technique I think and the last one I had was actually quite tolerable - that's as good as it gets I think! Hope it is not too bad and that yor results are good.

Glad your travels went smoothly and you got good support from King's and Geke. The insurance is a real bugbear for so many on this Forum. £2,000 is quite a ridiculous premium for somebody who has the disease effects under control and improved by self-medication.

I am doing an article on travel for the next issue of the MDS Newsletter so if you fancy writing me a short piece on your experiences, I'd be glad to include them. Please send me a private message with your e-mail address if you would like to do this.

Best wishes

Chris Dugmore

[Freddy]

Hi Christina,

Your account of your travels is most encouraging.

How did you get on with low Hb counts and the flying, as I see most airlines wont let one fly with a count below 7.5 and they ask for medical advice if it is between 7.5 and 10.

The reason I believe is due to less oxygen in the planes cabin.

How did you fare on a long haul flight, did it cause any problems.

My wife and I are thinking of taking a long flight holiday and her Hb is normally around 10 to 11, she has CMML 1 and we were wondering if she would be ok.


Thanks Freddy.

[janetstanford]

Hi Freddy
if you have ever read any of my posts you will know i am transfusion dependent and was diagnosed in 2008 and went into remission November of that year ...
In 2009 i was given permission to travel to the states (florida) and i was transfused the day before its approx a 9 hour flight and had i no problems at all the only thing i did was carry dettol wipes for the loo and taps ( plane toilets are horrible in fact if i could have got a bottle of Domestos in my hand luggage i would have ) i also took hand gel and wipes and used these several times during the fight for washing hands and face and silly as this may seem i also sat with the anti-bac wipes over my nose and mouth at times a little over the top but i explained this away by saying it was refreshing i must have looked Stupid ....but was not taking a risk i then also returned to the states in 2010 and then 2011 i flew to Fort myers via Amsterdam and Atlanta this took 15 hours approx did the same as 2009 transfused day befor and carried the wipes ect .....
I am the same as Chris with all the germs and social kisssing issue and even though my whites have been normal for 3 years now i still take care
Hope this helps when you considering long haul good luck
Janet

[chris]

Hi Freddy

Travel insurance-wise, Hb of less than 10 seems to be the cut-off level in the questions about MDS. So my guess is that the airlines would happily accept people with a count of 10-11, especially if you say that only those below 7.5 need a certificate of fitness to fly.

Janet is right to highlight the infection risk of flying (I have opted not to fly with CMML-1 but this is probably OTT!) and suggested all the sensible precautions you could take. From your question, I think the crucial issue for you is about how your wife would fare on a long haul flight regarding lower oxygen levels for 8 or 9 hours and this might depend on any other health issues as well as her normal levels of fatigue and breathlessness. You could ask her doctors for any recommendations. Other than that, if you were worried, could you consider breaking the journey into 2 shorter flights and staying over somewhere to have a day or two to recover?

Hope you get a holiday sorted soon! We are off to Italy by train and looking forward to the adventure of rail travel!!!

Best wishes

Chris

[christina]

Hi Christina,

Your account of your travels is most encouraging.

How did you get on with low Hb counts and the flying, as I see most airlines wont let one fly with a count below 7.5 and they ask for medical advice if it is between 7.5 and 10.

The reason I believe is due to less oxygen in the planes cabin.

How did you fare on a long haul flight, did it cause any problems.

My wife and I are thinking of taking a long flight holiday and her Hb is normally around 10 to 11, she has CMML 1 and we were wondering if she would be ok.


Thanks Freddy.

Hi sorry about the delay in answering to you have only discovered how to reply. I had no problems flying long haul we had 10 days break with our daughter in Singapore befor flying on to Australia then over to New Zealand, at the time my Hb was around 10 and i felt fine throughout all flights. Unfortunatley my Hb is now down to 8.5 even though I am on the highest dose of Darbepoietin weekly, my bone marrow tests were fine no change for 4 years so was pleased about that, white cell and platlets fine and am on GCSF for that. I would have no hesitation in long haul again however I would hope my Hb would be higher as feeling the difference, up again at Kings in June, see what they have to say. Would love to hear more from you Regards Christina

[Freddy]

Hi Christina,

Thanks for info.

My wife and I have just returned from 3 weeks in Hong Kong, a place we really enjoy and have been several times, before she was diagnosed with CMML 1 last year. Her counts were Hb 10.9 WB 10.2 and Platlets 68. controlled with Hydroxyurea. These were the results 2 days before we flew so she was deemed fit to fly by our consultant.

The flying went ok, she was a bit more jet lagged both ways and her legs got swollen on way back, even wearing flight socks. She saw her GP who said in was just superficial and the swelling went after a few days.

We had a fabulous time, paced ourselves and did all the sights.... it was a real tonic as my wife is facing a SCT sometime in the near future.

We used an insurance company called Good To Go, who gave us a fair quote given all the circumstances. I cant comment on their service should one want to claim as thankfully everything went ok for us.

Like you we are at Kings in June to see what the plans are for future treatment.

Regards Freddy.

[christina]

So pleased to hear you had a good holiday and am sure you both must feel so much better for it. Have made a note of the insurance company. Last night i was at a Forum in Brighton which was very interesting with a nice group of MDS people and we all had travel insurance stories, some good some not so good,
My Hb went down to 7.6 so I went in to my local hospital and had a transfusion last friday, have to say feel a lot better, however I need to discuss my medication when I am next up at Kings June the 12th. I think we all feel better with this nice weather long may it last, best regards Tina