Travelling to Europe with MDS

[Bambam]

I'm struggling with a decision: to go or not to go. We bought a second home in Portugal two years ago - this was to be our winter home in the subtropics of Madeira Island. That has all changed now, thanks to MDS. Or does it have to?
My husband wants us to go this month to put the house on the market but I am nervous about travelling 1) because there is Dengue Fever in Madeira and although it is less active in Winter, and of the least dangerous type (worst produces hemorrhagic fever) it can still make some otherwise healthy people very ill and needing transfusion and 2) because I am a little scared of travelling given the unknown of this disease.
My question to those of you who have lived with this disease for a while is whether you have travelled? To where? Where would you avoid and why? What precautions did you take? What was your hb when you flew?
Any thoughts that will help me to make this difficult decision would be much appreciated. By the way, pre-diagnosis, I was an avid traveller.

[bebop]

I personally would talk to your dr about it. make sure there are drs and or hospitals that know about mds and if you go take your records with you. good luck with whatever you decide.

[Darice]

My husband is German and our doctors have encouraged him to make a trip there. We haven't done it yet. I know that the travel will be difficult for him, but I have no concerns about being in Germany . . . if only I could just wave a wand and be there. We would be near Bonn & Cologne . . . plenty of good doctors there. I wouldn't be as comfortable if we were further from big cities and good medical care. But I wouldn't be comfortable here either if we were too far from big cities and good medical care. The Dengue Fever is certainly a complication to be taken into account. I would want to be sure all counts were OK before leaving here and know that I could get them checked there. I guess I would consider getting important parts of the records translated . . . my husband's first language is German, but he does not speak medical German and a professional translation might be helpful. I probably wouldn't want to be gone more than a month. We are closing in on two years since his diagnosis. Hope this helps.

[slip up 2]

Brenda....
we only went to Grand Cayman, Turks & Caicos and Bermuda all short flights for us also direct non-stop back to YYZ if we needed to get home fast.
I called the Oncology Dept's in these countries before booking, spoke with them explained the situation,if we had a problem could they accomodate.
Of course i took all blood reports & phone #'s

Your Dr. will advise you....

That is a long haul from Vancouver to Madeira.

Kate

[MDSPerth]

Brenda, we too were avid travellers before Pauls diagnosis in July 2012 and we feel like our greatest hobby has been stripped from us. In actual fact we were due to fly to Bali the day after a very unscheduled BMB. Our place of residence is in Perth, Australia. Since diagnosis, we have travelled to Melbourne and Tasmania both approximately a 4 hour flight away but still very close to possibly better facilities than we have access to here in Perth. Each time we have travelled the haematologist has OK'd the trip and has provided us with the latest copy of the letter forwarded to Pauls GP following his visit, and advised to take all relevant records with us.

Since Paul has been on the Neupogen and EPO his WBC (4.3) and RBC (HG 125) sit inside an acceptable range, and his platelets have even improved slightly (from 24 to 75). Recently, the haemo has even given his consent for us to travel overseas! However, I think Pauls confidence is a little shattered and he seems quite reluctant to take up the challenge. If and when we do decide to travel outside Australia, the plans will most likely be reasonable short term both in planning and time spent away - ie no longer than a month. We would think more in terms of New Zealand or a visit to see his family in England (USA/Canada also seem a pretty good opiton) - anything that had a touch of a language barrier or third world conditions will not even come into our consideration.

Maybe one day if he is lucky enough to find a bone marrow match and have a successful transplant this can be reconsidered

[DanL]

Brenda,

I think each MDS case is a little different. I have had low platelets, but othewise normal blood counts and am not transfusion dependent and have found travelling to be just fine. I have made phone calls ahead of time to see where I could seek treatment if needed. In the last couple of years, I have travelled to England, Ireland, France, and Germany without any real incident.

I agree that checking with your doctor about the risks and making a decision based on that risk is a good starting point.

[Janice M.]

Hi Brenda,

I have low risk MDS and am currently under a "watch and wait" status. I agree with the others that suggest that each person's situation is unique. My HG is at the low end of normal, WBC is around 2.9, ANC at 0.87 and Platelets around 52.

In the past year I have gone to a resort in Mexico and have been on a cruise in the Carribean and one in in the Mediterrean. I have flown to each of these destinations as well.

My suggestion would be to speak to the Dr. in advance and carry your information with you just in case.

Janice

[Chirley]

Hi, when I asked my haematologist about holidays ( when I still had MDS), he said definitely no cruises and only plane trips under 2 hours.

He was adamant I had to have the BEST health insurance it was possible to get.

In the end I was having transfusions every 2 weeks and had little to no neutrophils so I never travelled.

Regards

Chirley

[Bambam]

Thank you for your comments. I have put in a call to my Hematologist for an extra appointment to discuss (scheduled monthly CBCD but appointment each 3/12)
I have to admit to feeling frightened of travelling far but have tonight committed to a 4 day trip in May to Arizona to see my stepdaughter graduate university with a car trip to Grand Canyon. I'm nervous, but will heed all your words of wisdom.
As for Madeira - although it is an island with about 2500 people, there is a teaching hospital, my next door neighbours are a GP and Orthopedic Surgeon and they are friends with one of the two Hematologists on the island. Also, in Lisbon, 1.5 hours by plane, I have an MD friend who studied hematology for 3 years before switching to public health medicine (she wanted a family and felt that hematology would be a 24/7 job, much as it fascinated her.) I should feel safe with this circle around me, but still feel really worried about possibilities. What, I wonder, could happen? My husband says to think positive things and only good things will happen. I want to, but it hasn't worked thus far.
No insurance will cover me for anything related to MDS - and who knows what could be related to it anyway - lots of wiggle room there for the insurance company.
I will now wait to see what the Hematologist says ...
Thanks again, B

[bob weinberg]

I spent 6 months in southern France in 2011, getting 2 units of PRBCs every 10-12 days at Princess Grace Hospital in Monaco. The cost of the transfusions was less than in the US, and it was covered by my wife's Blue Cross plan. The doctor I was assigned was a bit less attentive than I am used to in the US, but the nurses were great. I found it very important to insist on seeing my CBC results, because one time my HGB had fallen to 5.0 and the staff hadn't noticed and when I pointed it out, they scheduled me for another 2 units after the weekend. That would have not been the case if I had waited for them to look at my CBCs.

[Neil Cuadra]

Here are some travel tips from the AA&MDSIF.

[cathybee1]

It is a personal decision. Everyone's situation is different. Bruce was first diagnosed with neutropenia, and has dealt with that for almost 10 years. After Bruce's diagnosis, we "grounded" ourselves for 3-4 years and avoided public places. The only traveling we did was to doctor's offices.

A trip to Patagonia in Chile came up, a place Bruce had always wanted to see, and he made a conscious decision to go, understanding the risks. He had a transfusion right before we left. He avoided catching a cold that was going through our tour group, and came home healthy. We subsequently made another trip to South America.

So far, so good in our case. It could have been different, of course and this is not an endorsement to travel, but as Bruce says, living is risky, whether you have a bone marrow disease or not.

[Bambam]

Thanks for all your support ... the trip went so well that after we had returned home from 3 weeks away, and with marginally better blood numbers (although statistically the same!) we stayed home for a month, then took off again straight after my monthly blood test (still stable) and returned after three weeks. Travel is food for my soul and spirit and I feel grateful that I was able to do it. My latest blood tests are a little down (although still statistically the same.) However, My Hematologist was very supportive when I saw him last week and is encouraging me to travel as much as I can.
I carried my BMB and labs with me at all times and was mostly well although I did get tired walking hills, especially when the weather was warming up. We ate early dinners and went to bed early, which when I was younger would have been unheard of, but which now is actually enjoyable! Oh, and by the way, I have been trying to apply mind over matter with regard to the MDS and to focus on positives - and unless some weird symptom appears - and it feels good!! I don't want to think of myself as ill.
Nike said "Just Do It" and I aim to keep doing it as long as I can. I hope this inspires you to take that trip you have been wanting to take and that your current diagnosis allows it.

[bebop]

I think it is great you are able to travel! A great idea to take all the medical stuff with you just in case too! I am so happy you are doing well! Travel on and have alot of fun!

[Cheryl C]

I can completely understand your disappointment at not being able to travel as freely. I just want to share a couple of tips I've found helpful.

Whether travelling or at home I always carry Echinacea 5000 mg capsules with me. In Australia we can purchase this herbal product at health shops, pharmacies and even some supermarkets. As soon as I feel the slightest hint of a sore throat I take one capsule with water, and then another a few hours later. They are almost 100% effective in knocking an imminent infection if you take them immediately, and if you are careful to avoid sugary foods/drinks. You can also break open the capsule and mix it with a teaspoon of honey so it directly touches your throat.

Minimising sugar in your diet is really important. Raw (unprocessed, unheated) honey seems to be OK, but I find that cane sugar and even maple syrup weaken my immune system.

Hope these hints help! Have a wonderful time on your travels.