About 2 months ago, I got an invitation to attend a workshop run by the World Hemophilia Foundation in Montreal, being held in early December. The workshop is about youth advocacy in the bleeding disorder community, and due to WHF’s connection with some of the large pharmaceutical companies, they have obtained funding to pay for attendees to travel to Montreal! See, big pharma do do some good! (While this isn’t the point of this post, I know a lot of people have issues with the big drug companies for a range of reasons, some of which were recently examined on an Australian science program, and while I don’t disagree with many of these criticisms, the fact is my community probably wouldn’t be able to hold conferences, connect the patient group, or hell, even have half the treatment options we do. Yes, some of those nice things are probably only possible because those on statins, for example, are getting ripped off, but I have to be grateful for what my community gets) So in about a week, I’m off to Montreal for a grand total of 4 days! I know, its going to inspire a bit of jetlag hell, but its going to be a really worthwhile experience, especially with the World Congress coming up next year in beautiful and local Melbourne!
I’m hoping to share the insights and tools I pick up in this workshop when I get back, but today I wanted to talk about travelling with a bleeding disorder or other chronic medical condition. Below, I’m going to talk through a number of areas that you should consider prior to your OS trip.
First up, one of the more challenging issues: Insurance
While I’m lucky to have been born in a country with a relatively excellent global health care (I’ve heard shocking stories from other parts of the world, and that’s just the developed world), once you head outside your own country’s borders its a completely different story. I’m not willing to travel without it – even though for a person with a bleeding disorder there’s no greater risk of injury than anyone else, the consequences can be more significant, requiring additional medical support which can be impossibly expensive without insurance. People with bleeding disorders often struggle to obtain medical insurance because of the lack of understanding of the issues or… how to word this… industry preference to not take on the risk, though generally speaking Australians, at any rate, will be fairly independent and not need much assistance while travelling except in accidents, just like anyone else. Personally, the only bleeding risks I pose outside a car accident or similar is actually on the plane – due to the incredibly low humidity environment, my risk of nose/sinus bleeds skyrockets. Oops, that was quite the pun! I’ve been really lucky in the past and I’ve been able to get insurance first try, through the agency that has taken my flight bookings, but when I was arranging this trip, I had no such luck. I had to try 3 companies prior to getting insurance – I had one flat refusal, one company that initially refused me then supplied me with an endless wad of paperwork, until I found the third company from my HTC nurse who did an over the phone assessment and covered me on the spot.
Phew! So my tips for finding an insurance companies?
1. Be involved with your local HTC and patient support network – these guys will have reliable tips on who has insured other bleeders/whatever your condition in the past, so you’ll have a greater chance of success by approaching those known to cover your condition
2. Be honest and open when asked questions – a lot of companies will reject your insurance if they later find out you haven’t been honest. That’s not a situation you want to get stuck in at 3 in the morning while you’re in the ER in a country where you’re not fluent in the language and you’ve got a rapidly swelling joint/posterior nose bleed. Ugh.
As I mentioned above, for me and I suspect others with a VWD diagnosis especially, the journey is in fact not the destination, and just a series of risks all tumbled together! Very low humidity environments can cause mucuous membrane bleeds (while for me the biggest risk is always my nose or sinuses, for you it might be differently!), and one of my medications, desmopressin acetate has to be stored in a cool environment, which can be tricky to maintain at 30,000 for 14 hours straight. If you’re prone to joint/muscle bleeds and bruises, the small, uncomfortable plane seats might even post a bleed risk for you, and that’s before you get to the risks posed by other passengers – those suffering from chicken wing syndrome (where keeping their pointy elbows in their space is not possible, potentially smooshing into your vulnerable tissue), seat kickers, exuberant and physical toddlers. Then there’s the whole conundrum of getting ice packs, needles and syringes past airport security and customs officials of whichever country you’re heading to. Phew! Again, there are a number of things you can do in preparation to make getting through the airport easier:
1. Before you go, suss out all the medications and medically required liquids you’ll need to take with you and head to your HTC or doctor and get a letter from them. Make sure they include everything – I have my GP note not just that I’m taking an injectable medication, but that it needs the ice packs (the liquids/gels restriction has reared its ugly head with this one before!), and that I need to carry nasal spray to prevent nose bleeds. Bizarely the only time security has ever asked to check things is when the gel ice packs have come up on the scanner. I usually warn them that I have needles and I also have a letter, but no one has asked to see it, its only about the liquids limit!
2. Use your stuff. Yes, that means your medications – even if you have to infuse/inject/spray whatever it is in that weird confined space that is an aeroplane, even if it means someone else gets uncomfortable or weird about it. You have nothing to be ashamed about, and them getting weirded out by a needle is better than them getting weirded out by a torrent of blood coming out your nose! Also – get up and walk, stretch or do some yoga poses (I’ve walked before but I’m going to give yoga a crack this time!). It will stretch out those cramped muscles which will help manage or prevent any of those incidental bruises or bleeds.
This one is new to me! I always knew plane food, like hospital food, was pretty awful, but now I will be avoiding pretty much all of it! Some of the reasons I’m avoiding it include there is too high a risk of gluten/dairy contamination, and on my domestic legs I can’t even request those options, its all processed food (the only time I’ve had fresh food supplied on a plane was on a Qantas flight from LA and they had fresh apples!) and therefore is reduced in terms of its nutrient supply, and flying is inherently stressful on the body (dehydration, lack of sleep, messing with circadian rhythms and altitudes) so it never helps also eating horrible, nutrient devoid food. I’m doing a food shopping run before I go to take actual food on the plane. I’m going to grab some treats from Loving Earth, dehydrated bone broth, dehydrated coconut water (yep, that exists! How cool!), spirulina, some jerky and some protein powder. I’m going to have the yummiest food out of everyone, I can’t wait! Of course, when my shopping is done next weekend I’ll show you what I’ve got.
My other tip to dealing with plane food? If its your only option (for whatever reason), don’t stress about having to eat what is presented to you. Unless consuming certain foods actually risks killing you almost immediately, a few days of discomfort isn’t the end of the world. I know with everything I’m doing and have detailed above I’m putting myself in the best possible place to be as healthy as possible while on the plane and away, and that is all I can do.
I’ll be sharing more about my trip as I go – both tips of travelling as well as what I’m involved in with the WHF! Only a week away now!