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Showing posts with label Travel. Show all posts
Showing posts with label Travel. Show all posts

Sunday, March 6, 2011

The cystic fibrosis sufferer who took off around the world

The cystic fibrosis sufferer who defied doctors and took off around the world... with a backpack full of life-saving drugs





By CAVAN ARROWSMITH
Last updated at 8:29 PM on 28th February 2011
For as long as I can remember, I have wanted to travel the world – and forget for a while that I have cystic fibrosis (CF).

It is a disease that I was born with and it affects the lungs and digestive system, causing them to become clogged with thick, sticky mucus. I will die from it, although I don’t know when. I am 24 – the average life expectancy is 35.

About 8,500 people in the UK have CF and, so far, there’s no cure. Five babies are born every week with the condition. But I live a pretty normal life. I work in IT, I’m an avid cricket fan and have played since my early teens.
Cavan Arrowsmith
Down Under: Cavan Arrowsmith with his girlfriend Claire in Sydney on his trip to remember
I spend time with my girlfriend, Claire. I also have to take medicine morning and night to manage my condition.

As a child, being told you aren’t going to live for many years is hard to understand. Now I have to be realistic, and know my limits, but I am also determined to live a fulfilled life.
 
My aim was a ten-month trip to the US, Asia and Australia to prove I could do it, and to inspire others.

It took months to organise and there were a few medical dramas along the way, but in the end even they turned out to be part of the adventure . . .
Cavan Arrowsmith
Hot and dirty: Cavan struggled on the India leg of his trip because the country's environment was not good for his health
FEBRUARY 28, 2010
It’s a little after 5am when my dad, John, my 67-year-old nan, Irene, and Claire pile into Dad’s car for the short trip from his home in Stourbridge, West Midlands, to Birmingham Airport and the big send-off.

My 120-litre red-and-black backpack is stuffed to bursting, but not because I need lots of clothes. Half the pack contains a three-month supply of medicine. I have to take five tablets to help my digestion, and Creon capsules that contain a pig enzyme that helps break down food.
I also have two inhalers with drugs that help keep my airways open and free from inflammation, and a nebuliser (a machine that turns medicines into vapour that I can then inhale through a mask) to deliver a daily antibiotic that helps to tackle chest infections.
There is another nebuliser that helps break down the mucus in my lungs, reducing the amount I cough.
Majestic: Cavan and friends at the Grand Canyon
Majestic: Cavan and friends at the Grand Canyon
On top of these I need a daily calcium supplement and multivitamins as I can’t absorb nutrients properly.

Oh, and there are more tablets such as emergency antibiotics. The other half of my pack has all the usual stuff such as walking boots, my laptop and sleeping bag.

I told my doctor about my plans and he said as I was well, it was a good time for me to travel. Dad and Claire hug me goodbye, leaving me alone with Gordon Clarke, my best friend from primary school, who is joining me for the whole journey.

After a few final waves we’re through security and on our way. Next stop: San Francisco.

MARCH 1
Our flight goes via Frankfurt, where we join Robert Black and Matthew Smith, friends from Birmingham City University. Gordon and I will come back to the UK, briefly, after three months to replenish my medical supplies.

Rob and Matt will be with us for the America leg and then head home. We allow a week to see San Francisco but just two days in, my nebuliser breaks.

We have to order a spare part from my hospital consultant back home in Birmingham, who arranges for the manufacturers to send out the part. It takes a week to arrive.

But we make the most of the time to see all the city’s famous sights, such as the Golden Gate Bridge, cable cars, the ferry ride to Alcatraz, and Chinatown.

Cavan Arrowsmith
Eastern promise: Cavan and his friend Gordon conquer the Great Wall of China
MARCH 10

We’re finally on the move again and from San Francisco we head inland to Las Vegas in our rather cramped camper van. It’s the best our budget can manage. There’s one double bed at the back, which two of us share, and one single bed in the kitchen.

There’s also a double bed above the driver’s area. We call this the ‘penthouse’ and take turns to sleep there every fourth night. My friends have never treated me any differently because I have CF. But I can’t be as carefree as they are.

When Matt comes down with a chest infection, I have to make sure I sleep as far away from him as possible. Catching a cold can mean hospital for me. I am also supposed to eat 5,000 calories of food a day, which is double the normal recommendation for a man.

This is because my body is constantly fighting infection, which burns up huge amounts of energy. I can’t miss meals and I am always hungry. Luckily, there are no shortage of food stops on a US road trip.

MAY 3

After Vegas, and then the Grand Canyon, we head to Scottsdale, Arizona, and carry on across America, stopping in Texas, Tennessee and then New York, where we watch Ricky Gervais at Madison Square Garden.

It reminds me of home and how much I miss Claire. We have known each other since the age of five, growing up together as friends before becoming a couple in secondary school.
Meeting the locals: Cavan with members of the Black Hmong hill tribe in Vietnam
Meeting the locals: Cavan with members of the Black Hmong hill tribe in Vietnam
My CF is part of her life, too. I have been hospitalised five times, mainly for chest infections, for about two weeks each time. The last time, Claire came back to visit me from Portsmouth where she was studying law.

We plan to move in together when I get back, and settle down. I want children, although not right away. We have discussed the fact that I might not be around for ever, and when my children are teenagers I don’t want to be so unwell that I can’t be part of their lives.

But I’m hoping by then there will be a cure. And it is all the more reason to stay fit and active, as exercise really helps reduce infection.

With Central Park, the Statue of Liberty and Fifth Avenue behind us, we head north to Boston and our final stop on this particular leg.

MAY 20

We are back in Birmingham so I can restock with medicine. My consultant said I needed to come to see him only if I wasn’t well, and I feel fine. Better than that. It’s so fantastic to see Claire.

We have to wait for Gordon’s India visa to come through. In the meantime, I begin filling my bag with boxes of tablets, inhalers . . . My stepmum, Joanne, and sister, Lucy, 17, come to see me off.

Next time I see Dad, I’ll be 24, which is amazing really as when I was born the doctors told him I wouldn’t live beyond my teens.

One of the gang: Cavan on a group camping trip on Fraser Island in Australia
One of the gang: Cavan on a group camping trip on Fraser Island in Australia
JUNE 5

Bombay is shocking. We stay in a cheap hotel 60 miles from the city centre with cockroaches on the floor and no proper loos. It’s hot and dirty and a constant challenge to find unopened, bottled water to clean the mouthpieces of my nebuliser. 

The air is dusty and I cough a lot. Parts of India are really beautiful, particularly the Taj Mahal, and Goa is gorgeous but it’s always in the back of my mind that this place isn’t good for me.
Leaving at the end of June does not come soon enough.

JUNE 25
We’re in Beijing, struck by the vastness of Tiananmen Square and everything that’s in it, including Mao’s Mausoleum. We’ve heard the best place to access the Great Wall is from Mutianyu, about 90 minutes out of the city, and we’re not disappointed.

There’s a cable car to the top but Gordon and I walk up instead. It’s about 800 steps, which takes 40 minutes. I beat Gordon up there. With regular long walks and cricket, I’m actually pretty fit by any standards.

My lung function – a measure of how well the lungs are working – is average, not for CF patients but for anyone of my age, although when I have a chest infection this drops dramatically.
Our thighs burn from the effort but it really is worth it. The views from the top are stunning.

JULY 7

From Beijing we head to Shanghai. It’s humid, something I have to avoid. Damp, warm air in my lungs is a breeding ground for bacteria.

Gordon and I stay in an eight-bed dorm and there are a lot of sniffles going round. I start to feel unwell.

We press on to see the Terracotta Army at Xi’an. I’m feeling pretty terrible and I suspect I have picked up a cold as I am coughing a lot, but we continue to Hong Kong, by train, and then fly to Hanoi, Vietnam.

I know if I seek medical help it will be admitting defeat, so I take emergency antibiotics as a last resort.
Brave face: Cavan on a drip while being treated at Bangkok Hospital
Brave face: Cavan on a drip while being treated at Bangkok Hospital
AUGUST 10

By now we’re at Nha Trang, a beautiful city on Vietnam’s coast, but I’m feeling worse and the cold has become a full-on chest infection.

One of the biggest obstacles to this trip was finding insurance. I was turned down by 15 companies before the Cystic Fibrosis Trust put me in touch with Ageas, which covered me for £470. Gordon paid just £120.

I need treatment and though it takes them five days, the insurers find me a hospital in Bangkok, so we board a bus. I’m in hospital for two weeks while the insurance company organises accommodation for Gordon.

Finding high-calorie food isn’t that easy, and noodle soup just doesn’t cut it. So every day Gordon brings a McDonald’s milkshake, burgers and fries, and then spends the rest of the day with me as I slowly recover.

AUGUST 28

Rested and back to health, I am discharged and we fly to Perth. In hospital I was running on a treadmill with the physiotherapist every day, so I feel great. And now in Australia I’m out on the beach, swimming and attempting to surf. Being outdoors really agrees with me.
Within a few weeks Gordon and I are broke, so we both get jobs in call centres and work for the next two months.

NOVEMBER 4

It’s my 24th birthday and, like all my birthdays, it’s a real reason to celebrate. I’m planning to live a long time. But I am aware that 50 years ago babies born with CF often didn’t live beyond a year.

Claire and two friends, Laura and Karl, have flown out and I am over the moon. We hire a car and drive to Adelaide, Melbourne and then Sydney, where we climb the Harbour Bridge. I would move here in a heartbeat.

DECEMBER 23

Gordon and I arrive back to a freezing Birmingham. I’ll be for ever grateful to him for helping me achieve something I’ve held in my heart for so long and to the people who stepped in along the way to keep me on track. I’m home.

Job done. The sky really is the limit.

●Cavan is raising money for the Cystic Fibrosis Trust. www.justgiving.com/cavanarrowsmith


Read more: http://www.dailymail.co.uk/health/article-1360955/The-cystic-fibrosis-sufferer-defied-doctors-took-world--backpack-life-saving-drugs.html#ixzz1FnanVQ9D

Saturday, December 13, 2008

International Travel Tips

Recently returned from Europe and I'm just updating a few tips that I've learned (gasp!) 6 years later. Happy travels!

Update 10/28/14


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Well, I'm heading off for a few weeks overseas and I'm recalling all the mishaps and mistakes I've made over the years traveling abroad.

It occurred to me that, like the other CF stuff I post, I should post this stuff in hopes it will prevent the frustrations I've had while traveling. Let me know if you have any other tips you would like to add to the list to help others! :)

BTW keep checking back. As I pack for my trip (and while I'm abroad and realize what mistakes I made this time hahaha) I'll keep adding to the post.

  • Look up how to say and describe Cystic Fibrosis in the language of the place you're going. If you're going to Europe, this might not be a big deal. But as I found out when I was ill in Japan on my last trip, it was super helpful to have a blurb written in Japanese describing what in the world this disease was (CF isn't as common in Japan as it is in Europe, as I'm sure you know). How to do this? Go to wikipedia.org. type cystic fibrosis in the search bar, and then select the language you want. Yup, now the next page will be in a language you can't read. But there should be an article that you can click on that says "Name = Cystic Fibrosis." Print that article out (there should be some pictures in the article) and keep it with you while traveling. It will save you some hassle

  • Get your doc's recommendations for IV/PO antibiotic dosing should you need to be treated overseas. I'm not on IV's that often so I can't always recall what dosing I typically get - and typically CFer's get a much higher antibiotic dose than the everyday population. While I was in Japan I have a rough time getting Cipro 750mg 3x a day... they thought I was nuts. So I had an alternative Levaquin dose that my doc said would work that the Japanese would give me. Making sure you get the right dose will make sure you get better sooner!

  • Make sure your compressor and Vest will work abroad. My PARI ProNeb Ultra does not work in Europe, nor does my Respirtech vest, and I need a huge transformer (not just a little adapter thing) to make sure those suckers work abroad. So I take my eFlow (battery powered) and my old school HilRom 104 that has a buit in transformer when I go to Europe. Before I got my eFlow I just invested in a PARI ProNeb Ultra Euro style becasue I was going often. In Japan, the compressor didn't work either - the juice wasn't enough so the PSI wasn't high enough and I wasn't getting my meds correctly (not to mention everything was taking FOREVER to neb). So again, the eFlow is an option here and additionally I bought a PARI ProNeb Ultra for Japan. Yey for 3 continents of compressors! But the Respirtech worked just fine in Japan. Oh yes and beware of that PARI Trek - the PSI is not high enough for TOBI or Pulmozyme! Better get an eFLow or continent-specific ProNeb Ultra :)

  • Buy disposable nebs. I am militant about santizing my nebs after each use (boil or soak in alcohol after each use to ensure I'm not re-breathing in bacteria that's been growing on the neb between treatments). But often times I don't have time to do all this cleaning when I travel. So I pack a billion disposable nebs when I travel. These Hudson Updraft II's are disposable (use 'em once, toss 'em) and aren't HORRIBLy expensive - and are approved to be used with Pulmozyme!!! . Well worth it to save the time from having to santize meds or risk getting sick from not cleaning properly. I literally pack 100 in a big suit case for a 3 week trip (use 4 a day for 21 days) and then I have an empty suit case to bring goodies back home! http://www.medplususa.com/list-product_info-p-Hudson_UP_DRAFT_II_OPTI_NEB_Nebulizer_with_Tee_Mouthpiece_and_7_Tubing-pid-8395.html

  • Bring a doctor's note for your Vest, compressor, meds and those 100 disposable nebs. Some places I've gone I've been fine with all my equipment, but other places I've been accused of doing all sorts of ridiculous things. But since all we're trying to do is live our lives as CFer's, get your doc to write a letter saying all this stuff is medically necessary (but NO, it's NOT oxygen and you won't be using it on the plane). This can help expedite customers / security, etc.

  • Keep all meds in original containers. Yup, it takes up more space to do this. But it's always nice to have your name on the Rx label proving that these meds are yours for your use, and you're not some criminal doing something that is a no-no. Update: I have been putting meds in individual plastic bags and taking a pic of the Rx bottle label and taping it on the plastic bag. Saves a lot of space from bottles

  • Bring extras of everything. I will never forget when a family member had to stay abroad for an extra week due to 9/11. Planes weren't allowed to fly in for quite a bit of time and as a result his trip was unexpectedly extended. What would happen if he would have been a CFer and ran out of meds overseas???? It's not fun to think of 9/11, but there are all sorts of reasons why your trip could be unexpectedly extended and I always pack extra meds just in case I need them!

  • Bring all meds/compressor/Vest as carry on. Yup, it's A LOT of stuff. And it's hard to lug around. And most likely the airline will give you hell about it. But you know what's worse? Being without your meds/compressor/Vest for a few days while the airline tries to find your lost luggage. I bought several little Samsonite 4 wheel carry on luggage things to bring on board with me - 1 for my Vest and 1 for my compressor and meds and 2-3 days worth of disposable nebs (I can't fit all 100 as carry on!!!). Don't let any airline person talk you out of this.... it must be carried on!!!! If necessary, remind the airline that they'll be responsible for your $20k Vest if it's broken by them.... better you carry it on with you

  • Bring your own yeast infection treatment. I didn't realize how widely these treatments can vary and currently on my trip right now I wish I had my tried and true Monostat! ahhhhhhhh!

  • Bring your own tampons. Of the 10+ countries I've been to in Europe and 2 in Asia, the only tampons available were OB brand. Most American women are NOT a fan of those and would like to be able to use an applicator. And pads just don't always cut it. So BYOT. Update: My recent trip to Germany revealed tampons are being sold with applicators. Not sure if that's the case for all of Europe, but thumbs up for Germany!

  • This is thanks to Nightwriter (thank you for this great idea): not all countries have isopropyl alcohol to clean your nebs. When I was in France they would only let me buy a small amount at once and it was hard to find. So bring your own (yes, takes a lot of space but use it up and you have room for souveniers to bring back with you!). Thanks again for the tip Nightwriter!

  • In 2012 I was marvelously diagnosed with CFRD so packing needles, insulin, are now a fun part of my travel adventures. Definitely call to make sure your hotel room has a refrigerator (this makes sense for domestic travel too of course). I found that the mini bar often isn't cold enough. Great for pulmozyme as well

  • Sinusitis has also become part of my nightmare since my last update, so making sure my sinuses are taken care of and not infecting my lungs is a priority. It's difficult to find a way to boil water in a hotel room to sterilize to shoot the water in your nose. Domestically I typically get an Rx for sterile water at the pharmacy at my destination and then pour in my Neil Med bottle. Neil Med luckily offers NasaMist Saline Spray pre filled sterile water sprays. Yes, you probably can't put your other meds in the spray like you might at home (steroid, antibiotic), but it's much better than nothing, right?