GearUp4CF Day 6: Rossland to Creston

Day 6. The big one. The day that jumped out at me from the route guide because of this:

Elevation profile for day 6 where we climb the Kootenay Pass Summit

Elevation profile for day 6 where we climb the Kootenay Pass Summit

The Kootenay Pass Summit (that bit at the top) is Canada’s highest paved road that is open year round. After a fairly relaxing 65km warm up that was mostly rolling, the climb was as tough as it looks. I couldn’t quite remember exactly how long it was and so surprised myself by reaching the summit 5km before I thought I should. The descent was also icy cold and once again rainy. It was a hard day.

At the summit: me, Norm, Walter, Paul, Patrick

At the summit: me, Norm, Walter, Paul, Patrick

I grabbed a photo at the top with everyone who reached the summit at around the same time. Walter, in the middle, has two kids with Cystic Fibrosis. His eldest daughter died about 12 years ago when she was just 12 herself. His youngest, Ali, is 21 today and is doing pretty well thanks to a double lung transplant.

Paul, to the right of Walter, has Cystic Fibrosis and had his own double lung transplant a few years ago. He’s one of 3 riders on the trip who have Cystic Fibrosis.

Special kudos to Andrea, Patrick and Tom who each climbed the Kootney Pass twice for extra donations to the cause. (Patrick’s on the far right of the photo – he passed me on his second lap of the climb although he is a bike racer) All three are exceptional cyclists but were still pretty knackered by the end of the day.

To mark our biggest climb of the trip I want to share an email we received from a guy called Cary who is living with Cystic Fibrosis:

Dear GearUp4CF Riders,

My friends George and Paul are riding with you and I’ve asked George to share my story.

I am a 36 and I live with CF. Until I was 28 my life was very normal and mostly unrestricted. I played ice hockey, completed a BSc, MSc and started a PhD in computer science and enjoyed swimming (usually about 1200-1600m per workout). I got married at 26, bought a house and was full of optimism that I was beating CF. I tended to need IV treatments around every 18 months. The only time in my life CF really had gotten in the way was when I was trying to get my pilot’s license and could not get it due to my genetics.

Then at 28 my life began to change.

The first bit of news was that I was cultured with B. Cepacia. I knew little about the bug at the time but assumed I had just months left in my life. I panicked and had no idea what to do. Since then I’ve learned a considerable amount more about the bug. I luckily have a strain that is not considered exceptionally dangerous, only “kind of concerning” as I was told many times. I still have no idea how I got it but I do know it was a kick in the pants and a major motivator at the same time.

So my wife and I did what every CF couple would do, we put blinders on and tried to forget about the future. We started trying to have kids artificially and just before my 30th birthday I was blessed with two super healthy twin daughters, Anna and Sophie. They have been my motivation and focus since I first saw their hearts beating on the computer screen during an ultrasound at the ripe age of 8 weeks into development.

My lung function has dropped considerably over the last number of years. I am now at a FEV1 of 30% on my good days. I’ve been as low as 22%. I was employed as a software engineer until Nov. 2013. Without warning I was laid off, likely due to my frequent illness. Officially I was let go for budget cuts, but then somehow a few weeks later money was found to hire someone new. Before my insurance expired I applied for long term disability, only to sadly learn that my employer did not know how to administrate their own plan. I had never been signed up correctly and did not qualify to receive the coverage I expected.

Life below an FEV1 of 30% is something I wasn’t prepared for. I often get out of breath sitting up and need to lie down. I have spent close to 40% of the year on IV drugs, just trying to build up enough strength to carry on. Simple things like grocery shopping have become my one big activity of the day.

I was listed for a lung transplant in March of this year and I am currently patiently waiting for the call. I find visualizing simple things like running, swimming or seeing my daughters grow up and walking them down the aisle at their weddings helps me forget all the risky and scary parts of transplant. There just isn’t a choice but to carry on.

This week the news about Vertex Pharmacutical’s Kalydeco and Lumacaftor is something that the entire CF community is excited about and should be proud of. This is the true game changer for a good number of people suffering from CF. Years ago the CF battle was with nutrition as most CFer’s didn’t get the chance to mature to adults. Through research and new treatments CF care generally beats malnutrition. For a long time the CF battle now has been about lung disease as most young adults suffer from increasing lung damage until transplant is the only remaining option. Now we may be moving to a new phase. But the battle isn’t over yet.

We have gotten here because people like you have dedicated your time and energy to CF awareness and fundraising to find a cure. Unfortunately these new drugs don’t help everyone and we don’t know what will emerge next for the CFer’s who no longer suffer from lung damage.

The ride you are on is something I feel I could never accomplish myself. Yet joining you are CF adults who have completed the transplant journey and are thriving. While you are physically climbing mountains, I am figuratively trying to climb my own transplant mountain. Your incredible dedication and sacrifice to be making this long bike ride somehow helps me feel your support is behind me and my family. At the same time, if you are having trouble climbing your own mountain I hope my story helps you keep going. I too will be capable of astonishing physical feats once I’ve recovered from transplant and I hope to join you on your ride.

Good luck the rest of your journey and thanks again!

Cary

I know many of you reading this blog have already donated or come along to my fundraiser event. But if you can find it in your hearts and wallets to spare another $10 it will make a difference. Please do me a favour and share the link to my fundraising page with everyone you know and ask them to donate.

About emilytakesabreak

This year I'm taking a break. I'm setting out to live life a little differently. Enjoy it more. See more and do more. And help more. I want to give back, in a very local way, to people and businesses I care about. I'll be taking on new projects, trying out new ways of making a living and hopefully have a great time.
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