The year that was

2014 is rapidly drawing to a close. I have been reflecting upon the CF-related events of the past twelve months. There has been much good mingled amongst some not so good times. I give you the highlights and lowlights of the year that was.

Kalydeco was finally subsidised on the PBS for Australians 6 years and older with at least one copy of 10 different gating mutations. Hallelujah! This was the best news of 2014 for the entire Aussie CF community. These lucky people have been given a life changing opportunity. The power and hope of Kalydeco is truly the stuff of dreams.

Dave and I have officially enjoyed a full year of the certified real deal K+. On the flip side, Dave and I have a little less than a year of the open label trial to go. Bugger.

Running at St Peters on a cold and rainy day.

Running at St Peters on a cold and rainy day.

I started this year with a big goal to use my lungs, not lose them. I’ve definitely used them, and I’ve even improved them! Now that I can smash out 5km I’m looking forward to running 10km by the end of 2015.  Excitingly, I can finally run 5km faster than my nemesis, The Old Man. Our friendly competition has made us acquaintances. The Old Man bought me a coffee, we’ve exchanged emails, we’ve texted, and he sponsored Team K+. He’s a good guy.

Team K+ raised over $1500 for CFNSW/ACT. Big thanks to those who generously sponsored us!

Running in 1 degree celsius and loving it!

Running in 1 degree celsius and loving it!

I’ve had many memorable runs. Like the time I ran in 1 degree celsius in Canberra. I was so happy to get out and run around the lake in the almost-freezing air! Or the time it was absolutely pouring and blowing a gale. The parkrun stop watch got so wet that it broke and my PB couldn’t be recorded. After a few minutes of frustration, this situation reminded me that my running is not about PB’s. The second time I ran in Canberra was also significant. This time I wasn’t meeting Sam for a coffee afterwards, I’d been at her funeral the day before. That run was hard. I was spent in every possible way but I dragged myself around the lake – doing a shuffle, then a walk, then a bit of crying, then a bit of hyperventilating – and somehow made it back home again.

To love is to lose, and I loved and lost Sam. I had the opportunity to tell her what she meant to me and I took it. I have thought of her every day. Sometimes I have smiled and giggled, sometimes I have cried, sometimes I have done both at the same time. Losing Sam was super tough. I am still grieving.

Sam and I on my 30th birthday.

Sam and I on my 30th birthday.

Dave helped me to cope with the most acute part of my grief. He knows that particular journey from the inside and he gave me the supportive space I needed to express my emotions.

Likewise, my sister Anna was instrumental in helping me survive the final half of the year. She made me a priority even though she is currently growing my niece/nephew-to-be and has been experiencing the many physical difficulties of being with child whilst simultaneously working insane hours.

2014 has been The Year of the Collapsed Lung(s). Fortunately, this phenomena has not directly affected Dave or I, but it has fostered within me an unhealthy fear of this happening to one of us. I have been able to witness the very extreme end of the spectrum of how life-altering and life-ending a pneumothorax can be.

At this very moment, my lung function is staggeringly good. I have been working extremely hard to stay well. I am so thankful that the stars have aligned and my hard work is paying off. As a result I haven’t been admitted to hospital in a crazy number of months. Which means that new staff members on the ward have no idea who I am. This is fairly odd because I’m used to being instantly recognised as half of The 11 West Power Couple. Now I’m just a regular visitor. I’ve even forgotten how to program the drip machine. OMG.

A nurse gets IV antibiotics ready for Dave in his penthouse suite with an amazing view.

A nurse gets IV antibiotics ready for Dave in his penthouse suite with an amazing view.

In stark contrast, Dave has spent six weeks in hospital this year. Of course, lots of people with CF have spent much more time in hospital than this, but when you stop and think about it, it’s a significant amount of time. That’s all of your annual leave and sick leave combined, and spent somewhere, and on something, much less exciting than a trip to Europe. Our friend Hayley was critical to our survival during Dave’s last hospital admission. She cared for our boisterous pair of dogs and cooked a mountain of chicken, pork, chops and pasta for Dave to enjoy.

Watching cricket and infusing IV's simultaneously.

Watching cricket and infusing IV’s simultaneously.

We met some awesome PWCF and we spent quality time with long-known friends who have CF.

Dave is a mere month away from turning 50. He’s so close to this milestone! This is pretty darn incredible given he was born in the dark ages when the life expectancy of PWCF was ridiculously low. He will definitely celebrate this special day. Stay tuned.

That just about wraps things up!

Thank you for reading my collection of musings this year and delving into the world of living with CF. Your support and interest is much appreciated! I wish you a fantastic 2015.

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One thought on “The year that was

  1. My Darling J!

    We received a card from Elwyn and Brian Hoskin today who said they had never received a Christmas letter with as much good news as the one we recently sent. Your health was an important part of that good news which they celebrate also.

    I find it interesting how we can carry so many different emotions at the same time. Celebration for your lungs at the same time as grief for Sam for instance. Life can be a bugger a and wonder at the very same time.

    Mum and I delight in the sisterly friendship you and Anna have. That’s not guaranteed in any family.

    We’re delighted in the way you are each making your way in the world as well. And boy can you write!

    You know what. I’m looking forward to you being at my funeral! Though not too soon yet I hope. Although I’ve done a lot of interesting stuff, I hope to get up to some more yet.

    I look forward to your summary of 2043. That will be just about my last year I reckon.

    Love,

    DadD

    Like

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