OK, I’m back!
I’ll apologise again for my lack of blogging over the last month, it’s been hard to find the time to sit down and get everything that’s going on down on paper or on the screen, as the case may be.
It’s hard to write about the attention and questions asked about the blog without pumping up your own tyres too much, but that’s been the case more and more as the time has passed since my last entry. So, thanks to everyone for boosting my motivation and getting my a*** in to gear. And what better timing to sit inside and type one out than a beautiful, sunny, 26 degree Melbourne day! I’d hash-tag sarcasm, but they tell me hash-tags don’t work outside of Twitter or Instagram.
So my last blog was basically a recap of the first month of being on Kalydeco and a trip to Bali that was way too short and way too long ago.
Since then, everything has sort of been cruising along nicely. I got over the trip and the flights there and back with no problems, I haven’t really been sick or well, but I’ve been at a happy medium where things are good. I feel great, but my numbers on paper, where my lungs are concerned, have been either stable or have dropped a touch due to a slight cold/flu about 3 weeks.
I had out patient’s clinic last week where my lung function fell below 30%, which was very disappointing and added to my lack of inspiration to write another update, and was strange given how well everything else has been tracking.
My exercise tolerance is through the roof compared to BK (before Kalydeco), I can run around and kick a footy, I’m getting through cricket training and games with no real issues and being able to day to day stuff is as close to normal as I can be. Like I said, I feel great.
Where the exercise is concerned, it’s almost like my body isn’t creating as much lactic acid – My legs don’t get sore or heavy as much as they used, it’s like I have more oxygen getting around my body, helping everything work as it should. An example of how far I’ve come was at training last week – We set out penalties for bowling poorly, 5 or 10 push-ups per bad ball. True to form, I bowled poorly and went home feeling fresh after doing somewhere between 50-70 push-ups over the course of the night. It’s not a huge number, but when you’ve got spaghetti arms like mine, and could barely blow a candle out after walking a lap of an oval 12 months ago, it’s a big deal.
I’ve put weight on too, I’m now a hefty 61kgs, the heaviest I have ever been and people are commenting on how well I look. That’s something that hasn’t happened for quite a few years, even when I was well previously, I was still under weight and have looked crook in one way or another for years. It’s great to get that sort of feedback from people. It’s refreshing to have shit hung on you because your chest and arms are growing, it’s just never happened before.
I get a real idea of how far I’ve come when I think back to last Christmas – I was 51kgs in January. That’s a BMI of 17.2 – The lowest of the normal range is 18. I was able to put on half the weight by myself, but I was stretching it every day. I had to take a weight gain supplement with every meal and just hated the thought of eating. It’s completely different now, no supplements, minimal junk, I won’t go as far as saying I’m on a lean and mean diet, but it’s nothing like it used to be.
My weight etc. is good on paper too – My BMI is up to 21, which is smack-bang in the middle of that normal range for my age and height. The last time I was anywhere north of the lower side of normal was back in the late 90’s as a kid. That was when my lung function was hovering around 70-80%.
I feel like my body is stronger now too – It got to a point BK where I felt really weak all the time, my muscles would get fatigued seriously quickly and I’d start to shake like I’d done 100 push ups, just from bringing the shopping in from the car. That’s stopped. I feel stronger, like everything has been rebuilding its self, back to what it was before I got really sick.
All of that has come on the back of very little junk food too – I won’t lie, when I was sick with the flu, my cravings went up/motivation for cooking food went down and I was eating McDonald’s for breakfast every morning, and would push through a Popcorn Chicken here and there if I was desperate for some food. But I didn’t enjoy it; it actually made me feel sick. The only times I’ve really enjoyed take away like I used to was last weekend and the weekend before on the back of two big Saturday nights. It’s strange; I used to live on the stuff!
In the last month I’ve been trying a few different things, tinkering with the way I take Kalydeco, the foods I take it with, etc. all due to the fact I haven’t had the big improvement in lung function. Given that everything else was going OK, I thought it was time to try a few things.
I’ve worked out that I need a serious intake of fat more so than a high calorie meal, and as a result, need to take more Creon to get the full effect. Four Creon before I start, then eating half and taking another Creon with Kalydeco, then finishing off is the routine that seems to work best. Toasted ham and cheese sandwiches, hot dogs and banana flavoured Big M’s have been on high rotation.
Since I started doing this, there’s been a steady improvement, I’ve noticed my cough is more productive, but what’s coming up is lighter and thinner than anything I’ve coughed up in living memory. I have a before and after photo of some sputum, but I’ll save your eyes and stomach the trouble, you can just take my word for it.
My FEV1 is the highest it’s been a long time too – Before I started Kalydeco I posted it was 21%. Two days ago it had cracked 35% and I can still feel improvement coming.
I can’t tell you how exciting that is. It’s still low, but when you’re dealing with sub 20 numbers (the worst one I had done earlier this year was 18%), anything above 30 is amazing.
I’ve got a follow up sweat test booked in for next month sometime which is exciting, it’ll let me know exactly how well Kalydeco is working, looking forward to that. I’ll also be taking part in a 1-hour trial for a new inhaled drug that could help even further, but I’ll save that one for next time. Hopefully there’s something promising and/or entertaining to talk about there!
I think the biggest and most important thing to come out of all of this so far is the confidence I have back that going to hospital and being treated for chest infections isn’t what will keep me alive and, potentially, will let me keep my own lungs for who knows how long.
Hospital has been such a big part of my life forever and in particular over the last 12 months, but I’ve been out now for 18 weeks and don’t even look like going back in. “I ain’t goin’ back, I ain’t goin’ back!” for anyone that has seen Bad Boys 2!
Anyway, that’s about it for now – It feels good to write all this down, so thanks again to everyone that’s been on my back about it.
Give me a week or so and you can feel free to start again!
Good luck to anyone having a punt this weekend too, hope you can back a winner in the Cup.