Sunday, 18 November 2012

Where the Rubber meets the Road: Life on Kalydeco

Okay, enough with the sweet talk already, whats life really like after six months on Kalydeco?
Let's get one thing straight: I am not cured of Cystic Fibrosis. 32 years of this deasease has well and truly left it's calling card on my body. However, Kalydeco is about living the control (as my friend Emily Schaller letsrockcf.org aptly put it). That's the best way to put it, controlled.

I still need to do my treatment's just like before Kalydeco, but they last longer and are so much more effective! Nebulizer am/pm: (Salbutamol, Ipratropium, anti-biotic) and in the middle of the day pulmozyme. The big improvement for me recently was that I was able to go off anti-biotic's for 14 days. You may think "big deal", but I've not been able to do that since I was 16. Baby steps! I went back onto a half dose because I felt a little sharp pain in my right upper lung, best to be safe than sorry. In terms of mucus (you knew mucus had to be talked about!) the production is hardly at all, what dose come up is from the damaged parts of my lungs. I have extensive bronchiectasis, a common problem in CF caused by chronic chest infections. So the pseudomonas is still present in those areas, hence the inhaled anti-biotic. I hope over time I will be able to kick the infections to the curb, it's still very early days. A more recent addition to my meds is Bronchitol, but I want give that it's own spotlight in another blog.

In terms of Physiotherapy. Before Kalydeco my daily routine included: 40 mins on The Vest with PEP. 20 mins Zen Chi machine which I have to add is still THE most effective physio equipment I've ever used! It relaxes all the muscles supporting the back and chest making the mucus dislodges like nothing else, huffing it up on the Zen Chi makes it easy work! 2nd best machine: Bipap about an hour before bed with pep. It was a life saver when really ill, I never knew taking a deep breath could feel so good! Really effective for clearing the lower lobes of the lungs. When I had a very bad chest infection the old faithful percussion was done by my lovely Benny! Now my daily routine is much less intense: Biggest change NO MORE COUGHING FITS!!! just after Nebs,  PEP for 10 mins is enough to clear what little production I have and that keeps me going all day (if I miss it sometimes, I don't miss it!) The Vest I use if I have caught a cough, so not much. Bipap, I still do before sleeping, but mostly because I love the deep breathing, so relaxing! (and I sleep like a log!!) Zen Chi, again is mostly if I have a chest infection.

 A bone of contention with my physiotherapist's was "what exercise do you do?", when your clearing your chest this much and not eating a whole lot, plus chasing 4 little boys around... well I had no extra energy to exercise. Walking was the most I could manage, sometimes.
Since Kalydeco, I can RUN! I ran with my boys and didn't need to stop to cough! I got a ski machine and manage 30mins no probs. I got an ab twister, 20mins no probs! And walk everyday 20mins no probs!! This was IMPOSSIBLE before Kalydeco. I now have my muffin top to motivate me too! (again impossible before K! *giggle) Still working on that one!

Enzymes are almost zero. Only have a couple with a heavy meal; i.e: Roast dinner or Lasangne. Even with hardly any on board I continue to gain weight, no stomach aches or toilet issues. I hope in time I'll not need them at all, but even this is a very agreeable change!

So there you have it, I still have CF no doubt about it, but its not that frantic chasing the cough business that I had before. (I have an important natural health routine too, which I'll blog about another time) Once I clear my chest, I'm off and away. I can make morning outings, which I couldn't do before. Social life back on track. I hope over time the upkeep becomes less and less. I'm a patient women, I am perfectly happy to sail along, as long as the direction is up Up UP!

This winter came and went, Spring is here in Australia and usually in November sometimes September I have an admission for IV anti-biotic's... NO admissions since taking Kalydeco!!! Colds and Flu came and went without the need of IV's, recently Impossible before Kalydeco. I've only taken Ciprofloxacin once the whole time, usually I would have had to take 4 courses of it at least over Autumn/Winter/Spring.

Funny thing happened the other day, I ran into an old family friend who catered for our wedding. She was staring at me, double taking, unsure if it was me. She turned away to get in her car because she didn't recognised me!! I said,"hello Liz, it's me, Faye!". She nearly fell over!! She said,"OHHH! I thought I recognised you but then I thought 'that can't be Faye'. You the picture of health!" She said she was going to visit me but thought I'd be too sick!! That's the first big reaction I've had from my friends, so funny! Made us laugh. Quite moving to realise people can see I'm getting better, these are the Little moments that really hit home.


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