Sunday, 23 December 2012

Early christmas present

I had clinic on Friday, and it turned out to be one of the best clinics I've had in a while, so sort of like a really nice early Christmas present. My Lung function was the best it's been in several appointments (not sure what the percentages were yet as I always just read them off my copy of the letter which is sent to my GP) but I vaguely remember the amounts, and I think the first was about 1.90ish and the second was just over 2litres, for me I think that's nearly 70%, and considering the fact I haven't felt great (despite finishing IVs 3 weeks ago, I'm blaming the weather) seeing my lung function be so impressive has seriously boosted my confidence in knowing I can get it up and keep it there, as it's been hovering in the 50s-60s for a while now. Not that those numbers aren't still pretty damn good, but I do prefer the higher numbers :D

I wasn't expecting this as I'd been feeling crappy, exhausted, random breathing attack things that would leave me gasping for breath for no reason (which confused my physio and dr nicely) and coughing all night, therefore getting minimal sleep. I'll admit my exercise attempts do falter in the winter, as I like to go on walks around where I live, and that just isn't happening in these temperatures. Wind, rain, fog, snow, none of it could end well for little me!

The rest of the appointment was great too, my weight was stable (ish, I did loose 0.2kg but I put that down to already being starving again just after lunch, despite managing breakfast, lunch, two cups of tea, a packet of cashew nuts and a fortijuice all within the 4 hours I was awake before heading to clinic) my sats were a nice and lovely 98% too, and then there's the extra things that happened:

I'm getting to trial the Tobi Pod inhaler at my next appointment - you have to do lung function before and after to make sure it doesn't affect you too much; if you drop more than 10% (i think?) after trying it, you're not allowed to use it, but if its less than that, you can keep it, and therefore drop the horrendous tobi nebs. WIN! I HATE the taste of those nebs, and even though Ive heard the inhaler doesn't taste much better, it's done in seconds so that beats sitting with the eflow for a good 10-20 mins inhaling the awful taste. Also a bonus of halving the amount of neb cleaning I need to do and also the obvious cutting down time, which is handy if you're in a hurry to leave somewhere and forgotten to do all of your nebs. So basically, I'm sooooo hoping I can use this. The idea that I'd have to continue using the foul stuff whilst everyone else gets a short cut would really nark me off!! Now they just have to get the colomycin one finished so I can completely remove antibiotics from my neb regime!

I'm possibly changing my steroid inhaler (I can't remember the name, ever, just that its orange and round) to something stronger, and hopefully this might stop these weird out of breath whilst doing nothing moments. They're slightly scary as I don't know whats caused them and I don't know how to slow my breathing down (as I can't seem to take a deep breath in when it happens) or calm myself down to just get back to normal til it just happens itself. Maybe I'm just odd.

And thirdly, I'm trialing DNASE the appointment after I've tried the tobi inhaler, as hypertonic saline might not just be getting the job entirely done anymore. I can't remember if the physio said I'd do both or just one of them (deep joy at the idea of adding MORE to my neb routine, I don't need to do much at the moment (two nebs twice a day) but it doesn't mean I fancy more of it) but hopefully it shifts the rubbish in my chest! I need something new to work as needing IVs every couple of months (or even sooner sometimes) is just getting so stupid.

My dietitian would, as always, be happier if my weight increased, but is still determined to get to the bottom of my random high blood sugars. And definitely wants me on some sort of insulin. So a blood test was sent off to check the HABc1 or whatever it is, as that's what originally sent alarm bells ringing, when the number was at 50 at my annual review, and she doesn't want it higher than 42. The idea still annoys me, but it does have its advantages - controlled sugars would hopefully benefit my chest and also help my weight.

Finally, if you think of anyone over the holidays, please think of Kerry. She's only 21, now at 8% lung function and struggling every minute. All she wants for christmas is to be here, spend time with her family, fiance and gorgeous doggies, and get that call for lungs which she so desperatly needs. If you haven't signed on the donor register, PLEASE do it now. It takes two minutes, and you could save the lives of up to eight people. No one likes to think of death, but surely knowing that you could save the lives of so many people, and prevent more families experiencing the horrendous grief of loosing a loved one, that should make it a damn good reason to sign up.


Gem said...

Oooooh loads of exciting things happening! Very jealous of the tobi podhaler though. It would be fantastic if you could use it. Hurry up with the damn colomycin ones please!!!

Boo insulin =/ DNAse might work wonders for you which would be great. I've always wondered whether your chest could get too used to HTS and for it not to become effective anymore...?



Grace O'Shea said...

Glad you had a good appointment! I use DNAse as hts makes me spew! Hopefully you'll find it works well for you :) I'm the same with the exercise, no motivation to walk in this weather hehe. I have CFRD, only on a tiny amount of insulin but I know when I'm unwell my sugars spike up and make my chest worse and it ends up in a vicious circle!

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