Friday, 18 September 2009

And the props go to the hypertonics.

Hypertonic saline sometimes seems like nothing short of a miracle. I started it on Wednesday night b/c I had clinic on Wednesday, and suggested to the Dr I try hypertonic saline again, as I only tried it once, probably when I was about 10, and didn't feel any effects then (although I should really have given it more than a couple of days). Basically, I wanted to give it another bash, just in case. It's all b/c mid-August I went to Scotland for the day (to a seaside town called PortPatrick) and the sea air had a massive effect on my lungs. So I wanted to try hypertonic saline again. Anything to try and get my lung function back up. (For those who are wondering what the hell hypertonic saline is, and why it compares to sea air, its basically just salty water, inhaled through a nebuliser, so essentially, salty steam.)

My Dr immediately agreed with me trying the HTS, as when I get a bright idea like this, for some reason, it seems to really work on me (Last year, I suggested ditching Tobra IVs and trying Colistin IVs, partly to give myself a break from the constant Tobra I was probably subjecting my leftover hearing to, and b/c I thought that trying something different would have a more powerful effect than my usual IVs. And it did, even with the side effects). Within two minutes, my Dr had written up the prescription for HTS, and also for Cipro (Boo!) as I really shouldn't be coughing like this only 4 weeks after IVs.

When I tried the HTS on Wednesday night, I started coughing immediately, which I suppose is a positive thing -it's working fast. Then on Thursday night I used it again. Again I started coughing straight away and I shifted a fair amount of stuff that would have otherwise been festering around in my lungs for god knows how long. So from now on, my evenings look a bit like this:

  • Hypertonic Saline in eFlow neb, takes just over 5 minutes
  • Physio (PEP mask, mixed feelings about that damn thing) takes minimum of 20 minutes
  • Colomycin or TOBI nebs in eFlow (alternate months) takes just over 5 minutes
  • Inhaler x2 (I hate the damn thing. It does nothing!)
And not to mention I'm coughing constantly through this. But the point is, this takes about 30-40 minutes, which is fine b/c all I do on an evening is watch TV. I might as well do something productive whilst I'm sat there. I've shifted so much crap from my lungs and I can breathe so clearly right now, that I want to go straight down to the hospital and demand another go on the PFT spirometry machine, as right now, I feel like I could hit astronomical numbers. At least, astronomical for me. Even after how beat up I feel after all the coughing.

When I went to clinic on Wednesday, I had no idea if I'd get higher or lower numbers for my PFTs. I gained weight, which was good (0.6 kg, although I hoped I'd gained more than that at the rate I've been eating) but when I did my PFTs, even though I'd done twice as much physio that morning and my chest felt much clearer having done that, the best I got was 1.95L (63%) for my FVC and 1.75L (66%) for my FEV1. Whilst that is a mere 1% drop, I'm pissed b/c these numbers are lower after IVs, than the numbers I blew last time, right before I started IVs (I hadn't had IVs for about 3 months I think). Whilst I finished my IVs four weeks ago, I had been hoping for an increase.

Guess you can't have everything.


Kellee said...

Kuddos on the weight gain!! If I could Id chop off my fat and send you all you wanted ;)

I really really swear 7% is the best for getting pft's up. When M does his RIGHT we always see a big jump.

We love the e flow do you like it?

Katey said...

Congrats on the weight gain! Sorry about the PFT fiasco!! I know it's frustrating when you really think they are going to be up and they aren't!! Hopefully this next round of IV antibiotics will do the trick!! Hang in there!!

By the way...I've just come across your blog through someone elses! I look forward to keepin touch and reading your blog!!

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