Results and Verdicts

…..Had my return session at RBH yesterday and came away feeling quite happy…..

Luckily, there hasn’t been too much change. Now remember, I’m talking bones and lungs here! I hadn’t had a DEXA for a good 2+years, and I must be doing something right as my bones have only decreased by about another 1%. This is a massive phew! for me. I know that Fosamax is very slow to work, or rather that bone density is very slow to build, but maybe after being on the drug for nearly 6 years things are now working positively. And the same for the high doses of Calcium plus Viatmin D that I take daily. Not that my asthma directly affects the bones, we all know it’s the dreaded Pred because of my asthma  that has caused me the osteo whatever side affects.

So that’s one positive result. The other was that I blew a really good (for me) set of lung function tests and therefore we are not going to move my base line and are still going to us my personal best PF as being 360. Last Tuesday I’d blown around 300 off meds for 4 hours and repeated this blow yesterday with my physio who also did a reversibility with me and I increased it to 330 which is about the best blow I have done in yonks! Plus my physio also gave me some good tips for dealing with my SOB in the evenings. Something I really suffer from.

My Consultant said my lungs were the clearest he’d heard them (!) and this being a few short weeks after I’d had another nasty bout of asthma plus infection, mid April. He attributes this to the hypertonic saline and autogenic drainage routine that I am now so very much in the swing of. The extra 20 minutes of lung clearing time twice a day is seemingly being positive.  I got over  that infection in 3 weeks rather than the usual 6. Plus we hit it with the right anti biotic, knowing I culture Staph Aureus.

Whilst we cannot crack the asthma: it’s there, it’s a part of me: maybe we can help the constant gunk and deep seated infection issues. I am certainly far less junky gunky at the moment though. Plus I am washing my nose out a whole lot each day-as routine. Another 10 minutes of dejunking and degunking. Wonder where has my free time gone these days?

Perhaps there is another reason as to why I do get these repeated infections-he isn’t sure, other than the bit of bronchiectasis I have, he thinks maybe my low white cell count (0.9) has something to do with it. Maybe my immune system is being knocked out by the pred? or maybe there is something else? I had a bunch of bloods done yesterday testing for immunoglobulins. I am sure everything will be fine though and it’s just because I’m a teacher 3 days a week and work in a germ factory that I get sick, often!

There is stuff to work at, besides the phyio though. I have to get my Pred back down to my baseline of 10mg and I’m currently reducing slowly and am at 25mg. This is only because it is allergy season and I’m quite twitchy, plus I ache like crazy and feel zapped of all energy-all pred reduction symptoms as far as is normal for me.

I also need to do add a few prophylactic med doses in that I haven’t necessarily always been taking. That idea of “keep what you have got lung wise open as best you can and you wont get infected?!” LOL, Andy! So one more lunchtime Atrovent neb has been added and a midday dose of mucodyne for always and not just when I’m junky/infected. Great!

And they want to see me with my next infection to run bloods and repeat some of the LF tests that will show up how bad I am during an asthma/infection exacerbation.

…..But if I can stay well, my next routine clinic isn’t now until August. That’s good news too!…..

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5 Responses to Results and Verdicts

  1. Asthmagirl says:

    Wow! Very thorough report. Great news about your bones and your baseline! I would think that the constant dose of pred plus the germ factory would play a role in your infection rate. Although I have wondered why I seem to have a higher rate of infection in my sinuses… which often ends up in my lungs. I’m not on the constant pred like you are.
    At any rate, I love hearing all your good news! So happy for you!

  2. Steve says:

    Every time I read your medical reports I always see two distinctive disease entities, possibly three; asthma bronchiectasis and allergies. A wicked combination, but that would explain why you need O2.

    What were the rest of your PFTs like? (Your FEV1,FVC, FEV 25-75% and TLC)

    Most definitely your WBC is low because of the steroids, but might have concurrent viral infections.

    I’m glad the Fosamax is working for you. You know they have once a month injection for osteophorsis now, right? Not sure if it works any better than Fosamax. The best thing to prevent further bone loss, is to walk or swim as much as possible, but you already know that.

    Crossing my fingers that you stay infection free for an extended time frame.

  3. Elisheva says:

    Yay for the good news! Keep it up!

  4. kerri says:

    Great to hear that things are staying stable-ish! I hope they can figure out the infection-y stuff somewhat to get that dealt with if they can.

    Ohhh working in a germ factory, I know it well. Do I need to mail you one of our sanitize-y spray bottles? Unfortunately you cannot spray them near [or at!] children — LOL.

    • Thanks Kerri. Yep-guess who has the only visible huge container of alcohol squirty stuff on her desk-yep me! The number of times I have to touch those school keyboards, yucky hair gelled headphones, percussion beaters-eugh-and all of them riddled with lurgies-double eugh!

      Stay stable! xx

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