one day at a time . . .


I went to the dr today, my 37th day of IVs. I was sure I would have great PFTs – like 47% or 48%. The past 2 days I finally felt better – not winded anymore and not junky.

So, I blew a 44% – but the blowing sound was awesome – no junky or wheezie sounds – just clear air! So why only a 44% – I don’t know – but what matters to me right now is that I FEEL better. The PFT roller coaster can be very frustrating, especially when it doesn’t go in the direction I’d like it to.

Dr said my right upper lobe was FINALLY clear.

The decision is to infuse my last 2 bottles of IVs, which I am doing right now – then I can pull the peripheral out!


I am down to 7.5 mgs or prednisone and will keep it there for about a week then touch base with my dr again and hopefully drop to 5mgs.

I had  my last xolair injection today. Not sure if I’ve mentioned this before. She tried it as a long shot – but after 6 doses, it didn’t really seem to do anything.

So for now – I will enjoy my IV freedom and hope for 3-6 more months of this freedom!

Comments on: "IVs… PFT Rollercoaster…" (7)

  1. thanks for the update. Good news! Nothing like going off of IVs. My doc once told me that any difference under 10 percent on PFTs is statistically irrelevant. An hour later you might blow a 47 or 48 percent.

    I’m rooting for six months for you.

    • I know – they do say that – but I’m usually very consistent – so after 4 blows – all with the same exact result – I kinda feel it was accurate. But – I’m happy – I’ll be free soon – so that’s what matters today!

  2. Funny, I was in her office too today, only just stopping by on my way to a tx seminar to grab some scripts from Ida. Still, too bad we missed each other!

    Congrats on getting off the IVs and clearing that pesky right lobe. I just started on merrem and am doing inhaled Azli/cayston and oral cipro to round everything out. And 60 mgs of pred — ugh. But here’s hoping you get to stay IV free for a long time! I’ve done the 30+ days of IVs too, and it’s never fun.

    • WOW – what a coincidence!!!
      UGH – 60 mgs of prednisone is right! I hope you wean down quickly!
      Thanks for the good wishes – right back atcha!

  3. You’re lucky your PFTs are like that. Mine usually don’t match all numbers. Usually FEV1 is close, but the other numbers are all over the place. The tech always looks confused picking the one for the doctor. Funny to watch. Seem like my first blow is usually my best and they go down from there.

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