Wednesday, April 15, 2009

Study visit #5

Well I went up again today. Only a few points to 1.55L and 50%. Still awesome!!!!!

I officially have half my lungs working hahahahaha at least for now :)

I was telling the study coordinator I would liken the study med to getting IVs. I don't feel tip top but my numbers are all up and I am coughing less. Now if I could just stop getting SOB with walking/moving/ steps my friends.

That is the best way I can describe how I feel it is working. After a round of IVs we (usually) feel a lot better and can see an improvement. I am just hoping, that unlike IVs, I stay where I am after the treatment stops. That really is the only downer I see to this. Once the study is over in 2 weeks, no more miracle drug for me.

But at least I have a foot in the door for improvement ;)

And my blood pressure was FINALLY normal for me at 100/60, even if still moderately low.


  1. I LOVE THAT FEELING. It's something that's so hard to describe but we would pay anything for....

    Glad you're up to 50%. Very cool! :0

  2. Yeah don't you hate when the studies that work so well end?

  3. My blood pressure runs low too.

    So glad you are feeling great.

  4. Amy,
    That is so amazing! What a terrific med! I really hope it lasts for a while after it is done also! Keep us posted, oh, and thanks for being a guinea pig for everyone with CF! :)

  5. Such good news Amy! I really hope it continues.


  6. SO great! I wish I could do it! my center is doing that study but since I am already on Aztreonam I can't do both :( Oh well hopefully it comes out soon!

    My blood pressure is always so low too...

  7. is that your fev1? that's awesome! congrats!! i did the inhaled levaquin study but i dont think i got the real stuff. my numbers stayed the same. didnt go up nor down. i'm going on the inhaled cipro next month so lets see how that one goes. congrats again!!!