Monday, July 28, 2014

Welcome to the 60s, Oh, Oh, Oh, Ohhhhh...

Back to the 60s:


Nope, I'm not in Hairspray again (I was in it in 2012- it was the most amazing theatre experience I've ever had...).  I seriously owe a lot to that cast, been two years (3 productions later) and still no experience can compare. Don't get me wrong all the my theatre productions (and casts) have been amazing, but Hairspray Cast went above and beyond to not just to welcome me, but to help me out. Read the two blogs I wrote all about that show and what they did for me right Here and  Here, both blog entries describe the expereience and different aspects! Or you cand read all about theatre and the roller coaster it has been for me healthwise, by clicking the "theatre" label on the left hand side.

If I'm not performing Hairspray again, then why do I have the song "Welcome to the 60s" in my head then.... Well firstly, it's a fabulous song If you haven't heard it, you must listen :

But the real and even MORE EXCITING reason that the song is in my head is because:

My lung function is at 60% ( back to the 60s)... Let me explain a little more in detail.

I was at 64% lung function about a year ago (but at that time I was in an isolation room in the hospital and getting 2 antibiotics via IV and 1 steriod, plus on my regular antibiotic (via nebulizer) too. So it was no wonder with no outside germs, around the clock care, and extra meds I was in the 60s. But while not in the hospital I struggle to be above 48-53%

But now??? I'm at home, only doing my regular nebs and meds, not doing any antibiotic nebulizers (No Tobi for the last month ish) due to Insurance reasons... So what can account for this increase. My weight has gone down a bit (due to my stomach tube hole leaking/healing very very slowly)... So it can't be thanks to my weight increasing.... What else could help me jump 5% in a month (when I'm lucky to get 2% over a month or two)???.... This is big for me.. Maybe it was a fluke.. Who knows, crazier things have happened (especially to me). BUT...

I'm hoping it was due to the clinical trial I'm on... I'm thinking perhaps I'm getting the trial drug and not placebo. I had the first cyle/administration of the drug 30 days ago exactly.. It's the only new/different thing I can think of to help contribute to this increase in lung function. So fingers crossed that is it, because I still have 4 months left on the trial. So in theory, this may be able to bring it up even more. I dont want my hopes to get too high, but perhaps I can have a little hope. I know I can't expect those results every month, but I'm hoping with my increase in exercise I'm going to be able to contribute (after moving to my new place that has a gym!) that I can get it to the high 60s (like 68 if lucky) by November. Its hasn't been past 64% since I was a kid.  Oh and as far as packing goes...

Haha, well we are taking a lot of french fries with us. Around 30 boxes of fries. Haha, okay not really. We are just using french frie boxes that Andrew can get from work. It just looks funny with 30 some "french fries" boxes lying all around the apartment. We move on Friday, but will be gone for two days. So really we only have today and tomorrow to finish up packing. We still have a ways to go, but it should be done and ready to go by moving day. Which is FRIDAY MORNING! yay!

And Doc got my Tobi approved by the insurance, so they won't be refusing to pay for that anymore. Now to finish getting my new vest to go through. Which I don't think will be as hard! I can't believe all the good news!

Tobi approved, lung function up 5%, moving to better area (for me)- and my new place has a gym, pool, and walking path around a lake right outside my back door. So I can be more active and keep this positive trend going.

So I will keep you all updated. And keep Laura in your thoughts. Monday is the big day with her final tests for evaluation for lung transplant. It doesn't seem fair for me to get such great news, while my best friend struggles to beat this CF ( but hopefully I can share my good fortune- in spirit) and she will receive an acceptance to join the wait list in just a weeks! What a long a journey, so proud of her for continuing to fight.

Fight. Fight.Fight. It's what we do!


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