Skip to main content

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!


Labels:

Comments

  1. shantaJuly 23, 2015 at 12:18 AM

    This comment has been removed by a blog administrator.

    ReplyDelete

Post a Comment

Popular posts from this blog

Today's BIG Appointment

 I discussed last week about my recent struggles & goals. I have been dealing with a lot all at once! Family planning (update on that in 2 weeks), my Grandma's funeral, lower lung function. Through it all I have remained very compliant with my meds! My health is VERY important to me. So this last weekend I took my vest machine, wabi sterilizer system , and packs of ensure to my parent's for the weekend. I wanted to make sure I did everything. While it was a sad occasion, it was still pleasant seeing almost all of the family together again. Actually 27 out of 29 of the cousins made it to the funeral. Grandpa is in the middle of the picture (can you find me?) LOL   On top of my medications I have been doing some dancing & walking, but no jogging or anything. I'm still counting calories on my fitbit (hitting over 3000) a day (& 40 grams of protein, 50 grams of fat at least). I knew I was feeling a bit better than before, but wasn't sure what to expec...
18 comments
Read more

Post- Surgery Appointment

Post Surgery Appt: As you prolly know, I had Laparoscopic Triple Hernia Surgery last Tuesday. Here was a picture of me devouring a piece of bread so I could go home afterward the surgery (4 hours post surgery and 20 mins post waking up from recovery). I was ready to go home! Today I had my post surgery check up. He said everything in the surgery went well and besides the finding the 3rd hernia there were no surprises. He pointed out where the staples/stitches (they are holding the mesh in place) are in me. I have two on each side at the end of the mesh (so 4 on top) and two down farther in my groin. Apparently, I just have one huge piece of mesh that runs the width and length of my whole abdomen/groin area. Bahaha. I am Inspector Gadget after all. He said a few more weeks before I can lift stuff or exercise. Also, he said the area where the staples are will hurt when bending or twisting. However, I only notice really when I twist or turn too fast. Overall, it was a nice appoint...
10 comments
Read more

The Stork Came!

It finally happened!!! The Stork came to our house!! We had 3 kids placed with us (on August 4th) Friday afternoon. Luckily, Andrew was able to take off Friday-Monday (Aug 4th-7th) to be home as we all adjust the first few days. He then worked 8th-12th, but we needed him back home more until the kiddos started school. So took a full second week off, because it was really rough ! Big thanks to Culvers & Phil for allowing us time we needed. I love having kids in the house, but it's a lot of appointments for these kiddos at first. . For privacy reasons, I will never use their names or post pictures of them.  I have made fake names for these posts. When they called I was a little nervous to take 3 kids at once, especially since I have Cystic Fibrosis. We had agreed on only 2 originally. But, the lady explained the 3 of them really needed somewhere. Most foster parent's don't take sibling groups and it is really rare to find one that will take three, so our hearts wanted to ...
8 comments
Read more