Friday, June 4, 2010

Miss Know-It-All

Wednesday morning when I woke up 10 minutes before my alarm, restless, and got out of bed.  I couldn't figure out why my body didn't want to sleep anymore.  Aha, Dad discovered it, the oxygen dewar had run out in the night - whoops.  My sats weren't too bad, about 88%, so he switched it over to the other one.  One doesn't last me very long anymore.  I remember when I would go 2 weeks on one fill with only one dewar.  Now it is 2 dewars filled weekly.  My handy little Helios (which I fill from the dewar) keeps me supplied with oxygen while I'm out and about - though it doesn't last nearly as long as it needs to, and is quite heavy and cumbersome.

I decided I'd at least get up and do a vest and my nebs before I went back to sleep.  For some strange reason I never did go back and lay down, instead, leisurely getting myself ready to leave the house to run some errands and go to the doctor later.  It was a very productive appointment, as we were able to discuss my hospital stay, the things which were good and also the areas that needed improvement.  The good thing about being the squeaky (or maybe bossy) wheel when you're in the hospital is that things get done, and if you're lucky, they change.  I was SO lucky to have such willing staff, that they listened to my concerns, met my needs (with very little attitude, for as much as I was dishing out) and were eager to make the changes necessary to better understand and meet the needs of patients in the future.  It may be only a job to some, but to me, it's my life - I can't always wait for the next shift to say something!

At the appointment, I mentioned that since I had been diagnosed with diabetes 12 years ago, I could probably do with a refresher diabetes education course.  They agreed and had the diabetes specialist come talk to me before I left.  She brought with her a handy little booklet that I had never seen before called "Managing Cystic Fibrosis-Related Diabetes"... Apparently they know much more about it now! Great! She held it up and asked if I still had one - I've never even seen it! I all but snatched it away from her.  I was so excited to get my hands on something that would help me better control my diabetes.  For those of you with CFRD, I recommend asking one of your docs about this booklet.  It's put out by the CFF.

I was explaining to a friend of mine yesterday afternoon that I love learning, but then I corrected myself, instead stating that I love knowing things.  As far as I know, there is no way to download information instantly to my brain, so I either have to hear it or read it before I can pass it on.  I recently went on a book binge.  One of the 9 books I purchased is called Sick Girl Speaks!  I have only made it about 35 pages so far, but I wish I were finished with it so I could know everything inside.  It's not that reading isn't a pleasurable way to spend my idle time (of which I have much), it's just that there's simply not enough time to read everything I want to know.  (I'm not blessed with the speed-reading gene) And the more I read, the more I realize I don't know.  And what you don't know can definitely hurt you.

Almost forgot the PFT update: FEV1 31%, FVC 50%... I'll take it! :)


BreathinSteven said...

Hey Girlie!!!

Read your post and your little bio -- it really is a long, scary wait... But please know that it is so very worthwhile, Justine...

Like you -- I have cystic fibrosis -- like you, I waited quite a while myself... You're so very right about exercise being so important -- I don't know if I'd call it "exercise" because sometimes it doesn't seem like we're doing a lot -- but keeping active and moving is so important... And somehow maintaining your weight too. They told me that I needed to gain 18 pounds when I was listed -- I was at the borderline of where they would transplant me, but they said that every few pounds I gained would be "insurance", and would 0week... I found them to be pretty spot-on... The other mantra at our center was, "if you walk in for your transplant, you'll walk out..." That seemed spot-on too...

I got my beautiful, new lungs just over 10 years ago -- and Justine, this still blows my freakin' mind every freakin' day... It's almost indescribible -- I never, ever imagined that it could feel this easy, and this good to breathe "normally"... Like you -- I'd never really had the frame of reference... I've been lucky enough to learn about the beautiful girl whose lungs I breathe with -- and I've met her family and friends... I have a little about her at

I hope you get your beautiful gift soon... I hope your journey through and after transplant is as amazing as mine has been... If I can ever help, or answer any questions -- don't hesitate to contact me... My email address is at the bottom of my little website...

You hang in there, buckaroo... I can't wait to hear that you're back up on a horse again...

Love, Steve

Steve Ferkau
Chicago, IL

Josh said...

Hi Justine - Love your blog and your positive, honest spirit. Sending you lots of energy from a fellow CFer.

Peaceful Things,

Josh from Joshland.