tired of waiting on the side of the road, ready to start driving!

So...since last Tuesdays fiasco...what is with Tuesdays!? Seems to be the day, my body likes to wreak havoc!

I lost 5lbs in 4 hours of water retention weight from that lasix water medication they gave me. (peeing like crazy) I can see my ankle bones, and the cracks between my toes for the first time in a year! I had so much fluid retention from prednisone. My face swelling has gone down, my stomach, my boobs, my ankles, my legs, my toes! EVERYTHING. No wonder I was having a more difficult time breathing, there was probably water swelling in my lungs as well creating pressure, and I was carrying around an extra 5-6 lbs ALL the time.
I can barely carry a purse anymore (you know you need some new lungs, when you switch out your ever so cute, vintage long wallet, for a small change pouch, because the other wallet is just too heavy to carry anymore...that will be the day when I can wear whatever purse I want, and have whatever size of wallet I want carrying around) without getting out of breath, 5 extra pounds of water carrying around, bah...no thanks.

Anyways so I just have to spit everything out so I can look back at this blog come post tx.
I started my physio therapy/exercising on Wednesday. I think it was a bit too easy,(although I was taking it slow, since Tuesday was such a bad day) so I upped it today at exercising, pushed myself a little harder, which is good. They say there is no point coming, unless you are going to work it. They physiotherapists at TGH are all really nice. We 'work out' and build our muscles for an hour and a half. By the end of today I was pretty pooped.

This week I got my pager. I keep looking at it every three seconds, willing it to go off...which is probably going to get old REAL fast.
My pager also stopped working today...are you joking me? no wonder my blood pressure is through the roof...I'm petrified I will miss 'the call'! haha I called my pre tx coordinator, and so for now she has it down in the system to call my cell phone, and house number until I receive my new pager, for when I go home. Thank zeus I decided to check to make sure the pager was working today. It only worked once out of the three times I tested it. I had just GOTTEN all the features worked out on this pager, and even had a nice little tune that it played when it got paged haha.

This is such a roller coaster ride, this last stage of CF world and me. Last weekend sitting at my kitchen table, I told my parents about a girl who told me before her tx, one and a half years ago (she is now almost 1 year post tx, breathing dandy!!) "I can't even roll over on the couch or bed anymore without getting out of breath". I remember thinking at the time, 'oh gosh, I hope that never happens to me' (I couldn't even really picture being that winded, just rolling over would take your breath away...make you purse your lips and gulp in air...scary) Last weekend sitting at the table with my parents I said to them 'how can your body hate you so much, and turn on you so much, where I am now winded rolling over in bed'..and then I remember talking to the other girl a year and a half ago...and now it had now happened to me.

Thankfully this week that has cleared up, and I'm breathing easier, no longer needing oxygen all the time...Let's hope the good days start to out number the bad ones...

Okay what else, what else, what else, OH I am getting discharged this weekend! Home time. Hallelujah. I am feeling strong enough, where I think I will be able to manage my home IV's at home now, with the help of nurse mom and nurse dad. I hope this "stable" trend continues, until my new lungs come...no falling off a cliff health wise please.

I have been listed for 9 days....It is now June...come on June...I feel replacement body parts, or as a friend said "waiting for my spare tires." I'm just waiting on the side of the road for someone to come along and give me some spare tires...come on June baby, I'm tired of waiting on the side of the road, I want to start driving!