They are currently searching the halls of the transplant ward for a bed for Lindsay!! She has been texting me up a storm, sometimes they are a little off (she is super stoned today from the pain meds). She is having a lot of pain today, so they've upt those happy pills. She falls asleep mid text, mid meal, sitting up, reading a page, during physio...but she says breathing is getting easier, and finally is getting to be where she feels like she has new lungs.

She saw her surgeon today...a man of few words she says and here's the kicker...Lindsay is now walking without oxygen! That is the best feeling on this planet. No oxygen tube twisting and twirling and snaking around her legs or others as she walks. No one carting around the canister of oxygen or the incredible green hulk oxygen canister, as Lindsay called it. No one carting the tank, making sure to slow down with Lindsay as she walks. No more hearing the whoosh clunk, whoosh, clunk as she breathes in and out, of the tube through her nose.  Never again Linds. Adios oxygen. Hello beautiful natural O2. Hello new life...won't this be glorious.

Backtracking: The following was written March 18th. WBC was 20.

These past three days have been hard. During the day I need my mom here all the time because the act of just sitting here leaves me breathless, my chest is constantly heaving with effort and things that I took advantage of a week ago (like reaching for my pills an arms-length away or walking to the washoom) have all become such effort. .82 L days, I miss you... these days are humbling and scary--how does one crash so fast? Cursed with a wicked imagination, a reel of possibilities play through my mind, and none of the scenarios are rosey. Suddenly I find myself constantly talking about transplant--not wanting to "miss the boat", since that possibility is very real.

Yesterday I went for my first walk in two days, it was nice to finally get out of the confines of this room, however it wasn't nice to nurse my hypoxic headache after. I now need to use 3 L of oxygen for walking (or anytime I get out of bed basically), 6 L for exercise, and .5 for sleeping and when I'm sitting and feeling in distress--this is a drastic change from last week when my sats were 96-97 and  I required no oxygen. It's baffling and disturbing how quickly CF can rear it's ugly head and knock you down for the count.

Not too much to report, at this point it is very much a 'wait and see' period. Wait and see if these drugs work, my lung function improves and my oxygen dependency decreases. And hope that all of the above does not take too long, because I have plans to get back to!

So far my appetite is slowly creeping back into existence. I was able to go out for lunch today (at a nearby 50's diner--very cute!) and actually FINISH a meal. Go team. Yesterday I told the RT (Respiratory Therapist) about the horrible headaches I have been getting from walking and she re-evaluated my oxygen. Well folks, by the time I walked down one small stretch of the hallway it was apparent that, yet again, I need oxygen for walking. The "Hulk" which is my nickname for the giant 02 tank, is now standing guard beside my fridge waiting to assist me. I'm grateful that it helps, but it really does not match my outfits at all and it weighs almost as much as I do. So I'm not too pleased about the return of 02--you can call it vanity or call it not wanting to scream out "Hi world, I have lung disease". But on the upside, I do not need it at rest. My sats are at exactly 90 (below that, they put you on 02), and I'm not feeling short of breath.

I've been keeping really busy with physio. Currently I'm doing it four times a day to help move things along. I do my PEP mask (a mask that puts pressure on your lungs as you breath into it) three times a day, and once a day my physiotherapist comes in. She's really enthusiastic and always gets me motivated again!

Right now it feels like everything is just stuck. In fact--this may be too much information, but I just had a legitimate 10 minute conversation with my nurse about phlegm, so all lines have been blurred--my phlegm is so thick that I just gave a sputum sample and it actually just stuck to the bottom of the cup. I turned it over on all sides out of curiosity and it just would not budge, I even tried tapping against the cup and it still would not budge, and this was after hypertonic saline (which is supposed to thin out the mucus and make it easier to cough up). Well, at least I know what I am up against!

My mom brought me some tulips today to brighten up my room, and I think they really do the trick! She also bought another bouquet for H, who is just down the hall and had a rough morning. My (or, rather our) nurse, Rachael delivered them for us, since CF patients and their visitors cannot have any contact (we can spread nasty bugs to each other).

P.S. Update on flat screen TV: Well, turns out they just re-installed the old, ugly one! My situation quickly turned from jackpot to jipped. In a cruel twist of fate, the two people across from me had flat screens installed...please.

**OK so today I tried to do physio three times a day instead of four... totally suffered...bad idea!!**

I have not been skiing since last year before I went on my 14-week stint of IVs (around this time). My lung function was hanging around 35% so I needed a little tune-up (which ended up being a big tune-up). However, when I was admitted the doctors were surprised to learn that just days earlier I had been skiing at Blue Mountain (not actually a mountain as the title suggests). I was able to do 8 runs.

Flash-forward to this year and my lung function is about the same, but I have a new addition to my ski equipment: oxygen. Luckily, I only require 3L for working out which means I can use a portable concentrator (or POC), which is NOT compressed air. I found the perfect little backpack to carry it around in and a nice little ‘disguise’ to cover the tubing (though I didn’t end up using it much, because it was not as comfortable. Comfort first!).

It weighs about 5 lbs, which is slightly challenging for a petite gal’ like myself, but I managed quite well. As I glided down my first run I had to remind myself to breath with my nose and not my mouth (so I could get the benefits of the 02). Easier than I thought. My lungs were at the top of their game: no coughing spasms, no overly fast racing heart, no white spots, no headaches, no exhaustion. In fact, my legs gave out (literally) before my lungs did.

As I finished my sixth run of the day, I felt my legs begin to collapse beneath me. So down I went—as gracefully as one could—and I sat there trying to figure out how to get up since:
1- I rarely fall
2- The added 5 lbs of the backpack made me feel like a fallen turtle
3- My legs were finished and could only respond by trembling in objection

So I struggled for a couple of minutes, desperately hoping I wouldn’t attract attention, then popped off my skis and stood up quickly before putting them back on again. There is always an easier method.

I’m so glad I decided to try skiing with oxygen, it made it so much more enjoyable and now I have a new record to beat. My legs now have to catch up with my lungs.