L's sister Stef just gave me an update.

Lindsay's new lungs have travelled a long way. The nurse has said they are from out of province so therefore they must be the absolute perfect match. They were waiting just for Linds.

Lins was as always in good spirits, her bubbly, infectious, teasing the nurses, self before she was wheeled down to OR.

Her first incision was around 2:10pm and the nurse said they'll come out and tell Stef and Lindsay's parents and family how it's all going when her shift ends.

So far so good! 

I'm over the moon that Lindsay's lungs are the perfect ones.  7 months of waiting good luck charm!

I forgot to mention this in my first post about dear Linday's now donor family... Someone lost someone they love very very very much today. In my haste and excitement for my friend, it's nice to honour and think about that person's family that is grieving today. Thank you donor family for giving the best gift Lindsay will ever get. Thank you, for allowing our girl to start living life, the way it should be lived. We love you. Thank you.

-Hattie

Lindsay went in to surgery today at 11am for her pretty pink healthy new lungs! Gah! I've been waiting seven months for me to write those words! Exactly seven months today Lindsay has been waiting on the transplant list! Last night at 1:13am she woke up to her phone ringing. She missed it and checked her voicemail. A woman had called her telling her they had a pair of lungs for her. Lindsay first reaction was, of course 'what does one wear for such an event' (being the realist that she is, no cry baby for her!) as she scrambled around her condo packing her things, (very calmly it seemed, i was the one freaking out more then her on the other end of the phone!) waiting for her mom to get back to the city who had gone home for the evening and explicitly told her 'you better not get the call tonight while I'm away ' (harbor in the freezing rain and you have your self, I imagine a distressed mama!)

Lindsay has been working out steadily for the past seven months to get her body in shape for this surgery. I've slowly seen Lindsay go from being the girl who was only on iv's every few years, to every few months, to a totally of 8 months this year she was always on some new form of antibiotic. Her quality of life slowly started to go downhill, but Lindsay being the trooper and evidence needing gal that she is, was reluctant to go to the highest status on the list so she could get out of this limbo world she has been living in, and start actually living. She told me she wanted to go to the one of a kind show this year but would not have the energy to walk around the whole time. I hated reading those words. I wanted so badly to let her know how great life is after transplant. On the phone this evening, as lindsay exclaimed this great news to me, a lot of the time i just heard her wheezing, coughing and the thick mucus crackles that was slowly killing her.

Today, Lindsay is in surgery as you read this. Her heart rate was resting at 80, her oxygen levels at 92 no oxygen needed while resting, and her blood pressure was only a little elevated at 132/84, her normal being 120/80. Those last 7 months have really paid off in training Lindsays body to be in the best shape for this surgery. So even though lindsay's lungs are weak, her body is strong. I'll update you all as I get more news throughout! Keep sending positive thoughts out!

-Hattie (Lindsay cystic sister, 23 years old, post transplant 15months and fellow cystic fibroser)

Not much new to report. . .

Went out for the first time in a long time last night to see Private Lives with a friend-- great show (I'm not one to provide detailed reviews of plays, sorry) though the ending was open to interpretation. What's more is I successfully climbed the 5000 billion stairs to our balcony seats (Royal Alexandra does not have an elevator)-- with my 02 of course, and sweating a couple of buckets after-- but we made it! Although today all my muscles are slowly starting to ache. . . maybe I'm not in as good of shape as I thought?

Today, nature sided with my mood -- we clouded over, let ourselves be dark and released our inner frustrations.

SO tired of the lack of sleep due to treatments.
Tired of IVs.
. . . of CF being my life and definition.
. . . of being asked a million and one questions.
. . . of being sick on special occasions or my birthday.
. . . of temporary wellness.
. . . of living in limbo.
. . . of having barely enough time to take a shower.
. . . of constantly ordering supplies and booking appointments.
. . . of ALWAYS doing physio, that doesn't even seem to work anymore.
. . . of feeling like a 24-year-old trapped in the body of an 90-year-old.
. . . of being infantilized.
. . . of people telling me I don't look or act sick (though it is flattering).
. . . of being bored. 
. . . of exercising three times a week with (mostly) ex-smokers three times my age.
. . . of feeling unplugged.
. . . of being dependent on others.

October 24, 2011

Tuesday's clinic (before my brief admission) brought me a warning of what was to come, one of the first sentences out of the resident's mouth was "What status are you?" to which I responded status one-- not really giving it much thought because "status" has been a flitting topic all summer long, with most agreeing that status 1 was still suitable for me.

Next thing I knew, the resident returned with my doctor and we were discussing my 'status' with a new sense of focus-- no longer flitting. The doctor came up with an interesting analogy to illustrate her point: she said to picture my declining lung function as a slow descent into a pool. As you first ease into a pool you can still breath and the drops don't matter so much. However, when you're chin deep in the water, each drop, each tiny drop in lung function matters, and it takes just a tiny step more to drown you-- you just never know when that tiny step is going to be. Hence, the moral of the story is when you're chin deep in the water, it's really not the time to play chicken. 

July 27

It's been just over three months since I've been listed-- that's the first trimester of listing, gone. Now the real fun begins, right? This is the part where I get (acceptably) fat and walk around with an energized glow about me, excited by the thought of my new arrival. Scratch that, this is the part where fantasy wilts under the shadow of real life. That 'glow' is really a sunburn from your Cipro induced photo-sensitivity, that fat behaviour is getting you nowhere because you can never replace the calories you're burning, and that new arrival is already causing you stress and sleepless nights because you don't know when it's coming or if you'll even know what to do with it when it does. Things like this make me write run-on sentences without a thread of guilt.

June 6, 2011

Limbo has become a little boring as of late, every week is devoted to what seems like treatment-filled days and physio. I've transferred to a physio/rehab place closer to home, so that has helped free up a little bit of time. I was feeling great for two weeks, so I developed the hopeful/cocky notion that I would be able to go on 'hold' on the transplant list (exactly what it sounds like, hitting the pause button), and enjoy the bliss that is an unleashed summer. It was a Utopian idea that is starting to get smaller and smaller in the rear view mirror as my lungs take over the wheel and I'm simply a passenger. Sound depressing? Well, it kind of is... but it's not forever.