Lindsay is now on the ward and one step closer to going home. She is so excited to have new lungs for the holidays!
1 year ago
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.
Lindsay is in step down now and making her self quite cosy. She has 3 personal massage therapists
I think I owe my dad about a million and one feet massages after I got my transplant, and I can see Lindsay is going to be in the same debt of gratitude as well. Lindsay's legs are cramping up from all the water retention and laying around in bed. She is up to TWO walks a day. Walk walk walk walk that's the only way you get outta there!
She's eating the ward out of popsicles, and is off the liquid diet. Food never tasted so good to her. Bagel with cream cheese. Lindsay's electrolytes still continue to be wonky the last couple of days....but I think that's probably very common from the stress of the surgery and someone else's lungs in you...mine were out of whack for a whole year. Hopefully they won't have to give her a blood transfusion. She is loving the lasiks still as it makes her chest feel a TON better helping to drain the extra fluid rattling around and filling up her new lungs. She is starting to experience a bit more pain, and is kind of nervous about giving up her self dosing morphine pump....the only good thing I keep telling Lindsay about giving up that pump, that crutch...it means she can get moved down to the ward....and then, it's home time, just a hop and a skip, a run and a breath away.
Lindsay is very, very lucky to have such a supportive and amazing family by her side each day, She is extremely lucky to have people flighting with her every hour of the day, every step of the way. Thank you Lindsay's family for taking such good care of her.
Lindsay is doing great. Her chest is a little congested, but they have her on lasiks to drain the fluid from her lungs.
She was wheeled to step down unit today in a wheelchair! (I was wheeled in my bed, so you know lindsay is doing GREAT)
All her electrolytes are good. Magnesium, potassium and phosphate doing good.
She is enjoying popsicles and texting up a storm to me, I can barely keep up!
Her mom and sister were giving Lindsay's massages today since her legs are starting to cramp up a bit. Lucky Linds has a sister who's an RMT! Her dad has been calling Linds sister and mom (Lady Lindsay servants) Thank you goodness for you two! Thank you for taking such good care of our lindsay so she can bust outta there and start enjoying those new lungs!
Positive thoughts are working! Go L GO
-Hattie
Lindsay is still in ICU. This new doctor is desensitizing her correctly to move down to step down unit. It's a really specific process which is why it's taking a little longer.
Lindsay has finally learned how to cough! She feels a little congested no doubt from all the fluid which is inevitably around her new lungs. Her right lung is draining a lot she said (yes lindsay is now texting me, happy days!) Her vision is a little blurry, but again just all a balancing game of the meds.
She killed her walk today! aced it! two laps around the place. Her text messages sometimes read a little funny and she often says she's stoned on drugs, and that she doesn't see the point of self administering morphine during the night, when she is suppose to be sleeping to keep on top of the pain. She has cat naps throughout the night, and seems to be in good spirits. txting me jokes like "yoooooooooo!".
She was on 3 litres of oxygen yesterday while walking, and now is only on 1 litre. The new lungs are starting to kick in and inflate!
Keep sending Lindsay and her family positive thoughts. Her journey is not over yet!
GO Lindsay we love you!
-Hattie
Change of plans.
Lindsay is now fever free since 4pm! Linds is staying in ICU one more night, to get desensitized to some antibiotics. She unfortunately is allergic to A LOT of drugs. She always has to have her body tricked in to taking the IV antibiotics. So as a precaution she stays in ICU to be watched carefully incase she has a reaction. Tricky stuff, this desensitization. She is staying in ICU one more night, step down tomorrow. Personally, I begged them to not let me leave ICU...in ICU you get one nurse all to yourself! I was not a fan of the sharing nurses, guess it goes back to being impatient? So, Lindsay dear girl, enjoy your nurse solely to yourself tonight, tomorrow, you will have to share. Sleep tight!
you're gonna love this one. Lindsay's first walk with new lungs!
She did one lap, with only a couple stops.
Steph says she was also asking for her hair brush, A girl after my own heart, always the fashionista.
Go Lindsayyyyyy!
SO much love and positive vibes are coming at you from all angles over here.
You got the twitter and the facebook world all in a frenzy, it even kicked me out from overload this morning!
The drugs are starting to kick in now, and Lindsay feels really quite dopey and loopey.
After her walk, Lindsay is sitting up in the chair. Good to drain all the extra liquid in to her chest tubes, trying to take deep breaths and get those lungs working and inflated!
The drugs are making her very tired, so she's sleeping in the chair. Those are some powerful drugs they're pumpin' her full of, so she doesn't feel the pain from her incision site across her chest.
.... it is with a little smile on my face that I write this next thing, Lindsay has forgotten how to cough. When something becomes as natural as breathing (no pun intended ha) like coughing was for Lindsay the last 25 years "forgetting how to cough seems unfathomable"...for a girl who's been coughing up a lung (i'm full of puns today) for 25 years....your memory sure can go out the window when you don't NEED to cough anymore. It's not a reflex anymore. She has to re learn it. Just like yawning, and breathing the correct way, (cf'ers don't know how to breathe properly, due to our low lung function) Lindsay is starting from scratch. She's got to learn to do things and learn to be in this body with the new lungs she has. It's a long, steady process, but it starts...with a sip of juice.
Lindsay had her first sip of juice at 11:30am and cannot stop talking about it all day. Picture being in the desert for 2 days, and being hit in the chest by a land rover truck....then picture taking a sip of water. That's about how lindsay is feeling after her sip of juice. A little slice of bliss. Enjoy bliss Lindsay...it just gets better from here on out. Promise.
-Hattie
She did one lap, with only a couple stops.
Steph says she was also asking for her hair brush, A girl after my own heart, always the fashionista.
Go Lindsayyyyyy!
SO much love and positive vibes are coming at you from all angles over here.
You got the twitter and the facebook world all in a frenzy, it even kicked me out from overload this morning!
The drugs are starting to kick in now, and Lindsay feels really quite dopey and loopey.
After her walk, Lindsay is sitting up in the chair. Good to drain all the extra liquid in to her chest tubes, trying to take deep breaths and get those lungs working and inflated!
The drugs are making her very tired, so she's sleeping in the chair. Those are some powerful drugs they're pumpin' her full of, so she doesn't feel the pain from her incision site across her chest.
.... it is with a little smile on my face that I write this next thing, Lindsay has forgotten how to cough. When something becomes as natural as breathing (no pun intended ha) like coughing was for Lindsay the last 25 years "forgetting how to cough seems unfathomable"...for a girl who's been coughing up a lung (i'm full of puns today) for 25 years....your memory sure can go out the window when you don't NEED to cough anymore. It's not a reflex anymore. She has to re learn it. Just like yawning, and breathing the correct way, (cf'ers don't know how to breathe properly, due to our low lung function) Lindsay is starting from scratch. She's got to learn to do things and learn to be in this body with the new lungs she has. It's a long, steady process, but it starts...with a sip of juice.
Lindsay had her first sip of juice at 11:30am and cannot stop talking about it all day. Picture being in the desert for 2 days, and being hit in the chest by a land rover truck....then picture taking a sip of water. That's about how lindsay is feeling after her sip of juice. A little slice of bliss. Enjoy bliss Lindsay...it just gets better from here on out. Promise.
-Hattie
...with a little help from her new friends (two healthy pink new lungs!)
Lindsay is off the respirator and breathing on her very own.
CAN YOU BELIEVE IT!
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| please note those AMAZING pink beautiful cheeks |
oh linds wait till you can chew on those lovely ice cube chunks they give you...water in frozen form will never have tasted so good!
-Hattie
sleeping beauty decided it was time to wake up!
Lindsay is awake and writing notes. She's even being called a super star by the nurses. But we already knew that didn't we? She has a clip board where she is feverishly writing notes away, asking where her lungs came from? which province? telling her family that she had a long time to talk with the nurses before surgery. She is also OVER the moon that she doesn't have a nose tube (lucky duck! it is definitely weird having that tube up your nose, speaking from experience)
Today Lindsay will probably come off the respirator. Yes you can get up out of your work chair and do a happy dance, this calls for it.
Today is the first day of Lindsay's new life.
I can't wait to hear her new voice on the phone. I can't wait to hear her voice without the crackles, without the mucus plugs, without the coughs, without the struggles of breath. I can't wait to hear her laugh and laugh and laugh without having to stop from a coughing fit. I can't wait to have the spunky, blonde haired, girl back full of life, energy and breathing!
I can't wait to hear about the first time she goes swimming. The first time she runs down the street and doesn't feel winded. The first time she climbs stairs and realizes..."woah people can climb stairs and not get headaches and not feel as if they ran a marathon? awesome." I can't wait for her to go skiing at her chalet and go all day long, not just a couple hills, because she gets too tired and out of breath, but the WHOLE day. I can't wait for my friend to stop living in limbo and start living life, the way it was suppose to be lived. I can't wait for Lindsay's old lungs to stop holding her back from doing everything she dreamed of.
I can't wait for all these things mainly because Lindsay cannot even imagine what it's like yet. She has no idea how beautiful the world is going to get. As easy as it is for someone reading this, to know how easy breathing is, for someone with CF, when she struggles with breath every day, struggles getting up the street car steps to go home at night, when she totes around an oxygen container, it's hard to imagine how easy breathing is, how beautiful life is about to get. How the simple act of breathing gives you energy, and allows you to have the world at your finger tips.
The world couldn't have asked or gotten a better candidate and patient to appreciate and love the gift she has been given. Lindsay loves to laugh and she whole heartily loves life.
This really is the greatest gift.
Christmas came early this year.
Thank you donor family for giving us all the best christmas gift. We love our lindsay.
And for a special treat, here are some photos of linds. They made me very very happy as I can feel the energy and good vibes radiating off of our girl, but they are graphic, so if your squeamish don't scroll down.
Please keep sending out positive thoughts. Even though Lindsay made it through the surgery with flying colours, (she rocks) it's the recovery that is often difficult. Positive thoughts, vibes and love is what our girl needs right now, so keep 'em coming. Our jobs aren't over yet.
Happy happy happy happy wednesday morning everyone.
Today is a good day. a fine day. a GREAT day.
-Hattie
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| she's probably thinking "thumbs up because I can breathe!" |
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| the journalist, furiously writing away on her clip board, always such the professional ;) |
the doctors and surgeons said when they took out her old lungs out, they were badly scarred, diseased and incredibly infected especially her left lung. Dr. P said she probably had only a year left with these lungs. Thank you donor for being the perfect match for our linds! Thank you, thank you, thank you!
-Hattie
Lindsay is all finished getting her new lungs. So far no complications. She didn't need any blood transfusions. The lungs are THE perfect match for her. She is now in ICU.
There was a 20% chance of getting her lungs (so they were looking out for a match for her, hence why the lungs came out of province probably) that matched her unique antibodies and she got it.
Hoping she gets off the breathing tube tomorrow once she wakes up. GAH oh lindsay lindsay lindsay....you did great. I am so ecstatic all your antibodies are matching up with your lungs.
She was so worried about her new lungs rejecting as soon as they went in to her, so thank goodness the antibodies all match!
Sleep well sleeping beauty. Tomorrow starts the journey!
-Hattie
It is with great pleasure that I can write Lindsay is kicking bum!
She is doing SO awesome. Those 7 months of hard work and gruelling exercise have made her heart in tip top shape.
They are on to the second lung. The left new lung is now being put in Lindsay.
So far she has needed no blood transfusions and no heart lung mechanism to keep her stable. She is doing this all in her own (plus her wonderful surgical team) and kicking some serious CF butt.
-Hattie
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)
I'm a too little tired to give the most detailed account of today, partly due to the fact that my clinic went until 7 pm. I was at St. Mikes from 12:30 - 7 pm, so yes, a VERY long clinic!
The details . . .
I kind of got the impression today was going to be a long one when it took me 15 minutes to get an elevator... the first elevator car arrived packed full of people and a stretcher. The paramedic holding onto the railing of the stretcher gave me a sympathetic "sorry" and I tried not to look too disappointed as the doors teasingly closed again. A little peek-a-boo session of sorts. I waited a few more minutes and the second car came, this one only had two occupants, a man in a wheelchair and I assume his wife pushing him. "Get out the way please" the pushy woman announced, and I stepped back to let them pass, only to have the elevator doors shut on my face and swiftly leave. Apparently being the broken girl with oxygen still doesn't qualify for someone to hold the door for you. "Motherfucker" I said out loud as I pressed the button again, with a little more force than necessary. The only satisfaction I got from this moment is when I heard the couple looking for their exit and I realized they were going the wrong way and got off on the wrong floor... too bad they pissed off their would-be tour guide. Anywho, after 15 minutes and running into an RT, who kindly gave me his extra poppy (random exchange, but I noted that I can't seem to find them anywhere), I finally made it to clinic.
