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| Merry Christmas from my lungs to yours. |
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| Excuse the lazy eye, the photo shoot was a bit tiring! |
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| Pictured: 26 of 53 staples removed. The remainder were removed before I left the hospital. Lower down are my 4 chest tube incisions, the sutures were removed last week. |
So what's this? I bust out of the confines of the hospital and stop updating? Pretty much, yeah. As of Wednesday, December 14th I am a free woman! Free to sleep in my own bed, free to roam without an IV pole (for the first time in many, many months) and free to work these new lungs.
I must say, it's weird being home and not having to constantly adhere to a physio schedule (I still do nebs for the next three months, mind you). But already I notice I have so much free time. Of course, I'm still healing from major surgery and require lots of rest, but I know that time is there to spare. What a nice holiday gift!
Most of this week has consisted of my returning to the hospital for exercise (with my green card) and relaxing around the apartment. Since it's busy holiday season I'm avoiding all public places and probably will for the next three months when my immune system is lowest.
The best update of all? On Monday I had my very first PFT (lung function test) test and I blew 57% (1.63 L), a number that I haven't seen since I was a child! To give you an idea of where I was before transplant, my PFTs were .61 L, which is 21%. It's mind-boggling that I can now do a lung function test without hacking and seeing stars after. I also got to have a look of my recent chest xray compared to my before transplant xray and there's so much improvement in my back already (perhaps why I'm standing up straighter?) Also, a lot of the gas trapping and hyperinflation I had from my old lungs has virtually disappeared. Amazing how quick that happens!
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| Smiley is happy to be leaving! |
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| Making a run for it |
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| Mom carrying my bags home since I cannot lift anything heavier than 10 lbs for 3 months |
I have been feeling good great since my blood transfusion on Friday-- now I've really been able to work these new lungs! In fact, I felt SO good today that I was able to go home for a few hours on a pass (and home is literally up the street for me, so it was completely feasible). It was nice to sit on my own couch, lay in my own bed and rummage through my own fridge-- it's really all the small comforts you miss, and quickly become luxuries when you've been separated from them.
The only thing missing was my foster dog Penny, who has been staying at Chateau McCarthy with my cousins and being spoiled to death. I honestly don't think she even misses us... she has her green ball, and that's all a determined little Jack Russell could really ask for?
A THANK YOU to all the blood donors out there too! I went to exercise yesterday and got through it, but it was very exhausting. I had to stop on the bike every 2 minutes because I was SO dizzy. I put this down to 'I'm only two weeks out of surgery' but my physiotherapist, knowing how driven I am, wrote a note in my chart and insisted I tell the doctors.
Turns out my hemoglobin has been in the 70-71 range for a few days and they were hoping it would climb up by itself (and with iron supplements), however with my symptoms they decided it was best I go ahead with a blood transfusion. I must admit, I was a little icked out by the thought of it at first, and was prepared to say 'nah, I'm good, I'll just sleep until my body makes enough red blood cells again'. But when the surgeon said it would make my lungs happier and speed up the healing process I couldn't refuse! I will do anything to keep these beautiful pink lungs happy!
Starting back to rehab tomorrow morning... duh duh duh!
I really hope it goes well, as I seem to be an expert in suffocating myself. Like I mentioned earlier, my brain still thinks it working with diseased lungs and that, couple with the tightness of the incision, make the act of breathing hard. My friend M described it well earlier when she said it's like jumping right on the bike without any training wheels first--so there's bound to be some tumbles! I guess I can forgive myself for not adjusting to my lovely new partnership so very quickly.
Meanwhile, I went for two walks today, had plenty of naps, and did some light weight lifting.
In a way I can't wait to show off my new 'look' tomorrow...
My lips are pink.
My skin has COLOUR.
My hands seem softer and light.
And my voice is so clear!
Today I woke up with chills and sweats again (unpleasant) but my body seemed to fight the fever off by itself--telling me this new antibiotic, Vancomycin, is getting the job done. I am now medically stable enough to go home, exactly two weeks after my transplant (amazing what the body can do, eh?) but will be staying here to finish my course(s) of antibiotics since home care will not work with 3 antibiotics (Meropenum, Ceftazidime, and Vancomycin). I'm basically connected to this pole all the time, so until that goes, I stay here!
I started some light leg and arm weights today and will be heading back to the treadmill room on Friday. I can't wait to see what these babies are capable of! However, since I still have an infection, I don't expect I'll see their full potential for a while. Also, since my brain still thinks I have CF lungs, I have to constantly remind myself to take deeper breaths-- it doesn't come as 'naturally' as one would assume.
Tomorrow I may also have every other staple removed from my incision sight... I wonder how many there are?
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| Let's fly out of here! |
Today we got to the bottom of things, literally. I had my very first Bronch around 12 pm that lasted about an hour (or so my mom says). The procedure was not nearly as scary as I thought it was going to be-- in fact, the most inconvenient part of the whole thing was fasting since midnight. Hungry Lindsay doesn't fair too well in public!
I was taken back down to the second floor where my transplant surgery took place almost two weeks ago. Then I was parked in the day unit, explained the procedure and transferred to the "freezing room". The room is ironically warm, but it's purpose is to deliver you all things 'freezy'. I gargled some solution to freeze the back of my throat (it supposedly it horrible, but I guess my tastebuds are still asleep because it wasn't all that bad), then I nebulized more freeze solution. After that, I said farewell to my Mom and was wheeled off to the procedure room.
Our blog updater, H, is now off in sunny Barbados (lucky gal)! So who more fitting than to fill her place than ME. That's right, right from the horse's mouth (I've never understood that saying).
I was 'scheduled' to go home today, but over the weekend I had fevers and my exercise tolerance dwindled so I knew something was brewing. I'm already on two antibiotics, Ceftazidime and Meropenum, but today when they walked in my room and saw that I was shivering and sweating at the same time they added a potent third: Vancomycin.
So far this afternoon I'm feeling some improvement, I was able to walk around without the walker and at a decent pace, and last for longer. Fingers crossed this does the trick!
Truth be told I did not at all feel comfortable going home with a raging infection, so hopefully a few more days will do me good. I will likely go home on IVs for a bit to keep the infection at bay. FYI my donor lungs were perfect and came without infection, unfortunately my diseased CF lungs left infection in their airways which is causing all this residual trouble.
Otherwise, I have my very first bronchoscopy scheduled for tomorrow to find out exactly what I'm growing, clear out some secretions, and check for any signs of rejection. May as well add this one to the 'fingers crossed it goes well' list.
and she might be going home monday!
Lindsay got her chest tubes out today. No more octopus arms hanging off of her. FREEDOM!
Here she is out for a walk with her sister and mom...sans IV pole....she is MOTORING.
She is up to 4 walks a day. Home time is soon soon soon soon! If Lindsay gets out of the hospital on monday it will be less then 2 weeks since she went in for her life saving surgery. As Linds pointed out...that's less time then she would spend for a CF tune up in the hospital, pre transplant. Modern medicine...astounding eh? Keep workin' those lungs Lindsay.
That's amazing you've already got the chest tubes out and 4 walks a day. Go go go go go go!
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 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!
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!
...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 |
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)
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.
May 30th, 2011
Most of you know the drill by now--lack of updates is good news (usually). I've still been keeping busy with exercise three times a week, and then clinic appointments at St. Mikes in between--it's absolutely riveting stuff.
Clinic on Tuesday was nothing overly remarkable, my PFTs stayed put at 25% (.72 L), weight dropped a tad (which isn't surprising since my appetite is nowhere to be found, yet again), and I decided to have my PICC line removed (doesn't really go with the summer attire). Since there hasn't been much change, I graduated to monthly clinic appointments and hurried on home after spending 11 hours in hospitals for the day (TGH exercise in the morning and St. Mikes in the afternoon). Speaking of TGH, I did my 6-minute walk on Tuesday morning (which I had successfully dodged for about two weeks) and my distance improved since my last test. I was able to cover 502 m in 6-minutes on 3 L of oxygen (though my oxygen did drop to 84% during the test, but no one seemed overly alarmed). Great news, except that I felt like puking the rest of the day (graphic) and required multiple pitstops as I walked from TGH to St. Mikes... but hey, if you don't feel like collapsing and grasping for the straws of life after a 6-minute walk, you probably didn't try hard enough. That's my motto anyway.
May 14, 2011
Next week will bring me to two milestones: I will have been out of the hospital for a month and officially listed for a month!
I haven't really had much energy to blog since I've started my pre-transplant exercise program at Toronto General. I'm required to go to the hospital three times a week to condition my body for such a huge, dramatic, surgery and it's no walk in the park: 40 minutes of cardio (20 minutes on the bicycle and 20 minutes on the treadmill), weightlifting, and stretching. I actually enjoy the challenge most days--it's nice to firm up after sitting in a hospital bed for 8 weeks--but this week has been a little tougher for whatever reason, my lungs are just not having it... did I mention I require 1-2 hr naps after?
Tuesday April 19
After weeks of flirting and flip-flopping, transplant and I are hand-in-hand: It's official. Today I signed the dotted line and, following a few inappropriate jokes about diseased lungs and death, was listed. Let the wait begin!
It was quite the day of build-up, we arrived at Toronto General around 11:30 and didn't see my Coordinator until around 12:30. We briefly chatted about where to go once I receive the call, travel restrictions (I cannot travel more than 2.5 hours away) and activated my pager. I then briefly saw a man about drawing my blood (they always seem to get you!) and hurried along to meet the surgeon, then we waited... and waited... and waited... and apparently set a new record for longest wait time to meet with the surgeon (2 hours, yay us?). I ended up reading through my entire chart by the time my name was called. P.S. Mildly fatty liver? Fatty pancreas? Pfffft! I'm deeply offended.
Last week I turned the corner, finally: my WBC inched below 11, meaning my infection was under control for the first time in months, wheezing nearly vanished, and shortness of breath decreased--all good things. I embraced this positive news with a practiced sense of caution, and sure enough hours later was served up another challenge: I had to change rooms... to a semi-private.
No one likes a semi-private, but I'm not fully opposed, since I've endured it several times before and I'm no princess (officially). But something about this move set off a mental quake; when your health deteriorates before you, when your body crumbles and chisels away at the life you once knew, you cling to the familiar (whatever that might be). This might be a stretch, but it reminds me of 'normalcy' in disaster zones that is maintained by keeping to routine, be it going to church, attending school, or playing a game of chess (as I assume chess is the post disaster game of choice). My 'normal' was creating my own space in an otherwise very abnormal home and the second my security blanket was ripped away, I felt far more vulnerable than I have in a long time. My illusion of control was suddenly very clear; I haven't really had that much control.
I was rather surprised when I noticed I had a missed call from 'unknown' yesterday morning, although it should surprise no one that I didn't pick up since a) I rarely pick up my phone, and half the time my cell refuses to work anyway and b) Unknown, really? Do I want to speak to you? Not talking to strangers is a golden rule in life. However, these days 'unknown' usually means a phone call from TGH or Sick Kids (trying to rope me into another study [I've already done 5 billion]... I played the transplant card and I don't think they'll be calling... ever again).
After checking my messages, I confirmed that the call was from my transplant coordinator and she wanted to discuss the results of Thursday night's meeting. Following a brief sweaty-palmed game of phone tag, we finally got in touch and she delivered the verdict:
Tomorrow is the big day, the day where my entire health team (Physiotherapists, Doctors, Social Worker, etc.) gather with the transplant team at Toronto General and present my case Dr. House-styles. Initially, I looked at this day with a sense of dread: it meant this was it, I was giving up on these lungs once and for all and officially taking a giant leap of faith into a world unknown. But as things have progressed and my state of health has continued to decline, that dread has turned into excitement with a hint of desperation--I'm running out of options and I need this, I've lost the luxury of time to mull over this decision.
Perhaps I should provide you with more background: last week the Chest Fellow came into my room for an afternoon chat, she told me that I wasn't stable enough to leave the hospital (even for homecare) and that we probably wouldn't even discuss the possibility for another 3-4 weeks (at this point I'd already been in the hospital for a month). I suppose I didn't truly realize the gravity of my situation until she said that it was possible I would have to stay here until transplant and that they (the medical team) would be suggesting I get listed at Status 2 (the highest status on the transplant list). I was just warming up to getting my feet wet, now they wanted me to dive into open waters...
It's hard to tell now if I'm in the eye of the storm or if it has passed by me completely. Those last two posts were written during some rough days; my infection was raging and by WBC was hovering at 17. By Tuesday (March 22nd) we decided that it was pretty clear the IV antibiotics weren't working and we would add a third (Cipro IV) to see if that would help move things in the right direction. IV Cipro is apparently not used very often because studies indicate that the oral form tends to work just as well, it is also quite expensive and reserved for very ill patients for this reason. Since I didn't really have any time to play around with oral Cipro and later ponder if the IV form would have produced better results, I fit the bill. Since then, I've been staying steady and slowly improving, my WBC has dropped to 13 and my oxygen dependency has decreased--the load has lightened a bit.
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.
Backtracking: The following was written on March 15th. WBC up to 16. PFTs dropped from .82 to .70 in 48 hrs (Between March 8th and March 10th).
These past two days have been rough. Ever since last Wednesday my lungs have taken a sharp decline; the shortness of breath has been growing and the lethargy caused by every little movement is intense and troubling. I must admit, it is quite scary and humbling to go from the top of the world to the pits in seven short days, it kicks you down and cripples your sense of confidence. Yesterday (Monday the 14th), we decided to change my drugs since it was evident that due to my increasing shortness of breath, increased mucus production, and coughing up blood yet again, that my current combo was not working. To give you an idea, last Tuesday I was bookin' it to Dundas Square, taking quick strides in my heels and weaving between the masses to quicken my course to my final destination, on Saturday night the ease turned to effort as I struggled to walk against the current, wheezing, huffing, puffing, crackling.
Backtracking: March 9th
If March 8th was encapsulated bliss, March 9th was a flood of nightmares.
It started off with the ever-so-tasty fructose syrup from diabetic hell in my cup--this was the OGTT test I was required to do to prove once and for all that I was not diabetic. The good news? I wasn't diabetic. The bad news? The OGTT appeared to set off a tantrum for my recovering, temperamental, lungs.
Besides being hungry and grumpy enough to punch walls (which I couldn't due to lack of energy anyway) I started feeling extremely short of breath and felt my heart pounding in my chest like a wild beast trying to escape my rib cage. After attempting to get dressed, I sat down on my bed and tried to catch my breath, I popped on my SAT monitor and yup, my resting heart rate was 125--not ideal.
Backtracking: February 25th-March 8th
I finally got a bed on Friday (the 25th) and was started on my dream-team med combo (Meropenum and Chloramphenicol), the very combo that saved my lungs from being permantly fired in 2009. Within 24 hours I felt great, my voice had returned in full-strength and my shortness of breath had lessened... I hopped on the exercise bike daily and didn't require oxygen--my levels, oddly, were fine. However, we later did decide that 1 L of oxygen would be helpful, since my heart rate shot up to 160, and it was very possible my heart was overcompensating for my weak lungs (thank you overachieving heart, remind me to reward you later by avoiding all trans fats). My main problem, upon this admission, was the inability to clear mucus (which, let's face it, is a lingering issue), all the physio in the world cannot get the stuff moving, which makes it difficult to clear infection despite strong antibiotics, if you can't cough it out... then you have a problem.
Backtracking: February 16th-24th
I write out the word 'calm' with slight amusement tonight, as I realize my definition of calm is and was anything but. Needless to say, home IVs were not the cakewalk I'd hoped for; I woke up with my usual start-of-IV-fever, and coughed up streaky blood two days in. After one week of IVs not much had changed, if anything I felt worse on my insane schedule coupled with the pressure to gain weight and monitor my blood sugars (which is difficult to do when all you want to do is sleep, plus the blood sugar monitoring required 2-hr fasting). I spent the week in a complete zombified state, hanging my Tazocin every 6 hrs and Meropenum every 8, whilst doing my regular treatments in between (three nebulizers a day and three physios a day for those taking note). At the beginning of the week, I was ambitious enough to continue walking around the block so I wouldn't evolve into some sort of useless lump on the couch, but by the weekend I was completely drained and couldn't get off the couch--I had no problems with accepting my role as couch mole.
Backtracking: February 15th
Procrastinators take note: it is never a good idea to fall behind on documenting your own health record.
First, you may notice I've changed my blog around a tad (ok more than a tad) in order to avoid the actual 'work' that needed to be done. I realize Grandparents will be sending me evil e-mails regarding this change so let me try to make this transition easier: 1. To leave a comment you have to click on the post you are reading to see the 'comment' box, and 2. All my tags and blogs I follow, etc. links are grouped at the bottom of the page... I'll try to fix this if I'm feeling ambitious again.
Now onto the fascinating storytelling...
The next clinic on Feb 15, started out semi-promising (so it seemed); my PFTs were back up to 25% and I was feeling ok. But when the new fellow (who I've grown to love) entered the room, all of my inflated sense of health quickly deflated and I was hit with a tsunami of information. First, we agreed that just 'ok' was not good enough and that obviously I had reached my plateau with Cipro and oral antibiotics in general--this point was emphasized by the fact that my WBC (which hadn't been checked the week before) was 17. Yikes. FYI: anything below 10 is normal.
Then and there we quickly decided that I needed IV antibiotics and before you could blink I was down in radiology getting a PICC line inserted. In fact, this happened SO fast that I had to send my mom out to buy me a t-shirt, while my arm was being sliced open, since my long-sleeved shirt was no longer a practical option and hospital gowns are never an option in my opinion. I opted to subject my right arm to the PICC line fun this time around, since my left arm is a big spaz (veins spasm, that play on words sounded more entertaining in my head) which is not hospitable for the wire rode that wants nothing more but smooth entry into your superior vena cava. As a result of my decision, they got the PICC line in first try, no problems!
Backtracking: January 30th-February 14th
Remember that time I promised to 'continue tomorrow' only to bail like a bad, deceiving date? Yeah, I apologize. Please take me back and grasp onto my good qualities after reaching past my less desirable (unreliable?) qualities. Where was I? Oh yes, once upon a clinic day...
First off, I barely made it to clinic day. After arriving home Sunday night I replayed the morning in my head: the blood, the struggle to breath, the unbelievable feeling of helplessness coupled with not being able to talk (again--keeping in mind that my voice is my most prized possession) all led me to an internal panic. Internal panic could only stay that way for so long before it was externalized and I wanted to phone the on call doc... BUT I knew they would only tell me to come to (germy) emerg and I opted to wait it out for two more days--48 hrs until I'd have my answers.
Backtracking: January
After a long four-month pause, I think I'm ready to type: fingers are stretched, brain is as alert as it will ever be, and the cloud of denial has lifted enough that I may peek out from under it. Since my last update my DIOS issues subsided and my lungs decided that it was their turn to creep back into the spotlight. I use the word creep with intention, as things have so gradually diminished that I was unable to take notice until quite recently. As my lungs were plotting their takeover, I was busy plugging merrily along: I graduated from the University of Guelph-Humber in December (after 4.5 years--woo!), and then embarked on a post-celebratory trip to Barbados with the fam jam (since my sister also recently graduated from her massage therapy program). It was good to FINISH something, since CF has a way of turning you into an unintentional drop out or failed hobbiest.
