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Archive for December, 2008|Monthly archive page

Bah Humbug! (Sunday Dec. 28)

In Uncategorized on December 28, 2008 at 5:11 pm

Hey All,

Colonel Tom here. Remember how not very long ago I told you I would be back posting? Well, here I am, and I wish that I could be posting better news. Alex has been readmitted to hospital with pneumonia. She has been in there since Christmas eve, and you can imagine how her spirits are. She was looking so forward to the holidays, had done a whole bunch of Christmas shopping, was feeling better with her physio day by day, and then…this.

She’d been worried about a fever last week, and we duly went into the hospital on Sunday the 23rd to have them check her out. That’s what you are “supposed” to do. Long story short: we spent 8 hours in Emergency, I contracted some sort of gastro-intestinal bug and we are not 100% certain that Alex didn’t pick up pneumonia in there at that time. Oh yes, at the end of the day they told us to go home and that we didn’t really need to come in (even though we were “supposed to”), that her fever wasn’t that high. I could go on and on about how absolutely frustrating it is dealing with a hospital that is semi-shutdown due to the Christmas holidays. All you need to know is this. DO NOT EVER GET SICK OVER A CHRISTIAN HOLIDAY IN THIS COUNTRY.

Fast forward to Christmas Eve…Alex continued to feel not-quite-herself so her Mom took her into hospital again and before you know it, she is readmitted. Yep. Back on the 7th floor again. We held back letting you all know this because, well, because it IS the holidays and we didn’t want you to be worrying over the eggnog. But just so you know, she is slowly getting into better spirits and they are treating her pneumonia aggressively. The doctors tell us that she will be okay once she gets through this but that it will take away a lot of her energy. We just have to make sure that she gets  lots of food and rest at this point, let the antibiotics do their work too.

So I will no doubt be posting again over the next few days and get you further up to speed on Alex’s progress. Hate to pass on the less-than-good-news folks, but we also wanted to keep you informed, as always. And despite our setback we do indeed hope that you and yours are having a wonderful holiday!

Colonel

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A Picture Paints A Thousand Words

In Uncategorized on December 17, 2008 at 10:46 pm

21A bit of a milestone today… “re-united (and it feels so good!)”…

Alex Plus.

In Uncategorized on December 16, 2008 at 12:32 am

2

Well, the results of the second Bronchoscopy are in, and show N0 Rejection, N0 infection! Hoorah! There is some residual inflammation in the lungs due to transplantation trauma, but they expect that to subside in time.  Having the actual test done was rougher this time as my throat wasn’t as well frozen and I did, in fact, end up coughing while they were passing the camera down my throat. Ouchie on the vocal chords! Nothing that some morphine didn’t speedily help though. I actually felt my eyes cr0ssing at one point, like in a cartoon!

The week brought its raft of daily challenges… strange drug side effects, some of them quite dull and boring, but others quite painful.  All is being “tweaked” and ironed out, though.  I am most excited to be switching from the GIANT Neoral anti-rejection pills to the much smaller ones of a different brand name, Tacrolimus.  Bonus, I won’t have to take a pint glass of fluid at breakfast and dinner just to force them down. We are hoping this change will encourage me to EAT MORE (my weight has been dropping weekly, where normally Docs would expect to start seeing gains). Additionally, the new pills do not SMELL of SKUNK! Double bonus!

This week I’m glad to report that my lung function is up over the 2 litre mark, and is 79%!  That’s a solid B+ and I’m delighted beyond measure at this.  Simple pleasures in life and self sufficiency are returning to my life and our household. I enjoy taking a shower and toweling myself off independently,  “playing” with my dishwasher, baking, walking the dog with Tom, and singing along to the soon-to-be released Lickin’ Good Fried recording. For those of you not in the know, along with my husband we front this honky-tonk band (called Lickin’ Good Fried) and have been recording it all year. Singing along to the studio mixes is helping me to find my voice again, and I am so excited about that, and about the new album too! My husband sure writes some fine songs…

With that in mind, some of you have asked if Tom will return to the Blog! Well, he gives his annual Christmas concert at the school tomorrow and that is soon followed by his vacation. I do hope to prod him into posting over his seasonal break, as he really has a way with words and quite a few fans here! (I think I’m his biggest fan though!) Hi, Tom here. Yes, I am eagerly anticipating some new contributions here. I am sorry, I have been waylaid by many after-work cocktails, hanging with my babe,  and catchings-up with the hoi polloi. I  look forward to some “downtime” and pause for reflection over the next couple of weeks, and will be firing  off my musings for you all when I can. We put up our Christmas tree last night and hope to visit Gypsy pony sometime this week if possible!!! I know we’d both really like to get to the country and out of this darned city for a change, and I think I might soon be up to the challenge of the car trip, etc.

Love to you all, and be sure to tell your friends about organ donation. It is truly the Gift of Life.

Alex (and Tom)

High Stepping!

In Uncategorized on December 9, 2008 at 4:56 am

ankles2

Well, the journey continutes folks!

This week was a good one I fancy: I have been sleeping without the use of oxygen since Thursday and am down to using just a couple pillows as my incision pain has lessened.

Functionally I made good strides this week, literally! Walking the block here in Toronto is getting easier, as if “the block” gets shorter… essentially as I walk faster. Had to break out the long underwear for dog-walks in the park this weekend though. Boy! Henry just loves when all three of us go to the park: his glee is plastered all over his face as he leads “the pack” up the street.  On the treadmill and bike at gym I’m also building stamina, AND OUR STAIRS, which previous to surgery seemed mountainous, seem easier daily: mundane even. I do puff at the top, but for much less time, and the whole time I’m talking simultaneously. I hope to *never again* take walking and talking (at the same time) for granted.

The fun news today was seeing that my lung function has gone up to 72% fev1 and now sits at 2 litres.  I feel like pinching myself.  I actually ENJOYED myself at the pulmonary function lab. What up with that?! I hope it continues to climb. The Doc was encouraged, although I’m not yet ready to share my xray with you until we get these cloudy parts of it dealt with… which brings me to… my second bronchoscopy …. this Wednesday…. Look out throat: here comes the alien robot camera down in you again!  Hopefully we’ll get to the bottom of things. Er, of the lungs anyhow.

SPEAKING OF THE BOTTOM OF THINGS: I HAVE ANKLES AGAIN!  The post operative swelling has reduced and I’m back into my size seven shoes again. I cannot say what a relief this is, though it must sound trifling in comparison to where I’ve been! I spent a lot of hours in Diabetic socks with my feet up the wall since the last post. So glad to have my feet on the ground again, and to know I will be able to wear my red shoes again.  That not withstanding I have had a string of (smallish) maladies as a result of the immuno supression I believe.  *sigh*  This body feels altogether new sometimes, and as such, I’m just getting to know it.  It likes to toss me curve balls! It’s like an advent calendar: what will be my unusual symptom today?! Joy. Goodness!  My husband is a star for dealing with this teething. My folks too.

As I write this, there’s a healthy dose of snow on the ground. It looks like Christmas indeed, even feels like it a bit too! I got my Christmas, birthday, Easter and Thanksgiving a bit early this year…  I will probably not be able to party with friends this yule as the cold and flu season is threatening whilst my rejection meds are so high right now. How much I will be thinking of you all and looking forward to future hangs, though! Check back here for more updates, as they will be coming!  Oh boy! Just think, in a couple months I will be allowed to sit on a horse, although I might wait until spring when it’s warmer, eh! I can’t wait to tack my own pony up again without getting breathless, to not have to hook up the oxygen tank (back to cute saddle pads! Yay!) and to lean forward and smell Gypsy’s mane from the saddle while I give her a big hug.  I can’t wait until the first time when we’re in the woods again togther and I don’t have to worry about my oxygen hose catching on the trees we pass, or having to check to see if I have enough oxygen in the tank for one more loop of the woods. I can’t wait until I can ride and talk again.   At the same time!

Alex.

One Month Lung-iversary! (December 2, 2008)

In Uncategorized on December 3, 2008 at 3:56 am

It was four weeks ago today that I had my transplant! And today I enjoyed the longest workout at the treadmill room ever, and with the best oxygen saturations in my blood since… well, since 5-10 years!

Anyhow, Four weeks ago today someone had the generosity to donate their lungs to me… I think about that often…

It was 9:07am precisely when my cell phone rang at my bedside. I had just slipped into a nice dream about washing my hair when the phone woke me with a start.  “Hello, this is Toronto General Hospital calling. We may have a set of lungs for you today. We need you to come to admitting right away.” At 9:08 am I called Tom at school, and thankfully he picked up as I announced into the phone… “Round Two!”  This time, I was hoping, was no false alarm like back in September when we waited nearly twelve hours at the hospital only to be sent home disappointed and sans lungs.  We were all hoping November 4th would be different!  Still in bed, I used my phone to make a few calls, mostly about Gypsy-pony’s care, and one to my folks, telling them to hustle on down!

At the hospital I got admitted, xrayed, ECG’d, bloodsucked, swabbed, looked over, & autographed by the surgeon so quickly! As we were all sitting around feeling anxious, the door to my room swung open and Karen the nurse announced triumphantly, “1 pm O.R. time!”    We all looked at each other with large eyes.  Wow. Getting more real by the minute.  I sneaked into the bathroom to have one last look at myself in the mirror. Wow. Eyes look you last! How momentous!

Soon I was wheeled down the hall, family in tow, towards the prep room for surgery.  There I met the anesthetist for the day; a freckled lady and her team… there they dressed me in surgical pressure socks and put me on notice that I had but a few minutes till “go time”…. I caught sight of the surgical fellow eating a submarine sandwich. Breakfast of champs I hoped!

Now, saying goodbye to the ones who raised me wasn’t easy, but it all happened so quickly I just did it. I handed over my glasses for safekeeping. A hug from Mom over the side of the gurney cannot possibly encapsulate the love or gratitude one feels for the lifetime of unconditional love, or can it? Another hug from Dad who said he loved me (something Dad finds easier to express through car washes and greeting cards) with the added, “kick some butt!” , and then, turning to Tom, my sweet handsome groom, whose eyes were filled with tears of joy and fear and gladness and everything… Me, looking at him wondering if it’d be the last time, or just the last time with these lungs… But taking my eyes off him was very hard to do. This could be the start of something big!  Then the stretcher started to roll away and I think I remember mother nervously joking, “I suppose I should be offended that she’s exchanging something I gave her!” (the lungs).

I pulled a smile, sort of excited and shy to roll into the OR and found it much smaller than I’d imagined. “Is this where it’s going to happen?” I remember asking. Despite my lack of glasses (I’m not that short sighted!) I saw a group of focused people all at work. Someone numbed my arm, started a line here and there, movement all around. I spoke up and said something nervous and silly along the lines of, “okay team, I’m a singer so lets hope the intubation goes well and I’m back singing someday, huh?!”  Then the same freckled anesthetist from the prep room leaned over the bed and said smiling, “Everything’s going to be fine, I’m going to treat you like you were my own sister. In fact you kind of look like her!” And with that she patted me on the chest and brought around a white mask. “there’s just oxygen in here now, but I need for you to breath it in….”  I believed her….

….and the next thing I knew I was waking up as in a dream afterward. It was almost like on a tv show where the edges go all blurry to indicate that the Hulk is just now awaking from his coma or something…. but I remember vaguely waking up and seeing Tom standing through the haze and I wanted to know, “was it real? Did it really happen? Was this a dream?”  He told me yes. Wow. Yes. Apparently I wanted to know a LOT of stuff, but couldn’t ask because of the tube down my throat which was irritating.  Imagine ALEX being unable to TALK?! I knew all that was to be expected and I was fairly stoned off my gourd so it was pretty funny trying to write notes to Tom and Mom…. sort of kept falling asleep mid sentence.

That night I kept worrying that I would stop breathing. My old body was still catching up to these new lungs which breathed so well! I got the tube out, which was uneventful thankfully too… but the main thing I kept asking was if I would stop breathing. A very dedicated nursing staff was by my side all that night. A kind nurse sat by my bed and said the “Lord is my shephard….” and somehow the night turned to day, and days to night, and bit by bit I got stronger. Some days it would seem like I didn’t get any better, just different challenges, but a month later here I am.  So, evidently taking it day by day did work!

Some funny moments of the early days were the hallucinations the drugs gave me. I’ve never been a druggie so I found them quite bizarre…. bubbles on my wall (think Lawrence Welk!), a quickly spreading shag carpet on my ceiling, once a swarm of bugs, & a monkey with three bums… crazy!  I also fancied I heard “We Are The Champions” by Queen, night and day for several days no matter what floor I was on.  Go figure on that one. Nobody else heard it but me and so I began to realize I should stop telling people “I hear music…don’t you?” or they’d think I was a right loonie!

Oh, and a funny awakening on one of the first mornings post transplant was me, all sort of foggy, hearing a jazz singer… I thought it was Helen Forrest or someone like that. I was thinking to myself what nice music it was, and I should probably find out who it was and then record that song later for sentimental reasons… I was trying to ask “who is that lovely singer” when all of a sudden the unmistakable clarinet licks of my own Ross Wooldridge came to my ears: THE ALLEYCATS! someone was playing my Alleycats! And indeed, it was the nurses of the ICU who had downloaded our music videos on Youtube and were curiously gathered listening to their patient on the computer just outside my door.  I laugh now how I thought I sounded “good, like Helen Forrest”!  That, and Queen, are my first musical memories from post transplant…

And that, friends, is one month ago.  While it has been challenging and will remain a challenge and an adjustment, just the mere fact that I did so well at the gym today tells me it all stands to be “worth it.” I went in there a month ago on my last legs, dying. I came out with the hope for renewed life.  I have to go for another early bronchoscopy to assess some possible concerns again, but that, I’m told, is all normal and the team are so dilligent.  Wish me good luck on December 10th when I again get the robot camera down my throat and my shiny (?) new lungs biopsied. Hoping the “fates allow” for much merriment this lifetime!