Archive for February, 2009|Monthly archive page

Back in the Saddle Again!

In Uncategorized on February 25, 2009 at 9:41 pm

The Doctor told me I was “good to go” for more active physical activity on Monday.

This, as well as a general feeling of fitness and strength returning to my legs, had my mind looking towards riding again.  Last night I took note of the mild spell approaching… I got an idea, which was followed by horse dreams all last night.

This morning I woke up. Warm and sunny.  I called up to the farm: Jo Ann who has been taking excellent care of Gypsy all winter reported that she’s been sensible of late. A-ha! Warm weather, sensible pony and the doctor’s blessing…

I guess you know what THAT means!!! Yup, and it felt so funny to be leaving the house all geared up in my chaps and riding clothes. I kept thinking, ” I’m missing something!” But it was the oxygen tank I was missing. I haven’t gone riding without a tank in, what, TWO YEARS? Wow.  Come to think of it, I don’t miss it at all.

Because it has been 3.5 months since I last rode (November 3rd, to be exact!) I therefore noticed quite a difference! I picked up my saddle and carried it around the barn and swung it up onto the horse just as anyone might.  I was leading the horse into the arena and checking my girth, crouching down to see if the stirrups were even, walking to the mounting block, all like a normal person! The last time I did ANY of these movements in this place and with this pony I was so handicapped.  It seemed that in merely SECONDS I had swung up and was in the saddle. Plop. Off We Go! No time wasted fiddling with oxygen hoses etc. Mom and Jo Ann were laughing about how quickly I was up.  And truthfully, I had swung myself into the saddle before even *I* knew it! There I was, sitting in the saddle, just like I never left. My legs found their old spaces in the saddle, my feet picked up the stirrups, my muscles remembering where to go.


Here's me just having swung up into the saddle and taking my first few steps.

I will say now that I had told Mom I was just going to “sit on Gypsy. Maybe walk around a little.”  But it seemed a shame to have driven all the way there and gotten all dressed up for the occasion only to walk around. Plus the curiosity was killing me.  So, after an emotional first minute of just realizing, WOW I AM BACK ON MY  HORSE, I gathered up my  rein contact and asked her to trot.  Slowly. She trotted slowly, politely, looking after me perhaps.  But we trotted. 

At the trot my first thoughts were, “okay, so my legs remember what to do and where to go!” And they didn’t feel too useless, either, which is amazing, because I haven’t squeezed anything since the surgery. My second thought was of my lungs, “I can feel them bouncing around, but I guess that’s normal!”  As I rounded the arena once at the trot I can honestly say I was out of breath. Out of shere habit I asked her to slow to the walk.  But my breath was back momentarily. Wow. Cool. “Okay, try it some more why not?” So I went on like this a few times, trotting for one lap, and stopping to catch my breath, all the while hearing the physio Chya’s voice in my head, “now when you get out of breath, you’re just out of shape!”  and also, “you’ll need to challenge yourself!”  and so, I did! In the end I ended up probably doing about four laps without stopping–HOLY COW WITHOUT OXYGEN. I was winded, but my breath came back momentarily! It’s not like before when I’d do a lap with the O2 cranked, and then take twice as long to recover my breath. I just went out, exerted myself, chatting the whole while, and then it came back! 

Some of the other girls came in to ride presently.  Monique said, “how’s it feel without those (oxygen) bags flapping around your saddle pad?” And Stef asked, “yeah, how’re the new breathers?”  Breathers. I like that! “IT’S MUCH BETTER!” I responded, “but I think I have to stop now, because my legs are tired.” We laughed a bit because that’s so much preferable to how things were before.

However, that being said, seeing the other gals riding around I got a inspired to “be normal”, and quietly asked Gypsy up into the canter. I mean really, she was so slow and sleepy today so it  didn’t feel risky at all.  “She’s cantering!” said Monique. Well, so I was.  Nice.  I just did one circle because the arena was starting to become a bit dusty and I was concerned about inhaling it into my shiny new lungs. I just found out on Monday that I  presently grow fungus in them, so there are things in the environment obviously that can affect my lungs that I have to be careful of.  I called it a day and took one little walk outdoors where Gypsy filled her nostrils in deeply at the fresh air.

Finished the day off with lots of carrots and pats.  I was really glad Jo Ann was there to see Gypsy go: I can tell that Gypsy really loves Jo Ann. As do I! Well, what an honour. What an amazing honour to be able to do what I just did “like a normal person”… like a normal out of shape 32 year old person!  ha ha ha…

It’s Like a Recording Studio… of sorts!

In Uncategorized on February 19, 2009 at 6:21 pm


Well folks, everyone is keen to know when I’ll get back in the recording studio… DID I EVER REALLY LEAVE? Take a look at this “recording booth” from TGH’s Pulmonary Function Lab! The engineer says, “that was great, but let’s do one more for safety!”  Not so very different really!  In any event, you will all be pleased to know that my lung function last week was over two litres and the highest it’s been since transplant! That is to say I’ve made up the ground I lost at Christmas! 

Tuesday I had my belated three-month bronchoscopy. They give you this novocane-like bitter stuff to gargle which then numbs the back of the throat so they can more easily pass the instruments down.  However, after gargling there seemed to be a delay in waiting for the bronch suite and my throat started to come back to life.  “Give me more of that stuff please!” I begged.  The nurse could hardly believe her ears, “NOBODY ever wants MORE of that. It tastes awful!”  I agreed but reminded her that my throat was my living and I didn’t want to risk coughing during the insertion for fear of damaging my chords.  She shook her head and brought me more, “NOBODY has ever asked for seconds on this!” she kept mumbling.  We await the pathology results, but the Doctor said just from looking that it seemed “better” down there again.

I’ve also been enjoying a stay Chez Parents while Tom has been away in Texas. Yes! Our weary hospital husband has finally felt the warm sun on his face!  He feels rejuvinated after a five day trip to the lone-star state. There was honky tonking, tex-mex, swimming holes and drinks. I am so delighted for him!!!  Meanwhile, up here in Canada I’ve been enjoying the wintering weather outdoors, because now I can keep moving long enough to stay warm!  This means I’ve been trecking with Henry in the ravine behind Mom and Dad’s house, riding my bike, and of course my new seasonal favorite, SKATING! Yesterday was a snow storm and I had the entire rink to myself. The snow on the ice made for extra drag and a more aerobic workout.  Here is Mother in her fur hat standing on the sidelines at the “rink of my youth”, Woodhurt Heights.  I’ve also enjoyed the “chicken wings of my youth” from the local Chicken Land, and on valentines day I had “the steak of my youth”, which was a GIANT t-bone cooked ala Dad on the Pangman BBQ.  I joked that it was the size of Texas, which it very nearly was!


That’s all for now!

6 Minute Walk Test, And Reflections on Treadmill Room…

In Uncategorized on February 11, 2009 at 5:18 pm
Chya and Denise, Physios in Treadmill Room!

Chya and Denise, Physios in Treadmill Room!

The “six minute walk test” is what physiotherapists in the biz use to determine a patient’s exercise tolerance/fitness. Basically you walk as briskly as you can for six minutes and they count how far (how many metres) you traveled in that time, and  immediately take your pulse and oxygen saturation upon completion.

Today was my Three Month “six minute walk test”, and I went in excess of 570 metres! That is one hundred metres farther than I got a month ago, and a lifetime farther than last fall.  I am so excited! All that treadmill walking, all that work on the bike and weights are paying off and it’s fun to see! I work no less hard now than I did when I was pre-transplant, only difference is now I see ENcouraging results!

So. Thus marks the end of my tenure at the TREADMILL ROOM where I have spent  2-3 days a week since June. When I started with them I felt like it was the dreaded first day of school. I’d been living the life of leisure; “the nocturnal jazz singer”, who only surfaced in the afternoon to go ride her horse.  Strarting on the list meant the non-negotiable 3 days a week in Treadmill Room to build up stamina pre transplant, and three months of rehab there post. I dreaded going. It meant accepting I was on the list, it meant bowing to their rules, and it meant… waking up in the morning (which, apart from being a jazzer, does not come easily to many suffering from CF)!  What came as an utter shock to me was that I began to actually enjoy working out. I had made friends with the system, surrendered a bit to it, and got to know some people and see some miracles happen. I even began to feel a little guilty that I didn’t use oxygen to work out, since most everyone else did. (If I had stayed on the list much longer I’m fairly certain that would have changed). But for the longest while nobody could tell if I was pre or post, simply becaue I was oxygen free. I was almost embarassed  by this, but as I saw my numbers starting to decline I had begun to feel my neck, as it were.

In about the fall I had settled nicely into the routine when some scary stuff started to happen in the CF Community. About five patients contracted a worse strain of the illness, a very punishing strain that can pass between people that suffer from CF through droplets in the air… what it meant? It meant that nobody with CF could exercise in Treadmill Room at the same time in order to keep them isolated from one another and to stop the outbreak. It meant that all the CF people I had been cathartically getting to know  would have to become “facebook friends only.”  I’ve met some great people there. I understand completely why we can’t hang out in person. It was with great care that the Treadmill Room staff kept up apart from one another, and had us in gloves and disinfecting the machines and weights after use. They had to do all sorts of juggling to accomodate the new CF guidelines. Two of these dedicated workers are pictured above, Chya and Denise.

Oh, Treadmill room… the sound of the various machines chugging along… the sounds of the various different coughs… the easy rock radio that I would hate, and the ipod I loaded with old-time radio shows to transport me elsewhere… the sound of liquid oxygen tanks being filled…  Oh, Treadmill room… the sights of physios in yellow smocks…. the sight of full grown men in track pants doing side bends like prima ballerinas on oxygen… the sight of people young and old, white, yellow, beige, in wheelchairs and on scooters… all arriving for duty.

Treadmill Room, This is Baby Bear Heading Home. Over and Out.

Home and Recovering

In Uncategorized on February 10, 2009 at 1:28 am
This Is Spinal Tap

This Is Spinal Tap

A quick recap of my day:  Twelve hours after entering Saint Mikes I am STONE FREE! What a trouper Mother is for her patience, and more too, if you read on…

The worst part of day: having a numb bum from the freezing that felt like major league pins and needles. And the ridiculous nurse who ignored me repeatedly when I said my anti- rejection medication was over due.

The best part: The EXCELLENT anesthetic docs. They took great care of me! Oh, AND I CAN PEE AGAIN! My catheter is GONE!!!!

The most interesting part: The spinal tap didn’t really hurt much at all. We chose the spinal over a general and it was a good decision which meant a)less drugs in my body, and b)nothing nasty had to be forced past my vocal chords.

The Ridiculous part: The Doc does several cases in a morning. He came out into the waiting room and began telling my Mom  about a “cancerous tumor”. She said, “Tumor! I thought it was a bladder stone!” To which he said, “no, no, it’s a tumor. But in someone of her advanced age we don’t like to…” — ADVANCED AGE?!?!?! After reviving my mother (who honestly felt faint!) he apologized for the mistaken identity and re-assured her that the procedure to remove my bladder stone had gone excellently.

I believe Connie is probably at home having a (well deserved) drink right about now 🙂

Change of Plans!

In Uncategorized on February 8, 2009 at 5:02 pm


Well, three month assessment has been postponed because of  a bladder stone that has reared it’s ugly head. No Kidding! I am scheduled to have it removed in surgery on Monday morning, when hopefully i can return to peeing as normal. This is painful! How did I ever deal with a lung transplant?

To take my mind off things I’ve been trying to keep busy, listening to music, playing guitar, piano, and eating lots (warm enough for a bbq in Ontario yesterday and we had steaks!)  The voice is sounding stronger too: I generally have been cranking the stereo and singing along loudly on my fabulous home treadmill. Just ask the neighbors 😉 It is a treat to be able to walk and sing at the same time. Something as simple as that had disappeared from my life pre transplant. Again I feel such gratitude to my donor… At three months I did a lung function on Monday that was at 2 liters, and 73% : this made me very happy! Slowly, I’m hoping SLOWLY BUT SURELY to improve lung function.

ps: (For those curious, my white cell count is slowly rising!)


In Uncategorized on February 2, 2009 at 1:20 pm


This is the week of my THREE MONTH ASSESSMENT at the General.  Wednesday will be three months. WOW.  Stand back and look what’s happened in that time and it blows the mind.

There will be all sorts of testing at the hospital this week to mark the anniversary. I’ll have a  camera down my throat, a tube down my nose, even eat a radio-active egg sandwich under observation. Wildness!  Mom and Dad made a gift of a TREADMILL for me to celebrate my graduation from the hospital exercise program. I crank up the stereo really loudly and walk and I’m at last seeing palpable growth in my muscles, especially in my legs.

This past weekend my friend Nancy came over and she led me through my paces as a swing dancer. Amazingly it all started coming back to me!  All the steps, all the coordination was still there.   Tom played the guitar as we danced for several minutes without stopping!  It was WONDEROUS to experience the *difference* in  my breathing since the last time I gasped through a swing out. Wow. I FELT SO BLESSED!  And to top it off, we had gorgeous weather this afternoon and sharp skates… yes, that’s right, TOM AND I WENT ICE SKATING!!!! We were on the ice about an hour and a half before it was time to go home and take my anti-rejection pills.  AGAIN I FEEL SO BLESSED!  WOOP WOOP! I just pray it will last.  I’ve still got my piccline in my arm, and still some chest pain, so I do feel like I’m still a “work in progress”,  but if excercise will help increase my lung function (it may) then I’m on the tright track.  Had a very realistic dream of returning to Gypsy’s saddle, also… but we’ll wait and see what the Groundhog says today…