bravestredhead

Archive for July, 2009|Monthly archive page

Numbers

In Uncategorized on July 29, 2009 at 8:20 pm

… so, my lung function today was up to 2 litres after last week’s draining. I like going up 🙂 !!!!

… I’ve been told that since my CMV status is staying at 0 that the tentative release date for me is Aug 5th. I am however told that the two ID Doctors have differing theories on length of treatment, so it may still be longer. I’m told that “neither theory is wrong”…

… Jupiter repells/rejects/flings object out into the space atmosphere at a rate of 35 miles a second, faster than any bullet.  This I learned from the history channel series called “Universe” which has captured my interest of late!  Hey, I wonder if they do transplants in galaxies far far away!!!

… Lastly, August long weekend: Oh my, are we there already?  Aug 3rd our band Lickin Good Fried plays in Stratford for the Stratford Summer Music Festival and classic car show! We’re on at 4pm I believe.

Update

In Uncategorized on July 27, 2009 at 5:46 pm

You know the scene from Frida where she’s writhing in pain and screaming for her sister to give her morphine? Well, aside from the Mexican accent, that was me for a coupe of days last week. While “pig tail” might sound pink and fluffy and cute, it did not feel any of those things: the pleura being very sensitive area, this made for a brutal 48 hours at the start. Once things settled down it was merely uncomfortable and we drained just over one litre: less than we’d thought, but so be it. I did not object when they said it was “time to take it out”! Having it taken out really did feel like having a cork screw pulled out of ones back. Yikes! And for those bloggers wondering, I did lose a couple of pounds in fluid.

Came home yesterday on pass and we jammed. Me on guitar mostly, and Tom on bass. The freak that he is, Tom can already play in flat keys, while I am left in the dust playing in D (mostly open strings)…. sure is fun to SLAP though! The big baby looks great in our house. So cool.

I read a book in the spring about talking intuitively to animals, but I decided I lacked the skills to be psychic. I had hoped to be able to ask Henry why he cries every night at 8:30 pm… all logic defies me on this one. Anyhow, I *might* have Henry read. I got the psychic lady to read Gypsy since this is our 20 year anniversary.  It was amusing. Gypsy wonders if it is “her food” I am giving out to the other animals (by that I assume the mints I sometimes share between Gypsy and her barn mates), she wonders if I worry I’m “too big” for her, and she also wonders if I’ve moved.(The psychic says that’s probably her wondering where I’ve been this past week.) I tried not to give the psychic any hints,  but she did say Gypsy sent her an image of a horse with large white splotches: Mister I wonder?! I forgot to tell the psychic that Gypsy’s show name was Fortuneteller!

I repeat lung function tomorrow and we’ll see if the drainage makes any difference. Fingers crossed!

Postponed. Again.

In Uncategorized on July 20, 2009 at 6:38 pm

I have no idea how many days this draining can be postponed, or rather how many mornings I can wake up wondering if “today is the day they hurt me and poke a hole in me.” Or how many frustrated afternoons I’ll spend thinking, “just when am I ever gonna’ feel better if they keep putting this off!!!!”

Anyhow, To prove that I do indeed still read all your kind blog responses, I have a link to share that was sent in by blog reader Jody. Below is a youtube video from the concert that I guest sang at last month, hosted by Jaymz Bee. This was shortly before the “other shoe dropped” and I really was feeling fit as a fiddle that night albeit jacked up on coffee and anti rejection medications! I have a secret hope that my donor’s family would somehow hear this and be happy to know how their loved one’s lungs were being appreciated, as is demonstrated by the smile on my face. I am hoping to get back to that state again soon: if only radiology would frigging drain me!!! (When they re-attach the new lungs they do not “hook up” the original drainage system, and this is why the fluid from the infection cannot drain as God intended.)

Anyhow, music maestro, please!

Er, Make that Monday…

In Uncategorized on July 19, 2009 at 10:37 pm
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Coming back from a GREAT ride, modeling the new bug hat and reins.

Apparently I was not “sick enough” to warrant a slot in radiology to be drained last week, despite waiting around for one.  So, the new goal is to have the pigtail added on Monday.  I am growing suspicious of if it will ever happen, but very curious to see how my exercise tolerance and lung function will react to the lack of fluid: I mean, no wonder my function is down: 2-3 litres of fluid around the lung is significant. That fluid is taking up the space inside my ribcage that was formerly fillable with air! In any event, they say “this week”, meaning as soon as Monday.

Waiting around, however, does NOT mean that I did not enjoy my week. In fact,  I want to put your minds at ease a bit as Dad found the last few blog entries “scary”… This week Tom and I enjoyed some wonderful riding. As everyone around us in Ontario curses the cold summer, we revel in it: no smog, clear crispness: perfect riding weather. We have had some ACE rides together, Tom mastering the art of bareback riding even! (I think he’s part native: you should see him leap up onto his horse bareback and latch on with his bow legs!)

Now, our favorite route is soon to be off limits: after riding around the corn field today we realized that it will shortly be impenetrable: at times, riding between the rows the corn was a good foot over Gypsy’s head: almost enough to make a lesser horse panic, or make a rider feel they were drowning, but she just kept her head down and forged forward knowing the end was in sight and enjoying snapping off corn stalks in her greedy mouth.

The deer flies are as I have never seen them before. Yikes! It’s quite astounding. And today I was able to outrun them with my return to the oxygen tank. Yes, I tried it, and you know what? It didn’t hurt my pride as I’d thought. It didn’t bum me out, cause I’m hoping this is just “for now”. In fact, riding with the O2 felt like I’d had my lung powers restored again.  Tom and I enjoyed some great open stretches: to outrun the flies of course 😉 Yes, it’s a hassle, but it’s hopefully just impermanent. Yes, it’s complicating, but it’s also freeing. It allows me to “go” for much longer stretches without having to stop to catch my breath, and this is good: the last thing I want from this hospitalization is to either lose shape or strength in my (very important) riding muscles.

Tom plays bass, Horse keeps time...

Tom plays bass, Horse keeps time...

And yesterday Tom and I went up to the music store. I’d seen this double bass last week there on consingment. I loved it. I took Tom yesterday: he loved it too!  We are going to put an offer in on it this week, and I’m trying not to get too excited since nothing is for sure  yet, but WOW, it’s totally fun to play. The above photo was taken on Queen street. Tom took the bass onto the street to check it over for scratches (he’s a sickening natural at the bass). As he was playing a police horse  walked by on duty, which I thought made an amusing photo. Then we went to the bar, the bookstore, and had a BBQ chez parents. Not bad really!

So, not all doom and gloom, and hopefully the drain will come tomorrow and I can get past this obstacle and get onto feeling better: maybe even ditch the O2 for riding?! That is my desire. Tuesday will be four weeks that I’ve been hospitalized. But I understand I’m not missing much in the line of warm moonlit summer walks…

change of plan. Again

In Uncategorized on July 16, 2009 at 5:12 pm

Yet another doctor today said “no bronch, but we’ll drain the 2-3 litres off your lung with pigtail chest tubes tomorrow.”

That’s quite a lot of fluid, and they hope it’ll make me feel better.

I can’t keep up with my team though!

So Tired…

In Uncategorized on July 15, 2009 at 9:27 pm

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There’s a Kay Starr song I like (one of those obscure tunes I have a predilection for)… it’s called “So Tired”.

Well, I am “so tired”. So tired of shuttling back and forth to the hospital. So tired of being ferried to xrays and CTs and Pulmonary function tests. So tired of the un-ending noise-traffic that is hospital living; the squack box in the wall by my pillow, the endless machinery beeping, the call bells ringing, the constant dance of people through my door with inedible food, scales, needles, pills, etc. I long for just a couple of doctors, but there is always a different one at my door: I know they all speak as a team, but I miss the continuity of care from St Mikes.

I enjoyed a few night passes home. These prove –I think– too tiring for their worth, although a few nights in a flat bed was good for my back. In any event, You don’t get home till 1am, and then have to wake at 7am and jet back to the hospital for another dose. I’m worn out. I’m tired. I knew this would be tough though.. and am so blessed to have a private room at present.

Poor Henry doesn’t know if I’m coming or going. Nor do I! Nor does husband, who’s desperately trying to find some comfort in our routine. He enjoyed a long weekend at his pal Billy’s cottage/island and a couple nights with his folks. But he admits this isn’t really “vacation” it’s just a place holder.

I feel badly about the disruption, but mostly I feel badly we don’t have good health. The CMV (down to zero this week!!!) seems piddling next to the bouquet of things in my bronch which are now finally causing this drop in lung function. We’ve started anti-biotics for those, but are doing (yet another) bronch this week to (hopefully) assess for & rule out rejection. This week in the pulmonary function lab I felt very bummed in seeing the drop. And I felt petrification, even though the friendly girl said, “these things can bounce back: you did in February!” So, despite that, and the chronic fatigue, I try and stay positive! Oddly enough I can still ride fairly effectively and enjoyed a great rugged (albeit mostly walking) hack in the woods with friends and hubby, which included one fabulous gallop in an open stretch to blow the (rather impressive) deer flies off! this time I made sure my bracelets were carefully tucked away!

So, enjoy your health, and the weather and the smell of the evening summer air at sunset for me. Enjoy your flat beds and the quietude of your homes! Send your prayers our way for a recovery.

Indie Indie Go Away…

In Uncategorized on July 11, 2009 at 7:15 pm

…DONT come again another day!

The noise pollution here today is obscene. The Indie 500 race sounds like it is one street over, even though it’s at the Lakeshore.  Not only has it snarled traffic, but it’s totally irritating on a purely decibel level. The hospital is arguably more quiet than this.

I took a “night pass” last evening. (I’ve recently been awarded those!) It means dashing home at midnight past all the drunken lighthearted revelers (perhaps wishing I were one of them) and then closing my eyes and opening them again in 7 hours to go back to TGH for more infusions. I honestly didn’t move an inch last night. And sleeping with the window open? Priceless! Sleeping without the intercom going off or inconsiderate nurses throwing the lights on in the middle of the night, awesome!

I went riding yesterday.  Gypsy was INSANE! The more I rode her the stronger she got! I was trotting once, but she wanted to canter and so I let her. Then the wind caught my two plastic hospital bracelets and they started making this curious whining noise.  This caused pony’s canter to quicken to a gallop, and I could see her head raise and her ears go back at the sound. “Great,” I thought, “I’m going to have an accident because of my *hospital* bracelets!”  Luckily we were heading to a dead end, so she had to stop. Frigging didn’t see that one coming. But it was an adventure, and I was ABLE TO HOLD ON. Ever since I qualified for home oxygen I haven’t felt I needed it! I mean, it would help my staying power in the saddle, but the lungs seem to be better steadily since the drug they started giving me.  This makes me glad.  Riding yesterday I felt less disabled, and more out of shape, if anything.

Today I had a massage! Hospital beds aren’t the most comfortable! So, this was my present to myself. Wicked. I am off to the shower now to finish off the magical spell. Plus I smell of Licorice oil, so I’m craving candy right now. Not a good temptation for a Diabetic! LOL.

Later today: a HAIR CUT!  It feels great to do “real person” things.  🙂

Alex.

PS: CMV count was showing 0 – 1 positive cell… this is GREAT!

PRISON BREAK: LGF @ the Opera House!

In Uncategorized on July 7, 2009 at 5:02 pm

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It is with great pleasure that I report that a kind Doctor let me break out of TGH to appear as part of the Toronto Jazz Festival.  Ironically, they had booked our country band to play an opening slot at Toronto’s East End venue: “The Opera House”.  When I arrived there was a lineup around the building and halfway down the block to get in! Let’s be clear, jazzfest time draws big crowds, as does the act we were opening for, Susan Tedeschi. STILL, pretty awesome to show up someplace you’re playing and see a wrap around line up to get in!

GETTING in was a bit more problematic. The monkey guarding the stage door would NOT let me in. “No laminate, No entry” he told me and then turned his back on me.  “But I go on in twenty minutes!” I told him. This went unheeded and I was told to go find the promoter (who was most likely inside.)  After more protestations and more pronouncements of, “No laminate, No entry,” I watched him sucking on his cigarette and said, “I bet you don’t have your organ donor card signed either”.  “Nope” he answered in a puff of smoke turning his back on me again. Odious monkey.   Soon the promoter came out and with a smile and welcomed me in.

Jazz fest time is awesome. Even though we were opening for a blues act, there were probably 250 music fans there. LISTENERS, you know?! They were packed in, and all lined up in the pit in front of the stage, gazing up at the boys. I was so proud of our little band.

Stepping up to sing I didn’t know WHAT would come out of me after the week I’d had, and you know what? I opened my mouth and the music came out! Some of the longer lines were a little tricky, but to be expected due to the drop in function. But over all: YES! Loud, full, clear. FUN FUN FUN! Standing center stage with the band and feeling the warm lights and the crowd’s enthusiasm was a balm to my spirit – plus I love jazz fest audiences.  Tom apologised/joked that we aren’t exactly a “jazz” band, and someone yelled out, “who cares, you’ve got CHOPS”!  They were truly warm and wonderful.

Back at the hospital I returned to find my room had been changed: to the one I had during my Christmas incarceration! Dun dun dun (insert scary music here). Flashbacks not withstanding, it’s a good room I suppose. Tom and I did the post game wrap-up with my iv pump going: all very surreal.

This morning the Doc referred to my condition as Pneumonia. Hello. I hadn’t quite realized it was pneumonia. Though I’m not totally shocked: I was very short of breath climbing the stairs last night. To ride a horse again at this level of breathlessness I fear I will need the aid of the oxygen tank, I hope only temporarily. So, we have to start the paperwork to apply for oxygen funding again. *sigh*

To say life changes on a dime for transplantees is no exaggeration. Last night center stage singing with my husband & making 250 people applaud. Today, hooked up to iv in a cell applying for O2 funding again.  I hear the Calgary Stampede is on: I should apply for the “bronch” riding (bad pun, sorry) because I’m having to sit a lot of bucks!

Update: Tuesday: BRONCH showed no rejection! we are still waiting on the other results to show what’s growing (ie: what’s making my function drop). I’ve been assessed for oxygen funding so I can continue to ride throughout this “wrinkle”. Sunday’s ride left me quite short of breath, and I cannot let the dysnia get in my way of keeping my muscles fit for riding.


Friday

In Uncategorized on July 2, 2009 at 10:55 pm

Recently I’ve been thinking how weird blogging is. Self indulgeant maybe. But a bit creepy. It’s like anybody can read this stuff! I’m doing it to keep friends in the loop and to take the pressure off Tom for having to tell everyone.

I’m going to keep it a bit more vague today.

CMV count is coming down! This was the primary reason for my admission. Hooray!

Another wrinkle, a wee drop in lung function, prompted a bronch (results not yet back). We have started some treatments (pills) to attempt to fix that wrinkle.

Winkles upon wrinkles!

And I’m trying to make it to the Lickin’ show this Friday. Nuts? But hey, singing is the reason I was born. (Along with some other reasons).

Time for fish n’ chips in the backyard and then back to San Quentin for me!

Ciao.