bravestredhead

Archive for June, 2009|Monthly archive page

Incarceration

In Uncategorized on June 27, 2009 at 8:31 pm

Tuesday morning I went and rode my horse through the woods. I strapped on my new bikini and took my first plunge into Mom’s pool in two summers. I rode. I swam.

I checked into the hospital.

Did I mention there were no beds? I was told that due to my CMV infection that I must start these new drugs.  “Hospital mandates we must clear the ER first before handing out beds to people on an outside waiting list, and nobody has gotten a room from the outside wait list in months.” CAN YO BELIEVE THIS STUPIDITY? I abhor this system. Ethics aside, it’s just false economy, for one, for the government to spend all this cash on transplanting new lungs into me, and then to send me into the lion’s den (the ER during H1N1 outbreak?!) without any defenses!

So, me with a reallllly low white count, spent TWO NIGHTS sleeping in the ER. I was very blessed in that I had a private room, however it was like sleeping in a casino (the lights never dim in the ER because they are always open for business)… a casino with all the hubub and beeping machines and diapers, but without fun. Broken necks, strokes, even one poor sod that had overdosed drinking hand sanitizer. It was not dull and I really didn’t need television.

Finally the call came to get me upstairs into a room. It had been 2.5 days in the ER & in comparison the  7th Floor seemed blessedly quiet. They are giving me day passes, but I am hooked up to i.v. for five hours every morning and night.  It’s intense. The injections for my white count have started causing bone pain and I’m back on heavy drugs for that, though yesterday, before the pain  started Tom and I were able to celebrate his first afternoon free of teaching (for the summer) by going riding. It was wonderful. The fresh smells &  green lushness of the farm a stark contrast to the hospital environment!

My sternum is hurting a bit: Perhaps from those pool dives? The Docs inform me that some people do in fact start to get sensation back at about this time out from TX. Also my lung function is down a bit today. I’m not sure why: perhaps it’s the water I’m retaining (a side effect of the new nasty anti-viral). I woke up today looking like a prize fighter with one eye swollen shut! Wah! On the upside, my bra can hardly contain it’s contents!

Alas, due to drug schedule times, and bone pain I had to cancel tonight’s gig: very demoralizing since it was to be my first “jazz gig” back in action. I am praying I can still do the Toronto festival with Lickin’ on Friday. Please God!

But mostly, please let my lung function go back up. It’s not a huge drop, but it’s something. I get scared easily: lots of time to think on the inside you know!

Anyhow, I came home to enjoy our backyard but a really terrible thing: the neighbor is playing his club music reallllly loudly and it’s actually more chaotic out back right now than it was in the ER. *sigh*

Signed,

“not-so-bravest-redhead”

ps: Horse Canada this month has a half page in it’s Horsepower pages about Gypsy the therapy pony.

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Timing…

In Uncategorized on June 23, 2009 at 2:00 am

…remember how I commondeered Tom’s Christmas vacation by becoming an in-patient at TGH?

Well,  History repeats itself.

Just got word that my sensitivity test is back from the government lab. It was waylaid because the lab was inundated with Swine Flu tests. Anyhow, so, we’ve just learned that I’ve wasted (more or less) many weeks on partially useless treatment for CMV  because I’m only partially sensitive to it.  This means I get to start a lovely (not) new (ugh) IV drug that MUST be given in  hospital because of it’s nastyness.  No word yet how long for.  And Tom’s last day of work is this week. And I just bought a bikini that I damn-well was hoping to use this week.  *sigh*  Grrr * Wah*

Will I even be able to ride this summer? To enter those shows I was gearing up for? To play my gig on Saturday night (the planned first “jazz” gig for me since transplant?) How about Lickin’ Good Fried at the Opera House? Will these drugs make me too sick for that?  And most of all; can CMV really be THAT bad if you get it to outweigh all this crap?! Oh, and the nasty white-count bone meds restart tomorrow.  Sorry, bravest redhead feeling somewhat discouraged at present.

She did in fact just walk to the local eatery, and eat a large steak and then walk home under her own steam. NOT out of breath. Her oxygen saturation is 100% today. Her lung function last Monday was (by a fraction) her best so far! Bravest redhead, SNAP OUT OF IT! This is just a wrinkle!!!

Took Dad for a day at the Woodbine racetrack for Father’s Day. The pomp and circumstance of the 150th running of the Queen’s Plate, bagpipes and RCMP musical ride: they must have known Pangman was coming! Tom won $25 on a horse called “whiskeyontherocks”: how could he NOT bet that horse? And the Plate was great: the roar of the crowd as the horses neared the finish line was exhilarating!!!

Anyhow, at the end of the race it was a heated finish: all racing towards the once place in time… just as we race towards Tom’s (well earned) vacation… Will I be out of the hospital? Or not? I likely think not, even though I’d hoped, prayed and jockeyed for the CMV to be dealt with by the time his school vacation arrived.  Still, I like to bet the longshot and cheer for the underdog: hope you’ll do the same!

Well, off to bed now: last sleep in MY OWN bed for a while to come yet I suspect. *sigh* Only a wrinkle.

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…How does your Garden Grow?

In Uncategorized on June 16, 2009 at 4:58 pm

Updating.

Still doing twice daily IVs.

Tom’s horse finally beat mine in a race!

My bronch culture grew LOTS of things… more stuff than a garden in fact.  Worrisome but right now we are just treating the CMV and taking an anti fungal to fight a couple things in that culture.  The anti fungal is $200 a day! Thank heavens for benefits!

Sang at the Burl Ives Centenary last night: I was shaking so much from the anti rejection meds that I actually was unable to play the mandolin. A first. When the adrenaline of a guest spot mixes with the Prograff, the results can be pretty intense: very Ozzy Osborne, (except without the bloodshed!)

For our anniversary (June 10th) Tom and I were blissfully without pain! No neupogen (although my white count is still lowish)… anyhow, we ate at Madelaine’s on King.  Let’s see: oysters, scallops, crab cakes, halibut, rosti, gnocci, cornish hen, lamb chops, desserts: very deluxe tapas type restaurant! Well, we were celbrating after all!

Down and Update

In Uncategorized on June 9, 2009 at 2:59 pm

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Yikes. Last week sucked. I spent most of it trying to get through the pain. Amazing how time draws out when you’re NOT HAVING FUN!

Luckily I was back in the saddle a couple of times by weekend getting some enjoyment out of my still somewhat achy bones. In fact, Tom and I had an excellent ride Saturday in the woods, and a couple of great canters out in the meadow.

But very very tired. I thought it was the pain killers making me tired, but it could be the CMV.  Despite the iv anti virals I’ve been getting, this week my count is triple what it was last week. Hard to tell why so tired as my Prednisone dose was also lowered recently too: could also account for having less vim.

Managed to get Tom to the tack store to buy him a leather goodie for our 3rd “leather” anniversary (coming on Wednesday). Then we ate from the chip truck at the side of the road: yes, summertime!  Tom was still grinning from his great ride in the woods, and his previous nights horse show victories.  He won a second and a third prize in his division and did GREAT for his debut show: I was very proud of him. (At least one of us got to a horseshow last week!!!)

I’m probably gonna’ have to do more white blood cell injections which means more bone pain, and no planning ANYTHING concretely in advance until this CMV is under control, although I will try! Still giving iv twice a day. Henry hates the i.v. pole. Me too, but we make do!

Had visits from Jennifer (she has gone back to Montreal now) and a lovely dinner near Caledon with the inlaws: prime rib always goes down well, and probably helps with my low haemoglobin too!

A Wrinkle In Time

In Uncategorized on June 3, 2009 at 6:01 pm

Well, this week was supposed to be my first horse show but…alas… Not.

My CMV status had come back showing zero positive cells for two weeks running. Joy! Oh, but then, suddenly EIGHT positive cells showed up.  This means that I started on the i.v. antiviral this week. That antiviral is tough on the white count and so I’ve been given more of those (NASTY) injections to create white cells.  It is the closest pain I can think of to labour pains. Coming in waves, I was decimated by the pain and not even the narcotics they prescribed me really did much. I won’t elaborate! Sufficed to say, the pain in the bones means the marrow is producing what it needs. But not that the iv meds ever slo me down, but because of the pain there will be no horse show for me this Thursday.

Tom however has signed up for his FIRST HORSESHOW this Friday at the Horse Palace. I do hope I am okay by then so that he feels capable of going. I’m very excited for him! Our third anniversary is coming up on the 10th… I notice that three years is “leather”, so perhaps I’ll take him on a trip to the tack store! Pick a little something out for him from me!

I did manage to steal some wonderful moments in the saddle last week. An intrepid riding lesson in six inches of mud was quite the exercise! The next day I chanced upon a coyote in the woods: it felt very special to have snuck up on him. I’ve ridden that trail hundreds of time and never seen him before. I saw him again later that week skulking around the pond where (I hope) he hunts Canada geese.  He is large! probably 55-60lbs!

I also had a lovely quiet afternoon on the lakeshore in Grimsby with some pals on Saturday, though my low white count kept me from attending the CD launch of Terra Hazelton that night. There would have been too many people  and too much risk from being in a packed crowd. That being said, I’d love it if you all checked out her latest swing jazz CD! Yours truly was asked to sing a duet with on her CD and it has “the distinction” of being my final recording project with my original lungs. Though you’d never guess it: through the miracles of something called pro-tools (ie: smoke and mirrors and clever editing!) we managed to put a lovely performance out.  You can purchase the CD at www.terrahazelton.com

Incidentally, I’ve been reading a lot lately. Quite amusingly I’ve been taking Bram Stoker’s Dracula with me to the hospital of late. They get a kick out of that at the blood lab! LOL.