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Archive for November, 2008|Monthly archive page

Got My Green Card! (Nov. 27, 2008)

In Uncategorized on November 28, 2008 at 3:03 am

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It appears that enough has gone on that I am posting before the week is out! And we’ve already hit the three week anniversary mark! I tend to think of my donor/donor’s family most on that day as any… and at nighttimes when all is quiet and I can just feel my new lungs working without the distractions of the day. They feel spongy and elastic in my ribcage compared to the hard shriveled clogged up bricks that I used as lungs before…

 Well, the transition to home is going mostly  well.  I feel the compunction to eat almost constantly, which fills Tom (the primary cook here) with much delight, as in my previous existence I’ve been just lukewarm on most food.  Maybe my donor was a “foodie”… but I suspect it is the prednisone and my body healing that is driving such an appetite!  Well, there’s only so much a gal can eat while having been taking painkillers for three weeks before…(insert scary music) a traffic jam in my guts! After an evil witches brew to right the wrongs, I am determined to stay off the tummy blocking percocets, and am putting up with some incision pain now as a result.  In other retentive news: ANKLES!  Once upon a time I had ankles!  I still have excess fluid roaming around my body from the surgery, and since I’m now no longer bed-ridden the damn fluid is all collecting in my feet and ankles from gravity. 

On the bright side, I’ve experienced my first SHOWER with new lungs: no more gagging when the humidity changed, just like the old days.  I also experienced my first WALK around the block post-transplant: this astounded me. It was a sunny but cold day and my one complaint was “my nose got cold”…. Uh, let’s see, the last time you walked that block (pre transplant) you were on 4 litres of oxygen, coughed up a small dog, and had to stop umpteen times to rest and catch wind.  To be able to just WALK the block was amazing!!! (Plus the exercise helps to make ankles reappear: I should be so vain, ha!) 

 Monday was my first clinic visit post-transplant: the Docs were so lovely to see and seemed proud of the progress I’d made strength-wise over the weekend: just walking around the house and being in change again has enlivened me. Dr Chaparro was all hugs and smiles. The x-ray, they said, looks good, and friends, I’m going to request a digital copy of it and try and post a pre and post transplant version of Alex’ lungs here soon enough. I think you’ll find the change quite astonishing!

 One complaint I have about the program (and one of the very few I have) is that when you get sick outside office hours (for instance, the curious swelling in my ankles seemed alarming to me) you have to use Telehealth, which may as well be called 1-800-Go to the ER.  I luckily found a ward nurse from TGH who calmed my nerves and thought the issue of swelling was just gravity related and could wait until the next day at clinic. With this suppressed immune system, the thought of the ER was petrifying to me!

 And this week I made my triumphant return to the Treadmill Room Gym at TGH!  I walked in to see Linda (who signed up the same week as me) and she asked, “are you pre or post?!” How lucky was I to say post! I was excited to see that my oxygen saturations on exertion were about 95-96 : wow, that’s almost NORMAL YEO!  Anyhow, it was great to reconnect with some folks in the gym, and to hear the boss telling me: “Alex, now when you get winded it’s just because your body is out of shape!”  Some of the stretches were hard on my incisions, but the rest was manageable, if slowly, and shakily! Those two pound bicep curls felt ten pounds at least! I attach a photo of me holding my GREEN CARD! (After transplant you graduate from a yellow to a GREEN score card in the gym, so this was exciting to have them hand me the green one reading “DLTX Nov 4”! )

 As I was there, taking it all in, remembering that my chums are still there waiting and labouring I felt emotional. I was cheery about my progress but couldn’t help but think of Kyle who was a very well loved adult CF patient who got very sick and passed away this month after a very valiant fight. IF ONLY HIS PAGER HAD GONE OFF IN TIME. I just wanted to remind everyone that ORGAN DONATION WORKS. I know I’m singing to the choir on this one, but if you agree with the gift of life, and “recycling”, sign onto the registry and tell your family about your wishes.  Ask yourself this question, if you were sick and needed the gift of life, WOULD YOU ACCEPT IT?!  My thoughts and prayers go out to Kyle’s family and friends, as well as to everyone on the list who’s waiting. I feel so blessed myself. That first day coming home was like Christmas, Thanksgiving and Easter all rolled into one… I wish for this miracle to happen to everyone I’ve met at TGH. 

…as I left the building last night I ran into one of the lung surgeons on the elevator who told me “we might be doing another transplant tonight…” ORGAN DONATION WORKS FOLKS! Sign up!

Home again Home again…Day 18 (Nov.22, 2008)

In Uncategorized on November 23, 2008 at 12:43 am

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Home again Home again…

Well, So, Here I am!

After a rollercoaster of a Friday in which I had an anxiety attack that had me barfing up my anti rejection and desaturating quite a bit, the question of my discharge was somewhat up for debate…  Nothing like another bout of Irish willfulness in which I went AWOL and walked myself quite capably to the Pulmonary Function Lab, did a beauty x-ray and brought my sats back up to save the day in the end!  In short, my lung function is more than DOUBLE what it was before transplant with more to come in the days and weeks to follow, I’m reassured. I was so excited to see the linear representation of my lung capacity change from it’s pre transplant “shriveled carrot” shape to a nice round pile of marshmallows post-transplant! Oh yes, and this of course meant DISCHARGE!  To think I almost psyched myself out of freedom!  Driving home was great: leaving the hospital, feeling the cold fresh air hit my lungs without sending me into spasms of coughing was… unbeatable! Mom drove like a charm and had me home at “Mitchell Manor” in no time, proudly dropping me off and watching Tom escort me up our front steps…my God they felt so steep: legs, where did you go?!?!  I came up the front steps a bit emotional, seeing Tom, his pretty “welcome home” sign, and then little Henry running up the hall towards me. First thing he did was lick my face (a no-no post transplant so I’m told). I crouched down to his level, could barely speak his name I was so choked up, and him all the while smiling and squiggling around in happiness. Of course, he kept trying to lick my face, but my legs were so tired that I couldn’t get up without a hand. It was just so great to be home and to see my little furball friend again (who I’d last seen the morning of the transplant) looking so bewildered at my sudden departure.  No sooner did I have my coat and gloves off than Tom was slipping my wedding rings back onto my finger: perfect fit! (I’m back to my pre-transplant weight again.)  It was so nice to eat at a REAL table, a REAL meal (quiche brought by a friend) with REAL mood lighting, and my best support team ever: Tom and Mom, both sipping some sort of celebratory beverage while I just beamed.  Overwhelming, yes.  I’m tired again today, but glad to have some freedom back in my life.  I promise to catch up with you more personally just as soon as I settle in and get some rest and clarity.  I’m still surprised at how tired I get, so will sign off now, and thank you all again for your very excellent blog comments which cheer/ed me no end. 

Love and kisses from Alex

(PS: I sang a song today: I think my voice has dropped a bit, or at least developed some lower tones… It’s all very exciting, if somewhat daunting! )

Cool, huh?

Well it sure is the finest thing having Alex home again! And as you might imagine we’ve a lot of work ahead of us as well as a lot of catching up to do. We are going to keep this blog going, but we both figure that the postings are going to move toward being weekly as opposed to daily. So check back every once in a while and we’ll try to put up lots of interesting info, goofy stories and just generally describe the post-transplant goings-on of Alex. Again, thanks for all the well wishes and please keep’em coming. Alex (and I) love hearing from you!

Bestest,

Tom

No place like… Day 17 (Nov. 21, 2008)

In Uncategorized on November 22, 2008 at 2:16 am

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Well we got Alex home today. She is happy to be out of hospital, but found the entire process of departing the place to be a tad overwhelming. In fact, she asked that I write a quick post for the blog tonight and promises to send out a missive to you all very soon. I am certain that she will slowly but surely be getting in touch with many of you via telephone and via email as well over the next few days. It’s going to take her a bit of time to get back into the “swing” of things, as it were. For the moment she is happily resting and sorting out all of the brand new pills that she is going to have to take. Oh yes, did I mention how happy she is to see our dog Henry? Oh, and to see me at home as well. 

It’s so great to have her back here and I really feel like we can finally slow down a bit from the astounding pace and intense experiences of the last two weeks. No more beeps and intercoms and hospital food. No more nurses coming in at all hours to poke her or move her around. Now it’s going to be home cooked meals, plenty of exercise and a nice warm house in which to spend her convalescence. Your cards and letters are so appreciated, and now she has the strength and clarity of mind to really savour them! Thanks as always, good friends. Stay tuned and Miss Alex will be writing from this computer before you know it!

Little bit of Limbo: Day 16 (Nov. 20, 2008)

In Uncategorized on November 21, 2008 at 4:28 am

There are two kinds of limbo. The older form is most recognized and celebrated in the Catholic church (and I am not a Roman Catholic, so forgive me if I am misled here). Most people know it as that feeling where you’re caught betwixt and between, neither here nor there, waiting insufferably…

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In religious terms it means you’re stuck in an eternal resting place that is neither heaven nor hell. You find yourself (or rather, your soul) in some sort of non-resting place, an anxiety ridden never really fully complete domain.  Waiting for something, anything, that never seems to arrive. In the weeks and months leading up to Alex’s transplant this is essentially how we felt all of the time. Hey, we had many great times out riding in the woods on Gypsy and Mister, lots of fine times in the backyard eating BBQ, and those swims out at Connie and John’s were life-savers. But Alex was always sitting on the idea that her new lungs were right around the corner, and she was not feeling all that she wanted to feel or might feel. She (and I and all of us) were waiting, and waiting and waiting….

11limbo

The other definition is much less sacred and a little more profane. It’s that crazy fun dance where you move yourself under a piece of bamboo (or a broom) to see how much you can bend. THAT is where Alex (& I and all of us) find ourselves today. We’re waiting to get her home and start living the fun and exciting life that is there in front of us! The plan is to get her home tomorrow.  She has to see a lot of different people in advance of getting out, lots of tests and things to do, but by this time Friday night the hope is to have her home sweet home.

You know, the broom in the limbo picture actually makes sense. I came home early tonight to spruce the place up a bit for my darlin’. It’s been a bit neglected as of late. So hey, you’ll have to excuse me! I gotta get to work. Next post is gonna come from the li’l lady herself!

Say Cheese! Day 15 (Nov.20, 2008)

In Uncategorized on November 20, 2008 at 5:22 am

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That’s Alex out for her evening stroll. No oxygen tank, no IV lines, no drainage tubes. Gary, her physiotherapist, is trying to get Alex to dispense with the walker as well. But for now, it is to Alex as a security blanket is to Linus. Sure is great to see her like this, and we both wanted you all to see it for yourselves!

So today began with a morning call from Alex. She’d had a rough night, and she wanted me to get over to the hospital. So I did. It’s not the first time that I’ve zoomed over there to find out that she’s not feeling nearly so bad anymore. Still a little shaky, but okay. So what’s a man to do? I would go if she said she had a hangnail at this point. It’s hard to leave her over there when we know that she’s going to be home soon.

Alex had yet an other night where her oxygen saturation dropped into the unacceptable zone. Needs to be said that she was on no oxygen support, as they are trying to wean her from this before they send her home. Nonetheless, this seems to happen around 2am to 4am, and it makes her panicky. Her breathing becomes shallow, the sat rate drops, she gets worried and can’t get her tired mind focussed. You can see how this is an awful sort of spiral. We think that perhaps it has to do with the fact that her body and her lungs are just beginning to get used to each other. Put another way, they are dancers who aren’t entirely in step with each other yet. The end result was that it made Alex a little freaked out and exhausted before her day commenced.

We attended a seminar with a pharmacist today. They are getting Alex ready to control her own anti-rejection regime. There are five main drugs that she will take to this end. The pharmacist walked us through the properties of the drugs, their side effects and usage. Alex will be on an even stricter drug program than she was with her CF meds. She won’t be able to miss a dose. These drugs are her lifeline, and need to be entirely respected. We also found out a lot about things to stay away from. Over the counter cold and flu medication, herbal cures, alcohol, grapefruit! She will be able to eat most foods without concern, but it turns out that grapefruit, as well as grapefruit seed extract and any juice that contains grapefruit will be very dangerous for her to consume. This meeting, with all its odd little bits of knowledge, seemed to set Alex’s mind at ease. After the seminar we ran into Gary in the hall and Alex did her physio.

Another milestone! Because we have stairs at home, Alex has to prove that she can climb up and down a flight. We went into the stairwell, Alex walking on her own without a walker and Gary handling the oxygen tank. She didn’t seem to really want to climb the stairs too badly, but we encouraged her. Told her it’s an important part of getting her legs back, now that her lungs are working for her. Gary winked at me and turned the dial down on the tank as Alex walked first up the concrete stairs and then down them. She was tired after she’d done them, but looked good. Gary asked “How do you feel?”. Alex said “good” and Gary told her she’d done it with no extra oxygen, that despite her fear she COULD walk those stairs all on her own. She was only slightly ticked at Gary and I for our subterfuge. I could tell that she was quietly proud of herself.  She was also pretty beat by the time the physio session was over.

We returned to her room and she lay on her back sort of dreamily. Many of you might not know this, but for the last two years Alex could not lie down flat on her back. If she did she would either be choked by fluids in her lungs or cough up a lot of blood. Like half a glass of blood. It is a miracle that she can now be prone like this, laying there happily with a bit of a post-workout opiate buzz. It makes me so happy.

So as Alex was on her bed the psych-social worker came in. Perfect opportunity for her to talk to Alex, and Alex obliged, speaking eloquently about her feelings over the last couple of weeks. So much different than when Alex felt besieged by “the shrink” that came in a couple days ago. They spent the better part of an hour talking, and after this I took my leave to let Alex rest. I also had a gig to play, and was relieved to get outside the hospital for a few hours, drink a whiskey and play some old-time country music.

I returned around 8:30pm with Mexican food in tow. Alex was thrilled to have “outside” food. In fact, this particular tacqueria is a favorite of hers. We ate and watched some videos that are required viewing for transplant patients. Industrial looking informational videos, replete with cheesy acting and 1990s fashion blips. The first was about a family who was going on vacation to Florida. The story essentially was used as a vehicle to show the steps that transplant patients need to follow to have a successful trip. The second video focussed on rejection and infection, two constant worries for anyone who is living with a transplanted organ or organs. Heavy stuff. We opted not to watch #3 or #4 of the series tonight, and went for a nice saunter around the 7th Floor. And that is when I snapped the picture of our Miss Alex, two weeks and one day post-transplant. Say cheese!

Wheeeew!: Day 14 (Nov. 18, 2008)

In Uncategorized on November 18, 2008 at 10:41 pm

5:30 pm 

Two weeks ago at this time Alex was in an operating room with one old lung and one new lung in her chest, awaiting the replacement of the second old lung, and three hours to go with her surgery. Today she could let out a big sigh of relief, in that her broncoscopy test has shown that she was not rejecting. The “just in case” megadose of anti-rejection and anti-viral meds delivered over the weekend has aided Alex in getting free of the drainage tubes, off the IV (just this morning) and at minimal oxygen supplementation. The transplant team is now thinking about sending Alex home on Friday! I am just home for a little while, so this missive is brief. I will augment this good news later this evening. But for now, consider the above a headline “on steroids”, if you will.

1am – Much later this evening, Wednesday now…

Yep, good feelings have continued. Alex went through all of her nightly routines as per usual, but tonight she was unhindered. She didn’t even have her nose prongs in for most of the time I was there. Not too much more to add to the great news that I wrote earlier. Just a general feeling that change is afoot, that it’s positive and generally leaning toward us being at home again and returning to some semblance of our “domestic” life together. It will no doubt be another challenging stage of Alex’s reinvigorated life with new lungs, and we’re eagerly anticipating the day she is “sent packing”.

This is not to say that our hospital experience has been anything short of revelatory. I think that I can speak for Alex when I write that this has been nothing short of a profoundly moving, eye-opening experience. And I fully realize, as does she, that she is just beginning to fathom what has happened over the last two weeks. Alex is quite keen now to explore this. We had a great chat after our walk through the halls this evening. I think that it means she is becoming less focussed now on physical pain and hardship, and she is coming into what will be the next stage of the post-transplant process. She is sounding more and more like herself, following her own (and not the narcotic and steoroidal) paths of reasoning. Oh yeah, she’s also hanging out in her room in a t-shirt, pajama bottoms, and a kangaroo jacket, with not a line connected to her as off midnight tonight. Now THAT’S reasonable.

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A milestone of sorts for Alex took place today. Her new favorite nurse Taryn gave Alex a spa day. The bravest redhead experienced the wonderful experience of a post-operative hair washing chez Toronto General. Yep, it’s been that long and Alex was literally itching for it. What better way for her to celebrate the news that going home is now on the horizon, huh?

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A highlight of tonight, beyond the sense of relief from the good news and a shiny new mane, was our nightly reading of your “comments” to Alex. As usual, she loves to hear your supportive words. They are an integral part of her struggle and healing here. You all mean so much to her !

Canalis Extractum: Day 13 (November 17, 2008)

In Uncategorized on November 18, 2008 at 6:23 am

Big Day today! Alex got the final two chest tubes out. She no longer has to drag around 8 feet of surgical tubing and two big plastic containers, and is already feeling the freedom that represents. Granted, she’s still tethered by the occasional IV line and her oxygen, but these are removed a lot easier than those tubes. They’re next in line.

The three resident doctors came in around 6 o’clock sort of like a combination of furnace repairmen, brainy game show contestants, and very bright healing men. They tease the new Japanese resident and call him “Professor”, as he is a real shining light brilliant fellow but sort of goofy at the same time. He has a rarry shick Japanese accent as well. He told me that in Japan they don’t even study Cystic Fibrosis in Med school (it’s a caucasian disease). But the other two fellows obviously really respect this guy. The doctors go in and out of rooms so fast they don’t like to tie up their long scrubs, so the outfits more or less dangle from their arms. So two of them joke with Alex, they put all their gear on top of her legs (which are under the sheet) and then they lean down beside her. They get her to breathe in, then out, then hold it and…pop.  Out goes the right one. Ploop. Out comes the left one. The stitches are sutures, and they simply pull them closed, cut the leftover stitch, apply some big bandages and that’s it. All this while the other doctor is just as thrilled checking out our retro/modern clock radio.

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Alex was thrilled. These guys really put her at ease. Told her she’d be up and at’em in no time, but to go easy for a couple hours. And then they were gone, the tubes and fluid-filled containers in yellows garbage bags. We both remarked on how future patients of these guys are going to be in great hands. Fantastic and charming bedside manner, but at the same time so clearly knowledgeable and on top of what they were doing. Oh yeah, the guy that liked the clock radio too.

The rest of the day was about resting up, and then a shorter than usual evening walk (without those chest tubes!) We sat in the room after and Alex just sounded so much like herself. We talked a lot about the metamorphosis that is slowly occurring. About trying our best to never take great things for granted, about living out all the things we’ve been dreaming about.  About getting out there and singing and playing and having a blast. See what I mean? She sounds just like herself.

You’d Better Watch Out, You’d Better Not Pout…Day 12 (Nov. 15, 2008)

In Uncategorized on November 17, 2008 at 5:18 am

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If Alex’s hospital room was a condo, it’d be advertised as one that has a million dollar view. Great northern exposure looking out to the House of Commons, a person can look out and see the weather, Queen’s Park Circle, and all manner of goings on. Today is no exception, as her room also afforded an excellent view of the 103rd Santa Claus Parade!

I got over early so as to avoid the traffic, pedestrian and vehicular. The shot above shows an eager Alex waiting to see what the next float might bring. She enjoyed the parade, in particular seeing the police horses at its front. She was, however, stricken with more than a wee bit of sadness as she misses her pony Gypsy terribly. Hey, I told her, before long you’ll be riding her like you haven’t been able to for years. That cheered her up somewhat, but I know that in the back of her mind is the thought that she won’t be mounting up for almost half a year. This from a woman who rode her horse every other day. She misses touching her amiga! 

Well the multitude of penguins, polar bears, clowns, marching bands, twirlers and myriad other participants in the parade cheered her up considerably. And oh yes…the big fellow in the red suit was a thrill for certain. We couldn’t really hear much through the hospital windows so we listened to Alex’s Christmas record. She is so very proud of how she put this record together, and equally proud of the stellar musicians who she gets to work with. She’d say “Oh Drew…what a violinist!” or ” Listen to Ross play that thing!”. These guys mean the world to her, so it was really great to have them “performing” for us as we watched the parade. Not to mention hearing the bravest redhead sing!

 

Bird's eye view of the Parade

Where's Santa? Where's Santa? Where's Santa?

 

Previous to the parade we’d made yet another good walk around the hospital. Alex is getting stronger by the day on these walks. She even tried an incline this afternoon. Said she could feel it in her legs. I was proud of her and I told her so after she’d returned to her room with 96% oxygen saturation. That and watching a two hour parade took a lot out of her, so I left her to nap for a couple of hours.

I returned a few hours later with a pizza from our favorite joint, Terroni. This was the first bit of “outside” food that Alex has eaten. She savoured it, and I did as well. Accompanied by a nice limonata, I could see that the days of hospital food might be coming to an end soon. I will bring anything I can into her to get her eating and strong, so I look forward to more dinner dates at Casa General. I read Alex the latest round of messages that you all have sent in in via the “comment” box. Lots of great encouraging words, everyone! It really makes Alex feel good to know that many people are looking out for her. Thank you.

Oh yes, before I forget…on the subject of the limonata accompaniment. Limonata is a sparkling Italian beverage. Quite intense and tasty, a little goes a long way. It’s also quite gaseous. It made Alex issue an enormous belch, something the nurses here heartily endorse, as it gets rid of harmful internal gasses. I usually sort of cringe when Alex does this at the table at home. She says she does it because she “hangs out with so many musicians”. Yeah, sure. Well, she burped so loud we started laughing and she laughed so hard it made her cry. It made her cry because she thought it was funny, but also merely that fact that she could burp and guffaw made her really emotional and happy. Plus she was in pain. She laughed until her stitches caused considerable discomfort. And of course that made us laugh even more. She wanted me to share this with you, by the way. It was truly a landmark bit of wind on the guts.

 

So after dinner we took another stroll and Alex’s “numbers” were good again. The main goals over the next few days are:

1/ find out results of her broncospcopy in terms of rejection

2/ get the chest tubes out to allow her more mobility

3/ get “titrated” or weaned off the oxygen nose prongs

4/ physio! physio! physio!

Stay tuned for the week ahead and we shall how the story unfolds, folks.

Communique Sunday

In Uncategorized on November 16, 2008 at 9:53 pm

Hi All,

Just a quick note to let you know that things are going smoothly the last 48hrs, and that Alex wants me to pass on some “house keeping” information to you.

Many of you have written to me wondering if Alex is reading your comments and well wishes on a computer. Alex doesn’t really have access to the floor computer right now because she is “isolated”. As I’ve written earlier, this is a new safety protocol currently in place with all CF transplant patients.  As such she is not allowed to share any equipment with other patients, including the computer. She also cannot answer your questions and concerns online at this time, though she eagerly awaits the time when she can personally communicate with all of you. ‘Til then, I have been dutifully passing on each and every comment that you write to her. 

I’ve also been informed that some of you are having difficulty sending your comments in. If this is the case, please feel free to email your regards to Alex in care of me at runmountain@hotmail.com. I’ll print them out from there for her as well.

Lastly, I am happy to say that Alex is now able to receive cards, letters etc (and is energetic enough to read them and enjoy them!). She has asked that you send these to our home address rather than the hospital (hectic place), and I will hand deliver them to her at the hospital. Our mailing address is:

letter

 

Cheers,

Tom

Bam!: Day 11 (Nov.14, 2008)

In Uncategorized on November 15, 2008 at 7:58 pm

Sorry for nodding off on you all last night. Yesterday proved to be a long and exhausting day for all of us. In my particular case I was running on only three or four hours of sleep, thanks largely to my knuckleheaded neighbours who decided to party outside until 4 in the morning. On a Thursday. Geez, you’d think they were twenty-five year olds or somethin’, eh. Which they are. So I was not exactly firing on all cylinders yesterday. Well, having had a good solid 10 hour sleep last night I will attempt to get you all caught up on Alex’s progress.

Yesterday Afternoon (ie after Alex wrote “Howdy Gang”)

As Alex wrote yesterday, she had her broncoscopy in the early afternoon. She maintains that despite the anxiety going in approaching it, it was actually one of the least rankling experiences of her day. The procedure went smoothly, and from all accounts the doctors said her lungs are looking good. They took about ten tiny pieces of tissue from her lungs, and will be processing them over the next few days, encasing them in paraffin wax, slicing thinly and examining them under a microscope. Until then, Alex proceeds “as if” she is being treated for a rejection. That is to say, she’s being megadosed (more on that later).

 When Alex back into her room, rolled along on her bed by two orderlies, she was told that there would be a change up in her pain management program. They’d taken away her push button morphine, and intend to move her to pills instead. There are, no doubt, many reason for getting Alex off of the pump. Many well-thought out ideas, I am sure. That made no difference to Alex as she became very upset that she would lose some control over her medication. In fact, she was pretty much terrified and furious at the same time.

Let me paint a picture for you. A patient returns to her room after having a camera and a robot knife pushed down her throat. She is coughing up little blood clots from where the tissues were excised. She is attached to to chest tubes (fortunately many of the IVs had been removed) and is still dependent on us to move those tubes (actually small hoses connected to drainage containers or boxes) so that she can get around. While she has been absent for this procedure they have also disengaged the IV that puts the pain medication into her body, and discontinued the morphine prescription for a less effective one. Oh yes, the stitches around her chest tubes throb with pain when she moves around. Not a pretty picture, correct?

Alex was very angry that she was not consulted about the switch up in pain management, and she got her nurse to get the “pain doc” to come by. We knew that this would mean hours, not minutes. While we waited it seemed as if people started flooding into the room like a yellow-scrub clad river. First Gary from physio came in. Good guy and always an encouraging part of the day. Then a couple of other nurses doing tests. Then a resident doctor. Nope, he can’t control the push-button meds, that’d be pain services domain. Alex was getting really rattled and pissed off. Then the shrink arrived.

The timing could not have been worse. Alex had apparently contacted her social worker Ursula the day before. Ursula is a really down to earth straight shooter, and Alex always appreciates her candour and no-nonsense approach to transplant recovery. She also grew up in the house across from us on Mitchell Avenue! (Small world…err…town). She’s a gal from the the ‘hood. Alex had hoped for Ursula to ease her mind a bit, perhaps to recommend some drug-free ways to relax. Maybe point her to some people who could help her in this regard. Sounds like she might have sent the wrong envoy…

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Maybe it was too busy in the room. Maybe the stars were just not aligned in proper fashion. Might have been a slight case of “roid rage”. But Alex blew a gasket anyway. She yelled at her and said “I don’t need a psychiatrist! I need control over my medication! I’m in pain!” The psychologist continued in a calm tone. Told Alex that she was there for her if she needed help, needed some cognitive or behavioral strategies to help her cope. That sort of thing. Alex smashed her fist into her hand. It actually sounded like a punch in the room. “I. do. not. need. a. shrink!”, she yelled. “I need my button back!” It was really hard for me not to laugh. I would be doing exactly the same thing as Alex. I would want control over pain medication as well, because we both know that when you are hurting the last thing you need is to wait for a nurse to find a prescription, get it to you, and have it dull your immediate pain in less than 20 minutes. The psychologist told Alex that that push button medication is the domain of pain services, but if she wanted to talk about it… 

I stepped in and got the handsome psychologist lady to the door. I told her that Alex is not usually so agitated, and that she might want to return on Monday to chat with Alex if she thinks it’s necessary. Or if Alex thinks it’s necessary. Also told her that obviously Alex is an articulate and self-providing woman, but that she is currently enmeshed in a situation that is frustrating her beyond measure. So we bid her adieu.

I came back into the room and Alex, Connie and I had a good laugh about the situation. Alex said that she really didn’t think some chick in a silk blouse and $800 glasses was going to help her much today. Or anyday for that matter.

I guess the psychologist did pass on some of Alex’s concerns to Dr. Hepperman, as he came back to the room a little later (once the dust settled) and assured Alex that her pain management would be somewhat different (ie. none-patient controlled) but that the team would still respond to each and every request Alex made for pain medication. He also talked to us about how the drugs would get into her system, and that there is still the IV option if she wants or needs immediate relief. The doctor understands that Alex has always been excellent at controlling the many CF drugs she had/has to take, and also realizes that most of her anxiety stems from a loss of control in this respect. It was good of him to come in and straighten this all out for Alex. It lightened her spirit.

Well after this fracas Alex rested up with her mom. They watched the Sex in the City DVD and I took my leave for a Beer in the City.

Last night I got Alex up for a walk. She did great, and her sats were great too. It is very quiet on the floor after 9pm, so it sort of felt like a nice date. When we got back to her room I was really starting to slow down (body and brain-wise) from lack of sleep. That could only mean one thing…The Russian nurse arrived without knocking (Alex says all the Eastern European nurses do this, for some reason). She turned on all of the lights as bright as they could go, and proceeded to do what she had to do.  Dressing changes, blood sugars, meds. All this around midnight or so, but I felt like a mole in the midday sun. Alex seemed to take it in stride.

After the nurse was done we just tried to relax and sit in the dark. It was hard for Alex to settle down as not only was her mind racing from the days events, but she was also surfing a wave of heavy duty steroids. She had the munchies, she was talking really fast. She didn’t seem very tired at all. Just sort of vibrating. She finally started slowing down a bit when some of the sedatives and painkillers comingled and hushed the steroidal wave. It was hard to leave her knowing that she wasn’t quite close to slumbering, but she told me to go home and get some rest before I turned into a zombie. 

Today: 

Today Alex’s mom Connie hung out with her for most of the daytime hours. I slept in and did household chores that have been left for 10 days or so. I came by for the “night shift”, a time of day which Alex and I both enjoy as the floor gets a little quieter. If all has been organized properly before the nurses’ shift change, and the ducks are all in a row, we can have a relaxing time. It worked out that way tonight. 

We got Alex’s medicinal needs all settled early in the evening. I got filled in on what had happened through the day. She had a good conversation with Dr. Hutcheon (one of our favorites) concerning what had transpired over the last 48 hours or so. He had some encouraging things to say. Mostly of the “there are bound to be a few bumps” variety. There was some trouble with Alex’s picc line in that her arm swelled up around it. They were worried that she might not be able to get her steroids delivered this way. Dr. Hutcheon arranged for an ultrasound of the arm on Monday to make sure everything is okay. For now she is receiving her meds through YET ANOTHER IV insertion in the back of her right hand. My wife, the human pin cushion !

Lots of physio through the day. Another good walk (her longest yet, with the best O2 saturation as well). When I arrived (previous to our conversation above) Alex was just starting to take a nap, so I started reading a book and before you know it I too was having a snooze as well. We both woke up nicely refreshed, and began a fun and mellow evening.

Our nightly stroll on Floor 7. This, of course, was done for Alex’s physiotherapy. But the walks are also starting to reveal to us the little culture that is the transplant wing. We see the daily routines of the nursing staff, say howdy to other patients in their rooms (the ones that are ready to speak), and pursue a very strange investigation. Alex has been hearing music almost constantly. The same songs, as if they were on a playlist. Modern pop music songs that she doesn’t really like all that much. What is strange is that no one else hears them. That’s not as odd as it sounds; Alex has extremely sensitive hearing. She describes them as they appear to her ears, and thinks perhaps they are coming through the ventilation system from another part of the hospital. One in particular that she keeps hearing is “We Are the Champions” by Queen. But there are others, all almost exclusively pop music. It’s intriguing her and driving her nuts at the same time. So we are constantly searching to find out if one of the rooms has a radio on all the time. Hey, it passes the time, eh.

Our walks are becoming more and more extensive (and not simply because we are looking for the source of the music). On a more profound note, we stopped for a time and looked at the “Wall of Heroes”. This is a group of photographs and short biographies in memoriam of those who’ve donated their organs. It is extremely touching, and one cannot help but be moved to stand there in front of these generous souls. It’s also pretty striking to read how full of life these folks were. Despite their different backgrounds, almost every person was described as vivacious, fun-loving and caring. I cannot say enough about how much a difference these people have made by this final most thoughtful act.

We got back to the room after a time and got Alex settled onto her bed and decided to watch one of our favorite British TV shows on the DVD player. It’s called The Mighty Boosh. I’m not going to begin to describe it here, but it’s funny and charming and always makes us laugh. In fact, sometimes it makes Alex laugh so much it hurts. She still is not capable of her big laugh yet (you know the one I’m talking about), but she is most definitely working her way up to it, and it’s fantastic to hear her. At one point, though, we did have to stop the movie to watch the SNOW FALLING DOWN outside the hospital. Yep, a snowfall with thunder and lightning at the same time. We both love when this happens, so we took some time to sit in the dark and watch it come down. A beautiful sight, even though it portends the arrival of Winter.

Alex was ready for sleep earlier than usual tonight, so after our evening together I bid her a sweet dream or two and headed home with the snowflakes twirling all around me.