Happy Thanksgiving!

04Oct

Thursday and its Physio day! I am brought to a semi-conscious state around 4:30 by the sound of multiple sirens approaching and (thankfully) passing by our area. It’s too early and there is no alarm going off, so I toss myself back to sleep. About 25 minutes later I become vaguely aware of the smell of smoke, then toss and turn for another 1/2 hour before deciding that I definitely smell smoke and am not having an aroma dream of some sort. I get up and head out onto the balcony to see if there is anything to be seen nearby (i.e. within our courtyard or in the limited skyline). I see only the grayish light of pending dawn and hear a few muted voices of those up and out early with their dogs.

I turn the TV on to see if there is anything being reported about a fire nearby. On CityTV the Breakfast Television show is in full swing from the studio that overlooks Yonge & Dundas downtown. Sure enough, there is a fire near George and Dundas streets, south of us and the prevailing winds are coming in our direction. An abandoned house is completely engulfed, the apartment building next door to it, evacuated and is currently having it’s windows poked out by firemen inside, trying to rid it of smoke. Fortunately all humans are safe and a few cats who had been squatting at the burning house have been rescued, given oxygen and seem to be fine. This is not the first fire at this address in the last few months, but will be the last by the look of the blaze!

I know that Jess is only a few blocks south of the fire location but it’s way too early to text her. I wait for a respectable hour (7:06 - I know she is usually up early) and text her “Are you fully smoked yet?”  Immediately (7:52) I get a response - “What does that mean?”  Because of the wind, she has been spared the smell of smoke, which is a great relief. Or as Brad says, “She sleeps like Shrek...” and hasn’t noticed. She sends Lindsay out on the balcony to check, but there is not a sniff in the air!

We text back and forth about clinic and her uncooperative sugar levels yesterday, then I confirm our departure time for Physio and we sign off. When we arrive to pick her up, she isn’t in the lobby waiting (which she usually is) so I think something must be up. I text that we’ve arrived and get out to wait for her and Bonnie (her Godmother and current support peep). The elevator opens and there she is...and here she comes...no, she stops...takes a step...stops...and I see her shoulders heaving and know it isn’t a good breathing day!

I knock and the concierge opens the door to let me in so I can help Bonnie get her to the car. She assures me she’ll be fine to do Physio once she gets to sit down in the car for awhile...I look at Bonnie who nods that she doesn’t have the same level of confidence about it, but off we go. the turtles left us in their dust on the way to the car...Bonnie carrying bags and sweaters, me pulling Squeaker and Jess holding onto my shoulder to prod me forward (couldn’t have done it without her help).

Within a block of TGH we stop for the traffic light chatting about the crazy risks the cyclists take here, when Jess turns to look to the right and yells “OMG - look! Wait, no! Is the window open?” We all look and see a dozen bicycle cops sitting in the lane beside us also waiting for the light. 

Now, the window had been up so they hadn’t heard Jess scream, so she promptly rolls it down, smiles her Princess smile and then in her best breathless voice croons “Hi Guys!” They smile and nod, a couple say hello and then Carman also roles his window down. Now they do a double take - twice - at Jess with her cannula and Carman in his Venturi mask. As we pull away, I’m expecting the full force of biking copdom to come down on me for illegally transporting too many pre-transplant patients in one vehicle!

As predicted, Physio is a grind - by the time I get there after parking the car and running a quick errand Carman and Mark are resting between sets and Jess is sitting on the floor coughing. She sits on the floor because she can get in a protective position (coughing this much hurts) and we’re also convinced (and tell our PT when she comes to check on Jess) that she does it because it gets her more Princess attention. she is soon up and pouting because Carman has done his squats and he and Mark think she should give them a pass today. Of course, she’ll have none of that, so Carman asks me to give him the weights back and they do a few together. A little physio activity for you to watch this short video (you'll have to rest your ear on your shoulder)...

The other high point was seeing Jessica (Mark’s daughter) so soon after her wedding! She has promised to bring her photos next week, as she expects the album to arrive on Saturday. Can’t wait to see them!

Our PT has banned Jess from the bike for today (the only way to get her to ease up) so she and Bonnie head to the waiting room to pass the time until we finish up. After bidding Lindsay farewell til next visit with Jess, we make our rounds wishing everyone a Happy Thanksgiving, then grab the cheesecake that Mark’s wife Diane made for Jess & I and head out to grabba java with the ladies. Once everyone is in the car, coffee in hand, Carman comments on how nice it was that Diane sent us all some cheesecake. Jess and I are promptly all over that idea, noting that her container says “Jessica” and mine says “Pamela”. There is no “& anybody else”; et al; or any other notation to indicate it should be shared in any way!!!

The pout is on...

...and we will share. Thanks so much Diane - you’re a gem!

We are heading to Peterborough, to spend the weekend with Alex, Birdie, Mark & Roxanna so the blog will be on vacay until we return.

Many blessings on each of you and we hope you enjoy your weekend however you may be spending it!

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03Oct

We have our clinic appointment today and the weigh-in reveals that Carman is holding steady, fluctuating within a one pound range week to week, which is great. We just don’t want him to loose weight at this point. It appears that the extra supplement drink each day (3 Ensure/Boost daily) is helping.

We are due for a 6-minute walk test in the next couple of weeks and next week we have testing:

• ECHO
• CT Scan
• Pulmonary Function

The doctors tell us that from what they are seeing thru physio reporting, things are status quo - no new issues, which is good and we just continue to wait our turn for transplant. This is as we expected, so is good news. They also ask us how we are managing in TO, so we share with them what we are doing with our Physio friends, our monthly Games ON! night, going to a movie this week and having each other over for dinners. The bottom line is that we’re told “keep doing what you’re doing”.  Then...

I take a new approach and ask the Dr. to explain the consequences of inaction...yes Dr. M & Mary, although he has repeatedly promised not to, Carman continues to faithfully avoid physical activity on non-Physio days.

Acknowledging what you should be doing and then not doing it is (in my book) like drinking yourself into your second or third hangover. I’ll help you the first time, but after that we both know what causes them and once you make the choice, I firmly believe you should be allowed to accept the consequences - and I’ll go ahead and let you do that...on your own. I do not have the sympathy for self-inflicted sickness gene.

For the most part, I have come to terms with this (i.e. I no longer ask - read nag - him to go for walks) - it is his health and ultimately his decision. The idea that it impacts anyone besides him is a fruitless discussion. The weights I scored for him from our condo’s free-cycle shelf sit untouched, exactly where I put them once I had sanitized them (by his chair). The activity journal I bought for him hasn’t been touched since we came to TO and could be sold for new if we remove the 6 pages he has written on in the 18 months he’s had it.

I do, however, want him to be making as informed a decision as possible, hence the new approach. When the time comes for surgery I would like him to be as physically prepared as possible. And I’d like there to be no surprises (or complaining) about why the recovery process might be more difficult than he expects. 

We’ve all experienced the hard work and time it takes to build muscle strength and tone (which Physio is doing for him since we came to TO) and to increase the efficiency with which the muscles absorb oxygen from the blood...but conversely, we know those same muscles (and our stamina) can go to pot at light speed! 

The Dr. acknowledges that Carman is more tired and sleeps more (10-12 hours a day), because  the disease is progressing. She then explains that daily physical activity (the kind that raises the heart rate for 15-20 minutes) is an essential part of preparing for surgery and all data indicates that it helps decrease recovery time as well. Patients who maintain an active lifestyle are up walking and feel stronger much sooner than those who don’t. 

I’m witness to Carman’s struggle each week, when we head to Physio on Monday, after 2 days  of being a chair potato...(unfortunately NFL games are scheduled back to back on Sunday, and one must watch them all) doing the same thing each weekend and expecting a different result come Monday morning...not working from where I sit!

So...maybe I should to talk to our young Physio friends (all females) about Saturday & Sunday Rollator Races and see how that changes his physical activity level...