Recalling July & August

Adam, Shilpa, Hélène,
Elizabeth, Marie-Éve
Kristy & Derek

Hi - it's been awhile!

While you haven't had anything to read on the blog for some months now, rest assured that we have been busy. When last I wrote we were packing up our little condo to become nomads for the summer. We started with a wonderful Canada Day weekend in Ottawa (hosted by DJ & Teddy). Carman had booked dinner with our transplant friends on Saturday evening, but imagine our surprise when I got a text from Hélène telling DJ and I to "come out front, we need a photo". There they were, rocking it out in the back of the longest stretch SUV limo I've ever seen! These people know how to do the town in style!

 Canada Day itself, brought us a Potluck BBQ on the deck with many Capital friends.

We hit the road again and did some house sitting for friends in London, ON for the month of July. This gave us an opportunity to play the real socialites and reconnect with our family, friends and neighbours in the area (where we had made our home for over 30 years, before retiring to the east coast).

Carman and "all the girls
he hugged be-fore!"

We both got in a couple of rounds of golf, and the ladies I played with at Greenhills organized a potluck evening (thanks for hosting Peggy!). Our days were filled with coffee date, lunches and dinners with family & friends - memories to treasure! We managed a dessert night with 3/4 of our International Dinner group (we missed you B&R)

Me, Lee, Mary, Linda, Carman & Terry

and even a lesson from my special sorella, Elisa on making cannoli - yum!

From London we moved to Peterborough to spend some time with family and be close to Toronto for Carman's 6 month post-transplant assessment. While there, we were able to enjoy

Alex' garden

the peace & quiet of Alex's garden, a couple of cottage trips on the Trent and in the Muskokas and a Trent River cruise, complete with the lift-lock adventure, with our transplant friend Jenn. After a lovely afternoon onboard, we joined her and husband, Kevin, for dinner at their home. 

John, Jane, Carman & Me
at their cottage

Carman, Roberta, Carter
John & Pamela
Muskoka

Busy lunch bar, Muskoka

Entering the lift-lock to
descend

Carman & Pamela
on the boat
taken by Carter

Carman, Jenn & Pamela
River Cruise

Jenn, Kevin, Pamela
Carman

This social life has me tuckered out!

At his 6-month assessment, Carman received kudos for his good recovery progress and the blessing to head home - to quote our NP, "everything looks great so just keep doing what you're doing!" This caused me some concern, as the past several weeks had brought swelling in his feet and an excuse to skip the physio routine. I didn't think we needed encouragement in sitting down and keeping the feet up. The effects revealed themselves during the testing though, Carman was disappointed that our friend Hélène was able to beat him at the 6 minute walk test, obviously keeping up with her exercise program made the difference. Those few metres had him whining big time!  :o)

Highlights of that trip included catching up with our transplant community - lunch at the top of the CN Tower with Phyllis & Ashley; bumping into friends in the halls at TGH and getting together with Retta & Rob at the hotel.

Ashley & Carman
try the glass floor!

Phyllis & Carman
Lunch, Top of the CN Tower

Pamela, Retta, Rob, Carman
Ashley & Phyllis
21Aug13

More to come...

Choosing to Give Life...Are You Registered?

Updates on what we've been up to for July and August are still under construction but we wanted you to know that we've just completed Carman's 6-month post-transplant assessment and received a big thumbs-up! from the team. 

They are very pleased with his health and recovery progress and encouraged him to "keep doing what you're doing". This made me panic a bit - because we've been doing a bit of travelling to visit with family and friends, so he hasn't been completing his exercise regimen as he should, nor has he taken on any of the life-chores he was unable to do before surgery - "doing what he's doing" doesn't include these important things. Exercise is a key component of his recovery and continued good health.

Not to worry though, Atilla will soon have him home and happily doing those things he has greatly missed for the past few years, like:

• carpentering (also known as working the Honey-Do list)
• exercising his elbow by drinking lots of water to flush kidneys and reduce those swollen feet
• cooking (including meal plans, grocery shopping & putting away, meal prep, consumption and clean-up)
• exercising (20 min daily on the treadmill and bike)
• cleaning (including dusting, mopping, scrubbing, sweeping, and beating the rugs...but no vacuuming just yet)
• exercising (stretches and free weights)
• laundry (including sorting, washing, drying, folding & ironing as needed - not just dumping it on the floor by the machine and hoping it will end up in the drawer, ready to wear)
• exercising his right to have a nap as needed, but not more than 2 hrs daily
• pampering Pamela (as she's never dreamed possible) in gratitude for the great care she has given him

Oh yes, he may also be seen doing some biking, cycling, golfing and walking. He'll just have to find a hobby for his spare time!

In the meantime, we wanted you to know about this...

Organ and Tissue Donor Registration in Ontario

• Since the launch of the Gift of 8 movement in April 2012 - 185,430 people have registered consent to organ and tissue donation.
• Users (including many transplant recipients) have created more than 467 personal and 115 organizational web profiles on BeAdonor.ca to inspire their families, friends neighbours and co-workers to register consent for organ and tissue donation. 
• During 2012:
• 1,468 tissue donors enhanced the lives of thousands of patients, (this includes gifts of corneas to restore sight; heart valves; bone and skin for grafts). 
• 253 deceased Ontario donors contributed to 796 organ transplants (this includes 385 kidney; 189 liver; 104 lung; 74 heart; 23 kidney-pancreas; 20 pancreas and one small bowel transplant). 
• As of December 31, 2012 
• 78% of Health Card Holders (16+) are NOT registered
• Of the 9 Million NOT registered 1 in 4…. THINK THEY ARE - because they "signed a card years ago"
• It now takes only 2 minutes to “Check One’s Status” or “Register” online - anytime, any day OR
• if you do not use the internet, you can register at the time you renew your Health Card at Service Ontario

There are currently 1,489 patients listed and waiting for life saving organ transplant - mothers, fathers, sisters, brothers, aunts, uncles, cousins, grandparents, friends...your family member or friend could be one of them. There are many others who need organ transplant but are not yet listed.

Check it out for yourself at: Organ Donation Statistics

Have a look at Carman's page, read his story and check your status.

You could help someone go from helpless to hopeful!

11Feb13
Unable to do personal care

21 hours post-double lung transplant

15May13
Up & down 27 flights of stairs!

Speaking about Organ Donation &
 Transplant Surgery with staff at
McCormick Canada - 08Jul13

TYD = Thank you Donor

...and a heartfelt hug and thanks to your gracious family who followed through on your wish to donate. We would not be where we are today without your precious gift.

We are sending you blessings and gratitude every day...

The Test Leave

I have spent the past week packing, purging, wiping and vacuuming (the carpet & the storage bags - they're like Spanx for your bedding, clothes and towels - squishing huge piles into skinny packages for loading in the car).

Today we are leaving our condo - the place we have called home for the past 390 days. A place of...

• temporary residence, but home nonetheless
• meeting new neighbours (thanks for everything Karin, Gord & George) 
• exploring a new environment and all it has to offer (thank you Village)
• walking everywhere (thank you Toronto for close proximity and outrageous parking fees)
• meeting new friends (thank you Treadmill Room)
• catching up with long-time friends (thank you all for visits!)
• weekly yoga (thank you Sylvia)
• Breathless Buddies monthly Game ON! socials (thank you Celebrity Place for a facility for hosting these wonderful times)
• depending on strangers (thank you Omar for oxygen; Sam for access & assistance; Parves & Ulke for being the extraordinary concierges that you are - and in the process becoming our friends)
• waiting for transplant (thank you lung team of TGH!)
• family - thanks for all the visit from our children, brother, sisters, parents, nephews and niece
• watching Carman's (and our Breathless Buddies) health steadily decline
• excitement, as each of our Breathless Buddies "got the call"
• incredible grief and sadness at the loss of 3 of our Breathless Buddies (we miss you dearly Heather, Ibrahim & Ruth)
• Getting the Call! for Carman to receive the most precious gift of new lungs
• recovering from surgery
• adventure - testing out the new lungs by walking around the 'hood and to & from the hospital
• fears - at a mysterious cough that nobody can explain
• joy - the cough has gone
• a busy calendar - 4 days a week for routine appointments following surgery has made the time fly by
• hope - for what lies ahead

It has been a strange mix of joys, sadness, fear and courage - this process of packing up and preparing for the next step. To start our new journey away from the hospital community, to be self reliant in the hopes that nothing "goes wrong"- our friends who have left have all experienced what I call "the ice flow effect"...set adrift for a few months, until the next round of appointments... to be in an environment where you aren't surrounded and supported by people who know your story.

We leave shortly on Carman's longest trip yet with his new lungs - headed to Ottawa for the Canada Day weekend. From there we'll head west again for a visit with his brother, sister-in-law & nephew in Peterborough. From there, further west and back to where we started, in London for a few weeks.

We'll be back to Toronto for the 6 month assessment in August, and will then begin our long journey home to New Brunswick - with stops along the way to visit our Breathless Buddies, of course!

Our internet will be intermittent over the next several weeks, but as I'm able I'll keep you posted. In the meantime, thank you for following us - your support has held us up when we couldn't stand alone. Bless you all!

Pamela & Carman

02Jun13 - St. Jacobs, ON
on a visit with Ann & Brian

The Official Boot!

Carman had his follow-up clinic and battery of tests on Wednesday this week - he flew solo for this and all is good. 

Although we still don’t know the cause of the cough he hosted for 3 weeks, it appears to have moved on and his pulmonary function has climbed its way back to where it was before the cough arrived. That’s right - he has regained each of the 30 percentage points that went into hibernation while the virus partied on in his lungs. He still requires is naps (post-transplant fatigue is due to a combination of medications, unrecovered muscle mass & strength and all the trauma the body has experienced thru the transplant itself) but is no longer sleeping all day. He has given that virus The Boot!

At the end of a very long day - 7:30 blood work, followed by Xray, PFTs, Support Group meeting, Dr. appt and clinic (2-5pm) he was officially bid a fond farewell along with a “and don’t come back till we call you for your 6 month assessment!” He will go back of course...on June 26th, to pick up the final package of paperwork including requisitions for regular blood tests and PFTs, which will be done elsewhere and forwarded to the team at TGH.

We have our condo until the end of June and will then reside with family and friends until the 6 month assessment comes around in August. Post-transplant recovery is another journey, not a “quick trip back to normal” so we take great comfort in our decision to stay close by for a couple of more months. The Docs have said they would never tell us we could return home to the east coast if they weren’t confident of Carman’s health status, but are pleased with our decision to stay.

We’ve chatted with several post-transplant friends who indicated that many of their recovery issues occurred within the first 6 months after transplant. This is not lost on us, having just experienced a great series of 3 month assessment tests and appointments followed within hours by a quick turn of events and falling pulmonary function. They’ve also asserted that although they felt recovered between the 6 and 9 month mark, they experienced a noticeable improvement over that feeling by the end of the first year after transplant. The issue in recovery is having no benchmark to measure personal progress with. Each day brings something that hasn’t been experienced before - whether good or not so good, you are constantly wondering “what was that twinge?...is this normal?...why am I so tired today, when I felt fine yesterday?...have others had this feeling too?...

It is only the passage of days, weeks, and months - during which you become accustomed to your regime of weekly-adjusted medication; closely monitoring your temperature (twice daily), blood pressure and pulmonary function (daily); and rebuilding your strength and stamina thru daily exercise - that will bring you a sense of normalcy and peace of mind.

This week we thoroughly enjoyed a Game ON! event; a couple of dinners out and a wonderful visit with our friends, Jessica & Brad (back from NS for her 6 months assessment); Marie-Ève & Gisèle and Kristy & Derek (who timed visits from Ottawa & Montreal respectively, to coincide with J&B being here)!

R: Susan, Jack, Carman, Brad, Lindsay, Derek, Mark, Gisèle
F: Jess, Lori, Pamela, Kristy, Alisha, Marie-Ève

It’s so good for them to get together to compare notes. While each person’s illness, surgery and recovery has it’s unique attributes, there is a strong sense of camaraderie and a great level of comfort in sharing stories around these issues and hearing someone else say “Oh I thought it was only me that felt that...”.

Last night we had dinner with five of our friends and noticed during our after dinner round of UNO Spin, all three who’ve had transplants (8, 6 and 4 months post respectively) had swollen feet - this has now become known as the Fat Foot UNO Championship Game. And I’m more convinced than ever that although the glass-top table in our condo does give the illusion of more space in the room - I will never buy one of my own!

We let Brad win again...
because he is so spoiled!

...when you have a glass-top dining table

Jessica & Brad - looking great!

...so far behind, I think I'm in the lead!

01June13

19May lunch on Front St.
a 2 km walk from home
and back again!

The title is a reference to my childhood track & field days - others have circled me and are way ahead, but I've been too busy to notice them pass me by. I am so far behind on our blog, I may never catch up, but wanted you to have an update of sorts. 

Since walking from ICU to the ACU unit a mere 21 hours after his transplant surgery, and being discharged to come home 15 days post-surgery, Carman has been rocking the recovery! Although his leg strength will take months to rebuild, he has been actively working at his physio program between the Treadmill room at the hospital (where he can chat with recently listed patients about the program) and the gym at our condo building. His treadmill is now at a 2-2.5% incline and a speed of 4 - many of us would have to run at that rate).

Bruins vs The Leafs
Guess who won?

15May - Physio Week Stair Climb
at TGH,up and down 27 flights -
in 9min 3sec

Over the last couple of weeks, he has developed a cough that is triggered by deep inhalation or exhalation (which he must do for his spirometer test each day). We've yet to determine the cause of the cough. At first it was suspected that one of his blood pressure meds was the culprit (cough is a common side effect) so it was stopped and he was given a different med. Post transplant, it is common for patients to have either high blood pressure or high heart rate, which must be controlled by meds for anywhere from a few weeks to becoming part of the daily med regime for life.

They don't know what's going on with Carman and this cough yet, the cough sounds worse and his pulmonary function has dropped to below where it started following his transplant (down 30% in the last week). Fortunately it isn't an ongoing cough, and lasts only a few minutes when triggered. His bronchoscopy & x-rays are clear, no fever or anything produced by the bronch & sputum cultures that would indicate an infection or virus. 

He completed his workout in our condo gym on Tuesday, but hasn't been up to doing much since then. At Wednesday's clinic the doctors put  him on 2 new meds, then on Thursday, took him off 1 of them (since the flu virus culture was negative and the med had been a preventive measure). 

Carman continues to be fever free and his pulmonary function has crept up 1/10 of a point over the last couple of days - both very good things. He is sleeping most of the time the last few days, just has no energy to do anything.

The team here is wonderful and we know they will check and double check every angle to determine what the issue is. We're back for more Blood work, PFT, CT Scan & clinic on Monday to help them determine what is going on and what we should do next.

We were so excited (and on tenterhooks for several hours on Tuesday), at the news that the team had received lungs that might be suitable for our friend James. His surgery was successfully completed on Wednesday, May 29th...while we were at clinic). Now he is fighting thru the early post-transplant days of pain management, recovery and regaining his strength. Because of the length of time (23Feb until surgery) he was on ECMO and confined to ICU (bed or chair), his recovery will be much longer that what Carman experienced. We have not met anyone with more tenacity and focus than James and look forward to sharing walks with him and his lovely wife, Adena...

I saw this sign on my walk yesterday and had to scoop a photo of it. The transplant community sign for lungs is to form your hands in the shape of brackets and place them upright just below your collarbone. This is definitely a sign for James!

Adena has posted an update on James, I know many of you are following their story and we're so grateful for your prayers.

Here is a link to her blog entry:  http://breathtoblog.blogspot.ca/

Love, hugs and mountains of gratitude for your support in following our journey!

First Week Home - Part 2

07Mar - Thurs - Physio Finale for Jess

Our day starts with breakfast out. They are doing repairs to the plumbing in our condo building today, so the water will be shut off between 9am and 4pm. We prepare some extra bottles and jugs of water to have on hand and decide to head to The Blake House for brunch. Many thanks to Jim and his staff for accommodating us with selections from the lunch menu, a couple of special order breakfast dishes, and for getting us in and out before the lunch crowd even arrived!

Left - Dad, me, Paula and Carman & Mom on the right

After brunch we return home to gather Carman’s gear for the Treadmill Room, while Dad, Mom & Paula collect their bags and summon a cab to head to the airport for their return home. Our short visit has come to an end...we’ve had them here for about 3 days and have been at the hospital all day every day. Our visits were confined to the evening but we managed to get in a couple of card games, a dinner of Mom’s great cooking (supervised by Paula) and some of her home baking (sampled by Paula on the way from the oven to the containers).

Today is a bittersweet day in The Treadmill Room - the last physio session in which the Squat Squad will be together. Yes, Jessica is in the preparatory stages of heading home to Nova Scotia and today marks her last day to work out with the Squad and Carman’s third day of being a Green Card holder!

Jessica, Mark & Carman - peddling so fast -
their colourful kicks are blurred!

All patients working in the Treadmill Room, have a personal card that outlines their program. Pre-transplant patients have a yellow card while post-transplant patients use a green card (the program is slightly altered for post-transplant so it isn’t just the colour that’s different).

 

I don't know why they look at the
menu board, they always order
the same thing!

Our Squad does an excellent workout and while Mark and his daughter Jessica must get on the road home before rush hour, our Jessica and Carman head for their java treat at, you guessed it...Starbucks! This adventure is prefaced by one more ride down the ramp on the Rollator.

08Mar - Fri - Muscle Study Follow-up

Today we must return to TGH for blood work, as a follow-up to changes in Carman's medication dosage. We like to arrive before 8 to beat the rush and avoid a crowded waiting room. This is followed by a Tim's breakfast sandwich, then meds. When the phone alarm goes off to indicate it's Med time, Carman retrieves his med bag. Without looking up, he asks, could you pass me the drink I brought to take my meds with...you can tell from this photo of where it was sitting, he has definitely become a-look-after-me diva. It's well within his reach, and the man eyes are still working!

Mid-moring, Carman has his first post-op appointment with Polyana for the Muscle Study he is participating in. 

It’s a beautiful day, and we have lots of time so we decide to take the Rollator for a walk to the UofT lab where Polyana works (just two blocks south of where we are). While chatting and waiting for the walk light at Gerrard and University, we hear the telltale sound of squealing tires and boom of a fender-bender. A van and taxi cab have met in the intersection. The van pulls to the median curb but the cab is going nowhere...bleeding fluids onto the street, driver side front tire askew and airbag deployed. Point of contact was front left fender and this cab is out of commission. The passenger gets out looking dazed. I get Carman to the median and head over to see how everyone is doing. The driver of the van says he is fine, the cab’s passenger is trying to make a call on her cell, while her cheek begins to swell to the size of a tennis ball (contact with the passenger door). A couple of students, out for a run, come over as well, and I ask one of them to call 911. The cabbie is conscious, tells me his name and the date when I ask and requests that I open the door. The charge from the deployed airbag has left the car filled with acrid smoke. I try the door, but the impact has crimped the hinge edge and I don’t have enough umph to yank it open. I head around to the passenger side and open the door to get some fresh air in. This hasn’t taken long, but by now the friendly Toronto drivers are all honking “hello, what’s the hold-up here?”

I call the cab company to let them know what has happened, that the cabbie is chatting with me but his car will be out of commission. The dispatcher is very concerned for him but I assure her we’ve called EMS and he agrees to call her later to let her know how he is doing. EMS arrive as I finish the call and fight their way with firetrucks and ambulance through the congested intersection - calling forth more friendly honking of course.

One of the firemen walk up to the car, and without breaking a sweat yanks open the door - cool! The paramedics help the cabbie out of the vehicle and over to the median. I give him my number, retrieve his phone and pager from the car for him and tell him I have to leave. He agrees to call me later, (which he did around 8:30 pm to let me know he and his passenger were checked out at the hospital and sent home).

I rejoin Carman on the sidewalk and we continue on our way, arriving right on time to meet with Polyana. 

Ultra sound of Carman's thigh muscle

Once settled, she takes ultra-sound pictures of Carman’s thigh and arm muscles and conducts resistance tests to measure the level of deterioration during his hospital stay. Because he was so faithful to his Physio regimen (even on the days when it was difficult just to get out of bed, Carman went to The Treadmill Room and did his program) Carman was up and walking the day after his surgery and by the time he was discharged from hospital 15 days post-transplant, he was consistently walking 5 laps per trip and 5 trips around the unit and corridor each day. 

one of those tough days
Jess offers comfort
June supervisoes

Muscle loss is measured by the muscular force output during a repetition. To execute these repetitions he is strapped into a high-tech chair which applies resistance when he tries to complete a rep. For the leg, he is pressing upward (away) against the machine’s resistance while his lower leg is restrained. His Peak Torque measurements were as follows:

         Nov12 Pre-transplant vs Mar13 Post-transplant

Right Knee (away)     171.9 vs 141.5

Right Ankle (away)      51.4 vs   48.7

Right Ankle (toward)    25.0 vs  19.7

Right Elbow (toward)   43.9 vs  42.2

  

 

He also completes the endurance test and in spite of my suggestion doesn’t think it necessary to take any pain medication, not even Tylenol before doing this last test. Mr. He-man goes the full distance on the endurance test (because he did that before surgery) and by the time we get home, is in pain along the full length of his incision. Skip the Tylenol, this one is going to need the hydro-morph!

Mission accomplished
the team strikes a pose

 

Remember this one? He went all the
way to the top level with
the weighted bar!