...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!