Monday, 7 May 2012

2012 Tests for Transplant Surgery Assessment

March 14, 2012 finds us leaving the east coast and heading west once again...for Toronto, ON where we will be attending appointments at Toronto General Hospital. Carman will be assessed to determine whether or not he would be a good candidate for transplant surgery, and if he is, would this be the appropriate time to "list" him. We made the trip in stages with a stop to spend a few days with DJ, Matt & Teddy; then DJ will join us for the trip and appointments in TO.

On Thursday evening, she and I saw West Side Story at the NAC with a couple of her friends and although we enjoyed the production, we all decided we liked the movie best. Carman was very tired from the travel so didn't venture out at all this visit (we later determined that he was not getting enough oxygen with his pulse concentrator). On Friday evening Matt and I visited his parents, Steve & Val, who hosted us for one of Val's famous feasts. DJ made dinner at home for herself and Dad before she headed off to her night shift. Our friend Hayley picked me up on Saturday morning and took me to Westboro for breakfast at Baker Street Cafe and then a little trolling in the local shops, where we found some treats for Teddy. As happy as Carman was to see Hayley, I think Teddy was even more happy - nothing to do with the treats I'm sure! On Sunday, once DJ got home from her shift, we headed for Toronto and she endured an uncomfortable sleep in the back seat nestled in with pillows, a sleeping wedge, pulse concentrator, E tank of oxygen, snacks and study materials (prep for an exam she was schedule to take in April).

While waiting for me to park the car, DJ and Dad checked into our hotel in downtown TO - one that provides patients and families with a discounted hospital rate on their rooms. When I came up from the parking garage Carman said "I know we're in the right place; I saw a bellman go by with a luggage cart full of oxygen bottles instead of suit cases!" Many of the other guests were, like him, sporting a cannula (Kan-ye-le) [http://en.wikipedia.org/wiki/Nasal_cannula], several feet of tubing and pulling some form of oxygen therapy equipment.

Sunday evening - after much needed naps; we met up with the kids, Kyle & his girlfriend Laura (who travelled in from London), Jennifer & her boyfriend, Max  (who live in TO), our nephew Mark and good friend Iain for dinner near the hotel. It was great to see them all and get caught up on what everyone was doing.

7:30 a.m., 19Mar12 finds us checking in at TGH, and heading for our first appointment of the week. The volunteers and staff here are second to none, very professional and helpful beyond measure. Our first stop was to acquire a chair for Carman, as we knew we'd be winding our way thru halls on various floors and towers at the hospital - far too much walking for him. He was noticeably nervous as DJ "pushed him around" all day;  afraid of not being in control of the chair and running into other people but soon realized they were more likely to walk into him - texting and walking = someone distinctly unaware of anything else in the hallway! By Friday, he was able to sit back and relax...looking like the king of the world!

By the mid-morning, Carman was visibly tired and the team secretary informed us that we could find tanks of O2 in the physio department and at the hospital entrances. DJ went to get one for him and within a couple of hours...presto! Pink Daddy was back... 

It turns out that the pulse concentrator was just not delivering enough for Carman's needs anymore. This was confirmed when pulmonary function tests revealed that his lung function was now down to 37% and his O2 sats kept dropping into the low 80's/high 70's any time he exerted himself. At this stage, his requirement is continuous flow oxygen 24/7. Currently he is comfortable with a 4L/min flow while at rest and between 8-10L/min during any level of activity.

We had a full week of appointments and were at the hospital from around 8:00 each morning until mid to late afternoon each day:
At every turn, the staff were friendly, patient-focussed and very informative - taking extra time to explain procedures and answer our questions. It was our good fortune to meet other assessment patients June & Jessica along with a few post-transplant patients in for follow-up appointments (two were 6 mos post-surgery and one lady who was 6 years). All transplanted patients said they would definitely do it again...great to hear!

As well, we enjoyed the smiles and friendly service from the ladies at Druxy's at the TGH East Entrance, who prepared our fresh fruit salads each morning - they were delicious!

I'm so grateful for the wonderful help provided to me by Mariella at Mississauga Vitalaire, who helped me coordinate delivery and pick-up of continuous flow concentrators and E tanks of O2, not only to the hotel in TO but also to DJ's house in eastern ON. A special thanks to Alex of VitalAire, who delivered extra tanks to the hotel on his own time - driving during rush hour all the way downtown from Mississauga! Matt was our coordinator at DJ's, ensuring delivery of the right equipment and that everything would be in place for our arrival there Saturday night. Thanks to their good work, Carman was able to get the rest he needed at night and the mobility he needed during the day.

Along with the fatigue, there were moments of levity (perhaps in part due to our brain drain). One of these came on Wednesday when we were discussing the Thursday schedule and when we might be able to meet up with Wanda. No doubt the team knows how the patients are feeling by Thursday, as they schedule it as a shorter day, ending around 2:30. While chatting about the appointments Carman said "...and our last thing is the 6 minute walk, I wonder how long that will take..." Now DJ and I knew exactly what he was trying to say, but immediately started to chuckle and then I replied "I'm going to guess it'll take around 6 minutes..." so we were all laughing hysterically by the time the cardiologist entered the room to meet with us!

By the time Friday rolled around, we were all tired, somewhat overwhelmed and excited at what we learned about transplant surgery; happy with the team we'd met; impressed by the care provided and anxious to go home - I took this photo once we were back at the hotel and had stopped in the lobby for a snack and beverage   :o)

Along with the medical appointments we had a full social calendar as well. We were lucky to be able to coordinate visits with family and a few friends during the week. While Carman wasn't able to participate in all visits, he, DJ and I appreciated every single one of them! 

Many thanks to our visitors (who came from TO, Burlington, Oakville, Barrie, London and Listowel) friends Lynette, Henry, Wanda, Scott, Dexter, Krista and Iain and to our nephew Mark, niece Carrie, sister Joyce, sister-in-law Debbie and cousins John & Roberta for making time in your busy schedules to visit and cheer us on during the week - you truly kept us going (Joyce, thanks for the Wednesday walk in fabulous weather and Wanda - extra thanks for the Thursday walk and for pushing Carman along to dinner)!

A special thanks also to Matt, for all the Teddy texts from home, which kept us smiling!



And back home in NB, a big thank you and hugs to my folks and my nephew Tyler, for meeting our respiratory therapist, Joanne, from VitalAire, and ensuring that all the oxygen therapy equipment we needed was delivered to our home before we returned!

Now we wait for a few weeks. There are a couple of tests to arrange locally when we return home and then the Transplant team will complete their review and analysis of all of this testing...

Last year the team performed over 100 transplants and expect the total to increase this year. We hope to be among the recipient group!




Information on Organ Donation

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