Sunday, April 7, 2013


I write to the background noise of beeping machines and high flow oxygen. We are feeling rather grey on this dreary and rainy morning. We get our hopes up for the weekends. There seem to be a lot more transplants on the weekend. We don't want to set ourselves up for disappointment, but there also needs to be a hope that seems possible, or real, at this point. I am not holding my breath, but I still sleep awaiting a phone call. It doesn't come. It doesn't come fast or soon enough. How long can we continue to go on? As long as necessary, I suppose, but it definitely does not get easier. The difficulty seems to increase with the knowledge that each day in the ICU comes with a higher risk of complications for both pre and post transplant. I can't ignore that reality. Otherwise, I would have to lie to myself. We could be here for several more months.

How is James? James is coping with incredible grace. He still has moments of complete fear, and waves of anxiety that leave him breathless. His kidney function is improving again (after some concern a few days ago). He has developed severe pain in his back, knees, and hips. Palliative Care is helping to manage his pain.

We continue to receive support from friends and family, and generosity and kindness from strangers. The transplant community at Toronto General Hospital is also an exceptional group of individuals. We feel very grateful to be so very loved.


  1. Hugs to wrap you up in comfort, strength & patience thru this trying time.

  2. Hang in there! Lungs will come soon.