Tuesday, July 30, 2013

good news for a change

I have been neglecting the blog. I am completely out of the habit of writing. I have been composing in my head for the last week, but I haven't been able to get myself to start. I suppose it is wonderful. I no longer need a source of daily catharsis. We are insanely busy with hospital(s) for appointments, tests, physiotherapy, and so forth. We are loving on each other in between, and regaining a sense of normalcy and routine. It is so wonderful to share a space together again. 

This will be a brief version of an update, but I will definitely make an effort to get some photographs on here in the next few days. 

James is at physiotherapy three times a week. He continues to build strength and endurance. His determination is as strong as ever. He no longer requires a walking aid to get back and forth from the hospital. We only use the wheelchair for long distances. I continue to watch in complete awe. The changes are nothing short of remarkable.

We also have weekly Transplant Clinic. These are long days at the hospital with a succession of tests, and a lot of waiting around (and that is an understatement). There are no major concerns with James' health. His lung function is at 40%, and should improve with time to completely heal. There are also some pockets of fluid in his lungs that are indicative of months in bed. We expect this will also improve during the recovery process.

James doesn't have an official diagnosis of Diabetes, but it is a very common post-transplant complication (and for individuals with Cystic Fibrosis). We have been going to Diabetes Clinic for education. James is getting comfortable with managing his blood glucose, carbohydrate counting, and administering insulin. We are still hopeful that his blood glucose will decrease with a reduction in his steroids.

We are also being followed by the Cystic Fibrosis Clinic, G.I. Clinic (for Cystic Fibrosis), and by Palliative Care to manage James' medication withdrawal. Our calender is very full, to say the least. We are thrilled. You have to be alive to go to appointments. 

We are lighter in our steps. We are laughing a lot more. It is getting easier by the day. We are moving forward. We still function a single day at a time. We have gratitude for a lifetime. 


  1. So happy to read this! Two years ago I was also recovering in Toronto, and I think for that reason Toronto in the summer will always be a special place. Good physio to walk to Kensington for groceries or a hair cut :)

    On the diabetes, I have CFRD and take 3-5 units with most snacks/meals. For Rumble, I don't take any so be careful as it's designed to be low GI index.

    I hope your recovery continues to unfold smoothly, and that you get a chance to ride a real bike outside of the treadmill room soon! Centre island is only 10 minutes away by ferry, and it reminds me quite a bit of Beacon Hill Park. They have bike rentals there that are so fun and cruisy...

    Enjoy this time together as best you can, you certainly deserve it!


  2. Im so happy for you both...what a great team you make.....pleas post lots of pics...love you guys xoxox