The First Week on the List

A busy first week.

Met with the Transplant Program Coordinator and the surgeon on Monday. The briefing from the program coordinator was as thorough as you would get anywhere. Seventy five minutes of information about what to do, who to call, what to expect while we wait, when the call comes and what to expect after the operation. Some of this I knew but a lot was new. For example I thought that once a donor was located there was only a short period of time - 5 hours - to transplant the lung(s). We learned that the donor can be kept going for up to 2 days before harvesting and then the surgeons have 8 hours to transplant the lung after harvesting. This means lungs can come from as far as Alberta and Newfoundland.

I should be prepared for false starts - called in and prepped but then the operation doesn't proceed. This can happen more than once.


I was surprised to learn that they only use about 15% of the lungs that become available. Contrast this with over 70% for other organs such as kidneys. I also discovered that they blood match but do not tissue match. Not sure why but time and the lack of good tests may contribute to this.


The folks at Toronto General are doing a lot of research to improve the odds of successful lung transplatation. I have signed up for several research projects such as donating bone marrow from my sternum during the operation to see if stem cells play any role - positive or negative - in the development or treatment of pulmonary fibrosis. If positive, there is hope that they might be manipulated to grow new lung tissue.

Another study is to determine if a blood test can predict rejection in lung tranplant patients.

They are not sure if my operation will be a single or a double lung transplant. The reasons for doing a single are compelling. You can function perfectly well on one lung and my lungs are equally shot - i.e. there is very little difference between the two so there is no compelling reason for doing the right or the left. This means more flexibility. One lung is a shorter operation by about half - 4 hours against 8 hours - and is a different procedure so is less invasive. Given a healthy double set of lungs from a donor it is better to do two people with one lung each. I'm also the most common blood type so all this adds up to what I hope is a shorter wait.

Having said that - who knows! The average wait is 6 months but the standard deviation is huge. I heard the story of one fellow who was placed on the list and was called 2 days later. I bet that was a shock. There are all sorts of stories of getting called at three in the morning but the one thing that they emphasize is get down to the hospital ASAP. That, and, if you are in the middle of a meal, stop eating immediately.

More tomorrow about the pre-operation rehab program - three days a week working out in the treadmill room until I get The Call. Not sure I like the phrase "rehab" so I am going to call it physio!