Friday, May 25, 2012
It is early, but I'm awake to stare at this blinding screen, because I didn't sleep well. In other words, I could no longer stare at the ceiling (and prevent my mind was wandering). so, I made a cup of coffee, poured a simple breakfast of cereal and goat's milk, and decided to type a few lines before heading to work.
(sidebar: I really should write about work more often. I am working with some very interesting children. It can be very challenging, but I am learning a lot from these experiences).
It seems that it is only during difficult times that I find myself with a need to write. My pile of adolescent journals should speak to that (and dark poetry written on scrap paper strewn throughout).
The truth is that James and I are in pre-marital bliss. We are both glowing with joy at thoughts of sharing our lives together. We talk about the future with optimism and hope. We will be grandparents together. We will hike the West Coast Trail. We try to believe that survival is all about attitude. We tell ourselves that James will be the exception.
The problem? We are not immune (pun-intended) to the realities of Cystic Fibrosis and post-transplant complications. James has had an exceptional year with (relatively) minor difficulties, and the most incredible gains in all areas of his life. We live our lives with gratitude for each and every day, but that doesn't change our resolve: James will not be a statistic.
We weren't prepared to hear those words on the answering machine: James has rejection. It is acute rejection. It is only level one. (What does that mean?). It often is not treated, because it resolves on its own.
We don't know a lot more. The rejection showed up at his 1 year post-transplant bronchoscopy. We were not informed. It wasn't a concern. Then, James' spirometer readings started to decline steadily. It started with a 5% drop at his recent pulmonary function test (PFT). This progressed to several mornings with a 10% decrease in lung function. Yesterday, James had a 30% decrease. He went to get batteries in hopes that it was a malfunction of the machine. It wasn't.
We called the transplant team and waited. I was scared, but I was (and am) trying not to panic. Acute rejection is treatable. It was caught early. Toronto is the best place to be. I am telling myself this over and over again. The doctors do not seem to be concerned. That must be a good sign.
The message systems allows for communication with the transplant team. We leave messages. We receive messages. We don't get to talk. We have to trust the team.
The wait for the phone to ring was reminiscent of James' 9 months with that pre-transplant pager. I remember the anxiety. I remember the uncertainty. Would the call come in time? It didn't matter the length of the wait. It always feels too long. It always feels urgent. The difference? We were waiting for good news. James would be getting his lungs. Now? We are waiting for information and a plan.
We are still waiting. The doctor was unavailable yesterday. James needs to go for more tests, but it is not safe for him to be at the hospital. Fridays are clinic days for individuals with burkholderia cepacia. It is a scary bug. It is highly communicable. It can have devastating (and often life-threatening) consequences.
We might need to wait for Monday. We are good at waiting. James waited 10 months to qualify for transplant. We waited 9 months together with a pager on his belt. We were done waiting post-transplant. James was ready to live. We were ready to live together.
We know that we can get through anything together. Our first year together was a testament to that fact. We will do our best to enjoy the weekend, and stay distracted. We are so grateful to be able to participate in CF Canada's Great Strides on Sunday. We both met our fundraising goals. It will be great to give back to the community.
That is all for now. I have to go to work, find distraction, and focus on the positive.