Sunday, April 7, 2013

doing my homework: reading the transplant manual

This journey is not an easy one. It's an emotional roller-coaster for lack of a better metaphor. I've spent the weekend doing my homework. As someone who used to wait until the last minute to start and finish homework and assignments in school, I've done it again: waited until almost the very last minute to start serious reading on the (heart)-lung transplant manual for the TGH telehealth (video-conference call) intake appointment I have early this week. I have good reason to wait this long: when I first received the book, reading, discussing with my spouse and thinking about possibilities was pointless. It created anxiety and worry long before I needed to think about things. As a natural worrier, I found myself months down the road, tangled in a web of details that had almost nothing to do with the present moment. As someone who also (quasi) practices mindfulness, this was not good for my mental health. And so I put the transplant book away. That was a few weeks ago.

Since pulling it out this weekend, reading and doing web searches on heart & double lung transplants I have so many questions, mixed feelings and yes, even some anxiety starting to brew. My first thought is how this is going to be discussed with my spouse. Work is a great concern to her. She would have to leave the services which would mean an end to her career and our income/security. Ma belle doesn't want to sell our house, nor does she want to rent it to strangers. We would have no income, a mortgage, rent in TO (which even for a bachelor with roaches is more than our total mortgage here in this town). All of these logistical concerns come up, never mind thinking about how I would even get to Toronto. I cannot leave the house now due to my high oxygen requirements: more than all the portable oxygen compressors combined have to offer. I remind myself that I don't have to think of those things until I get a yes. If I receive a no from the TGH transplant team then I move full steam ahead towards the death and grieving plan. I've been slowly saving up for my burial (which I have yet to pay for due to my miscalculation years ago). My Sick employment benefits are about to end and I'm officially not eligible for my work's tong-term disability despite paying into it. They have a "no pre-existing condition" clause. I wouldn't be me if I didn't challenge it, so I will and hope for the best, because if the team does give me a yes (that I qualify for the transplants) then I will need the meager income and the decision-making will begin. Their yes doesn't infer one from me.

There are so many things to think about.

One but not all of the factors include life expectancy after such a serious surgery (for which less than two dozen are performed per year at the TGH). If I survive, I have a 50% chance of dieing after the first year. Risking my home, my spouse's career, my family, and dieing on the way to Toronto never mind on the operating table is a lot to wager for one year of life to live afterwards. I was happy and actually found myself hopeful when I read about the rare patient who celebrated 5 years of living after their transplant (right before the story continued with them usually dieing of kidney failure, diabetic complications, etc. as brought about by the anti-rejection/immunosuppressant medications that you must take for life). it was nice to dream for that short time, thinking about the places I still want to go see, the things I would love to do with ma belle. Some of which included a bike ride. I would love to ride a bike with her. I would love to kayak with her. Something I have always wanted to do but could never ever do, ever, is go for a run. We used to joke how I have somewhat of a runners' body and how I'm always so busy on the move doing something or other than she speculated that if I was able to, she bets I would have been a runner. you bet 'cha I would. To feel the freedom of moving so quickly on your own speed... I've never felt that and would probably cry every time I would do it if I could.
Oh to day-dream!