Sunday 26 January 2014

Thoughts after the call

I had a feeling last Thursday that this is the day I get the call. When the phone rang at 9:00 AM I yelled to Nicole that it was going to be the Notre Dame transplant folks.  It wasn't, but I was only off by a few hours.  They called at 2:00 PM.

"Meester Rouselle Micaratin is he you?"  I knew it was them.  I said yes.  I did not hear anything for a moment after she said "Je suis Marie Yanik de Centre de transplantation Lachapelle au Centre Hospitalier Notre Dame.  I sighed and gushed, eventually. She laughed gently.  I guess she is used to the reaction.

I sat in shock for a little while.  I was alone, Nicole napping, I did not want to wake her up.  I posted to G+ and enjoyed the reaction from friends.  Nicole cried for joy when I told her later.  

The quiet time is over, again. That lovely time when I do not have to push or struggle, just live.  

Who knows what is going to happen.  The odds are stacked against me, as it is with anyone who wants new lungs, but I already have beaten a lot of odds just getting to the front door of Notre Dame.  I want to live!

I have been imagining the surgeon's scalpel doing it's extreme work on me.  What is it like to wake up afterwards?  Will I survive the operation?  What if I mine is one of the many failures that results in a greatly reduced quality of life?  Am I really doing this for me? 

So far ahead of myself, really.  For now there is an appointment on Feb 25.  An eval process will be started.  The Late Dr. has provided me with a full file.  Most of what they will want is already done.  It will come down to my body chemistry, their tolerance for non biopsied slow growing tumors.

I had a discussion with Nicole yesterday about my cannabis use. I think there may be a problem with this.  I have time to stop using it and clear my bloodstream before the appointment.  I have decided not to do that.  I will tell them everything and see what happens.  I am prepared to toss cannabis out of my pharmacopeia if I must, but I would much rather not do so.  I wake up in the morning suffocating, coughing, sweating and fighting to calm my body and emotions.  I pop a few coco oil cannabis caps or a cookie and 90 minutes later I am smiling, talking, working and managing my body, mind and breath.  I will give it up if I must, but I would on the whole, rather not.

Overall, I would say I am feeling the first tinges of fear of the whole process.  Frankenstein came to mind a number of times yesterday.  I can feel the scalpels.

February 25 will be a long and busy day.  I have my second appointment with my new pneumologist at the Jewish General and a PFT (pulmonary function test) in the morning and the initial evaluation at Notre Dame at 1:00.  Between now and then I am supposed to have an echocardiogram and a CT scan at Lakeshore.
The cardio is a routine follow up for my heart after the attacks of the fall and the CT scan is hopefully to show the tumor is not growing.

I will turn my fear into fascination of the process.  I am going to learn a lot about a lot of things.  I will see fascinating technology and meet amazing people who want nothing more than to see me reborn.  

So, we have arrived.  Within a couple of months I will either be unlistable, listed or listable but not sick enough yet.  Not on the list but listable is ok.  You are going to get on it, eventually.  Most people who get listed get lungs, about 15% die on the list.  


It has been a wild ride kind of year.  First The Dr. tells me in early March 2013 that I qualify for a lung transplant.  I say go for it.  A month and a half later, a tumor whose investigation takes a couple of months, heart attacks a couple of months after that, followed by The Dr.'s death and my chart stalled on his desk just before Christmas.  It is all over now.  The answers will be here soon.  I will accept whatever comes, gracefully. 



















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