Tuesday, 29 April 2014

Have yourself a lovely summer, they said

Dr. A. said while recording notes, about me, very advanced COPD, progressive bilateral emphysema, currently STABLE!  


The meeting with Dr. A. and Ester lasted about an hour.  Nothing hurried or rushed.  They are very methodical.  They remember who I am, what is going on with me.  They touch patients.  They listen.  I love these two.

My lung numbers, FEV1 and such, are pretty much unchanged from last time, and the numbers are highest since last spring. 

 We think I had six heart attacks during the spring and summer of last year.   Three times between April and June last year I had what I thought were severe breathing attacks that lasted perhaps an hour or so each that I was able to ride out without losing consciousness. Another took place a week or two before the main event that put me down, I wrote about it in late August.  Then the one that put me in the hospital at the end of August, and another that took place a few days later while I was in the hospital.  None since.  None of them had anything to do with my lungs as I assumed.  Heart attacks they was.  That being said, the latest echocardiogram from February shows modest improvement in the magic number (for the transplant folks) LVEF1.  Dr. A. says I hit 40%.  Dr. Poirier said thats the number I need as a minimum.  I am probably somewhere around borderline.  Questions about building my heart up were politely deflected.  I did not press.  I think they are hopeful.

The tumour, growth, dare I say, cancer, is stable and unchanged over the last year.  Now it has to remain that way for another year before I will qualify for a lung transplant.  I feel confident it will stay that way, and, until I am advised otherwise we shall nevermore call it a cancer.  My lungs have many lesions, this is just another.  No biggie.

Just so we kept on a roll I asked the Dr. please, pretty please, may I have my scans at the Jewish?  Can you please save me from the complete failure to communicate that results every farking time when I get tests at the Lakeshore?  Yes.  Joy.  A cardiologist please.  Yes again.  Everything now happens at the Jewish General.  Everybody on the same page for the rest of my life.  No more wasting months getting information to the right place.  I like that a lot.  Now, even the ambulance goes to the Jewish General.

So, chill for the summer.  Doctors orders.  My high fat ice cream prescription has been refilled.  I gained and maintained eight pounds over the last couple of months, enough to make my BMI peachy perfect.  No appointments for four months.  However I do have immediate access to Dr. A. through Ester if the need arises.

I slept last night right through.  Not a lot has changed since yesterday in reality, but I feel quite a bit different.  I have nothing to do other than keep doing what I have been doing.  Ester called me an iron man yesterday.  Just keep doing what you are doing.  I am far more active and stronger than they would expect, even though it feels otherwise to me.  I have adapted to not being able to get out, but I don't like it.

I doubt I will drive again.  I don't think that would be in anyones best interest.  Fear of losing consciousness while driving will not go away.  Even coughing fits, which happen multiple times a day now, can last a few minutes and are entirely debilitating and come on with no notice.  I so love driving.  I love, love, love driving, anytime, anywhere.  I am done with you.  Thank you Autobhan.  I love you.

This remains a transplant blog.  I had my doubts yesterday morning.  I went to the hospital yesterday to get buried.  The bastards said, not so fast.  

Hello Aunt June.  Hello Sis.  Hi Cousins, nieces, great nieces and nephews.  See ya tomorrow for muscles and beers, Wayno and Wilson.  The quiche was wonderful Lana and Brenda!  Stay safe on the road Gary!  Hello Kimmy!  See you all soon Quebec Lawn Bowlers!  I'll be watching.


Monday, 28 April 2014

True story

Appointment with Dr. A. late this afternoon.  I don't care much.

Sleeping horribly lately.  Haunted by hate.  Do not comprehend.  

True story:  Owed money (2K) by ex employer (family).  Wait the legally mandated nine months before asking the government to help collect.  Collect.  Watch as family, friends and acquaintances receive emails advising them I run a grow op.  Watch them get copied on an email to my two nieces telling them that I am trying to harm their family and to cease having contact with me.  Contact stops.  Years pass.  Heart broken still.  Honest.  True story.  Not one word out of place.  We were good, loving influences.  Nothing short of evil this is.

I feel better now but I imagine my blog will now be savaged again. Death threats and wishes for my expedited death are expected as the order of the day.  Tonite I will sleep.  Tomorrow I will exorcise as I WISH.  Fuck the trolls.  Fearless I are. 

Regarding that true story:  Everybody saw.  True story.

I simply had to spit this bile out.  


Tuesday, 15 April 2014

Inside, upside, all around and down again

If I let myself feel anything right now nothing good would happen. Staying numb, not thinking, is the thing, at least for now.  If I get all logical and think things out in my current state of mind the only conclusion would be to get serious right now about planning out the end game of my life.  I have not done that beyond knowing that the best case scenario if I want to avoid becoming stroked out, locked in and the other horrible fates that await me, is going to be suicide.  Any other choice and I will risk having things happen to me that I am more afraid of than I am of dying.

Nicole and I have talked about "it", and I have broached the subject with my family and friends.  Everybody seems to understand.  No one has suggested that my thinking is cloudy on the subject.  I want to live!  I think everybody recognizes that.  I am even willing to suffer quite a bit more than I already do, to live a little more, but there must be a limit otherwise I risk losing control of my own fate.  Go massive heart attack!  Go team!  Just not yet, please.

By time I left Dr. P.'s office yesterday we were smiling at each other, I had calmed down.  Notre Dame had not sent him anything. Two months and nothing.  At least I have data from him to send to Notre Dame, but it will amount to nothing, I am no stronger than I was and the prognosis only gets worse with time.  He did not remember, even with my file open what drugs he had prescribed. He asked me for my drug list, I said no, use my chart, you tell me. It took him ten minutes during which I grew increasingly angry with him as I caught him out on various points which indicated he was virtually unfamiliar with said chart.  He told me, no kidding, honest, that if I was in Lakeshore for something and surgery was indicated he would sign off on it.  I pointed out that ALL of my pneumologists assure me that I would not survive any surgical procedure.  He replied that, well that's your lungs,your heart is up to it.  He don't know it yet but his ass is fired.  Dr. A., when I see you later this month we need to coordinate this circus.

One thing that Dr. P. said that makes sense:  It may be time to apply to other jurisdictions, specifically Toronto.  Montreal is known to have really strict criteria, Toronto is more flexible. As if.

I would have had no way to end this positive today, but, my old friends Wilson and Wayne just called and they are coming to drag my sorry ass out to lunch at a brew pub.  Happy Daze.  

I love you all.

Wednesday, 2 April 2014

I dunno

It is probably safe to say I survived winter now.  I would not have bet on it six months ago, but hey, I have never been much of a gambler anyway.  I turned 60 a month ago.  Sixty I never thought I would see.  Family history and a decade of hell bent self destruction seemed to ensure I would not.  Here I am, though. Mentally I am stronger than I ever have been before.  I know who I am and I love that person.  I have learned my lessons well.  I don't have any answers as to my direction at the moment.  I feel lost but I have not stopped searching.  I lack a dream, something to work for and towards.  Perhaps that is too harsh.  I do have something and that is Nicole.  Making sure she will be ok now and in the future.  For sure that is my main goal in life now and forevermore. I mean me, myself, I.  What do I yearn for?  What do I want beyond a good death?  Physically, I feel perfectly powerful until I move.  When I do, all of my energy is instantly vaporizes into nothing.  Empty.  Fall down in a heap empty.  I am constantly surprised by this.  Constantly.  Every time I expect to be like I was.  Strong, coordinated, quick.  I am not.  This is too rude.  Like a baby, helpless in a heap.  The infernal optimist will be fooled again and again and again.  There is seemingly no end to the surprise my weakness brings, each and every time I get up.  Outright stupidity and self deception or indomitable spirit?  Indomitable I say!  I have no dream, no yearnings and that is bad, bad, bad!  You can't look forward without a dream, and if you don't look forward you are dead.  I am not dead.  I need a dream!

I need to write everyday, honestly without ego, with perspective. I have been asleep, wasting my time being introspective and closed. Open flower, open.  Spring is here!  Live!  Love!  Blow up that bubble! Now!