Walking into a new and brighter life.

Walking into a new and brighter life.

The healthy me

The healthy me

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This I know.................

This I know.................

Friday, February 17, 2012

I got the news I have been dreading!

"It gets under your skin, life. ... It's a habit that's hard to give up. One puff of breath is never enough. You'll find you want to take another."
- Terry Pratchet, Hogfather

I found this quote this morning and it seems to fit.

Brittney and I went to my Pulmonologist's appointment yesterday afternoon.  I thought it would be a breathing test called FEV1 and then have the doctor tell me the disease had progressed and come back in 6 months to watch further.  I was dreading hearing that it had progressed, but I knew it.  I have felt it... I just didn't want to hear how much.

I have a entire page of #'s.  I have forgotten what they all mean.  I had forgotten as soon as I left the office.  I walked in damaged but hopeful that I would continue on like this, maybe taking things a little slower.  I left with actual words that scared the hell out of me.
Words like, one bout of pneumonia could kill you.  Without surgery or transplant your days are numbered, maybe a couple years.  
They will be sending my file to Stanford University and are pretty sure that I will be qualified for a surgical procedure there.  
That they will contact me, and if my stats meet their criteria I will go there for a few days of testing, then if the tests meet their standards I will either receive Lung Volume Surgery or a Transplant.  

I asked my doctor "If I were your wife, sister or mother what would your recommendation be?"  I told him transplant just scares me terribly and I would like to use that as a last resort.  That if I had any say in this I would like to do the Lung Volume Reduction Surgery first which would buy me 5 years or so, and then I could be listed for transplant.  He said after transplant he could say the average life span is 10 years.  He said people live longer than that, it will all depend on my body, my heart and how well I handle the anti-rejection medications.  
He also told me that I may want the reduction surgery first, but it will inevitably be Stanford's decision as to which will fit me best.

After the testing yesterday and the news I came home and told Bill and he had little reaction.  I want a reaction from him!  I did tell him that I NEVER want to hear from him again that "I deserve this because I smoked and he tried to tell me." And that "I told you so".  Then he found beer and started drinking so I went to bed at 7:30.  Not so much because I was so tired, but because I had a terrible headache (which I am sure was just stress caused), and I was beginning to have chest pain... which meant an anxiety attack was coming.  I took meds and was asleep by 8:00.  

I have been up since 2:30.  I was tossing most of the night, I couldn't shut my brain off and all I could do was think about surgery, what if I didn't make it through... how would Brittney and Layla take it and handle losing me?  You know the gruesome thinking that comes when faced with mortality!  I hate going to that place... but I can't help it.

My brother called not long after I got home from the doctor and like he knew something was going on he asked how I was doing?  So, after explaining things to him, he suggested I start going to church.  I have never been one to go for organized religion.  I believe in god and was raise in an Episcopal church.  I feel awkward about going now and asking for prayer only because I am  sick.  
I was glad to talk to him.  He said to keep him updated and we would try and move mom's memorial gathering ahead to maybe May if needed.

I can't imagine that Stanford will get back to me that soon.  I expect months.  We'll see.  In the mean time.... I plan to live.  

Like each time I get bad news... I need a few days to absorb this, to feel a little sorry for myself and to panic...... Then I will pull myself up and get on with things.  

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