Up and over: the trip back down…

It’s been a good run.  A darn good run!  Other than my open heart “remodeling” on the second day of the new year, I have gone a year without ambulances or hospitals!  Whew!  Last summer I rode my vintage red 1964 Schwinn Traveller into town and back–probably 12 miles with some hills coming back.  Zowee!  That was SOOO sweet.  Jude and I rode into town along the river several times.  So beautiful!  And so incredible to use my body like that!  I am so grateful for 2007.  A year that I married and a year of relatively great health.

It’s been almost exactly 3 months since my last post.  Thank you.  All  of you.  Who wrote to me and asked what was going on?  “When are you going to post again?”

I couldn’t.  The truth is my big experimental operation was meant to give me a few years before going back to needing a heart transplant.  And I got a year.  And stepping away from the blog was a way of facing downstream, away from reality.  I went back a few times when the chest pains scared the crap out of me.  Mostly because I owed those who so faithfully read this blog some truth.

Now the truth demands a bit more attention.  In the last few weeks and months my chest pains have become weekly events.  Each time I put that third nitro in my mouth (5 minutes between nitros.  911 on the fourth one…), I face dying.  I just do.  It’s nothing fancy.  Assuming I’m here at  home on the computer, I IM Judy with “Chest Pains” and pop the first one.  She’s in here before I get to the second, when I’m sitting fairly still monitoring my body for change and watching the clock click down 300 long seconds.  Then I pop another one and we just sit there.

300 seconds more.

We just sit there.  Death is knocking.  It’s right here in the room with us.  We look at each other.  I know Judy is scared.  Me, too…but I’m trying to stay quiet and calm.

At the third nitro visions of huge firemen and women and gurneys and machines and oxygen and EKG wires and being rolled up the driveway to the ambulance dance through my head.  I don’t really know what is in Judy’s head.

The seconds click down.  Often the pain and the incredible pressure just sit there, stubbornly.  The pressure is like a thick, tight rubber-band around the chest.  Pushing in.  The pain is not too sharp, but more like if your brother got ahold of your upper arm and dug his thumb in real hard until you said, Uncle!”  But saying, “uncle” is not an option.  Well, it is, but it won’t do anything…

Sometimes I give the nitro an extra minute or so.  Dumb, huh?  If I were you, I would wonder why anyone would temp the fate of death by even 60 seconds.  But I do.  And, so far, it’s backed off.   I haven’t made it to 4.  No 911 calls.  (The last big one was at the Barak Obama Rally here in Portland.  Catch my video on YouTube.  Imagine a gurney coming down the stairs in the stadium and loading me up….that’s where I was!

Well, for the last couple months I’ve begun to have more chest pains.  I get winded changing shoes or shirts, even start a little sweat.  My cough is back.  I get tired so easily.  And, last week, when Judy and I started with a new general doc at a closer OHSU clinic, when he listened to my heart he got a little weirded-out and said he wanted an EKG.  Now I have PVC’s every third or forth beat.  “Have you had these?”  “No.  That’s a new one for me.”

PVC’s are Premature Ventricular Contractions, or premature heartbeats.  I have them, now, every 3rd or 4th beat.  Not the end of the world, but a significant new thing when you add it to the other symptoms.

So I called OHSU and advised my Cardio people what was going on.  I went in this morning and, after hearing symptoms and listening to this new funky heart beat, Cindy (my head doc) ordered Chest X-rays and Echocardiogram for RIGHT NOW.  I got the x-rays and blood work-up done today and go in for Echo tomorrow morning at 11:00.  Some time in the next few days or so I will get my EF (Ejection Fraction), which measures how well my heart is pumping out the old blood.  My EF at my peak after the operation was 39.  Normal is 60 to 70.  Back at the start of this, when I needed a transplant, my EF was 11.

So what will it be?  Same?  Down?  Down how much?  This will tell a lot about the coming months as it seems like my heart failure and cardiomyopathy have worked their little vandalism on this heart and are taking me back down the road to transplant.  It was going to happen.  We just didn’t know when.   We’ll know more in the days to come.

Whatever, this is not virgin territory for me.  We’ve been there before and we knew we were going to return.

That picture at the start of this post is a statue of St. Clare.  My good friend Kelly brought it to my house today.   Knowing I can’t always get to church (I missed all the Easter and Triduum liturgies as I had no energy), Kel brought it so that I could have St. Clare here with me.  She’s from Italy.  Her nose is broken off.  There’s a few chips and dings in her.  She is much like me.  I will keep St. Clare until I am back on the upside of this journey, when I will return it to the Willhelmi’s, along with the Heart from the Whittiy’s, so that others can benefit from their grace.

I’m a little weary, thinking of what is ahead.  But waking up each day has been an incredible experience and I have not, for even one moment, forgotten that every second I have is a bonus second.

Thank you all for your prayers and thoughts and for keeping after me to post again.  You have made this trip a really wonderful one.  Now, if you will, take another ticket and get back on.  The train is leaving the station again…

Now get back out there and smell the sunshine!