Back on the Blog–Why the Hiatus?

 

St. Patick's Day 2009 Webcam

The last year hasn’t seen much action on this blog.   Part of that is because the experimental heart surgery I had in Jan of 2007 really did work.  It was meant to buy me time and it did.  Only a couple hospitalizations and one ambulance ride.  No defibrillations.  Most excellent!  But there is another reason why I stopped writing.

 

In preparation for my open-heart surgery I took an online course with Baylor University to understand exactly what, and how, my heart was going to be remodeled.  I presume as a result of that course I was offered a subscription of sorts to a Cardiology journal–which of course I took.  Since then I have been receiving weekly summaries of articles, studies and reports.  One came in June of 2008, Heart Failure Patients Often Overestimate Their Own Life Expectancy.  I read that and wasn’t surprised to learn that doctors often either don’t talk about prognosis or present an overly optimistic prognosis.  My own doctor at OHSU, at my first diagnostic visit, sat down and spoke these first words to Judy and I about my condition:  ”Let me tell you how you’re going to die.”

I didn’t get a “prognosis.”  But I left sobered, clear that my life expentantcy was abreviated.  I did more research in the months and years after that and prepared myself emotionally for a shorter life.  That approach has left me more free, more honest and more sensitive to the people and world around me in a near deliriously joyful way.  That hasn’t obviated fear or sadness–not entirely, anyways.   So I’ve written much over these years in this blog in talking about mortality and how it feels to live on this edge.

Now, back to that article about prognosis.  The study, in order to measure patient’s understanding of prognosis versus actual prognosis, had to have a baseline for calculating heart failure patient’s prognosis.  For this the study relied on the Seattle Heart Failure Model.   Since my records are easily accessible through OHSU, I simply l0gged in and got the necessary stats and plugged them into the model machine.  And I got an answer.  A date, actually.

So, what is that date?  This is where I stopped writing in the blog.  My commitment has been to be transparently honest in what I write here.  And I have lived up to that standard even when it was embarassing or silly, maudlin or manic.  This date, which I know is just a calculation and not a death sentence, was really fascinating to me.  It gave me a concrete thing to hang onto and forced me to be even more proactive about taking care of business and relationships NOW.  But I couldn’t write that date down.

Judy has absolutely no interest in knowing my prognosis.  Makes sense to me and I have and will honor that.  But, then, what do I write when many days find me measuring today against tomorrow–not quite counting the days, but aware of diminishing returns.  So I stopped writing.  Every time I sat down to post to this blog, I thought about prognosis and it’s fascinating repercussions to me.  Please don’t send me comments and notes about people who have lived for decades with heart failure, or how “it’s not how long you live, but how…” or variations on any of those themes.  I’m not obsessed with prognosis.  I don’t fear it.  I will love beating it.

But it is there.

I talked to some friends about this when they asked when I was going to blog again.  My symptoms have returned and I can feel my heart turning back toward failure.  They want to know what’s going on.  Judy sat there through some of these conversations and at one point said, “Write about it.  You don’t have to put the actual prognosis in there.”  And so I’ve been letting it tumble around in me for a week or so and knew I would sit down again and begin writing.

 

Mike's blog of living with Heart Failure

Here I am.

New look for this new part of the journey.

To mark this point I have published the entire first part of this story, Feb 2006 to last August, 2008, in a book entitled Glass Heart:  Mortality Knocking…Part I:  Heart Failure.  It’s done and out and you can see it or purchase it from MikeAshland.com.  It includes EVERYTHING:  your comments and notes and names and, well, the whole shebang.  This blog post begins Glass Heart:  Back to Life…Part II:  Heart Transplant.

So, how am I doing?  I’ve been feeling my heart slide back for the last couple months.  More nitro, more out-of-breath, more fluid retention.  When I came back from Mexico I developed quite an ugly right leg–swollen and black and blue and green.  After sonogram for blood clot and x-ray for trauma, the diagnosis was edema.  My heart just isn’t quite keeping up with how fluid circulates  in my body so, like a freight train dropping a string of cars in the railyard, my circulation dumps off some of the load before heading back up my legs–no doubt planning to come back for the rest but never quite having the capacity to catch up.

It’s not ugly anymore, but clearly I’ve got some fluid building up.  The biggest sign of that was last night.  Waking up out of breath and having difficulty breathing.  It’s happened once before.  Back when Jude and I had just moved to Oregon, on our second night.  I woke up unable to breath laying down, but could almost catch my breath as long as I was upright.  It’s hard to believe I ignored that and worked my ass off for the next few months harder than I have ever worked before–and survived!  Well, in-a-matter-of speaking.  I did end up with an Ejection Fraction of 11% and in ICU.  But I survived!

Last night it wasn’t as bad.  I got up, caught my breath, and then propped myself up on pillows so I could breath.  We’ll see if it returns tonight.

John and Rox and I did run over to Nordstrom’s Rack for a big sale.  I had enough time to eliminate almost everything when my body went weird on my.  I suddenly felt VERY sick, almost nauseous, and was afraid I was going to pass out.  So I found John and told him we need to go home, hoping that I wouldn’t have another public 911 session with ambulances and fire trucks and EKG patches and intravenous….well–you get the picture.  We made it home and I felt better after a shot of Nitro.  (I’m now on a liquid spray pump that has longer shelf life and acts quicker than the old pills–I highly recommend it!)

So I’m hitting nitro every day, fluid is backing up in my system, and I can feel myself sliding back toward transplant.  I will need to be significantly worse before I get on the list.  So pray for the repeal of helmet laws or a nationwide OptOut Donor program where your parts are donated unless you opt out.  More parts, healthier transplant operation because we wouldn’t have to wait until we’re near death to get one of the rare organs available.

Thank you to all who rode with me on the first part of my journey.  Look for your names in the book because, if you commented or visited then you’re in there.  Don’t let publishing in the future inhibit (as if any of my friends could be inhibited…) your comments.

Now get back to work.  Spring has nearly sprung.  There are flowers to plant and there’s green beer to drink!

Go n-eírí an bóthar leat.