Oy! There’s a snake in my leg!

 

snake tracks

 

 

A walk from the car to the door.  Weak legs, out of breath and exhausted.  So next week I’m going in for another angiogram, where a catheter is pushed up through my groin into the femoral artery and snaked up into my heart.  They’ll look for obstructions (I had 2 bypasses during my heart remodeling surgery 2 years ago) that might be causing my daily chest pains and then press further into the heart itself to test the pressure inside my ventricles.

I need to just put on my jammies and sleep for a day to get my energy back up.  I’m okay sitting, though really tired right now.  But any movement exhausts me and stopping every few hundred feet to rest just makes a trip to the store and adventure!

Arteries work better for bypass grafts than veins.  I have one of each and it’s the vein graft they’re most curious about.  If there is an obstruction in one of the grafts, the choice would be a stent (which was ruled out for me before) or open me back up and slap a new one in there.  I prefer the former, as I hate that whistling sound the ventilator makes in recovery….

I was planning to fly to Michigan for a couple days this week to spend some time with Claire at University of Michigan.  I wanted to be in her classroom as she taught, especially since I missed her graduation from George Washington U in DC because of heart problems.  But heart problems there are and flying right now is not considered wise.  Especially since I had two stops scheduled keeping me in the air for something like 6 hours.  After my swollen leg after Mexico I think it’s a decent pass.

So anyone who is waiting for something from me this week will need to stand down.  I need to rest in a big, big way and that includes sitting here at the keyboard.

I think this is my 11th or 12th catheterization, all of which I did fine with before and which I will do well with this time, I’m sure.

No improvement? I beg to differ!

 

Ventricular Reconstruction

I got a bulletin today about a report in the New England Journal of Medicine about a study involving the Ventricular Reconstruction I went through at the start of 2007.  Only one part of the study is completed, but it shows no improvement in clinical outcomes.  That would not be good news for me, except for the fact that my health was in a steep decline and I needed a heart transplant before the surgery.

 

Although I’m headed back for transplant, my ejection fraction improved to 39% after the surgery and my chest pains and shortness of breath decreased for a good year to 18 months as a result.  I was offered the experimental surgery to “buy” me a little more time on this heart, and that’s exactly what it did.  Perhaps the second part of the study results will reflect my own experience.  But I would take the surgery again in a heartbeat (no pun intended) if it would buy me another year or two like the last couple.

I’m hitting nitro pretty much daily now and I am surprised at what little things will take my breath away.  Standing up from kneeling at mass…oy, what happened to my git-up-and-go?  But I still don’t get any chest pains from exertion.  My farm animals arrive unbiden, as I lay in bed or on the couch, or while I sit at the computer or in a car.  Inasmuch as it’s daily, now, it’s not wuite so scary unless it’s the elephant and I’m taking my third shot.  Four is 911.

I have this picture of my tired little heart all scarred up and bandaged and on crutches, scrabbling it’s way to a finish line that neither of us can see.  There’s a video online of a girl collapsing with a broken leg before she gets to the finish line.  Once she’s across, a man helps her up, then picks her up and carries her away.

That’s what my heart needs.  Someone who will help it up and carry it for just a little while.

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.

4 months skating…

Last April 15 I ended my post promising to “tell the tale in the mornng.”  It’s night and over 4 months later.  Sorry.

Four months ago Jude and I went into the Apple store here in Portland.  I was looking for a new case for my iPhone.  We came out of the store and about 20 feet from the door a large farm animal landed on my chest.  I sat down on a wood slat bench with a thud and reached for my nitro.  Judy didn’t know what was happening until I reached in my pocket.  But, according to her, I was turning several shades of gray.

I definitely thought this was “it.”  Three nitros I popped and still that damn horse was laying across my chest.  I had stopped moving and tried to breath slowly, hoping my heart would calm down.  But it didn’t.  I took one look at Judy and told her to call the ambulance.

I was very scared.

Finally she got someone at the Verizon booth to call 911.  Byt the time she got back to me all we could really do was look at each other, not saying anything, holding back tears.  Finally “I love you” passed between us, just in case.

I don’t think the words had made it from my lips to her ears before the paramedics arrived.  Equipment flew around, wires were snaked into my body, somebody popped an aspirin into my mouth and gave me a mighty dose of nitroglycerin.  I got dizzy.  People stopped and stared.  Large blue men and women scurried around me–quickly, but with purpose–shouting out numbers and looking at each other.

Finally I was wheeled out of the mall and put in the ambulance.

Those paramedics arrived at my side 1 minute and 45 seconds after that 911 call went in.  They were “in the area” and bragging about that time to each other just before the ambulance doors shut.  I was still scared, but after two more hits of nitro the palomino left and one of those cute little ponies took up residence.

At the hospital it was insane.  I really mean, insane.  There were suicidal and violent people, cops and doctors scurrying everywhere while family members stood against walls and in doorways with worried, far away looks in their eyes.

I stayed in the hospital for a couple days.  No heart attack.  My EF was down.  I had PVC’s and bigiminies and my status was definitely changing, but I was not dying.  Cool.

It feels like I haven’t blogged for so long.  In some ways, I didn’t want to write about a downturn in my status.  I also got some news that I didn’t want to make public, even to my family.

In getting educated about my the experimental open heart remodeling back at the start of 2007, I took a continuing ed course from Baylor University and actually watched the surgery online.  Partly as a result of that course, I began receiving a journal of cardiology meant certainly for physicians.

One article I received had the headline, “Heart Failure patients unrealistic about prognosis.”  It was about a study of people with my diagnosis and test results measuring the patients estimate of longevity versus the clinical prognosis from a standardized calculation.  They tested the calculation and found it within 3% of actual longevity.  They found that a diagnosis like mine was almost exactly the same as a diagnosis of cancer, but that doctors had not communicated this, or the real prognosis, to their patients–who made life choices and decisions based on a false and unrealistic expecation of life.

The standardized calculation method was available to me, but required many test results.  Fortunately I had all these numbers and results in my own online medical records.  So I plugged them in.  And got a number.

It wasn’t a large number.

For these last 4 months I have looked at my life in an even more different way than these last couple years.  As my son, Brian, tells me, “You don’t know, Dad.  People live long lives when docs say they won’t.”  I didn’t tell him the number, and yes–he is right.  But I have come to not really care about that.  It simply is not a worry anymore.

Though some of you who know me would say I don’t edit myself much as it is, I have to say that editing myself or my life seems like an awful waste of time!  I delight in life every day and I try to be prepared each moment for an enormous change.

Maybe I’ll write that number down, here, one day.  Maybe I’ll wait until the day after that “expiration date” and laugh, joining the likes of people who move to mountaintops to wait for the aliens or the religious wingnuts waiting for the rapture who have to–at some point–just get on with it!

I’ve definitely taken a turn back toward heart transplant.  I have that old cough back.  I get winded getting ice out of the freezer some days or just trying to get my iPhone out of my pocket.  Other times I’m okay as long as I’m not going uphill!  I can walk quite a ways, sometimes, and others I have to sit and rest.  It’s a return to what feels like not that long ago.

I’m going to try to get back in the swing of this.  It feels good to return to writing, though it feels a little bit like giving in to a turn back toward hospitals and nitroglycerin and worried looks…

So be it.

I hope this finds you well and that Fall hasn’t returned before you got to rest this Summer.

Art in the Pearl tomorrow.  Life is very good.

Now get back outside before the rain starts…

Back home…

I am back home from the hospital but needing to rest.  I’ll post in the morning and bring this blog up to date.  No heart attack or huge news.  I have lost about 20% of my meager heart function and a portion of my heart is good and truly dead.  Not earth-shaking nor the end of the world.  Just another turn on the road to a new heart.

I’ll tell the tale in the morning.

Now get to bed, dangit!

–m

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!

Livin’ on Nitro

It’s just a little-bitty thing. I carry it everywhere I go because it keeps me alive. Inside is an even tinier, smoky colored bottle with teensy weensy little Nitroglycerins pills. Since I was a kid I’ve always had this image of Nitro as an explosive. Maybe because of Maxwell Smart or James Bond, I don’t know. But there have been no explosions in my pants and I would think that I would notice…

It’s been a long time since I’ve written in this space. I reached a sort of homeostasis about 6 months after the open-heart surgery to remodel my heart. We thought it failed, at first. Then my heart function improved and the blood clot within the left ventricle seemed to have dissolved. My exercise limits have expanded. I’ve ridden a bike and walked for a couple miles. It feels like Dr. Herschberger’s goal to “buy me two to five years” before needing a heart transplant might come true!

There is not a day, however, that I do not awake surprised and grateful to be alive. We saw Enchanted a few nights ago and I was very moved by Giselle, the main character in the movie, who seems to find something good in every moment and every person. I’m nowhere near that zen-like level, but I feel that way about life.

Part of the reason for that is the reminding function of my heart. Reminding me, that is, every week or so with humongous chest pressure and sometimes staggering pain.

It’s hard to describe. Everyone seems to experience it differently. I have used farm animals to describe it, which can be very confusing in an emergency room. “How bad is it?” “Well,” I’ll tell the attending, “it’s like a small goat right now, but it was Clydesdale a few minutes ago.” Goats. Horses. Since the heart surgery I’ve moved into the larger farm and zoo animals.

Judy and I were at DMV a month or so ago, she in line and me sitting in the waiting area reading the Oregon Driver’s Handbook. At about the moment she finally reached a window, I felt the familiar tightening across my chest. It’s not huge at first and sometimes I let it ride for a few seconds to see if it’s a foamy little wave or full-blown Tsunami. Or, to stay in Dr. Doolittle land, is it a bunny rabbit or a rhino? It takes about 15 seconds to know. Fifteen seconds is a darn long time when you’re wondering if “this is it.” And I suppose I should just whip out the nitro and get one in just in case. But we all have our lines and this is mine.

At the DMV it was a rhino. Definitely a rhino. I pop one of the tiny little pills under my tongue (you don’t swallow nitro. You let it dissolve under your tongue so it goes directly into the blood stream…) and wait for the familiar metallic/minty taste to fill my mouth. It’s almost a little spicy hot, which, if they lose the heat, is how I know if the pills are no longer any good. I’m supposed to wait 5 minutes before taking another one. 5 minutes. That’s a damn long time when you’re not sure if your heart is on its way out and these last few minutes sitting in a DMV waiting area will be your last experience. So sometimes I’ll wait the full 5 minutes. I can usually feel it when it kicks in. The pressure begins to release, the pain dials down. I can wait the full 300 seconds in that case.

But sometimes, the last few times, the rhino starts gaining even more weight and decides to stand on its head with the horn nearly piercing the long chest scar and the pressure starting to make it more difficult to breathe. So I pop another. I don’t really care how long it’s been. I’m mostly interested in staying alive. When I hit three nitros, I have a decision to make. 4 nitros is a 911 call. It generally means it’s not going to get better and could actually be IT. So at the second nitro I get Judy’s attention and sign language that “I’m having chest pains and taking nitro.” Two fingers indicates it’s still going on. Of course, she has to decide whether to leave the window and come to my side. Is this it?

What a weird life, huh? But she stays there as I wave her off with nonchalance. But inside I am wondering the same thing. The third nitro is scary not because of what it does (which is make me awfully dizzy), but for what it fails to do. I become an internal monitoring device measuring pain and pressure in the tiniest increments, trying to pickup a drop that means it’s finally letting go. I’ll wait the full 5 minutes after a third nitro. Maybe 6 or 7. Dumb, huh? But it’s a 911 call, an ambulance, a hospitaliztion. Phone calls and worry and sticky EKG patches all over my body. Beeping monitors and relentless fluorescent light. Small talk and black humor (especially if Pat is there, which he almost always is with Jenny after an emergency ride in the darkness on the metro up the hill to the hospital) and bad TV. Fear. A strange feeling of failure that I couldn’t make it any further than this without going back to the hospital.

So I wait an extra minute or so. And, at the DMV, it begins to let go. I’m dizzy as hell and flushed, but the rhino morphs into a goat, and then a bunny, and then…well, only the body-memory of it is still there. And then we leave the DMV and get in our car and go on with our lives.

It’s weird. For me those moments have become surrenderings. Not in a bad way. In a real way. I am prepared. I have done my best, I have loved as well as I can and given everything that I can. I am lucky, so very lucky, to love so much and to be loved so well. I have not failed as a father or, too often, as a friend. If my life is to be measured by the people in my life, I could not possibly ask for more.

A curious addition to anxiety has been the recall of my defibrillator. Really! Evidently the lead that is planted in my left ventricle can degrade prematurely and cause inappropriate defibilizations and worse. The unit in my chest has been reprogrammed to beep if the lead goes to far out of set parameters (pardon me while I beep?). And I have a home unit that I use once-a-week to “interrogate” the ICD and which sends data to my cardiology team for review. When they re-programmed the thing, a large mouse-like device hanging over my chest and leads running from my body to a laptop computer, they tested the lead by “pacing” my heart. From the computer they touched a few settings and caused the defibrillator to send a pacing current into my heart. Suddenly I was weirdly flushed and, um, not exactly dizzy but sort of hyperventilated… It lasted just a few seconds and, with a couple taps on the screen, Cindy stopped the pacing and I returned to normal.

As I watch Enchanted I felt as if I have lived some sort of fairy tale life. Though sometimes it gets me and my whistling and foolishness take leave, for most of these lovely waking moments I am so fully alive and so completely involved with living that I cannot seem to keep from talking with the strangers around me or marveling at some tiny little miracle of this world. It’s a delightful way to live and the farm animals are a small price to pay.

Two Sundays ago I was sitting in my regular place, a pew about three-quarter’s back and right on the center aisle. I’m always early so that I can sing as the choir warms up and learn the music. Friends began piling into the spaces around me. Paul and Sheri and their daughter, Riley Ann, whose tiny little 2-year old hand I love to hold during the Our Father; Bob, my good friend who pulled me aside months ago to ask me what I was waiting for to propose to Judy, who slides into the pew in front of me; Josh to my left, a young adult with the youth ministry fever who I am blessed to mentor; and Rich to my right who wears saddle shoes and believes in sustainability…

Half way through the mass, when all of us Catholics are standing, then sitting, then kneeling and then standing again, someone cinched a belt around my chest and stuck an ice pick deep into my chest. It was as bad and quick as it has ever been and I sat down a little too quickly with a thud. I had my nitro out and one under my tongue when the people around me began looking concerned. I gave them the nonchalant wave off. Lot of good that does when you’re sitting and everyone else is standing.

On my third nitro I was in so much pain and so scared that I was contemplating laying down on the carpet in the aisle. My thought was that if I could just relax enough I would be okay. The irony of possibly dying at church wasn’t lost on me, either. So I hung there in the pew with number 3 dissolving under my tongue while people started getting up to go to communion. By the time the pew before me filed out into the aisle for communion I was desperately monitoring my body for signs of change. I felt it shift and stood up. Either this is or is not it. If going to communion is the last thing I do it wouldn’t be the worst thing.

I sang quietly as we shuffled toward the altar. I have sung the song often as a choir director and, with my body seemingly on such an edge, it seemed like the right thing to do. The host sucked what little moisture was left in my mouth and I was grateful for the sip of wine that came next. By the time I was back to my seat the ice pick was nearly gone and my chest felt loose and comfortable.

That is just the way life is right now. Every day I feel a bit like George Bailey when, in It’s A Wonderful Life, he reaches into his pocket and finds ZuZu’s flower petals and realizes he has another chance to live his life. So I cried a bit at Enchanted. And tears well up easily when, in Charlie Brown’s Christmas on TV, Linus tells the gospel story, and all the history with family and children swamp my memory.  Imagine what will happen when I watch It’s A Wonderful Life again this Christmas season?!

I view this Christmas as a bit of miracle for me. I am alive. Judy will marry me on December 29 and many of the most wonderful people in our lives will be there with us. In my tuxedo pocket, as I say my vows, will be a little vial of Nitroglycerin. Don’t think for one moment that the wonder and glory of just a few more minutes will escape me, nor that my hope in that ceremony or in this Christmas season will dim one iota.

It has been so long since I have written. Thank you for your many notes and calls and visits. Have a glorious Christmas!

Now go put on some carols, grab a mug of hot chocolate and sit by the fire.

Bummerness inside my head

So my church has this event called Tom’s Trek. Tom is for Fr. Tom, our pastor, and the Trek part refers to a hike around the Timberline Trail on Mt. Hood. The trek is about 42 miles, altitude 6,000 to 7,000 feet…

Before I’d learned the results of my open heart surgery, I was kinda hoping I could participate in the Trek this year. Of course, I had visions of running, too, and possibly even running the Portland Marathon. But, as I wrote in an earlier post, Not Good News, the surgery was unsuccessful and my Ejection Fraction actually dropped 5% from the day of surgery(35%) to my first echo cardiogram. So running and Tom’s Trek were out.

But Tom’s Trek also inlcudes lots of volunteers who support the trekkers. I signed up to help and–perfect for me, with my retreat experience from 30 years of Youth Ministry–was assigned to the 2 am shift to help get trekkers out early. It looked like pulling some “all-nighters” on the mountain would be exactly what I’d love to do.

That’s supposed to start this Friday evening, after Judy and I go on our Portland Spirit Cruise with Brett Dennen from 3 to 5. This would be Judy’s first work with St. Clare’s, too, and a perfect opportunity to meet everyone.

This afternoon I got an email from Jenny, my daughter, who works in the health insurance field and doesn’t miss much when it comes to my health. In her email, this is what she wrote:

… I do have one question though- you might want to ask about altitude with regard to your blood clot. Not sure how it would be affected or if there even would be anything to be concerned about- but it would not hurt to ask. I know you are not climbing/ doing the actual trek- but it’s pretty far up there.. Keep in mind- the higher the altitude- the more oxygen your body requires. This also effects the viscosity of the blood:

Blood clots
The increased number of red blood cells helps the climber get more oxygen to their muscles. However, more red blood cells increase the viscosity of the blood and can become a problem. If the blood becomes thick it increases the chances of clotting. A clot that gets dislodged can float around in blood vessels and may block tiny capillaries. If the clot blocks blood vessels in the brain a stroke occurs. If the blood clot plugs capillaries in the heart, the person will suffer a heart attack. Blood clots in the lung capillaries are called pulmonary embolisms.

High altitude affects both the circulatory system and the human respiratory system.

CHF and High Altitude

High altitude (Breathing is more difficult because of the lower level of oxygen in the atmosphere

Should you have a heart condition, such as CHF (congestive heart failure), or angina, avoiding altitude is advisable. The longer you are at altitude, the more your arterial vessels will dilate, increasing the flow of blood to the cardiac muscle. Exerting yourself too much, and too quickly could be fatal.

Yarks! So I called OHSU and they’re going to “check with the doctors” to see what the scoop is. In the meantime I’ve spent more time going through the research on Congestive Heart Failure and Ventricular Arrhythmias in relation to altitude. Not good news.

Unfortunately you cannot research CHF or Arrhythmias and Implantable Cardioverter Defibrillators (ICD’s) without coming across tons of research on the mortality of patients with these health issues. I really hadn’t seen it all since last year when I first learned about my illness. Spirit buoying statistics like…“The 5-year mortality rate after diagnosis was reported in 1971 as 60% in men and 45% in women. In 1991, data from the Framingham heart study showed the 5-year mortality rate for CHF essentially remaining unchanged, with a median survival of 3.2 years for males and 5.4 years for females.“

Ugh. I was diagnosed January 13, 2006. Uh, let’s see…that’s 18 months…3.2 years they say…two carry the one…20 more months—what’s that, Valentine’s Day 2009? Morbid, I know. But don’t think you wouldn’t make the same calculation!

Evidently these statistics are exacerbated by other factors, including Ventricular Arrhythmia (hello, that’s me) , Inducible Ventricular Tachyarrhythmia (hello, again) and Blood Clot (Yikes! Can you spell ICD?).

I just fall into the “severely reduced left ventricular function” category (EF 30%) for which there are many more warnings about altitude (words like “avoid”). The advice is to watch activity and, if you experience symptoms, GET OFF THE MOUNTAIN! Duh!

So Should I Stay Or Should I Go, Now? (see the Clash). I DON’T KNOW! How much is stubbornness driving me? Or recklessness? I think when I’m in this place I’m better off deferring to the people who love me and who would be the most pissed off if I did something risky that cost me my life. Not much doubt what Judy and Jenny would say. harumph.

I’ll tell you one thing: if I did go up on the mountain and die, it had better be instantaneous or I’d check out with my last thought being, “Jeez, Judy is going to kill me!” Now THAT would suck!

Bummerness inside my head, as I said. Not so much about the Trek, but about the reminder about my overall mortality. Oh well. Good reason to get up every morning and kick some butt and take no prisoners!

I think I will err on the side of safety this time, no matter what OHSU says. Small chance, maybe. But I don’t have that many left to squander, do I?

Now go squander some quality time of your own!

Shoot! Don’t let me die to THAT song!

Okay, it’s been a while. My soul patch has grown out and my hair is now blond/white. Later about that. Mostly these last weeks and months have been about living each day to absolute fullness. Some days that involves more rest than action. Like today–like this week.

Part of severe heart failure is heart congestion, where fluid backs up behind the heart because it can’t pump what it should. So water backs into the body like a shower drain clogged with hair. It gets through, but not fast enough to prevent that cold puddle you end up standing in.

For most people with heart failure like mine, their ankles swell up something fierce. In fact that’s the first place my doctors look when I see them. But for me the ankles aren’t my bathtub puddle. No, it empties out right into my chest and abdomen. Major bummerness. Despite lasix, or furosimide, to squeeze water out of my system, I’m racking up enormous amounts of water every day–sometimes 2 or 3 pounds worth. It’s amazing! Strap (more about straps later) a water bottle on your chest and fill it up every day–sometimes not quite full and other days so full it might pop. That’s the trunk of my body.

Avoiding salt at all costs and limiting fluids is all I can do besides medication. And that medication hammers the kidneys. That’s why I’ve had renal failure three times and the docs and nurses are very loathe to let me take as much as I would like.

Nevertheless it’s this water backlog that tells me how my heart is pumping. Poor little thing is like Sisyphus pushing that rock up the mountain. It’s just never enough. This is why I need a new heart, and before this poor dude gives up and lets the rock fall all the way down.

The other thing that’s been plaguing me is the horse that keeps jumping on my chest. It seems like every week or so I suddenly get this huge chest pain and pressure that builds very fast. I grab the nitro and get to a chair. Sometimes one will wear it down. Sometimes 2 or 3. It feels exactly like they tell you…big pain, big pressure and big fear. After you pop a nitro or two and it’s still coming on, you start to wonder if this isn’t it. That whatever tune is playing on the computer will be the one you die to. That someone’s going to find me slumped in a Carter Smiley chair with Hardball blaring on the TV.

Seriously. A few weeks ago I was on my second nitro, splayed out in the chair and trying not to move a muscle, trying to breathe and relax and let my poor heart calm down, when I heard John Denver’s voice. Christ almighty, puhleeeze don’t let me die to John Denver! Tom Waits, Dylan, Brett Dennen–cripes, I’ll take Rusted Root , Iron and Wine or the Ditty Bops! Or maybe something really profound and weird and religious like Roísín Murphy or Magnetic Fields!

Hey, don’t laugh! It’s important! What do you want to die to? Oh, you haven’t thought about it, huh? Oh SURE! And don’t think you won’t, now. Or won’t when it comes your time to stare down the grim reaper!

So it’s been a couple months of re-curring reminders that I live on the edge. Ooooh, like that’s new for me!

In the meantime as I am able, I’m creative as hell right now. Finishing up a huge project putting together a workbook, teaching materials, powerpoints, website and marketing materials for our friend, Cindy. Recording music. Writing and drawing and creating graphic arts for events and organizations. I feel like I have so much to do and not enough time to do it.

What gets most in the way isn’t the chest pain. That’s a couple nitro’s or a trip to the hospital. Not much in between. But I also get these physical washouts that come on so fast. I’ve got some energy and then all-of-a-sudden the tide washes out and I am spent. These are accompanied by what feels like a steel strap getting cinched around my chest. It stays for hours and days and, though I keep coming into my studio and sitting at the computer, my body says, “screw you, buddy. we’re not doin’ nuttin’…” (sometimes my body is slightly less articulate than one would think, though that may be the blond talking, now…)

Overall it seems pretty clear that my heart surgery was a try, and that’s about all. Even the two by-passes that we had hoped could spark a little more activity in my left ventricle don’t seem to have done much. My chest pains and pressure are coming on more often and more strongly than ever before. ON THE OTHER HAND I HAVEN’T BEEN ADMITTED TO THE HOSPITAL. So it’s a mixed bag.

August 20 I go in for another echocardiogram and we’ll find out if my EF has gone up or down, and how my blood clot is doing down there in that left ventricle.

Now, on to much more important issues! If you watch HGTV, you might have seen a program called, “What’s With That House?” whose host is George Gray. He is my new fashion hero. With his geek glasses, bleached hair and soul patch, and his totally groovy shirts he’s a role model to coolness. So I went out and got a bleaching kit and, first, “did” my soul patch. It took a lot longer than I thought (and the stuff burned more than I thought…), but it worked and my hair didn’t fall out. So the next day I did my whole head. Well, Judy did. What fun! So, with a little product and a cool shirt I am, voila, George Gray redux! Since I’m recording music, I do need to look like a musician!

Jude got me a jazz harp (along with tickets to the Ditty Bops, among other things), so I really have a new, beat image to live up to. They laughed at the church. A few people haven’t recognized me. And I seem to be having these “blond” moments where only simple words will come into my head and I giggle for no apparent reason (well, it could be the Mad Cow, too…).

We continue to hit the Portland music and art scene and continue to toil away at discovering new, wonderful restaurants (ie. pokpok — voted best restaurant in Portland–and Rocket: Failure To Launch). If you come to visit you’ll see. This is a paradise for the arts, for music, for food and for beer!

No word on date for wedding! You’ll have to talk to Judy about that!

Speaking of which…I guess I better put down the engagement story or I’ll get flamed by some of you!

When we first moved to Portland one of the places Jenny and Pat took us to was Pioneer Place, the downtown mall and specifically to Twist–a funky, quirky, expensive store with eclectic, fun stuff. Judy looked at jewelry (including rings, as she is wont to do) and tried on one that just blew her away. It was designed by Gabriel OFeish and is called an Orbit ring. I filed her excitement and ring size away for later referral.

After my open heart surgery, when we had found out it had failed, a good friend came up to me after church and asked me, “What are you waiting for? Maybe you ought to think about proposing to Judy.” It was true. Back so abruptly to life one-day-at-a-time, what was I waiting for? So over the next couple weeks I schemed, with the help of my daughter Jenny, and set the trap.

I emailed a wonderful artist friend, Steve Eichenberger (who crafted the sculpture of Jenny
now above our mantle), and told him about my plan to propose to Judy in a gallery. But I needed the right gallery. The right art, the right feel, and most importantly the right owners. He suggested Beppu Wiarda Gallery in the Pearl. And Gail Beppu was absolutely magnificent!

So I got the ring and went by the gallery to set the whole thing up. Later Jenny and I went back with a CD of music, a glass-domed wooden pedestal, a small but interesting sculpture of a man and a woman intertwined, and a small card with title, artist and price that matched the others in the gallery. Gail agreed to turn the music on when we walked in the door–due to be 5:00 that Saturday.

I was able to get Judy to wrap up her beading project and go with me to the gallery. I told her that Steve had insisted this was art we just had to see. When we got there and walked in the door, I saw Gail dart behind a screen and, as I led Judy around to the different pieces, the music began.

‘Hey, listen to that,” she said. “We sing that all the time! That’s the song!” It was Ruby by Ray Charles. When someone (including us) says, “you know what they say…” we both break in with…They say, Ruby you’re like a ….”

“Hmm, are you sure?” I asked her. “I’m not sure that’s it.”

We continued around the exhibit and I finally led her toward the back, where other smaller art pieces by many artists were displayed. I was trying to slow here down so that the next song would start at exactly the right moment. Finally she worked her way over to the wall and shelves. “Oh my God! It’s my ring!” And there, under glass and perched between the stone couple, was the ring. On the shelf the note said: “One door opened” (the words to a song I wrote for her one Valentine’s Day), Gold, Platinum, Diamonds (the medium), and the artist’s name, Gabriel D O Fiesh. Below that it said, where the price should have been, “NFS: worth a lifetime.”

At that moment the song began. “Night and Day” by the Temptations–a song we had danced to many times.

The ring. The note. The song. As I saw it begin to dawn on her face, I dropped to one knee and proposed. She was crying before I finished the question and said through her sobs, “Yes!” and held me. Then Jenny and Pat stepped out from behind a door and she cried some more.

We walked down to Georgio’s where Jenny had set up a beautiful bouquet of orchids in a lovely, artistic ceramic vase. I had given Jenny a bottle of Dom Perignon 1995 (it been given to me as a give some years before and I’d been saving it for something special. This was special.) and the waiter served us. As we toasted, a few friends dropped in to share the moment with us. It was perfect. We were engaged.

So life rolls on. Every day is an adventure. I am much more careful now with my music, of course. Only tunes good enough to end the movie.

Now go give someone a kiss.

My brain went off

“Well, I’d eaten some tacos with Fire sauce and was watching “So You Think You Can Dance.” That’s what I told the docs at OHSU emergency last night when they asked what I was doing when it happened. I was sitting in one of the Smiley chairs minding my own business when something in the back, bottom of my head suddenly went off. It started as a hard pressure, like if you grab a chunk of skin on your arm and squeeze hard enough to hurt. Then it just started growing, taking over the whole back of my head and moving down into my neck.

My first car was a blue Sunbeam Imp. I chose it over a Volkswagen bug that was the same price, thinking, “Hey, everyone has a bug. But nobody has an Imp!” Of course, this was the first of many choices in my life where I chose the odd over the normal. To secure the point, I put giant peace signs in white tape on both doors. For a few months, it was the cool car to be in.

It had a red idiot light for oil, which used to go on every few weeks for a moment or two…just enough to scare me but not enough to take it to a shop. When buddies were in the car and the light went on it would spark a short round of speculation about the problem. But none of us were mechanics. We were all geeks and suburban hippies so talking about exhaust manifolds and oil pans was really a bunch of crap. None of us even vaguely knew what we were talking about. But guys do this.

Eventually we’d exhaust our limited vocabulary and about that time the light would flicker and go out. For me that meant the problem was either 1.) healed 2.) the light was faulty or 3.) good to go until next time. Which worked pretty well until Scott and I and Matt were on our way across the Bay to go camping at the beach when that little red light went off again. A couple minutes of useless speculation got us most of the way across the bridge and to the base of the steep part where the San Mateo Bridge rose up and over the boat channel. Though the Space Shuttle Challenger wasn’t to blow up for another decade or two, I look back now at what happened next as an eerie harbinger of the tragedy to come: “Holy shit–there’s smoke coming out of us!” I saw it at about that same moment as I glanced up in the rear view mirror.

Thick, white, roiling clouds of smoke lay behind us like the wake of a boat. We could barely see the cars behind us as they wove back and forth trying to find a lane–any lane–where they could see and breathe. Inside the car there was bedlam, though I was oddly calm. I knew the car was a goner. Even I could diagnose a red light on the dashboard accompanied by billowing white smoke coming from the rear of the Imp. As I made my way to the guardrail on the right, we crested the bridge and rolled to a stop. Then I panicked, too.

In our preparation for the camping trip we had packed bananas, cookies, beer, potato chips and Frito’s, swim trunks, some wood (Duraflame hadn’t been invented, yet) and newspaper, and some, uh, herbs. And a very cool pipe that looked like a bomb to, uh, heat the herbs. Standing in the slow lane next to our blue peace sign Imp we were all aware that the fuzz (I know, it’s so old. But that’s what we called them with our longish hair and dirty, ripped jeans, tie-dyed shirts and macramé belts…) were going to show up any minute and they would not be happy. The peace sign would be the biggest problem, pissing off the cop and getting us rousted, searched and hauled off to the hoosegow (oh, boy).

We were all good Catholic school boys. No way could we have the man hauling us in and calling our parents, throwing us in jail and ruining our lives forever. Actually, we knew there would be cool chicks at the campground that night and it was already starting to get dark. So we threw the herbs and pipe over the guardrail and into the bay.

It wasn’t the fuzz that showed up but a yellow AAA tow truck. He took us and the dead Imp down to the West side of the bridge, where I sold him the damn thing for $50, emptied it out and hitch-hiked on the to campground. And yes, the chicks were there and we were very cool with our tale of danger and adventure.

So, getting back to me in my chair with a bomb going off inside my head, the point is that blood clot was sort of like the red idiot light on my Imp. Mostly I don’t think that much about it, but when I do it definitely scares me. And I wondered, as my face twisted and the pain kept exploding, if some random blood vessel in my brain wasn’t spewing out clouds of white smoke and my life was suddenly going to get pulled over to the guardrail right when it was peaking.

Peaking because just a couple days ago Judy and I became fiance’s–SOOO much better than “significant others.” That’s another story–a romantic one, yes, but let me finish about my brain, here.

Thought I was buying the farm. It all took about 5 minutes. Pain and fear reaching a point where I was reaching up to my lips to see if anything was numb or I was drooling. Trying one eye, then another to see if my vision was blurring. Trying to remember how you know if you’re having a stroke. Try to smile?

Judy and Jenny were both standing and looking VERY worried. I was still sitting but evidently I looked pretty bad. “Should I call 911?” I HATE going to the hospital. One of my favorite shows was on. Gawd, I love dance. I don’t want to miss that and, anyways, IV’s and stupid gowns and, crap I just didn’t want to go. “No, wait a minute. I think it might be getting better.” Waiting for the red light to go out and hoping smoke wasn’t billowing out of my butt.

But that’s not what I said. I actually said, “Yeah, let’s go.” Because I have a blood clot inside my heart. Because I’m maxed out on blood thinners. And this might be the big one. Judy and Jenny thought the same.

We got out of the emergency ward early in the morning…somewhere around 1:30 am. IV’s, gowns, CAT scans, Angiogram with a contrasting agent that,when it goes in your body, an almost hot, but very warm rush starts at the top of your head and washes down through your body right to your toes. Feels like being in giant rubber bag and peeing it full. (Not that I have ever been in a large rubber bag or peeed myself warm…). Lots of waiting in a room with blinking lights, waiting in a gurney in a hallway, rolling in a gurney counting awful fluorescent ceiling lights, making dark and silly jokes (we needed Pat) and watching hospital staff passing to and fro by my door without making eye contact.

There was a report on TV while I laid there about a woman who lay on an Emergency Ward floor vomiting blood for 45 minutes without help. She died. I was not vomiting blood. In fact, the gurney wasn’t completely uncomfortable. But my anxiety level was a bit high.

As I said, I am 90 to 95 percent normal–which I asked to be recorded and certified for the benefit of my family but they wouldn’t do it– and safe to go home. So now I am. Home. The red light in my head is off. I am 1.) healed, 2.) my brain is faulty or 3.) good to go until next time.

Now go check your oil.