Winter

So they’re going in again! I’m thinking maybe I ought to have them install some sort of plug or cap system down there so they can just go roto-rootering whenever they want!

Angiogram is scheduled for Monday, December 4 at 6am. I last had one back in February or March on one of my early hospitalizations back at Tuality Community Hospital. Nobody had wanted to do one on my heart at that time as too risky. I was in severe heart failure. But on one of those early emergency visits Dr. Wiltrakis decided to do a “partial” angiogram–evidently not going into the left ventricle. Freaked me out because I know two people who’ve had relatives die during this procedure.

But I came through it no problem. Trouble is, the images were conclusive about the arteries on the left side of my heart…totally gone. Just ribbons of flat white tissue. The right arteries had problems but because my echo had indicated most of my left side muscle was dead, there was no sense trying to do anything at the time. Wiltrakis told us I’d need a heart transplant.

All this time down the road and it looks like they’re still thinking there’s something they can do to help my creaky, but lovable old heart. Let’s face it, though. 50% of people with heart failure die within 5 years. Mine is particularly bad, plus I have a ventricular arrhythmia that is 95% fatal. I say, “Let’s get this little mother out of there and strap on a new one!”

I’m not sure about doing this angiogram. Not sure what the point is. Getting re-educated about the procedure and looking again at the numbers takes me right back into that anxious, fearful place where it seems at any moment I could go off, or down. But, then, there are a few hundred other things that could do it too.

Two nights ago Judy and I were watching Extreme Home Makeover and suddenly there was this awful, loud, piercing BEEEP! I jumped and thought my defibrillator was going off. Judy jumped, too, and looked at me for the same reason. My pulse must have hit 130…but it was the darned smoke alarm telling us it wanted a new battery.

Dad came up a weekend ago and we had several days to catch up with each other. It was a pleasure. We sat up past 1 am talking about religion and faith and, yes, I did ask him about mom’s death. She did not die in the shower. Whew. Dad and I hadn’t talked about her death since that morning, so it felt good to take a look at that bit of our history. Still, I am haunted in the shower by old scenes still stuck in my head as well as the very physical body-memory of 5 defibrillations–starting there in the shower. I’m still doing it in record time. Just GET ME OUT OF THERE!

It’s been about 2 weeks since I came out of the hospital. Judy’s dad, Leo, passed away Sunday evening, the 19th. Talk about piling on! I’d been lucky enough to meet Leo a couple times. He was a very happy, gentle man with an easy smile and child-like sense of humor. It doesn’t seem that long ago that we were all sitting in the living room at Judy’s house in Sonora when Leo, sitting next to me on the couch, leaned over and said, “They say every person farts 14 times a day. I just did number 13.” The smile on his face was not unlike Judy’s famous smile. Genuine to the core. Sunshine on a cloudy day. The chocolate on the outside of a Three Musketeer’s bar.

Leo and Darlene came to visit us out in Banks, where all we had was a wood stove to heat the place. They stayed for a couple days and we talked and went sight-seeing and played cards. He was a hustler. At dinner one night in a nice restaurant, Darlene started going on about Mexicans and Leo just looked at her and laughed, “You are a bigot. Yes you are.” And she’d argue with him and he’d just sit there and smile. He was simply happy viewing life.

The next day we’d stopped at a Wendy’s and all sat down at a table to eat. Sitting next to us was two girls about 10 years old with a mom. I was just scarfing down a french frie when Leo put his straw to his mouth and blew the paper cover off and into my face. The girls thought it was just the greatest thing! And Leo sat there giggling and smiling the Goetz smile.

In his last few months he was in Lodi, where Judy’s brother took his father in and cared for him and eventually visited him religiously in the care facility. Judy’s sister made her way to Lodi, and Judy took a last trip to see him. My father, who lives in Lodi, went weekly to visit Leo and called us regularly with a report. It is one of my dad’s great gifts, one that he has practiced all his life and one I never anticipated his giving to Judy and I.

Judy and I and Pat and Jenny went to visit Nora together just before Thanksgiving. Pat’s mom is a nut, too. It seems to run in our families! She is dying, cancer rapidly devouring her. There it goes again, this piling on in life. But Nora is blessed with one son here on earth who is as devoted and committed to her as any one soul can be. And she is blessed, too, with a husband who waits for her on the other side who lost his own battle with cancer long ago and who will be welcoming her too soon.

Nora is settled into a care home in Vancouver, hospice watching over her and a wonderful pastor shepherding her through these last days on this side of life. She listens to “Crazy” by Gnarls Barkley dozens of times a day, makes jokes and smiles like an imp under her purple head cap while she talks about this and that and everything else. To watch these two, Pat and Nora, son and mother, navigate this terribly long goodbye is heart-rendering and heart filling. Bittersweet. Love lays there in the room like dog, eyes sleepy and rolled up in hope, coat shiny and warm, tail wagging and not even aware of whatever is next.

These lessons are not lost on me.

It is the Christmas season. Pat’s toast as Judy and I and Jenny and he sat around our Thanksgiving table was to “next year.” Please, God, get us out of this one!

This will be a season of disassembling, I think. It’s that way when someone dies. The world, suddenly missing this huge piece, must be taken apart and put back together. And so, for the very first time in my life, the Christmas tree sits in our living room undecorated. It sits there every day, beckoning. Hope calls out for the boxes to come into the house, every ornament with a history and a story and a memory. But there is so much grief, even with these, that I wonder that maybe we should do something new, something completely different.

We shall see.

It has snowed the last couple days. Big, floppy flakes that floated down like feathers. The trees glisten and every snow-dusted rooftop looks like a Dicken’s Village model in real life. The grass crackles and the air is crisp. Winter is upon us. Yes, Winter is truly upon us.

Now get a mug of hot cider and throw another log on the fire.

Don’t give me no static…

So my hand touches the doorknob and bzzzzzzzzzzzzt, I get a jolt of electricity and my entire body jumps, my heartrate leaps over 100 and in one instant I am ready to die. But nothing happens. It’s just static. Drat. After a few minutes my heart slows down and I’m pretty sure I’m going to live for a bit longer.

Crazy. But my body’s memory of the 5 BOOMS from my defibrillator a few weeks ago is as fresh as this morning’s rain. It doesn’t take a static spark. My showers now last seconds, not minutes. Warm, not hot water. There are moments I can feel the darn thing going off. In the shower is the absolute worst. Last time I had just put my quatro razor to my cheek when, BOOM, the world changed. Didn’t know I’d sliced off 4 neat strips of face–hell, my body was in the electric chair! Who gives a rat’s ass about a little blood?

So now the shower is a freaky place. I get into the shower and I mentally prepare. (Well, I’d like to say I pray and meditate, breathe deeply and go to my happy place. But actually all I can think of is, “Crap, get me outta here,” and “Jeez, I’m standing on one foot, washing the other, and if this thing goes off, I’m going down hard. Get me outta here.”)

Static, though, is a whole different trip. You don’t see it coming. No time to prepare. Everthing is cool, not thinkin’ about my heart or dying or body shocks. Some awful song stuck in my head (This is the song that never ends,… or the Doobie Brothers, or”Tie A Yellow Ribbon Round The Old Oak Tree..) and BZZZZZZZZZZZZT a little blue spark jumps out and all of a sudden it’s like Dr. Frankenstein has pulled the lever down and lightening is ripping through me like the monster…but it’s just a little blue spark.

It’s been three weeks. When I came out of the hospital I was afraid I was going to die at any moment. Hundreds of times a day. Even though I was mortified of getting defibrillated, I was even more frightened that death would come silently, instantly and steal me away.

Now, perhaps it’s down to dozens of times a day. But two huge new factors are inside my brain and I can’t seem to get them out.

The first is just clinical. My defibrillator went off 5 times because (as we discovered after all the catheterizations) I went into Ventricular Arrhythmia. That’s the bad one, the drop dead, sudden death spector born in a thin, stretched-out chunk of heart muscle degrading every day from Dilated (Congestive) Cardiomyopathy. The good news is my ICD intervened to pace me out of it (that was the funny feeling I had seconds before it went off), and then defibrillated me 5 times to stop the killer arrhythmia (95% fatal, as Langdon wrote in a comment). The bad news is that the pacing and defibrillation didn’t work. My plucky little heart found its own way out. Pretty cool, except does that mean I’ve used up my 5%?

So that realization scares the you-know-what out of me.

The second new chunk of toxic flotsam floating around in my head is that my mom died of congestive heart failure–at 62. I was at work at Pacfic Steel and Supply when my dad called and simply said, “Your mom’s dead.” It was about 30 minutes from San Leandro to Niles and I got up to leave immediately. On the way out, I stopped at the President’s office and told him my mom had died and I was leaving.

“Does this mean you won’t be here for the meeting tomorrow?” That’s what he said. I told him, “Yeah, I won’t be here,” and made plans to leave the company.

When I got to the townhouse in Niles, my dad was in the living room. “She’s in the bathroom. I cleaned her up. You can go in and see her if you want.” I didn’t want. I just didn’t want. Minutes or hours later (time had stopped), the coroner wheeled a brownish green rubber bag on a gurney out of the hallway and through the living room, just inches from my body as it passed. That was mom. And then they slipped out through the sliding glass door and she was gone.

I don’t know if mom died in the shower or what. I didn’t ask. I’ve never asked. And now I’m afraid to ask.

My dad is coming up to visit this weekend and maybe he’ll read this and tell me. Maybe he won’t, though, and so maybe I will ask. Maybe I won’t.

My shower is not my happy place. It reeks of bad history–long dormant images of my mom and very fresh body memories from just weeks ago. The images and memories and feelings get all jumbled together sometimes and crash through my conciousness without warning, much like the Tsunamis that we watched on TV not so long ago.

That’s just the truth of it. It’s why I write this blog.

On the good side, I got my blood test results from last Monday. I’d fasted 12 hours and, for the weeks before, sworn off all candy, all fat, all alcohol. I was hoping my epic numbers (513 cholesterol and 1649 triglycerides) would fall.

They did! Cholesterol 232 (okay, not great–should be below 200 but it’s a base hit!) and triglycerides 394! 394! Hey, that’s over 75% lower! Very cool for me!

My LDL is 111 (that’s the bad cholesterol–under 130 is considered “near optimal”) and my HDL is 47 (that’s the good cholesterol and under 40 is best). Pretty cool, I think. These are huge factors for me, since two of my heart’s arteries are gone and the last two are more precious.

So when people ask, “How are you?” I answer “I’m alive!” And I mean it. Dozens of times a day fear comes into my head, but the result of every visit by that specter is a realization that I have a few more minutes, a few more hours, a few more days. Who really knows? Talk about living for the moment!

Now get out there and order your Thanksgiving Turkey! Make it organic, fresh and free-range. Take it from me, every extra day is gift.

5 BOOMS and A room full of paramedics

I was naked, blood pouring from my face, and drenched with water, laying on the bed as still as I possibly could, when I heard the sirens and the room lit up with the emergency lights of the fire engine and ambulance. They were coming for me.

I’d been in the shower, shaving with a four-bladed Quatro, when my defibrillator went BOOM. I don’t know how I didn’t fall down, but somehow I leaped out of the shower. It hit me again before I made the bathroom door. And three times more as I lay on the bed soaking wet. Judy watched as my body convulsed and bounced on the bed, and she was on the phone before the fifth one blasted through me.

I was scared to death and yet trying to calm myself. I thought, “this is just a bad day for me to die what with Nora and Leo both in hospitals and facing mortality.” Nora is Pat’s mom, with end-stage cancer. Leo is Judy’s dad and he lay in a hospital in Lodi with Alzheimer’s and a failing liver. I thought it was kind of unfair.

The hallway and room was suddenly filled with tall, strong bodies clad in blue shirts, safety glasses and black trousers. Portland Fire and Rescue. I remember hearing the sound of latex gloves snapping as they surrounded me on the bed. It was all business. EKG tabs were pasted on my chest and ankles. I was wired to a machine and punctured with an IV line within minutes. But I had no chest pains, pressure or shortness of breath.

Judy said I was very gray.

I was supposed to be at a men’s retreat at 8:30 at St. Clare’s. It’s theme was “Father and Son” and I thought how much I needed to explore that very corner of my soul. Even as they hung the saline on my IV line and read out the EKG, I was hoping that somehow I could make that retreat. But the huge man on my left radioed to the hospital and, hearing him, I asked, “Are you sure I need to go in? I don’t have any chest pains.”

“Sir, your defibrillator went off five times. We’ll be taking you to the hospital.”

They got me on the stretcher by lifting together on our flowered comforter and set me gently on the yellow gurney. I was strapped down and covered with a blanket and rolled down the hallway while Maddie lay on her back in the Moose Room getting her stomach scratched by one of the paramedics. We each have our needs and ways of coping, I guess.

It was foggy outside and weird as they rolled me up the driveway and out to the ambulance. The lights, the big red fire engine, neighbors, my home and Judy in her bathrobe disappeared as the doors closed and we raced off to OHSU.

For five days in the brand new hospital ward they punctured, x-rayed, and tested me. There is so much about those five days to write, and maybe I will add it all later. But I want to get this up because so many people have called and written.

I was defibrillated five times because my heart went into tachydcaria. My “beeper” (as I call it) was set to intervene at 150 BPM. Over the five days of hospitalization I was wheeled into the “Cath Lab” three times. First to be catheterized (yeah, another shave to pre-adolescence) while they tried to locate the source of this new arrhythmia–perhaps correcting something from the ablation I’d had just three weeks earlier. They needed to know if this was from the top or bottom of my heart. Top is okay. Bottom is evidently very bad.

It was not coming from the top.

By this time I was in acute renal failure.  Another mystery to be solved.
The next day they went back into me–this time shaving off what little hair I had left down there and snaked catheters into both sides of my groin. They were mapping the electrical insides of my heart and measuring its properties. Where was the arrhythmia coming from?

Looks like the bottom. Bummer.

I went through another series of tests, including nuclear imaging and another echocardiogram. The really good news is that my Ejection Fraction, which had been as low as 10% back in January, was now up to 38%! That is spectacular. It still sucks, but it’s a 300% improvement and I’ll take it!

The results of the nuclear imaging weren’t in before I left the hospital. The test’s purpose is to find out if there is any viable tissue at all left on the front, ventricular side of my heart. That has been a mystery since this all started 11 months ago.

During my five days Judy, Jenny and Pat were almost always at my side. Imagine that. Pat and Jen took time out to take Nora for tests, to visit, to write a will and to begin work with Hospice. Judy monitored her dad from afar. Life is just so damn complex, sometimes. (And don’t be sending me any of the “God doesn’t give us more than we can handle” cards and quotes. I think God must be surprised, sometimes too, how awfully circumstances can collide. I doubt that God ever uses divine creativity to craft such tragic courses to our lives, anymore than most good parents would put a child through hell to teach them any lesson.

Anyways, after five days at OHSU, the results are inconclusive. One the good side, my EF is up. On the downside my arrhythmias seem to be ventricular. My “beeper” has been reset to respond to ventricular events–intervene at 150 by trying to “pace” me out of it, and defibrillate me at 167 BPM. (I have a fancy watch that reads my pulse–I look at it a lot…)

My liver failure was from the arrhythmia and defibrillations.  Function returned slowly but surely over the five days.
My case will be “presented” at OHSU–meaning docs from all the disciplines associated with my heart condition will hear and discuss the details of my heart’s condition. So much attention for this drafty little beater. But it’s still ticking and I am alive.

From this may come some new approaches and options. Some sort of heart surgery? Transplant, maybe? Bypass if there’s some good tissue in there somewhere and they can find some decent arteries?

As we were leaving last night, Judy asked Meena, the calm, healing resident doctor who had been shepherding me through this hospital stay and all its machinations, if “they had tested my cholesterol?” Meena was perched outside my room at the computer and yanked up my test history. We watched over her shoulder as she read the numbers. Last cholesterol: 515. Wow. Eew. Last January, just at the beginning of this journey, it was 185–not bad.
Last Trygliceride: 1659. Double Wow and Double Eew. Last January it was 169. Should be below 150.

So, before my heart problems my diet and lifestyle was producing pretty good chemistry in my body. And since then, when I have eliminated most sodium, fat and cholesterol from my diet, everything has gone galactically high! What the heck!? I have much research to do…

Even as I was writing this, I suddenly felt odd and a little bit dizzy. I went in and laid down on the bed, expecting to get BOOMED. When I strapped on my Mio watch and checked my pulse it was 115 BPM. A lot for just sitting at the computer. I waited as my body felt flushed and the dizzyness and weird feeling ebbed through me. I was so scared.

Judy was out in her studio and I had no way to reach her except through the intercom on my desk–down the hall about 40 feet. But I was afraid to get up and move. In the hospital, I learned that many people who have had multiple defibrillations are diagnosed with Post Traumatic Disorder. I don’t know if I have it. But I am so scared.

As I lay on the bed just minutes ago, trying to breath deeply and calm my pulse, I sang out loud a little bit, stroked Lucy (the tiny cat that had jumped up on the bed) and spoke soothingly to her. “Lucille McGillicutty. Tiniest little kittie in the world.” Her ears relax, her eyes close and she purrs and bonks me when she hears the words. I am distracted for a moment. I check my pulse again. It is going down, slowly.

Eventually my pulse falls below 90 and I go out to the living room and intercom Judy. I am afraid to be alone. That’s just the truth of it. I fear not just the device in my chest, but my heart, that I will die suddenly. And I don’t know exactly how to cope with this fresh, rude new fear. And so it drives my pulse in a wicked feedback loop that I am desperate to escape.

This happened just before the paragraph that begins, “During my five days…”

This is how life is right now. That’s why I write in this blog. To say what is really true even if I don’t want to say it or admit it. I am sad that I must be so scared right now. But it will pass, I know.

Thank you for your notes and prayers and calls and cards. Each and every one is precious.

Now find some shelter. It’s raining cats and dogs.

My dog farts and burps

No, seriously.

Maddie will sidle up next to the couch, head down and eyes rolled up to me in that subservient “please pet me” mode. She looks like little red hearts are pouring out of her eyeballs. So cute and so lovable. Then suddenly her mouth pops open for just a moment and a low rumbling belch issues forth. The hot air of her breath and something incredibly noxious rolls across my arm and into my face. “Jeez,” I say. “My God. This dog is disgusting.”

And then I start laughing and that’s when my chest hurts.

It’s worse when Maddie farts, because these are silent but deadly, toxic attacks. Usually Judy is laying comfortably sprawled out in her Stressless Recliner, covered from neck to toe in a goose down comforter, eyes heavily lidded and close to sleep with the dog laying at her feet on whatever is left of the comforter touching the floor. Suddenly her eyebrows will arch and her face will scrunch up, “Oh my God, can you smell that? It’s disgusting!” Which I can’t for a moment until it drifts over to my chair and suddenly I feel a bit nauseous.

“You are disgusting,” I holler at the dog. Her eyes will open for a moment and roll up to me, the whites framing the bottom of a those sad but hopeful eyeballs saying, “I’m a dog. What do you expect?”

And I’ll laugh more and my chest will hurt.

It only hurts, now, when I breath or talk or laugh. And sing. This weird pain has been hanging around ever since the weekend, my last trip to OHSU Hospital Emergency. Tests and x-rays and IV’s and EKG’s and lots of hand-ringing. But no conclusion. Except, “You did the right thing coming to the hospital.”

Only a few hours after getting home from the Bob Dylan concert last Saturday night, I’d awakened in the dark to growing pain and pressure–sort of like a small goat suddenly landing on my chest, but a goat that was fattening rapidly while I lay there hoping it would leave and go back to the petting zoo. When I knew it wasn’t going to stop growing I got up and found my Nitro bottle next to the computer. By the time I got back to bed I’d popped one and was waiting for the goat to at least slim down to, well, maybe baby goat size. But instead the goat became a cow and I reached in the dark for the nitro bottle, turned on the reading light and got another tiny little white pill under my tongue.

The minty, metalic taste filled my mouth while I punched Judy with my elbow. “I just took a second Nitro. I think I’m going to have to go in.” That’s the thing. On the third nitro I’m supposed to call 911 or get into emergency. I knew within minutes that the cow on my chest was soon going to be the elephant I’ve always heard about. I don’t know what comes after the elephant but I’m pretty sure it’s not good. So we had to make a decision: car or ambulance?

By the time we were dressed I’d decided to take the car. Somehow the cow was still clutching my chest even though I was standing up. We made our way up the driveway to the Jeep and the climb–about 40 feet of driveway–scared the hell out of me. On the way, Judy ran a red light or two but got me to Emergency in under 10 minutes, where I was swarmed by doctors and nurses a moment later.

They all stopped when one of them saw my right hand and said, “What the heck is that?” I looked down and my fingers were completely white–as though they’d been dipped in bleach up to my knuckles. Ischemia. Well, it certainly seemed to rule out an anxiety attack or some sort of digestive disorder…speculation by one doctor that left me pretty baffled and disappointed weeks before.

In my last post from a few weeks ago I’d just left for the hospital and left everyone hanging. Well, I was sort of hanging, too. But here’s what happened:

I had to be in the recovery area by 6:30 am, so it was dark when we pulled into the sprawling hospital campus. Judy, Jenny and Pat were with me–my surgical entourage. I was put in a nice, private little room as soon as I got there. And within minutes nurses were swarming around me “prepping” my body for double catheterization through both sides of my groin and possible ablation. Obviously if they’re going to be rooting around in my groin and snaking thin surgical hoses from there up into my heart, they have to do quite a bit of deforestation before going in.

They do not use Nair or Agent Orange or any other chemical to defoliate. An affable cherub of a nurse modestly drapes my privates with a blue fabric and then clicks on the electric razer. As other nurses stick me with IV’s, register my vitals, plaster me with EKG and heart monitor tabs, the razer snakes under the tiny blue tarp and shaves me down to somewhere around 12 years old.

I report this because, though the catheterization and possible albation are somewhat risky (“We could perfortate an artery. Damage the heart. You could die. There’s only about a 1% chance of that.”), the most uncomfortable process of the whole procedure was getting shaved. It’s one of those undignified moments in medical care that we don’t talk about but mostly dread. I recalled, as the razer’s buzz filled the room, how my brother Jeff used to describe how he handled the complete loss of dignity he endured during his life and death with Aids. “I just have to give up,” he said. So I gave up.

But my cherub barber was good natured and we all joked our way through it.

I was wheeled into the bright lights of the cath lab to U2 and Tom Petty, transferred from gurney to table, and then disrobed and draped with more blue tenting. I think my nads were the only thing exposed–but they gave me a shot of happy juice, the music seemed to crank up while one of the nurses flirted with me…well, maybe not. I was in happyland while they spent the next 4 1/2 hours peeking around inside my heart.

They were able to induce an arrhythmia and so ablated, or sort of cauterized, a spot within my heart to reduce that particular risk of sudden death.

Eventually I was back in my recovery room with another gang of nurses ripping tape and EKG contacts off my nearly hairless body. Still, I was able to holler out Kelly Clarkson’s name once in protest. Only one of the nurses got the 40 Year-Old Virgin reference…

So when the dog farts or belches or I see a preview for a Robin Williams or Will Ferrel movie or something else gets me laughing, I still have this pain in the chest that is unresolved. Shortly after the ablation, OHSU said it wasn’t unusual to feel pain in my heart, since “they’d been rooting around in it and it was probably tender in spots…” So I will hang with it for a while and see what happens. And keep my nitro close at hand.

My recent Emergency visit ended without much drama. They pumped me with more nitro and a nitro patch (isn’t Nitroglycerine explosive??) and shot three hypodermics of Metroprolol into my IV. After about 45 minutes the cow finally climbed down off my chest and some semblance of “normal” returned. Jenny and Pat had made their way to the hospital by trolley and bus in the dark. Doctors came and went. Opinions were uttered. EKG didn’t indicate I was having a heart attack so that was good. Later in the morning blood tests showed no additional heart damage.

There was some speculation about whether a bypass might work for me. But I have little–if any–heart muscle viable enough to attach a bypass. And what arteries are left are tiny and weak. “We could lose you on the operating table.” And I don’t think that means search and rescue would be clammoring around the room looking for me. We’ll see.

I am having more chest pains and tightness and pressure and dropping nitro pills more often as each week goes by. The waiting game for me to get bad enough to require transplant is moving into the later innings, I hope.

Now put another log on the fire. Jeez, it’s cold in here…

Back to Hospital

We woke up in the dark,  a little after 5, and now we’re heading out the door to OHSU.

Double catheterization to check electrical in my heart, then possibly ablation.  Info says 2 to 6 hours, we shall see.  I’ve got my little bag packed, a radio and a book.  You gotta be ready for anything in this game!

See ya on the other side!

Now go back to sleep…

Cracked Block

I had a 1939 Ford pickup truck when I was 22. It was stolen one night and when I got it back the next day it had a cracked block. I filled it back up with water and oil and drove it back to my apartment in Fremont, California. For the next week or so I had to resort to more than just water and oil. First it was STP, then it was Slick 50—both sludge-like oil additives. Mechanics out there will wince when they hear I resorted to dumping my first—and last—bottle of Bars Leaks into the radiator.

That’s how my heart feels.

I spent three hours at OHSU today. Two nurse practitioners and four doctors later I felt like I’d been to two different appointments. The first was processing a readout from the defibrillator installed just under my collarbone—my routine three month process. Then Dr. Rami came in for my regular appointment. They couldn’t have been more different or more frustrating.

I was explaining to Judy on the way over how I felt more breakable since not getting on the transplant list. There was light at the end of the tunnel when I thought transplant was going to be done. Now I have to learn to live—at least for a while—with a heart like a cracked block and hope it doesn’t crap out before I get to my destination.

As the doctor hung the huge, mouse-like monitor around my neck so it would hand down resting over the device in my chest, we kept up a nervous patter that fills the first few moments in any doctor’s office. Then she turned on the computer, tapped a couple of keys, and paper started folding out the machine, through her hand and onto the floor. As she scanned the running EKG she let out a little, “Oh,” and tapped a few more keys on the computer keyboard. A purple line suddenly appeared, rising from left to right, from 8:15 to 9:30 am on September 8.

I thought it was the huge event I had at mass where I’d forgotten my nitro and phone and drove home…but that wasn’t it. September 8 was a Friday and I can’t recall anything significant from that day. But evidently my heart did. For over an hour I was going back and forth through tachycardia and arrhythmia while my “beeper” was trying to pace my heart back to normal. It never actually did, with my heart finding its own way home to a decent, regular pulse. My “beeper” is set to go off at a pulse of 150, but I was at 150 and didn’t get shocked.

Karen left the office with a stack of readouts, came back in and printed a few more, and left again. A few minutes later she’s back with two other docs and they’re talking about my heart as though it was some kind of cross between a bad boy and a cripple. “…if it comes from the top of the heart that’s better. We can treat it with medication or do a catheter study and possibly an oblation if I need it. Oops, that’s Ablation! Though I can use Oblations….

There was quite a discussion about this procedure versus the risks of the medication I would have to take…blue sunburns (looking like a Smurf, I guess), constipation, liver damage, headaches, skin rash, and on and on. I asked if any body parts would actually slough off, but the doctor said, “No.” “If it was me, “ he went on without laughing, “I would take the catheter study and be done with it.”

“And if I don’t do anything?” I inquired. “It’s one thing if it comes from the top, another if it’s coming from the left ventricle—which is much more serious. You could have an event. (He actually said that). You could die.”

After all those docs left and Judy and I sat there adjusting to a new threat, Dr. Rami Alharethi came in, shook my hand and then pushed the pendulum to the other side of the room. All those tests I took last month show my heart is working adequately. He cannot explain my chest pains, chest pressure and weakness from the data on my heart. “We need to think out of the box.”

I wanted to smack him over the head with the box. We talked about gastrointestinal problems. He asked me about anxiety. DUH! Of course I have anxiety! I’m afraid I could die lifting the toilet seat up! It was tortuous. Just minutes before I’d had a gaggle of doctors and nurse practitioners pouring over the EKGs from my defibrillator and the results of my tests—they were all concerned and talking about studies and procedures. They yelled at me (well, it felt like yelling…) that I wasn’t taking nitro whenever I had ANY chest pain. That heart muscle was dying (“It’s like your heart is holding its breath”) when I felt chest pain and I need to stop it right away.

I’ve had lots of chest pains in the last few months. Most I wait and they go away. Or I stop doing what I’m doing, pull over and sit on a bench or a curb and rest, or flop onto the big chair in the living room and let my breath come back. But, no, that is not okay. Take the nitro!

But Rami is on the other side of the coin. He’s under the impression that the nitro doesn’t help. BUT IT DOES, DOCTOR! Okay, he finally seems to get that. So he prescribes a low dose, slow-acting nitro I can take daily. But he wants me to talk to my primary physician about gastrointestinal issues and anxiety.

Okey dokey.

A few minutes later we pull into JoAnn Fabrics parking lot and walk into the store. I stop just inside the doors and say, “I must be having an anxiety attack,” as I pull oxygen into my lungs and rest my weary legs.

So I’m dumping more Slick 50 and Bars Leaks into my heart hoping they will keep me alive until I get where I’m going.

Hmmmm. There’s a country and western song in there somewhere.

Now stoke that fire in the fireplace and grab a cup of hot chocolate. Winter is in the air.

No heart for now…

It’s been a month since my last post and lots of people have emailed and called and written to see if I’m okay.  I am okay.  The result of the battery of tests (stress test, cardio pulmonary, Swan-Ganz–through the shoulder–angiogram) were clear:  no transplant list for me.  Not right now.
That is weird news.  Bittersweet.  I sort of lost my bearings with the news.

My heart is producing enough oxygenated blood to run my body. My Ejection Fraction, at 25, has improved almost exactly what it was supposed to:  up 25% to about 25.  Normal is 60 to 70.  But it’s enough.  Enough.
Last time we were at OHSU, in the lab waiting room, two guys were sitting and comparing notes.  They had both had heart transplants very recently.  One was still wearing his facemask–less than 3 months from surgery.  I listened in as carefully, unobtrusively as I could.  Both had been put on the transplant list while in the hospital in evidently critical condition.  Sort of like the patient, Denny, in  Gray’s Anatomy toward the end of last season (he got his heart, but died right after surgery in the season finale…).

Both men seemed enthusastic about their lives after transplant.  One said, “I can do anything!”  I wanted that.
But it’s a reminder that there are many people laying in hospital beds awaiting hearts who have only days or weeks to live without a transplant.  Many die every day for lack of a new heart.

I am not critical.  In fact, I can do little things most days as long as I’m careful and don’t push my limits.  It’s not the life I want, but it is neither a bedridden existence.  I’m adjusting to this phase of my illness.  Some days better than others.

I’ll admit something difficult.  My relationship with the world these last 7 months has been defined by my mortality, by the drama of many hospitalizations, by an interaction with friends and family that was incredibly intense.  My head was focused on staying alive and well enough to get a heart transplant.  But I’m not going on the list right now, so who am I?

A month has been a long time to consider this dilemma.  Dilemma because my heart is terribly damaged (Heart Attack, Congestive Heart Failure), it will continue to degrade (Dilated (congestive ) cardiomyopathy), and I will get worse.  My risk of sudden death is still very high–although my defibrillator will help when those moments arrive.

I have a new task, then.  To live each day and balance my activity and exercise with what my heart can do.  On most days, that would eliminate vacuuming, lifting a bag of dog food into or out of the car, or reaching up too long to screw in a light bulb or down too long to tie my shoes.  Some days I can walk at a bit slower pace for quite a few blocks.  And I will.  I do.  Other days it’s a long ways up the driveway.

The last 7 months distilled life in a way that begged for chronicling.  Every day has been an adventure, many of them high dramas.  It was easy to write about.

I walk or drive or sit or lay, now, and chest pains will suddenly spread across my chest.  I get terribly scared.  Sometimes I pop a nitro or two.  Three and it’s 911 time.  No doubt that will happen soon enough.  But life has settled into living with my poor little heart, and that’s what I’m doing.

A friend wrote some months ago that I needed to respect my little heart and not make fun of it or put it down, because I had been doing exactly that.  I was angry with it and wanted to get rid of it and replace it with a healthy one.  That will come soon enough.

But, like a wayward friend or a broken family member, I need to find a way to not merely live with, but love this damaged organ that is working as hard as it possibly can every single moment of every day to keep me alive.  It’s a switch.  I don’t know how I’ll do it exactly or how it will work out.

Your prayers and notes and encouragement have been a balm for me.  Sometimes I have not written back, because I didn’t know what to say.  Now I do.

Keep praying and writing and visiting.  Life is short.

Now, get some firewood inside and put on your sweater.  It is Fall and Winter is coming fast.

–mike

Sing ’till I’m Winded…

“Tired of being tired.”

A friend of mine discovered, after years of depression, that a simple pill could change her life. But I know there will be days that taking that little pill will seem like too much, or just plain unnecessary. She’ll be wrong, of course. And then sad that she has to depend on a pill to “be normal.” Me, too.

My docs have been screwing around with my medications for weeks now, trying to keep me from bouncing on the floor again. So I take half of some pills and none of others. On top of that, I was directed to stagger taking some of the more severe drugs throughout the day. Lunchtime. Dinner time. It’s a big puzzle and I do not know how those with more serious mental impairments can possibly take proper care of their own medications. But for all the work, one expects improvement.

Maybe, with less medication, I’m getting closer to what my heart really is. I’m frustrated and tired of pills. And frightened where this medmess is taking me. There’s nothing dramatic, here. Just a nuisance of disappointment. Some days I just want not to take any pills. Oh, I won’t do that, of course. It would be foolish and immature and selfish. But sometimes I do feel quite foolish, immature and selfish.

I’m alive and I can read and type (some) and cook a bit and even walk around town. That’s probably thanks to all these swell pills. But with the cuts and changes, strange things are happening.

I go to bed and promise that tomorrow will be a better day. I’ll have energy.

I wake up the next day and I DO have energy! Then I get out of bed, stand, and step toward the hallway or bathroom. Within seconds I have to hold something while I sway in place, the room spins and my body spasms a little bit. Coming out of it feels like a mild high. And then I am exhausted.

Everyone says to rest. I’m merrily chastised as incapable of actually resting the way I should. So I do rest. Lay on the chaise lounge in the backyard reading Clive Cussler. Or sprawled across the Carter Smiley chair watching Hardball with Chris Matthews. I cannot bring myself to lay in bed.

The results are always the same. When I get up I can stagger a few steps before the dizzyness sets in. Most of the time I have to collapse into a chair. Sometimes just put both hands on a table or desk to stabilize. It passes. A mild high. And I am exhausted again and need to rest.

There are days when I can walk for blocks through a festival or park or stores. If I choose the right speed I can go quite a ways. But the price is usually exhaustion later in the day or next. Being around friends and family animates and energizes me. It seems like I can go for hours nearly “normal,” but the crash comes sooner or later. It’s the E in Meyers Briggs–gaining energy and motivation from people around me.

Friday I finally get the tests that will really indicate where this is going. A Pulmonary Function treadmill test and an Echocardiogram. What should I pray for–good results showing improved heart function or poor enough results to get me on the transplant list? I feel weaker and more ill than months ago. I want to feel energy. I want to not notice a rise in the road or a few stairs. Stand up without tilt-a-whirl. Play with the dog without collapsing in exhaustion and breathing like a marathon runner.

Who, though, doesn’t want health when they’re ill? I am still lucky each day to be alive and, despite letting you in on a part of my internal dialogue, laugh and play most of the day. I can still kick your ass in Hearts and act like a 6th grader. I sing until I’m too winded and keep on walking to see every booth, every piece of art, and every fruit and vegetable the farmers have harvested.

My one month reprieve on health insurance expires 8/31. Within the next week or so it’s possible I will know a lot more about the future. Two years ago I was driving aimlessly around the Pacific Northwest uncertain of how I could live. Today life is precious enough to take whatever pills or treatments I ought–with a faith and history fine enough to be not afraid.

Thank you for all your prayers and notes and encouragement.

Now get back to work.

Finally, I meet the elephant.

When I jumped out of bed and quickly got dressed for church this morning, I felt great. Yeah, my cracked ribs complained when I slipped the black long-sleeved Iranian Center for Peace shirt over my head–a souvenir from the Iranian Festival in Portland yesterday. Still some light strobes appearing around the perimeter of my sight. And a tad dizzy when I raised my head back up from tying my white-on-black flame shoes. But I drove off to church feeling some energy and looking forward to singing at mass.

Once in the church and in my familiar end of the pew, I pulled out the songbook and practiced quietly as the cantor practiced. I recalled the incredible experience yesterday of walking under the trees of the park blocks in Portland, where Jewish Klezmer music from the Farmer’s Market blended with the plaintive tones of a woman singing just a few hundred yards away at the Iranian Festival. I was proud of Portland and wished the world could find this kind of commonality.

I sang with my usual gusto as mass began, comfortable and at peace with these swirling images of diversity and song mixing in my head and in the rafters of the church.

Then a pain radiated out from my heart into my chest. Pressure began to build. As I sat down for the homily, I kicked myself for leaving the Nitro at home. Phone, too. So I breathed and tried to relax. By the time the elephant had climbed up on top of my chest, I was beginning a mild panic. Will my beeper go off? Should I ask someone to call 911? Is this a heart attack? Might I die right here in a church pew–and might that improve my odds with God?

I sat there throughout the sermon considering my options and trying to calm the beast on my breast. Then we stood to recite the Creed and I nearly went over. I turned, left the pew and made my way out of the church and to the car.

It seems so idiotic to be making life and death decisions at that moment when I could so easily have brought my phone and Nitro. A pill under my tonge and a call to Judy and I’d be home in a flash, probably fine.

But I got in the damn car and began a seemingly endless drive home–with the elephant still on my chest and sweat glistening on my forehead. As I passed Fred Meyer, I thought for an instant, “Maybe I should stop in and get that power steering fluid for the Jeep.” The thought of collapsing in a grocery store, however, sobered me of the idea quickly. So I drove on.

Every light was red and whole minutes ticked by in turturing slowness.

Parents in SUVs on their own way to church drove in front of me with the caution their precious cargo of chidren deserved.

I breathed in deeply and begged the pain and pressure to subside. It did not.

Finally, as I pulled onto our little unpaved road and swung the car in front of the house, I wondered if I should even get out of the car and try to walk. Maybe I should just lean on the horn and hope that eventually Judy will come out.

But I opened the door, got out and stood. The world spun but I did not black out. I walked down the steep driveway and came to the front door. It was locked. I fumbled for the right key. Stuck it in the doorknob and turned. It was unlocked but the deadlock apparently was not. I’d gone out the garage door. I fumbled again, this time to get the key into the deadlock.  Fiinally the door was free and I pushed the thing open.

I made it down the hallway to the bedroom, grabbed the tiny little nitro bottle from the dresser and tore it open. Popped one pill under my tongue and layed down on the bed, exhausted from breathing with the beast still there–and the pain.

Man, I was scared. As I waited for the nitro to dissolve under my tongue, I sent every monitoring nerve to my chest to find any evidence of diminishment. I’m supposed to wait five minutes before taking another pill. I think I might have waited three. As the second pill disolved, I waited for the the pain and pressure to subside. Judy came in from the shower and I told her to get the phone and the number for OHSU just in case. And then we waited.

This is one of those moments where time is suspended. Do we call 911? Or the hospital? They say to wait 5 minutes between nitros. But on the third it’s time to go into the hospital. I held the little bottle in my hand, ready to pop another but greiving another hospitalization. Judy could only worry.

And then it began to subside. Slowly the pain bled away and the pressure transformed itself from elephant to goat to dog to large bird and then…it was gone. Just a slight pressure remained. My usual.

I lay there on the bed feeling very lucky and very stupid. Phone and nitro. Everywhere. I made a promise to myself.

After what I thought was a reasonable period of rest, I got up and stood to head into the living room to see if I could catch any of the talking head shows before they were over. The room spun and I sat down heavily. And then some kind of spasms jerked me like a puppet. I laid down. Judy cried.

It is a terrible ride and I think it might be worse for the passenger than the driver. I held her and apologized.

A few minutes later I sat up on the bed, against Judy’s request. And the spasms hit again and she cried and I fell back onto the bed and held her and apologized once more.

I stayed there for a long time this morning. My blood pressure was 63/36–pulse 72. Not much blood moving through me, of course.

Now it’s after 2:00 o’clock in the afternoon and I’m typing this as quickly as I can. Still a little whoozy and monitoring closely the chest pressure that remains.

This is the first tiime I’ve met the proverbial “elephant on my chest” that I’ve been hearing so much about.

I don’t like him very much.

Now get back out there in the garden and prune something.

I usually come to this site with an event or news that I want to pass on. Today, as it has been every day for the last three weeks, it just continues to slowly slide south. I keep waiting for that good day. Breathing easily. No pain. Walk a block and ready for another.

I”m in an odd sort of limbo and don’t feel particularly inspired to write about it. Let me take a crack.

Since my black out and kidney emergency, I’ve pretty much been in a slow decline. Whereas a couple months ago I could walk pretty far and possibly do a little work around the house, now my arms turn to cement just holding them up to wash my hair. A walk to the mailbox is like dragging two wagons full of bricks, each tied to an ankle and pulling me back.

And the Tingler is back with a vengeance.

The other night I had my worst episope yet of chest pain and pressure. It was a Clydesdale on my chest–not quite and elephant. Two nitros later it began to pass. Scared us, though. Now I’m ridin’ around with a medium-sized Gerbil always lying across my chest. Not big. Not life-threatening. Just pressure. But those chest pains are coming more often and more severely
Medically the docs are slowly knocking off medications in the hopes that one of them is producing these side affects. Light sensitivity, flashing lights, dizziness, no appetite, weakness, muscle pain, numb extremities…and so on and so on. So far nothing has produced better affects, and meanwhile it feels like my poor little heart is is slowly giving up the ghost. It certainly deserves a vacation. But not quite yet…!

Health insurance has been re-upped through August. Yaaaaay! Hopefully I’ll have something set up by September. Getting very dicey in that department.
We’ve had many visitors up here over the last few weeks. Thank you all–it has been so much fun! Sorry that I’m not much use for more than sittin’ around and jawboning. But, hey, there’s lots of laughing! You also keep me from curling up in bed for hours on end. I rest, but I wake up still exhausted. Ironic. Well, I’m exhausted after talking, too, but that’s a lot more fun.

Church on Sunday has been great. Claire accompanied me last Sunday and it was a gorgeous service. So great to have her with me in our “Catholic” element. I could sing but by second verses my air wasn’t quite up to snuff. Man, can I just SING for God’s sake!!??

I’m tired and not a small bit discouraged. As we knock off medications, I slip further down the line. What do we have to do to get moving on a new heart, here? Hopefully I’ll find out this month as an Echocardiogram gets scheduled and we can really see how bad this puppy is.

Until then, I don’t want to leave you in a bummer. This week is First Thursday in the Pearl and Sophie Lux plays at the Doug Fir Lounge. Wow, what a beautiful, rich place is Portland.

Wish you were here.

Now go check out Priceline for cheap fares to Portland!