Mortality sucks

The phone rang this morning early. It was still dark, the wind had finally stopped roaring. When I picked it up, Pat said from the other line, “I’ve got it.” A few minutes later he knocked on my door. Nora had died at about 5:30. We all went back to bed, but not necessarily to sleep.

I met a few hours later with Howard Song, M.D., Ph.D. Cardiothoracic Surgery Director, Thoracic Aorta Program, Assistant Professor, Adult Cardiac Surgery. Evidently Dr. Song had been part of the inter-disciplinary discussion and debate about my heart. Their conclusion: open me up and do everything they can to get some more years out of this heart. And soon.

The specifics I’ll go into in just a bit. But, as I talked on speaker phone to Judy down in California for her father’s memorial, Jenny and Pat sat at the table with me–a surrealistic scene with death and mortality surrounding us in the room. No specters, no imagination required. The four of us heard all the words we said…survival rates…when to have the funeral…do it in the next couple weeks…when to gather the belongings…preparing the room for the memorial…who to call…the words just rise up over the table like storm and hang there threatening and dark.

It’s not so macabre, really. It feels a bit like Four Weddings and a Funeral–so insane that it ought to be fiction. But it’s not. And so we dither on, making jokes, holding each other, making allowances, trying to be normal. Normal. For our family a stretch by any measure–a joke today.

Just hours ago I sat by Nora as she lay dying. And even though I am glad her struggle is over, I can’t forget her at the wedding just last April nor at our house at Christmas delighted as Pat opened what he couldn’t know would be his last Christmas presents from her. There were no threats over our lives. Leo (Judy’s dad) visited and we laughed. I was working hard and Nora was settling into a new and better life with health insurance and a supportive community.

And this morning we’re sitting around a table with life sagging around our ankles. But we’ll be looking at it like a sack race…hobbled and slow but getting there nonetheless. It’s weird to think that we have been well prepared for this moment in life. We have all lost much. We are graduate students of grief. A cruel person once said to me that, “Your life is pathetic.” It was on the heels of an avalanche of death in our family and I was struggling to cope. Pat and Jenny and Judy–they have been here before. We can tell the dark jokes one moment and then be silent for minutes or hours. We don’t have to talk about it. And we can when we do. For my “pathetic” life I am grateful to be so present and unafraid in the face of this anguish of life.

Well, unafraid? Not precisely. I admit to being afraid as the surgeon this morning described opening my chest and “making the most” of this surgery to “buy me time.” There are three major arteries in the heart and two of mine are “gone.” There has been quite a discussion going on among my cardiology/heart failure/transplant team about what is and is not “viable” in my heart. Some of the debate has raged right before me in my hospital room.

My original cardiologist said without doubt that I would need a heart transplant. Evidently, after all the debate, this is still true. Trouble is, a transplant buys me maybe 5 to 10 years “on average.” One cardiologist, Dr. Craig Broberg, talked over my shoulder pointing to a computer screen during an MRI study I participated in some months ago. Pointing out some bright spots on my heart, he said, “I think there’s something there.” Something there being viable tissue where everyone else thought there was none. I’ve seen him a few more times in my many hospitalizations and he has been steadfast that there was a possiblity that there was heart tissue to get more blood to…

That position has prevailed. My heart pain and pressure has also been a factor in this determination. If it hurts, it’s alive but not getting enough blood/oxygen. So let’s go in and do it.

I have heart failure. My EF is at 38%–a far cry from the 11% I started at but still risky by open-heart surgery standards. Fortunately, the team at OHSU specializes in heart failure and they do surgeries that “others have declined.” So Dr. Song and his partner in this surgery, Matthew Slater, think they can do something to give me more time with this heart.

They’ll open me up and run a couple new “lines” for me into the ventricular side of my heart. Right now it’s getting very little blood and, the consensus is, producing the chest pain and pressure that’s requiring nitro a couple times a week and keeping me away from hills, stairs, boxes and rambunctious play with the dog.

“So what’s the downside?” I asked. Well, most people would come into this surgery with a mortality risk of about 1%. Yours would be 3 to 5%. Hmmm. I’m thinking, “Shoot, that’s a 1 in 20 chance of not making it.” “How do you do this?” I asked him? “Open up a human being and hold their heart and know that some are going to die?”

“It’s what I do. We’re good at it. We do what others cannot or will not. I think you’re in the right place. We’re also one of the few facilities that have a Left Ventricular Assist Device (yeah, the same thing Denny had in Grey’s Anatomy) that can keep you alive in case something goes wrong. We can keep you going and get a transplant in there.” Hmmmm. I’m picturing him with his hands in my chest, holding my heart. This young guy. A nice young guy. Where does such confidence come from? But I didn’t ask.

“You’ll need a transplant. That doesn’t change. But if we can get you a few more years–maybe even ten years–and then get you ten more with a transplant, we can get you officially to old age. That’s our goal. That’s what we want.”

I thought he was done. I asked him to go get the heart model and really go over what they were going to do. And he left the room and came back, doing a little physiology class with me that Dr. Herschberger had declined to do last Monday.

“There’s something else.” Didn’t expect to hear that. Something else. I don’t want to hear, “something else” from my cardiac surgeon. “The bottom tip of your heart, at the bottom of your left ventricle, is bulging out. It’s dyskinetic (not viable tissue) and it is keeping some of the blood that should be going out of your heart pooling, instead, at the bottom. We’d like to do a ventricular patch while we’re in there.”

He held the model and indicated where they’d slice into my heart and put in the patch. Now THAT’s heart surgery, I’m thinking! It makes sense, though. They want to maximize this surgery. Okay, then. Here’s a movie if you’re up for it…WARNNG: though this is actually available for continuing education credits for physicians, it includes actual footage of the ventricular reconstruction they’ll be doing on me. Not fo the squeamish or feint of heart. Ha ha, feint of heart…

The question is, “When?” I told Dr. Song about Judy being in California for her father’s memorial, my son-in-law’s mom passing away at 5:30 this morning…”Nothing can happen to me. It would NOT be okay. And I need to talk to my family about when to do this with everything that is going on.” I didn’t tell him that my son was coming home for Christmas on the 22nd. He made no bones about it. “If it were me, I do it within weeks. You should not be doing anything. This is not something you should put off for a month or more.” Hmmm. I’m doing a lot of hmmmming in my head…

I left telling him I would talk with my family and call back with an earliest date.

And so it was that I was sitting at that kitchen table a few minutes ago.

Judy said, “Go for it. Whenever you need to do it.” Jen and Pat want me for the next 4 days. After that, whatever. I need to talk to Gary because he will be home for just a week. Jen thought maybe I should do it while he’s here…but in my heart I want to live with Gary and Jenny and Pat and Judy for Christmas…not lay in a hospital, not have our family yet again fearing a visit from the Grim Reaper.

I just need to talk with him.

So there you are. Mortality hides behind the bushes and just around the corner most of our lives. And then, often without warning, it jumps out and swings its scythe with wild abandon. “We know not the time or the age…”

I intend to jump before it hits me. Maybe I’ll get cut, but I’ll be here on the other side.

God bless Nora and Leo. Two odd ducks. Delightfully weird and funny. Home, finally, with their spouses.

God bless Judy and Susan and Bruce, her brother and sister, and Pat–all now orphans.

And thank you for blessing me with this life, with my father, with this great love–Judy–and my daughter and her husband who are family and friends, and my sons Gary and Brian, and the wonderful friends who are in my life, who read this blog and offer their thoughts and prayers so freely for me.

Now go and be thankful. It truly is the season of hope.