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.

I’m Alive

Three weeks ago I woke up from open-heart surgery. The very first thing that I remember is the realization that I was alive.

I’ve had too little stamina to take on writing about this moment and the period afterward. Putting what I felt, and feel, into words has also escaped me. But I think I’m ready to give it a crack.

This last year has been a strange one. Coming to grips with my fragile heart and poor mortality prospects meant that I needed to get comfortable with the idea of dying. Not to expect it, but to reconcile with it. I think I’ve worked it out.

The morning of surgery, however, was a bit different. As most of the hair was being shaved from my body and various lines installed in my arms, I thought a lot about the trauma that was to come. I wasn’t worried about the aftermath. I wanted to really, really be prepared that I might not survive the surgery, and yet expect to make it out just fine.

That’s why, when consciousness returned, I was so pleasantly surprised to be alive! Despite everything done to my body, inside of me my spirit just soared. I thought, “I have another chance! ” My kids say the first words I said were not understandable…”wh..,” “w…,” “wh dd dy doo,” which they finally deciphered as “What did they do?” There were a lot of questions before the surgery. How much of my heart was viable? Are there any places on the left ventricle to run some new blood lines? How much of the heart is dead muscle, especially at the bottom tip–enough to warrant opening the heart and radically remodeling it? More blood lines and remodeling would be my best chance for surviving for a while with this heart, staving off a heart transplant for years.

“Everything. They did everything.”

For the first time in a year (I was diagnosed with Heart Failure on January 13, told I needed a heart transplant on January 14. Half of all heart failure patients die within one year of diagnosis.), I really had hope. I will never forget that moment, nor be more grateful for the gift of life.

My surgeons were ecstatic. It seems I may have a shot at more than just a couple years to heart transplant. One doctor even told me I could be running in 5 to 6 weeks! The lines running out of my body (neck, two tubes from chest, both arms, catheter, and tube down my throat) were insignificant compared to this new found hope. As each was drawn out of my body (okay, that was weird and yucky to feel something snake its way out of the inside and out through simple holes just below my ribcage…) I felt more free and complete.

I don’t remember much on the day of surgery. Whether I sat up or stood up…I don’t know. I do remember being asked if I could stand up and walk a bit shortly after the ventilator was removed. “Get up and walk?” I thought, “Damn straight! Get me outta here!” And walk I did as much, as often, and as long as I could for next 5 days.

On every walk I recall gripping the glass heart from the Whitty family. Nurses up and down the hallways would ask me what it was and I would explain. It never left my hand while I endured the various insults to my body. It was a connection to a spiritual community that really did give me strength and inspiration.

Twice I have stood at the sanctuary of St. Clare church receiving the sacrament of Healing. At first alone and just weeks before surgery with many hands upon my shoulders. Was my heart miraculously healed?

No.

But the dearest support of so many people, together with children, my Judy and my friends, people I don’t even know at Regence who read my blog and send their prayers and good wishes…all really and truly kept the miracle of being alive fresh in my newly remodeled heart.

Jan and Claire flew up from California to stay with me for 3 days. I had only just gotten out of the hospital. These two close and wonderful people loved me so much during those first few days that I will always be in their debt. We laughed (God that hurts) and talked and ate and shopped a bit. It is what healing looks like.

Judy, whose dad passed away just weeks before, encouraged and loved and fed and guided me through recovery. No longer able to do laundry or vacuum or much of anything, she picked up all the slack and still found the energy to laugh and to hug. Jenny and Pat hardly left my side. Even with the funeral of Nora, Pat’s mom, just a few days past, they plied me with dark jokes, videoed me walking the halls, Pat blogging entries for me to keep you all up to date, coming up wth important questions I wouldn’t have thought to ask doctors, reports from the outside world…each and every moment precious beyond words and energizing me to keep going.

A visit from Fr. Tom, a bouquet of yellow flowers from the St. Clare parish staff, Kelly’s dedication of one song to me that Sophe Lux performed, Jaye and Ashley and Caitlin singing in my room and bringing me Communion, Jim Whitty’s arm as he helped me back from Communion, and meals prepared and brought to our house by confirmation students and staff, organized by Anne Marie. Sr. Anna’s delight to find Judy at mass with me! My first long walk with Bob followed by lunch and listening to a talk by Joseph Grizzone, author of Joshua. Gifts and notes from Vernique and Phillipe and the Conti’s and so many friends. Janet’s calls. My dad’s daily calls. Cards overflowing our mantle…

Healing looks like that. Many hands. Many hearts. Many prayers.

Perhaps I wouldn’t have been able to accept this kind of healing at another time in my life. I’d like to think I could, but more likely I would be giving, not receiving. But today, 22 days since opening my eyes and finding myself alive, the thrill and promise of it hasn’t left me.

From the darkness of just a few years ago, when I was too hurt and anguished to hold onto life, to this moment filled with so much hope and affection and life…well, that my friends, that is a miracle. That is a miracle. I do believe.

Thank you. You have given me life and inspiration. Judy and I have hope.

I am alive!

Give me a moment….

Though I’ve been home over a week, I haven’t worked up a lot of energy to post on this blog. I think if you tied me to the bumper of a Volkswagen Thing and dragged me down some railroad tracks for about 30 minutes–EVERY MORNING–this is just about how I feel. I’m getting better every day, I know that.

I can hear my heart for the first time in years.

Coughing as become less an issue as the much cleared from my lungs. What a surprise, though, to sneeze. Whew, felt like I was going to blow a lung through my ribs! And laughing? Who’d a thunk it. Hurts like hell, which makes me laugh more, and finally convulse with a sideache while I clutch my heart pillow against my chest hoping it’s not going to finally explode apart…

Right now it’s simply fatigue, I think, that is my enemy. I’m trying to walk and get outside to move around, but up here in Portland that’s quite an adventure in itself. Three to four inches of icy snow. Yarks. Falling down. Bad.

Now my nose freezes in the frigid air for some reason–never happened before this surgery. And my hair seems charged with enough static to power a small factory. I think maybe it got scared. Me too.

I am tired now and haven’t really written much. I will take some more cracks in the coming days. My chest hurts as I try to hold my hands over the keyboard and I’m tired.

But I’m getting better every day.

Too many to thank right now…all the parishioners from St. Clare’s who bring dinner each day and call and visit and pray, my glass heart talisman and Stanley from Erin, hideously funny gifts in the mail from Veronique and Phillipe (there’s that laughing pain again!), a long visit with very best friends who flew all the way up here from California, a gentle hand helping me back from Communion at church last Sunday.

Thank you for your posts and comments and emails. Each encouragement and prayer adds to the others and it’s much of what I’m building my recovery upon. There are some wicked serious thoughts inside me, though, that won’t see light today.

I need to rest.

Now get back to work!

A small update

Jenny and I saw Mike this morning and discovered that he had been up most of the night coughing. He was visibly exhausted from this as everytime he coughs, his chest would ache at a level that I cannot fathom. Never having had my ribs cut through with a saw, I can only hope to imagine what level of pain this would cause. Luckily for him and those of us who are concerned for him, Dr. Song said that of all the post-operative problems that Mike could be having, this is the best one. Coughing is important to clear the lungs of any fluid that may gather there. His lungs have been listened to and there is nothing in them which is a very positive sign. Dr. Song said the coughing would get better and that Mike would be moved out of ICU sometime today and into a room in the Cardiac ward where he would be more likely to get rest, something that has eluded him since his procedure.

Mike wanted me to convey that he has in his possession a glass heart that was given to him by a wonderful family from his congregation at St. Claire Catholic Church. This piece of glass, beautiful as it is to the eyes of the unknowing, actually contains a hidden beauty that only those who know the history of it are privy to. While I don’t know the entire story behind it, I do know that this trinket as one OHSU nurse referred to it has been with others who have been through life-altering surgeries. It has been touched by the prayers of many people over its history which I believe is around 10 years. It has served Mike as a focus point and a physical manifestation of the love and support that St. Claire has given him since he became a member of their congregation last year. It has been a symbol of the peace borne from the knowledge that a community of people have him in their hearts and prayers. Mike knows he is being prayed for by many. He is well aware that his St. Claire community is at his spiritual side throughout this amazing and harrowing experience. I rarely see Mike at a loss for words, but when talking about what this piece of glass he holds in his hand means to him, it is obvious that words alone don’t do his emotions justice. It has been and will continue to be a cornerstone of his healing process.

Thank you Whitty family for this piece of glass whose meaning eclipses its physical nature. Thank you from Judy, Jenny, myself and the rest of his friends and family. It is people like you that make a difference in the lives of others and I know Mike wants you to be aware of what an impact you have made in his.

Pat

Let’s do it

Jenny and I dropped off Gary and Sarah at the airport at 5:30. They had already been to the hospital at 4 to see Mike before they left. They informed us that the breathing tube was about to come out as they were leaving. That was good news. The healing process has begun. Getting the breathing tube out was a great step forward for Mike and all of us as well.

Jen and I got to the hospital around 6 this morning and saw Mike wide awake and without breathing assistance. He was talking too. His voice was scratchy due to the circumstances of the last 24 hours, but it was his voice and without a doubt, the sweetest sound Jen and I have heard. Mike, just hours removed from a life-risking surgery, was his wonderful self again. He was happy to communicate and we were thrilled to hear it. There were three words in particular that we were happy to hear. When the nurse asked Mike if he would be willing to try to sit on the edge of the bed, he emphatically exclaimed, “Let’s do it”. Really? Did you expect anything else from him?

Not only did Mike sit on the edge of the bed, he eventually stood up and sat in a regular chair for nearly an hour. During this time he drank a little coffee, took some pain medications, and chatted with us about…well, stuff. The main thing that he spoke about was, ironically enough, his inability to explain how he was feeling. Not the post-op pain that we all knew was inevitable. Not the nausea that accompanied his first movement and intake of fluids in nearly a day. What eluded Mike was the words to describe how it felt to be alive. Just to wake up and know that he did it. He has a week in the hospital to find his adjectives, but elated, relieved, overjoyed, blessed, and grateful all come to my mind right away.

This morning, Jenny and I saw a man whose love for life and will to live propelled him off a hospital bed that many would have just as soon stayed in (at least for a while longer). Mike didn’t seem to care or acknowledge that staying put was an option. He was ready to feel the Earth (at least the floor of the ICU) under his feet again. The words may escape him for now, but he is infinitely grateful to be alive and recovering. His spirits are great and he is ready to do it.

Here are a couple more of the pics that Jenny and I took with our phones in Mike’s room.

These are the incisions on Mike’s right leg where the vein that now resides in his heart was taken from.

This is Mike with his heart pillow that he uses when he coughs. Coughing is painful for him, but essential in preventing pneumonia. The heart pillow is from OHSU and has an accurate depiction of the actual organ on it.

Keep up the prayers and love. Mike greatly appreciates it as does Judy, Jenny, Gary, and myself.

Pat

Just a few hours

It’s just weird to think that in a few hours I’ll be in surgery with a couple of young doctors opening up my chest and re-modeling my heart. I’m going to bed in a few minutes. Have to check into the hospital at 6 am. Don’t know if I’ll get to sleep or not.

Judy remarked today how every once in a while grief just steals into her heart. No notice or reason. Just the sudden awareness that her dad has died and is gone. It comes and then it goes. A life of its own. That’s how my fear rolls around. Most of the time I’m distracted or unaware. Then I suddenly have this awful sense of being opened and get afraid. Just for a couple seconds, sometimes.

There are so many people who have offered wonderful prayers and thoughts and notes. One family prayed over a small glass heart that has been handed down through the years to people undergoing serious health issues. They presented it to me Sunday morning and I will take it with me to the hospital tomorrow morning. What an awesome symbol!

My dad sent a flannel blanket made by people at his church, and over which they prayed. That will be in my bag, too.

It is a mystery what they will find inside me tomorrow. It has been quite a subject of debate. I should come out with a stronger, more oxygenated and better shaped heart than I have tonight as I write. That’s my goal!

I have family here with me, and the prayers of those who are away. My church community has been incredible–both in their support for me and for Judy. Even my neighbors have been comforting and inspirational. I am lucky.

My very good friends Claire and Jan are coming up in a little over a week. I can’t wait to visit with them and celebrate my successfully remodeled heart!

I just wrote a note to one of Gary’s very good friends, Christie, whose father died just weeks ago.  I remember standing in his living room with him, watching Gary and Christie all dolled-up and getting ready to go to a Cotillion.   I told her how proud her father was of her that evening and how saddened I was to hear of his death.  She is a great friend to Gary and I am reminded of my own good fortune in my children and in my family and friends.  That’s a wonderful reality to touch this night.

I don’t think I’ll get back to this blog until I’m home, unless I can get a laptop into my hospital room and get on the web.

Until then I am grateful for your prayers. Please direct them to my surgeons–Howard Song and Matt Slater–that they are coming off their week’s vacations rested and ready, and that they didn’t party too much New Year’s Eve!

Now get back to work.

A fixer upper…

So in 5 days I’ll be remodeled.   Sort of a fixer-upper heart job for which Howard Song and Matt Slater are my contractors.  Tuesday morning at OHSU, a little after 6 am, they’ll put me under and open me up.  SVR is a relatively new procedure that has the capacity to extend my life–without all the hospitalizations and emergency room trips that have come to populate these last 12 months.  In fact, this surgery will come just 10 days before the anniversary of my Congestive Heart Failure diagnosis last January.  Wow.  It has been a long year.

I recall reading many academic/medical papers about Congestive Heart Failure back when I was first diagnosed that reported that 50% of CHF patients die within the first year of diagnosis.  So I believe I am going to beat that one in the next few weeks!

These days before the operation feel surreal.  I’m an optimistic guy.  I expect things will go swell.  But in the back of my mind (and Judy’s, and probably Jenny and Pat’s…) is the reality of mortality.  It’s hard to dismiss the words of my cardiologist just a few months ago who said he didn’t think surgery was a good idea because, “…I’m afraid we’d lose you on the table.”  Judy was there when he said it.  We’re both polluted with those words.

My heart sucks.  No question about that.  But OHSU has proven itself over these last 9 months.  I could easily have died several times, but they’ve pulled my butt out of the fire and given me heart function that should withstand the rigors of this surgery.  So I trust them.  I am gambling this operation against a near certain mortality of 50% to 75% within 5 years.  And if this works, I could have years before the next step–heart transplant.

So I am not doubting the risk/benefit tradeoff.  Nor am I doubting the Cardiology team and surgeons.  Or my own ability to recover.  But, truth be told, there niggles in my head the reality that one of the greatest risks is death.  And so, when I look at an expensive coat at Nordstom’s with Gary and Pat, the wisecrack that, “If I get it, it might just be part of my estate…” is one of those morbid moments that contain dark truth.  Dark truth that I often think about.

How many times have you asked someone, or been asked, “What would you do if you only had a week to live?”  Not so funny question.

I went to Jenny’s office on the top floor of the Regence building after we’d returned from lunch.  Many people shook my hand and offered me their hopes and prayers and best wishes–many from simply reading this blog. For some of them, as with some of the staff at the church this morning, I look awfully good for someone going into open-heart surgery in just a couple days.  And it’s true.  I’m neither feeble nor gray.  Every part of my body is working great except this darn little heart.

So I accepted the outstretched hands and the thoughtful, prayerful notes of encouragement.  And made a silent prayer of my own that these be enough for me over the coming week.  We have buried two parents in the final weeks of December.  I refuse to start the New Year off with a third.

I am told that I will be in surgery for “a long time.”  As soon as they have any word, I’m sure Judy/Jenny/Pat will be on the horn letting everyone know.

I will be in the Cardiac ICU for a few days.  Possibly on a ventilator.  Then I will be transferred to the 11th floor–the “healing ward” that I have visited many times before.  I’ll be in the hospital for another 3 to 5 days and then home to recover.  It’s my goal to be at mass on January 14 when one of our Confirmation staff, Caitlin Whitty, gives a talk.  By the end of the month I’m hoping I can make the last Confirmation session of the second quarter.

I know that there will be many positive thoughts and a multitude of prayers offered on my behalf on Tuesday.  Thank you for those.  I for one am going to turn my attention beyond the surgery while enjoying every moment before it.

Now get those resolutions finished…2006 is coming to an end and the hope of a new year is upon us.

Of the Christmas gene

Sunday our church goes out to care homes and sings Christmas carols to people like Nora, who manuever hallways in wheelchairs and walkers as they live out their last days in, too often, loneliness and isolation.  I’m glad–and proud– that Nora had a constant stream of visitors in her last months and weeks.  No doubt she knew she was loved very dearly.

But on Sunday, as we moved from place to place, I remember most the hands of these eldest among us.  Resting on the arms of worn chairs and the cold metal of various wheeled contraptions, they were gnarled and spotted and ancient.  Some trembled.  Others were twisted together like roots.

We sang with joy and gusto, even if not so much on key.  Sometimes the songs started too high and we were left squeaking our way through “Gloria” and “Rumpa-pum-pum.”  Some songs we sang two or three times to requests that often had no releationship to the song sung just a moment before.  Reality just a winter house of mirrors inside some minds.

One woman, Francis, was delighted to tears and asked each and every one of us our names, pausing and considering each one carefully.  As we sang her bright eyes swept over and met each one of ours.  For just one poignant second she allowed us through those crinkled windows a glimpse of delight.  The words and the tunes carried her to many places in that short time.  She took us there with her and it was almost enough for any Christmas.

This morning I opened my email and pictures from Gary streamed from Holland to Portland.  One was of a dorky Santa with a wig askew and a Bucholtz smile.  I laughed so hard, but there was a catch in my throat.  He will be home for Christmas soon.  And he has my Christmas gene.

Jenny and Pat and I watched “It’s a Charlie Brown Christmas” and “the Santa Claus 2″ last night.   When Snoopy laughs and Linus says, “…and the angel of the Lord…” there is another catch in my throat.  My daughter has that Christmas gene, too.

Somehow all my children will be “home” for Christmas.  With all the terrible losses that have pile up these last weeks, the funerals and memorials, the going through belongings, the collecting of music and pictures…well, how is it that I find myself singing with these new friends to people who reflect so powerfully the last months of Leo and Nora’s lives?  And here gathers my own for this odd Christmas, sandwiched as it is between memorials and life-risking surgery.  A picture of my son arrives through the wires from across the world and brings tears of joy to my eyes.

And I sit by the fire watching Charlie Brown for the third time this Christmas and still I am caught by the history of my daughter sitting just feet away from me, only a blink away from her in Strawberry Shortcake pajamas with Honey Buns and hot chocolate.

I hope that our caroling brought moments like that to our aged and withering audience.  That for just a moment they were transported to their own living rooms and fireplaces and Charlie Brown and hopeful, dreaming, innocent children.   That they will recall laying on the floor outside their children’s door listening to the hushed discussion of Santa and toys and presents, eyes and heart welling with that miracle of being a parent.

That is enough for Christmas for me, no matter what the future brings.

Now go out.  Go out and sing.

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.

March 1, 1858

Catherine Latapie was 38 years old and suffering from Ulnar Paralysis, a paralyzed arm with crab-like deformations of her hand.  She dipped her arm in the tiny spring that Bernadette Soubirous had uncovered at the direction of “Aquéro,” the lady who appeared to Bernadette in the Grotto that we now call Our Lady of Lourdes.  Bernadette was 14.

Catherine Latapie instantly regained full movement of her arm.  Hers was the first miracle of Lourdes, the first of 67 certified by the Lourdes Medical Bureau and recognized by the Catholic Church.

My grandmother’s name was Mabel Latapie, the daughter of Pierre Latapie who came to the United States from the County of Gers, France–a little over 100 kilometers from Lourdes.

My dad revealed this to me in a phone conversation not long after I’d returned home from a Confirmation Retreat I’d led at St. Clare’s.  I had told him about the Sacrament of Healing that took place during the Sunday morning Mass of Inscription, when an awful lot of people came forward and put their hands on my shoulders while the priest administered the sacrament.  Dad and I had been discussing miracles, about which we have some slight differences.  That’s when he said, “Don’t forget, you have Lourdes in your blood.”

I was darned surprised and went to the computer while we were on the phone.  Dad had thought Catherine Latapie was the second miracle at Lourdes.  I found many references to the miracle online–but as the first, not second miracle to take place.

It certainly gives me pause.

My echocardiogram on Monday went just fine.  I asked for happy juice so couldn’t tell you much about the procedure itself.  After 8 other catheterizations since February, I’ve actually gotten to know a lot of the “Cath Lab” staff–maybe not a great sign, but comforting nonetheless.  I do not know the results of the test, other than I have returned once more to pre-adolescence and have a couple band-aids in the nether regions.  I will find out December 11 what the conclusion of all this testing produces.

Over the retreat I found my heartrate bumping up into the 120’s, and then to 138 on Sunday morning.  Chest pains and pressure hit me just after the sermon so I discreetly popped a nitro and returned to normal within a few minutes.  It would have been terribly bad form to go down right after such a wonderful celebration of the Sacrament of Healing.  Irony is not cute in church.

Had I known about the Lourdes connection during mass I don’t know what might have changed for me.  It’s not that I don’t believe in miracles.  I just don’t believe that one should pray for their own–it seems sort of selfish when prayer ought to be for another…

On the other hand, 148 years ago one of my relatives dipped her paralyzed arm in a muddy new spring at Lourdes on the testimony of a 14 year-old teenager, and was healed.  Maybe I need to revisit this theology of mine.

Miracle or not, my heart is still sliding downhill.  Hills and stairs are my enemy.  So is drying my hair sometimes in the morning.  But the physical limitations aren’t so terribly bad.  It’s the body-memory of getting defibrillated, the fear of dropping dead that suddenly overwhelms a normally joyful and optimistic nature.  It is knowing that my prognosis for long-term survival sucks.

So I definitely want a new heart.  What’s keeping me off the list?  Mostly my V02 testing level.  That is exercise oxygen consumption.  I did very well on the test.  After doing more research, though, evidently V02 levels can be an incorrect indicator for successful prognosis.   Especially for someone with superior aerobic conditioning and motivation, the test inaccurately predicts prognosis.

Looking at the current criteria for transplant, it sure seems like I’m darn close.  I’m going armed with a lot more information for my Dec 11 appointment.  We shall see.   For now, I just need to get the darned Christmas Tree decorated!

Now get back to work!