Nothing Good About Grief - more

~Chapter 2~

Back in Time

Five years ago...
It's a Saturday, and although it's the end of summer, the Florida heat still bakes the life out of everything outside. I can smell it in the air, especially as I work my way towards my back patio, where the sprinkler water basically evaporates as it hits the steaming hot stucco of my house.

Rich is trying his best to patch a rough spot in our pool. I see that he's resorted to drastic measures: the contents of his scuba bag are scattered across the Kool Deck, goggles and fins hanging half-in and half-out of the netted duffel.

There's a method to his madness. He's hoping that his weight belt will keep him from popping up out of the deep end as he frantically tries to patch with one hand, and support himself with the other.

Mr. Fix-it. I'm laughing at him, imploring him to PLEASE just call someone - a professional - to patch the friggin' hole. He pops up, catching his breath, shaking his wet, moppy curls out of his eyes (man, he needs a haircut), and gives me one of his "oh right" smirks. He doesn't say a word...the eyes say it all. And back down he goes...

No one is going to patch that hole as good as he can.

An hour or so later, I'm staring into the refrigerator, hoping that something will inspire me for dinner. He comes into the house, grumbling and wet, sans the scuba bag and weight belt - rubbing his left shoulder. The good news: the mission is completed. The bad news? Must have pulled a muscle or something. The pain in his chest and shoulder is killing him.

Literally, it turns out.

Fast forward to 3am. I'm sound asleep, snoozing away on my stomach. I moved from my usual position on his left shoulder earlier - despite a good dose of Tylenol, he's still in pain from his 'Diamond Bright' battle...

"Lis, wake up....I think I'm having a heart attack".

I immediately open my eyes, his voice is that strong, that concerned. This is not the jokester Rich, the prankster who will do just about anything for a laugh. No - this is the sound of someone who's afraid. And it's not the sound that wakes me from my dreamy state - it's the fear.

Like a robot, I grab the phone and dial 911. "Yes, I need paramedics here at my house, my 38yo husband who is in superior health (never sick a day in his life...something he was quite proud of), is having chest pains. Yeah, they just started...no his skin is not clammy...Ok, I'll stay on the phone with you..."

They arrive in about 10 minutes. Rich rolls out of the bed, still holding his chest but able to walk to their little stretcher and hop on. I watch in disbelief as they wire him up and start monitoring, pop the cuff on his arm to check his BP. My brain goes into medical mode - I remember all the things my parents taught me about emergency medicine (the good thing about coming from a medical family, I suppose) - his blood pressure is slightly elevated, but not bad...probably his nerves. They're pretty confident that he's not having a heart attack - but want to take him to the hospital, just in case. We start thinking and mention the "pool" incident. They're strapping him into the gurney and agreeing, "Sure, that could be it - he probably sprained something". They still want to have a better look at him. I'm relieved. Rich is relieved...but pained. I can see it in his eyes; they're softer now, relaxed. It's OK. Things should be fine.

Things aren't fine. He's not having a heart attack but they DO see something "suspicious". It has nothing to do with his pain, we're told. Give him more Tylenol, but we really should see a cardiologist. Soon. Just in case...

It's the next day, and the pain has subsided. Dopey Florida doctors. “What the hell do they know”, Rich is thinking. It's a pulled muscle. He'll be fine, he insists.

My gut is telling me otherwise. I call a friend whose uncle just happens to be the Chief of Cardiothoracic surgery at Mount Sinai in Miami.

Fast forward (again) to Monday. I'm at work and by now Rich should be home getting dinner ready. He's not. He's still at Mount Sinai and interrupts a meeting to speak with me.

"Lisa, they want to open up my chest and do open heart surgery tomorrow"

Such a joker. Ok Rich, what is it, why'd ya interrupt my meeting, baby?

He's not playing around. "I'm like smoking my last cigarette here in the parking lot, Lis".

Dr. Traad wants him to "get his affairs in order". And then come back to the hospital later that night. He is having open heart surgery at 6am the next day. It cannot wait.

I'm in shock, slightly annoyed at what I'm hearing. "Get Traad on the phone", I demand. I want to see just what the hell this guy is thinking.

"You're husband has a bicuspid aortic heart valve. It's been regurgitating blood for some time now - he's got a 6cm aneurysm on his ascending aortic root that could burst at any moment"
What the hell? He's never been sick a day in his life? I'm still in disbelief, almost arguing with a man who has won awards for his innovative procedures in treating aortic dissection. I continue my questioning, "Why hasn't he had any symptoms, his EKG and BP are fine...what are you talking about?"

Traad's credentials meant nothing to me at that moment. I could not accept what I was hearing - obviously the man was mistaken. "We have two options to save your husband's life" he continued, "we can try a Ross Procedure, that's where we replace the aortic valve with the pulmonary valve...but I'll only know if we can do that once I get in his chest and have a look".

Into his chest? Shit...this guy's not screwing around.

He continued, "Chances are, the valves will be the wrong size and we'll need to go with a mechanical for the aortic valve. He'll need to take blood thinners for the rest of his life, but these valves typically last for about 20 years...he won't need surgery again for a long time. We could do a bovine (animal tissue) valve but those last only about 5-10 years...I'd recommend the mechanical"

I've had enough. I'm already leaving the office and on my way to Mount Sinai.

And then I learn all I could ever want to know about aortic heart valves. Mechanical valves typically last longer, require blood thinners (they tend to gather clots without it) but - and there's always a but - when they fail, they tend to do so catastrophically. Bovine valves require no blood thinner - usually - fail sooner but rarely fail catastrophically (they fail "over time"). No matter which valve is selected, Traad will still have to remove the aneurysm - basically the entire ascending aortic root (see diagram: the curvy white vessel on top of the heart) and replace it with a Dacron tube.

I'm with Rich during the educational portion of this nightmare. He's in shock, but playing it off as no big thing. He just really wants to spend one last night at home - in his own bed.

I'm arguing with the doctor about his medical opinion, and Rich is negotiating for the right to sleep one last night in his bed. With me.

And it hits me at that moment; I'm fighting a losing battle. I concede, with one condition - let the guy have 24hrs to "get his affairs in order". The doctor isn't buying into our request - but then Rich insists "I need to go home, Doc...I need to do this".

Traad looks at him and realizes that his patient is right - Rich needs time to mentally prepare for the possibility of dying within the next 24hrs.

~Chapter 3~

"This is such a waste of my time" Rich tells me. "If he's not here in another five minutes, I'm just leaving, there's nothing wrong with me."

I'm sitting on the corner of Rich's hospital bed, and can sense his fear despite the abrasive cover.

"Just hang in there" I tell him. "They'll be here soon, you can't just leave"

Rich claims that he wants to go home so he can watch the debate between Bush & Gore, but my heart knows better.

For the first time since I met him, he's afraid - and flipping out in the only way he knows...deflection. And me - I'm feigning complete calmness, doing my best to manage his emotions and be supportive.

And I can't blame him for being afraid. It's a head trip knowing that in less than 12hrs, they'll be cracking his ribs and opening up his chest, bypassing his circulatory system and - stopping his heart so that his valve can be replaced and his aneurysm repaired.

The surgery is risky enough, but that's not the worst of it. No - they made us sign a million forms, talk to social workers, clergy, and the 20 or so doctors that will make an appearance throughout the event. We met the anesthesiologist, the pulmonologist, the heart guy, the surgeon's three assistants, the SICU team....and each of them read us their own Miranda-list of things that could go wrong. Patients undergoing this particular surgery can stroke on the table, they can stroke off the table, their hearts don't always restart, and even if they do, there's a chance that they can suffer damage and arrest....the other organs can fail; you can go into a coma, blah blah blah.

Not an easy thing to look forward to...not an easy thing to actually have the nerve to face.

I try to imagine what it's like sitting on that operating table, waiting for the anesthesia to kick in, knowing full well that I may never wake up again...and that even if I do, there's a chance that I may still stroke out and die.

The social worker's questions were entertaining:
- Do you have a will? Uh...no
- Do you want a DNR? Rich's response surprised me. Stop - break in action - rewind tape back about 14yrs...Rich and I are having a philosophical discussion. "If something ever happened to me I'd want you to pull the plug", he said back then. We were in our early 20's and it seemed appropriate at the time.

Now faced with the real-life version at 38 and his response was, "You beat the piss out of me, give me every drug you can, you keep me alive goddammit".

No atheists in a foxhole and all that.

Now Rich is really starting to flip out. The social worker unnerved him - he wants a cigarette. He's in a hospital gown and is not supposed to leave the floor. I'm ready to just let him go - but I'm afraid that he'll just leave once he gets outside.

"No, don't smoke", I tell him. "Come on, the debate will be on soon and you can watch it here". Rich isn't taking no for an answer. His ranting gets louder, more animated, "Where the hell is Traad? This is ridiculous, I mean isn't he going to talk to me - I have questions about the valve, this is so goddamn stupid"....Rich is on a roll.

I sneak out of the room and flag down his nurse. I'm hoping they'll get him some sedatives - just something to take away the edge, calm him down.

I tell her that I'm afraid he's going to leave the hospital.

She comes back within minutes and hands him a cup of pills. "Just to take off the edge", she says. Rich takes them without question - he knows that he's losing it.

Now I'm starting to flip out. It's getting late - soon I'll have to leave and his surgeon has yet to come and answer our last few questions.

I want to know what time I need to arrive - where I should wait. How long will I have to wait after recovery before seeing him? Do they know how to find me if something 'happens'???

And the drugs kick in for Rich. He's watching the television blindly - just staring really, but he's calm...and quiet.

~Chapter 4~

It's still dark as I make my way through the hospital parking garage. The good news: there's plenty of parking in the wee hours of the morning.

The bad news: my 38yo husband is having open heart surgery.

His surgery is scheduled for 6am, but with the prep required, I'm told that I cannot see him prior to surgery. They have to scrub him down (not once, but twice), get the bypass machine going, etc. I had to give him my kisses and hugs and tears the night before, while he was good and stoned on sedatives.

I cried the entire way home and for the first time, got to feel what it would be like to come home to our bed all alone. My inner voice told me that it was foreshadowing of things to come...but I quickly pushed the thought away, not quite ready to deal at that moment.

But I want to be at the hospital this morning at 6am. I want to be positioned by the little phone in the OR waiting area, just in case...

As the hours tick by, more and more people join me in that waiting area. Old people, young people, a potpourri of life. They come and go, a stream of loved ones at first frantic and pacing, and then relieved when their husband or father or mother or sister or brother is given the thumbs up by their doctor.

Seems like I'm the only one there for just about the entire day...just waiting for my turn...to hear the verdict.

I know what to expect in the SICU area...the doctors had explained it all the night before. They reviewed each of the tubes (drainage tubes from the lower abdomen, respirator, et al) and associated monitors, and told Rich how when he woke up, he'd have a machine breathing for him, and would be hearing various alarms - and of course, the clicking of the new heart valve.

Dr. Traad arrives just after 4pm. Amazing yet totally unassuming, Traad stands about 5'7". His gentle features are framed by a mop of salt & pepper curls...he's about 73 years old, and still plays tennis every morning at 5am.

"Ok, everything went as expected" he states. "Overall I'm very pleased."

As we walk to the SICU, Traad tells me that Rich will look a little "rough". He's trying to prepare me for what I'm about to see.

I don't recognize Rich at first and walk right past him. Traad has to pull my arm and lead me back to his bed.

Rich is pasty white, with the only true color being splotches and smears of blood on his body, the sheets, through his bandages which are going up the middle of his chest. His eyes are loosely shut, his face slightly puffy, and his beautiful hair pressed back flat and sweaty, probably from the little cap that he wore throughout the procedure. He's wired to about 10 different monitoring boxes, each displaying a green LED set of numbers or saw-tooth wave. Every so often, the boxes bleep and tone - and the drainage tubes sticking out of both sides of his abdomen pump a steady flow of bloody fluid out of his body. The respirator tubing seems jammed into his throat. The tube is taped to his mouth, and his body shakes with each forced breath. Smaller wires are running all over his body, and his one index finger is capped with yet another monitoring device.

He looks so helpless and vulnerable. Something that I've never seen before.

I get dizzy and need a chair - Traad brings one over and asks if I'm ok. He tells me to talk to Rich, so after a minute or so with my head between my legs (I feel like I am going to pass out), I get up and make my way past the machines and tubes, and hold his hand.

His eyes flutter as I start speaking to him, and immediately his heart rate increases. I'm telling him that I love him and that he's going to be OK. Now he's trying to hold his eyes open - trying with everything in him, and the monitors start ringing and buzzing. Traad joins in and tells Rich that everything went well, to relax now and get some sleep. Rich looks over and now makes eye contact with me. He's trying to say something, trying to move his hands, but they are fastened to the bed. I carefully lean over and give him a kiss, and he continues to mouth something to me. When I don't get it, he rolls his eyes and then shuts them very tightly - he's getting pissed off, and I can't understand what he's saying. A nurse comes over and he tries again.

"Oh, he's saying tube" she says, "Rich blink if that's what you're saying".

He bats his eyes about 20 times in a row and then looks right at me.

Now I get it. He wants the breathing tube OUT.

The nurse explains that he needs to rest for now; they'll try to wean him off the machine later.

Rich responds by trying to pound his tethered arm down on the bed. He knocks the finger cap thing off and a monitor bleeps in response. His face gets red and he looks like he's about to cry.

"Ok, now - I think it's time for you to go", she says to me. I tell him that I love him, give him another kiss, stroke his hair, and cry as I leave him there, pissed off and obviously in discomfort.

~Chapter 5~

"I can't believe they're using cell phones...rude friggin' assholes"

Rich Hyams is in rare form.

Only two days post op, he's been raising hell ever since he got to the 'step down' unit.

We joke that the term 'step-down' refers to the level of care at Mt. Sinai. SICU is like the Plaza in comparison.

Rich's bedside neighbor has a guest that continues to use a cell phone, even though there are signs pasted all over the place warning NO CELL PHONE USE IN CARDIOLOGY.

We're both engineers, we know what RF can do to monitoring equipment and besides, it's annoying as hell listening to their mindless chatter.

And Rich is pissed as all hell that someone is potentially jeopardizing his ticker.

Normally, he'd walk right up to the offending party and give them a piece of his mind. But with a 12 inch set of staples running down his middle and his sternum freshly wired back together, he can only creep along slowly at this point.

I get to see his scar for the first time today and it’s mind boggling...like a giant zipper. His chest was cracked open - they actually use a saw to get through the ribcage and then use heavy wire to piece it back together.

I also notice the ticking noise from his titanium valve.

It scares the hell out of me.


I make a mental note of its cadence and find myself listening carefully every few seconds to make sure it's still ticking. The loudness varies depending upon his position - but for the most part, I hear a soft tick-tick-tick, just like you hear when listening to a wind-up watch. The same pitch and everything.

Traad arrives shortly after and decides to check Rich's pacemaker.

One of the first things done after an aortic valve replacement is to control the heart's rhythm. AVR (Aortic valve replacement) patients are given blood pressure medicine for the rest of their days, which helps stabilize and reduce unnecessary stress to the heart. And they are connected to an external pacemaker temporarily.

Rich sits on the corner of the bed as Traad alternates between fiddling with the pacemaker knobs and looking up at one of the monitors. When he turns the knob one way, the monitor starts beeping slowly, and I watch as Rich's face turns ghostly pale, "I'm going to pass out - what the hell are you doing" he shouts.

Traad looks up at him over his glasses, unfazed. He turns the knob again and now the monitor starts bleeping fast and furious. Rich's face changes to bright red, "Will you stop that shit...my heart feels like it's going to jump out of my goddamn chest".

Traad finally gets the appropriate speed and tells us that Rich will be going home by tomorrow.

Rich is ecstatic; I am scared shitless.

He's still so fragile, and I'm frightened at the prospect of being with him if something goes wrong. It's selfish on my part - but also out of concern: will I be able to handle that sort of situation by myself?

Now I grew up in a medical family - and my father's specialty was trauma. At an early age, we kids were trained in CPR, knew how to treat a wound, stop bleeding and when to get help. Most of my siblings ended up in the medical field....but not me. I was the artsy-fartsy chick, and although I always did well in the sciences, I never had the nerve to be responsible for someone's health...and life.

Some time passes and we receive a barrage of instructions and information designed to make Rich's 'transition' go smoothly.

Dr. Weinberg is Rich's new cardiologist, and I immediately like him. He's from the South Bronx and grew up not far from the neighborhood where Rich was raised (High Bridge).

Dr. Weinberg tells us all about Coumadin - yet another drug that Rich will take for the rest of his life. Coumadin (or Wayfarin) is rat poison. It thins the blood and prevents clots from forming on the titanium valve "leaflets". It is also easily affected by diet. Too much potassium and you're a dead man. No leafy greens - good thing Rich is not a huge leafy green kinda' guy. And the levels must be carefully monitored. If the blood gets too thin, the patient will basically be a hemophiliac, internal bleeding, bruising, brain bleeds - not good. If the blood is not thin enough, well it's stroke-time. Rich will need weekly blood tests for at least the first year (that's how long it takes to get stable), and then once a month for the rest of his life. We get a videotape to watch at home and a little journal for him to keep track of his diet and blood levels.

Next we receive a visit from the social worker. Ah yes, the beacon of joy who asked us about wills and DNRs. Now she wants to know if we'll need assistance at home. None needed, none taken, thank you very much. She hands us a bunch of pamphlets about post-op depression in cardiac patients. And tells us that we should seriously consider getting Rich some life insurance. Nothing like positive thinking. Rich and I just look at each other and start laughing....we're thinking the same thing, "Dead Man Walking"...no wonder patients get depressed. We hug and laugh some more as the very puzzled social worker watches. Certainly these two are in need of psychiatric help, she must be thinking.

The respitory specialist arrives shortly after holding a big white teddy bear that has a large satin heart-shaped patch on its chest. She hands it to Rich and explains that he can squeeze the teddy on his chest whenever he practices his breathing and coughing exercises. Rich tosses the bear aside in disgust and rolls his eyes...maybe Jacqui will want to play with it, but he can cough on his own, thank you very much. Teddy bears are for wusses, and uh, Rich is no wuss.

I go home that evening armed with everything I need to care for my heart patient. And I wonder if this is the end of the nightmare or just the beginning...

Chapter 6~

Rich looks like a mental patient.

His hair is mussed, scraggly.

He and the hair have been through the ringer; they have a right to look disheveled.

It's about time for his walk. He takes walks around the neighborhood every 2-3hrs, even though the doctor said to walk 2x/day.

But Rich is determined.

He is fine. And he will walk as often as he likes. Ticking all the way...

Rich wants to walk alone. I'm guessing that he wants to prove that he's strong, capable - and that he will survive.

I give Rich his space, his comfort. But as soon as he walks past our house, I step outside and get to a place where I can watch him from the distance...while his back is facing me.

I want to be there for him, just in case. I'm his invisible safety net.

His choice of clothing is out of place in our neighborhood. Especially considering the way he wears his shirts.

No more Izod golf shirts for a while. Part of the 'take home' instructions.

AVR patients need button front shirts - makes it easier for them to get dressed. If they stretch their arms over their heads, they risk popping a stitch, or rebreaking the ribs. So I buy a ton of button down shirts for him. So very un-Weston!

Rich wants his scar to heal, and being kinda' old-school, he decides to wear his shirt unbuttoned. The scar needs "air". And I suspect he gets a sick sense of satisfaction observing the neighbors reactions as he walks past them.

He looks like something out of a horror movie.

His scar is about 1/4" thick, dotted on either side with staple "marks" and is BRIGHT red. It goes from just above his collar bone to just below his sternum. It's not a neat and tidy scar - not at all.

It's jagged and wreckless, kind of like him.

There are two 1/2 inch puncture wounds on either side of his abdomen from the drainage tubes - they make his belly look like a twisted Halloween face.
We joke that it would be cool to get a tattoo of a snake wrapped around the scar. Silly.

So he walks around the neighborhood bearing his battle wound, willing himself back to his former strength, determined and unfettered by something as simple as open heart surgery.

He starts joking about the surgery almost immediately after getting home from the hospital.

"Yeah, they ripped out my aortic heart valve and threw it in the scrap bucket"

He's on the phone with one of his best friends.

"Yeah, it was a piece of cake...everything's just beautiful"

It takes him a while to realize that he can screw around with people using the sound of the valve.

The first time I notice it is about two weeks after he gets out of the hospital. Rich and I are in Disneyworld - and our little nephew Rocky is sitting on Uncle Rich's lap:

"Uncle Rich, are you sick?"
"No - I'm here in Disneyworld with you. You know what I did?"
"What?" Rocky's eyes are wide open, knowing it's going to be a good story
"I swallowed a clock"
"No you didn't, Uncle Rich. You'd be dead or something"
"I did. I swallowed a huge alarm clock. Wanna hear it?"
"Yeah"

Rocky's eyes open even further and his jaw opens wide as Rich guides Rocky's head towards his chest.

"Mom! Uncle Rich swallowed a clock and he's TICKING"

The child is amazed. We all bust up laughing.

Rich makes it to Disneyworld but is unable to spend as much time as he normally does in the parks. Most people think we're crazy for even going - but this is a battle that I chose not to fight with Rich.

He wants to go. Bad. So we go - we meet his family there - and we take as many breaks as possible.

We try our best to ignore the "intensity" signs that we see on the amusement park rides. No more roller coasters, no fast motion or blinking lights…in essence, nothing that may interfere with the valve, or cause any sort of bleeding.

It dawns on me that Rich will no longer be able to ski. Or scuba dive.

I keep this to myself, but know in my heart that he's already thought about it as well.

It could be worse, right? I mean, he could be laying dead on the floor somewhere.