State of the Heart / Stroke of Luck

Awake During Heart Surgery

2010-12-13T17:09:00.001-05:00

Do you speak Aphasia?

2010-11-23T13:42:00.002-05:00

IV in place? Check. Rock-hard bed and pillows? Check. Blood draw every four hours? Check. Waking me up in the middle of the night to weigh me? Check. Yup, nothing like a hospital stay to rest and recuperate. I’m starting to wonder if it is part of the insurance companies’ conspiracy. If patients complain enough; exhaust enough; sick of the food enough; maybe they will beg to leave earlier than you might otherwise.

That first night I was confused, and very tired but as I mentioned even if you doze off they eventually wake you up for one thing or another. I was up early, around 5 AM. The parade of doctors started around 9AM. Internist, Cardiologist, Neurologist, Infectious Specialist and a speech therapist came in one by one wandering in the room. The business person in me wanted an Agenda.

I. Morale Booster Allison 12 hours 8AM-8PM
II. Introduction, Status Internist 15 Minutes 9AM-9:15
III. Heart status Cardiologist 30 Minutes 10AM-10:30
IV. Lunch Cafeteria Lady 90 Seconds 12PM -12:02
V. Neurologist Event Post Mortem 30 Minutes 2PM-2:30
VI. Speech Therapy Perky Speech Therapist 30 Minutes 3PM-3:30

For the sake of brevity I am not including the blood draws, medications, etc.
So here is what we knew at this point: I had an ischemic stroke affecting the left temporal hemisphere. Behind my left ear was a constant dull headache that wouldn’t go away. That, I would learn later, that this is where brain cells died. Medically they call in an insult to part of the brain. How appropriate.

An ischemic stroke results from restricted blood flow to portions of the brain. The majority of strokes (approximately 80 percent) are ischemic, according to the American Stroke Association. Blood flow to the brain may be restricted by a blood clot (thrombus) or by progressive narrowing of the arteries. People with high cholesterol, diabetes, or heart disease are at increased risk of ischemic stroke. (I had none of those medical conditions.) ‘Healthy as a horse’ the saying goes. Until of course until they break a leg and then need to be shot.

An ischemic stroke develops quickly. Brain cells begin to die within minutes of the interruption of blood flow to the brain. Prompt medical intervention minimizes cell death and may help restore partial function to damaged areas.

A stroke which occurs in the left hemisphere of the brain can produce one, several or all of the following disabilities, to varying degrees of severity:

• Paralysis on the right side of the body
• Speech and language problems (known as aphasia- see below)
• Cautious behavior
• Memory loss

Paralysis may be complete, an inability to move the right limbs, wiggle fingers or toes on the right side, or may be less severe. Many left-hemisphere stroke patients recover all or some of their right-side function, so that they may walk and climb stairs without assistance, although they may retain a numbness on the right side of their body.

Because the left side of the brain contains the "speech center" of the brain, individuals with left-side strokes often have difficulty understanding speech and written language following their stroke, a condition referred to as aphasia. Because this is such a common effect of a stroke, a special section on this page has been devoted to aphasia.

Some left-side stroke patients may exhibit a more cautious behavior than before their stroke, although others may find themselves reacting more spontaneously and/or intensely than before to outside stimuli.

Aphasia was the most obvious and immediate effect of the stroke.

Aphasia (sourced from Wikipedia) (pronounced /əˈfeɪʒə/ or pronounced /əˈfeɪziə/), from the Greek root word "aphatos", meaning speechless, is an acquired language disorder in which there is an impairment of any language modality. This may include difficulty in producing or comprehending spoken or written language.

Traditionally, aphasia suggests the total impairment of language ability, and dysphasia a degree of impairment less than total. However, the term dysphasia is commonly confused with dysphagia, a swallowing disorder, and thus aphasia has come to mean both partial and total language impairment in common use.

Depending on the area and extent of brain damage, someone suffering from aphasia may be able to speak but not write, or vice versa, or display any of a wide variety of other deficiencies in language comprehension and production, such as being able to sing but not speak. Aphasia may co-occur with speech disorders such as dysarthria or apraxia of speech, which also result from brain damage.

Aphasia can be assessed in a variety of ways, from quick clinical screening at the bedside to several-hour-long batteries of tasks that examine the key components of language and communication. The prognosis of those with aphasia varies widely, and is dependent upon age of the patient, site and size of lesion, and type of aphasia.
Good friends brought me movies, a video player, magazines and books. I also had with me a pad and pen. Unfortunately most if not all of those distractions were not helping. I couldn’t read more than a couple of words without getting confused. I was unable to follow the arc of even the most sophomoric sitcoms. Writing was harder than speaking and my speech was significantly compromised. Imagine for a moment that you were working on a file and in haste you saved the file, shut down the computer, went on vacation or on a trip for 3 weeks and then came back. You boot the computer up. And now you try to figure out where you saved that file? Where is it? This is how hard it is for me to find some words. In order to keep a conversation at a reasonable rate I would “dumb” it down rather than looking for the word I wanted or normally would use. This is the same reason which I avoided speaking on the phone.

More on my recovery next.

Did you know?

The risk of ischemic stroke in current smokers is about double that of nonsmokers after adjustment for other risk factors.

Atrial fibrillation (AF) is an independent risk factor for stroke, increasing risk about five-fold.

High blood pressure is the most important risk factor for stroke.

Stroke of insight: Jill Bolte Taylor on TED.com

2010-10-20T19:30:00.005-04:00

Neuroanatomist Jill Bolte Taylor had an opportunity few brain scientists would wish for: One morning, she realized she was having a massive stroke. As it happened — as she felt her brain functions slip away one by one, speech, movement, understanding — she studied and remembered every moment. This is a powerful story of recovery and awareness — of how our brains define us and connect us to the world and to one another. (Recorded February 2008 in Monterey, California. Duration: 18:44.)

Dr. Bolte Taylor's experience as she describes is amazingly similar to what I recalled. I found her book 'by accident' or fate the first day I left the hospital. For anyone who would like to better understand the stroke experience for one's self or a friend or family, Stroke of Insight will enlighten and come close to empathizing the mind's brilliant, scary and ever evolving brain. And do not believe any 'professional' that the brain is done healing or recovering. We are just starting to understand the wonder of Neuro Plasticity.

My Stroke of Insight: A Brain Scientist's Personal Journey
http://amzn.com/0452295548

Stacey Kramer: The best gift I ever survived

2010-10-18T14:26:00.002-04:00

Stacey Kramer offers a moving, personal, 3-minute parable that shows how an unwanted experience -- frightening, traumatic, costly -- can turn out to be a priceless gift.

Co-founder of Brandplay, a brand strategy firm, Stacey Kramer also founded Word for Word, a naming and branding consultancy serving national and global companies -- from big, recognizable names to next year's newsmaking startups.

In 2009, Kramer found herself confronting a terrifying diagnosis: a CAT scan revealed she had a brain tumor -- the size of a golf ball. She told her remarkable, personal story at TED2010.

"The next time you face something that's unexpected, unwanted, and uncertain, consider that it just may be a gift."
Stacey Kramer

Allison’s Take

2010-10-05T18:51:00.006-04:00

My beautiful wife, Allison, graciously offered to be a special guest author/columnist for our latest submission. There was also the minor fact that I didn’t remember too much at this point. Take it from here, Honey.

I was just finishing putting the boys down for just the second night in our new house and heard my cell phone ringing downstairs. I said “good night” to Miles and shut the door before heading downstairs to my phone: “Missed call – Joe cell”. I called him right back, “Hi babe. How did it go with the rug? Did you sell it?” From the other end I heard “Al, something is….I can’t….what is the….we need to call….” Just a series of short, unfinished thoughts. I actually thought my cell phone was cutting out so I started walking around the house, dodging boxes in every hallway, to find a good signal.

After hearing “Something’s wrong” for the third time I felt my heart racing and knew I needed to get to him. I grabbed my car keys (forgoing shoes in the middle of March) and jumped in the car. Joe wasn’t able to answer any of my questions… “Are you still at the rental house?” “If you are driving please pull over – I am on my way.” I think it took me a minute and a half to get to 450 Himalaya as I whizzed by other cars that were just cruising through the neighborhood at the 25 mile per hour limit. I was preparing myself to see Joe critically wounded, rationalizing that the reason he couldn’t answer me was that the man that came to buy our rug had physically harmed him.

I turned the corner and caught sight of our “old house” and Joe’s green Audi was parked in the driveway, the door open, Joe sitting in the driver’s seat. I threw the car into park and raced to him. I leaned down and gazed over his torso and legs and was relieved to not see any blood. I then looked in his eyes and saw confusion staring back at me. I began to ask the same questions to try to determine what I’d missed: “Does anything hurt?” “Did you meet the man for the rug?” “Baby, can you tell me what is going on?” Each time Joe was able to just get out a word or two…”Something’s wrong” or “We need to call Mike” or “I can’t remember…”. I touched his cheek and smiled, holding back tears. I told him it would be ok as I dialed 911 on my cell phone. He looked at me and very clearly said “Who are you calling?” I was surprised at the clarity of his question as he looked at me holding the phone to my ear and was just more confused that he had – what seemed like – a moment of clarity. While we were waiting for the ambulance I remember him looking down at his hand, holding his car keys. He looked at them with confusion, as though he didn’t know what they were for, and then gently placed them on the dash.

I then remembered that I had left Max and Miles at home asleep and needed to get someone over there. Luckily, in the 6 months we’d lived on Himalaya we had become friendly with a family across the street with two teenage daughters that often babysat the kids. Sven and Sue, their parents, are amazing people and I started looking up their home number. I asked Sven to come across to our house to get my garage door opener before heading to our new place to just be in the house until I had a better idea of what was going on. Sven and his youngest daughter Kirsty were running to us within seconds and as I turned around I saw the lights of the ambulance glowing behind them.

The paramedics’ team came up to Joe’s car to start assessing the situation. The first thing I was asked was his name and what happened. I explained the call I’d gotten and his inability to answer my questions. I was then asked if he had done any drugs. I told them "no" – that I had seen Joe just 30 minutes earlier at home before he left to meet a guy and his wife at 7pm to sell them a rug off Craig’s list.

The EMT team put Joe on a stretcher and I asked which hospital they were heading to. I realized that in addition to getting some shoes on, I would need to race home and get my wallet and Joe’s meds - not to mention making sure Sven, Sue and the girls were there with my kids. I left 450 Himalaya at 7:45pm and drove home quickly but surprisingly un-panicked. In retrospect I know I was unconsciously calmed by Joe’s composed and peaceful demeanor during the past 15 minutes and was figuring it couldn’t be a very big deal since he wasn’t in any pain or panic. There was never a look fear in his eyes – and it was a strange yet welcome sensation.

I expected to arrive at the hospital after the ambulance as they already had Joe inside when I left 450 Himalaya and assumed they would be leaving for Exempla within a minute or two. At 8:00pm I left the new house and surprisingly, as I made my way to Aspen Street, I met up with the ambulance coming out of the Country Estates development. There weren't any lights on and they were driving roughly 20 miles per hour. I was confused as to why they'd been at the 450 Himalaya address for the past 15 minutes and wondered why they weren't speeding to the hospital. I followed them while calling my sister Robyn to tell her what was going on. We arrived there at 8:10pm.

At 9pm I realized I would need to have someone take over at my house for Sven and his family. Robyn suggested that Heidi, my 22 year old sister, could come to the house after getting off work so she took over the babysitting duties while I stayed with Joe.

The first two hours in the Emergency Room, until about 10:30pm, were very confusing for everyone. Joe was alert and in no pain. When asked his name, birthday, address and today’s date he gave perfect answers. When asked who the president was he replied “Olama”. When asked what he had for lunch he said “Chicken sandwich”. Then in response to “Where did you eat lunch?” he said “Yes, I also had chips and a diet coke.” No matter how often he was asked where he’d eaten lunch, he could not clarify with a location.

As the questions got more detailed Joe started to ask, after every question, “What is it you’re asking me?” or “Can you say that again?” I believe it was his brain’s way of strategically buying a little time, letting the question sink in and offering a few extra seconds to search for the words to answer. Sometimes it worked. Most often after the question was repeated he would say “I’m sorry, I don’t know what you’re asking me.”

Although Joe found it almost impossible to answer questions, interestingly, he was totally able to initiate thoughts and get them out with almost perfect speech. He was very concerned about me reaching Graham, his Crispin Porter teammate, and was able to clearly and concisely tell me to call him to explain he couldn’t pick Graham up the following morning for their flight to Seattle.

Blood had been taken and results showed no drug use. He had been taken for a CAT Scan and there was no bleeding on the brain. By 10:30pm it was clear to the hospital staff that Joe’s condition was even more of a mystery. Around 11pm a doctor who introduced himself as “Ben” came in dressed in jeans, a plaid flannel shirt and leather boots – looking like he’d walked in straight from a hike. He introduced himself to me and Joe and sat down on the rolling chair. He asked Joe the same initial questions he’d already been asked by two dozen doctors and nurses prior and then said “Please repeat after me….A E I O U”. Joe asked him to repeat the question and after the second pass replied “A E I O”, forgetting the “U”. Ben said, “Repeat after me….No ifs ands or buts.” Joe again asked him to repeat it and his response was completely garbled. Joe, realizing he wasn’t saying the correct thing, tried again and Ben stopped him by putting his hand on Joe’s arm. Ben then said, “Joe, I believe you may have suffered a stroke tonight.”

In this moment my body felt empty. The calm I had been feeling changed to a sense of disbelief, bewilderment and fear. Joe didn’t understand the gravity of Ben’s comment and looked at me for clarification. With tears in my eyes I went to him lying there, grabbed his hand and said “Baby, you’re having a hard time with your language and they’re going to do some more tests. They think something might have happened in your brain tonight. Everything will be fine.”

My sister arrived shortly afterwards and she was the first person I shared the news with her. The word “stroke” felt erroneous and impossible. Since his open heart surgery he’d been seen by doctors consistently, was taking 2 baby aspirin daily, was in great shape and DAMMIT, he was only 38 frickin years old!!

Around midnight Robyn and I followed the nurse as she rolled Joe down to get a carotid ultra sound. By looking at the two large arteries in his neck (called carotid arteries) which supply your brain with blood doctors can tell whether plaque has narrowed them. The plaque can slow down or block the flow of blood through the artery, allowing a blood clot to form. A piece of the blood clot can break off and get stuck in the artery, blocking blood flow to the brain and thereby cause a stroke. The ultrasound showed no plaque build-up.

By 1:30am Joe was admitted to Exempla Good Samaritan Hospital and moved into his room on the 4th floor. Robyn said “goodbye” to Joe and said she’d wait for me out in the hall. I sat on Joe’s bed and looked in his eyes. He said “What is going on?” I said, “Honey, they think you might have had a stroke tonight. Your brain is not responding normally and they are going to do some more tests to help figure out what happened.” It was a tough “good bye” for both of us. I knew Joe was exhausted and needed sleep but was so confused about everything that was going on around him. I told him I’d be back by 7:30am the next morning.

After a few hours of sleep I showered and headed back to the hospital. I briefly spoke to the beautiful nurse who resembled Angelina Jolie (really!) named Trissi before going in his room. She told me Joe was taken for an MRI at 2:30am after I’d headed home. Results were still pending so I went inside Joe’s room to say “hi”.
He was awake and, although tired, he was already analyzing how his brain was – and was not – functioning like normal. I asked him to read the sign on the wall which had the 4-digit number for reaching the Kitchen on it. Instead of saying “Kitchen” he said “mitchek”. He caught himself immediately and said, “Ah, why did I say that? I know that’s not how you say that word”. I asked him to try again and he again said “mitchek”. After a third attempt he asked me to say the word and while looking intently at my lips saying “kitchen” he practiced a few times and finally said “kitchen”. It is a very distinct memory for both of us, him re-learning the word “kitchen” – just one of a million words Joe has had to re-learn…much like learning a new language where the rules, phonemes (meaningful sounds), syntax, and grammar need to be taught along with vocabulary.

For me, this first morning after the stroke proved to be the most relieving and most scary of my life. I was so comforted that Joe was showing great improvements already and – unlike many stroke patients – that he was not paralyzed. However, I was so unsure of how much of my husband that we’d lost. How much would his brain heal? Would he ever be able to speak effortlessly again? So many people have asked how I got through those first few months without going crazy. I took it day by day – and sometimes minute by minute. Joe was in there – we just needed to be patient enough to have him come back to us in his own time.

DID YOU KNOW?

Stroke is the third leading cause of death in the United States. Over 143,579 people die each year from stroke in the United States.

Stroke is the leading cause of serious, long-term disability in the United States.

Each year, about 795,000 people suffer a stroke. About 600,000 of these are first attacks, and 185,000 are recurrent attacks.

Shattered

2010-09-23T18:33:00.005-04:00

The scene on this chilly early spring night transcended from me alone dimly lit from above near the garage and sat still momentarily becoming aware of the occasional neighborhood dog barking. I didn’t contemplate, I didn’t think at all and that is the secret that I can recognize in retrospect. I was content. Complete tranquility. Happy. And this didn’t change right away. From a sleepy, non-descriptive suburban development, home, driveway and life was grabbed by a lose thread of a life and unraveled it as if it was pulled unexpectedly torn on a rusty nail while brushing by a fence in disrepair. But I didn’t see the mess it created. Despite the cacophony around me I absorbed it, one stimuli at a time…conscious, aware and more curious than disconcerted. One ambulance, 4 EMT first responders, two police cruisers and 4 cops. Allison shared what she knew which was limited. She found me sitting there in the car and unable to get more than one word at a time out of my mouth.

One of the EMTs kneeled in front of me. He asked me a number of questions:

-“What is your name?” No response from me.
-“Where are you? No response to me.
-“What is your birthday? No response again.

In each case I tried to answer. I really did but the words wouldn’t come out. The EMT stood up to speak with Allison and as quickly as he was in front of me, I forgot he ever existed. And then I saw my neighbor, Sven. Sven and his lovely family are from South Africa and we were lucky enough to have their teenage daughters often come to the house to babysit. Sven and his youngest daughter, Kirsty came across the street and passing the tumult that was impossible to avoid in the quiet Wednesday evening. Kirsty followed closely behind Sven to see us while staying out of the way of the team. And while I was watching Sven’s face I was conscious of the fact that the only things I was looking at, hearing and understanding was Sven. Not Allison, the cops, the EMTs or even Sven’s daughter who stood right next to him, holding his hand. Sven hadn’t uttered a word. He stood maybe 25 feet away but it was like I had a camera lens of a movie that zoomed in on Sven’s face. His countenance of concerns, his wispy, thinning front hair, the back angling brow and 1 day’s worth of stubble. And I was completely present with Sven without a word from either of us. As focused and locked-in as I was with Sven that moment passed fluidly into looking at Kirtsy. Like while looking at Sven and now again with Kirsty, everything else seemed to lose its fidelity; Sounds, depth, smell, touch, texture and peripheral vision. But what was lost in the moment’s context of all five senses was made up by making the subject insanely acute. Like looking through a portal using High Definition and headphones with surround sound. But the screen was not huge like an I-Max…. it was small through the looking glass.

The next scene panned to the EMT again and now I was being helped into a stretcher. I was wrapped in blankets and secured before they rose me up on the stretcher. I was aware I was going into an ambulance. Allison looked at me, kissing me and told me she would meet me at the hospital. “They’re going to take care of you. “I’ll take care of you.” And with that I was put into the back of the ambulance. The doors closed behind.

Inside the ambulance everything was heightened. The lights were brilliantly blinding. The open and closing of cabinets were deafening. The ripped sound of a new IV was heard loudly inside my head, not just outside. One tech began the IV while another wearing latex gloves and looked at me closely. “Mr. Salvati, who is the president?” I focused and I looked deep inside the irises of the eyes of the tech and his over gelled hair and I confidently said to him, “Omama.” And I heard it myself too. “Omama.” “Why did I say that?” I was thinking to myself. He asked me a couple more questions and I couldn’t get another word out of my mouth. In my head “Omama” kept echoing inside the cavern of my head, unable to focus on anything else let alone answer to another question. And then I stopped listen to my mind and came back to listening and focusing on what the EMTs were saying and doing despite how loud it all sounded to me. And next what happened was the precise moment that my calmness was abruptly, rudely ended. The EMT’s who were speaking to each were as if the three of us weren’t in the same room let alone in the back of a moving ambulance. That was rude enough but I never expected to hear one EMT to say out loudly to another, “This guy must have been doing a lot of drugs.” I was enraged but couldn’t speak a word and with my right hand I made a fist and hit my thigh. I did it again as if to protest the indictment, implication, possibly endangered me and worst of all he shattered the closest I’ve ever been to complete tranquility.

What happens at the hospital comes next…

DID YOU KNOW? On average, every 40 seconds someone in the United States has a stroke.

Something is Different

2010-09-13T18:50:00.010-04:00

I knew I forgot something… call Allison. She's gonna kill me.

So knowing that something was different and I was unable to close the garage, I sat in the car’s driver side in the driveway. Keep in mind that I had no plan on driving. It wasn’t that I was scared in fact the mere thought of driving home didn’t even enter my mind. I never lost conscious. Most stroke suffers lose conscious, waking up (if they do) after sometime and often have a blurring ephemeral return back to reality albeit likely altered. If they are lucky they will recognize someone looking above them with a combination of smiles hidden by their concern. Others wake up attached to tubes, leaders from EKGs, IVs and if they made it this far the unmistakable wafting mixed of scents of hospital smells; rubbing alcohol, stale flowers 24 hours from expiring, hospital food in various states of consumption all combined with the unique various inmates/patients mixed with their own ailment. Imagine that for a moment.

One minute you’re in a Starbuck’s getting your latte on. You ask the barista for a grande. You’re on the phone with a colleague about a deadline which just went sideway. In your mind, working in the background much like a computer, there are a dozen other things to process, consider, choose, decide, procrastinate, plan, worry, and look forward to. You’re processing what your colleague is telling you. You consider talking to your colleague and asking them to call the client to have a meeting. You choose about whether you should get a blueberry muffin at Starbucks or get something on the way to the airport? You decide to refinance the house now because interest rates have gotten pretty low and we should refinance now. You procrastinate getting your driver’s license renewed because who the hell wants to go to the DMV. You plan for a vacation 6 months ago. Where should we go? You worry about whether or not the economy is going to go into a “double-dip?” You look forward to seeing the kids when you get home from your business trip. But at the moment of the stroke, it all stops. But if it was even possible, I digressed more than usual.

While sitting in the car, looking down at my iPhone, and then looking up, I had forgotten why I was there, in my car, in this driveway, of this house, in this state, at this time, of day of this month or year. So even more befuddling to me was why Allison had suddenly been kneeling down in front of me in the driveway of our rental house. I did recognize her and then after a few moments I vaguely remembering something about her talking to me on the phone. It would be accurate to call it a “conversation” because at the time, on the phone I was unable to get past 1-2 words let alone a coherent thought, feeling, expression or an explanation. Later I would understand that Allison guessed on where I was at the time of the stroke. Allison had to guess where I was and which way she drove to find me. She had no idea if I went to the rental, if I was driving, had I stopped on the road side? Did I drive off into a ditch? While the kids were blissfully ignorant and asleep while what was occurring Allison jumped in her car a started to drive following instinct and instantaneously calculating where I might have been and the route I might have taken. She was right.

She was wearing blue pilled sweats, Ugg boot knock-offs and a face that combined urgency with incredible calm। And so here I was. I had no pain. But I did have this sense that my peripheral site was not blurry but was not considered in my mind. Ambient sounds were all muted. Allison pulled into the driveway and kneeled upon an icy driveway and looked straight in my eyes.

Allison: “Are you ok?”
Me: “I’m…”
Allison: “Did someone hurt you?”
Me: “Something…” “I…”

And this is when I started to understand that something was beyond a “normal” experience. I understood most of her questions. And I thought I understood the answers to her questions. At most I could get one word out of my mouth. And often nothing came out of my mouth at all. I knew Allison was calling 911 and this was the first time that more than one word in a row came out of my mouth.

“Something is different.” Not ‘wrong,’ ‘different.’ “Something is different.”

Allison called it in and gave my location and condition. ‘Condition’ for Allison would observe me as confused, not speaking, and I’m sure she was a little scared but….calm. ‘Condition’ for me was ‘different.’ I wasn’t scared. I wasn’t in pain. There was no past or future there was only that moment. And nothing else mattered in my mind. I was calm, and experienced a tranquility that I wish I could bottle. The tranquility remained even though an ambulance and police officers arrived with brilliant red, white and blue brilliant flashing lights along with a small platoon of EMTs and police officers. And despite all the brilliance of lights, strangers, the parade of neighbors pouring out of their front homes and moving closer, I only saw and heard was Allison. At least for the moment that was all I had.

How long would this tranquility maintain? You’ll find out soon…...

Who has a stroke in their 30’s? I do.

2010-09-02T16:56:00.009-04:00

After a long absence my Blog has life once again. Ironic, isn't it?

I’ll miss the stroke. Really. Don’t get me wrong. Sure it was scary afterwards when I understood what the Hell had occurred. The kids, my family, a presentation to give and tomorrow is trash day! But oh how fascinating it was when my mind was co-opt and somewhere between PS (pre-stroke) and afterwards when the “event” was over. But during the stroke which felt like it lasted about 4 hours. There is one (that I can recall) caveat. While the stroke was occurring, linear time does not occur during a left-hemisphere ischemic stroke. There was no past remember and there was not future to consider/worry/think about. There was only the present. And for the only time in my humble adult life I was aware, living in, thinking in solely in the moment and then the following moment and so on. I couldn’t consider the next second let alone tomorrow. And as a result of “Being Present” for those hours I was as content and tranquil as I had ever been. And so now when I say I “miss the stroke” perhaps you’ll better understand. Other than stress (and who doesn’t have it), I was in the best shape of my life. 9% body fat, 158 cholesterol, BP of 120/70, eating right, working out like a freak. Never smoked, only an occasional drink. So, if that doesn’t help, maybe I’ll start smoking, ravenously wolf down steaks every night, swill martinis before dinner and gulp Scotch at the end of meals.

At some point, a clot moved to my left hemisphere and caused the stroke. In an ischemic stroke blood supply to part of the brain is decreased, leading to dysfunction of the brain tissue in that area. 87% of all strokes are classified as “ischemic.”

Stroke without an obvious explanation is termed "cryptogenic" (of unknown origin); this constitutes 30-40% of all ischemic strokes. And despite the alien abduction like slew of tests and procedures the reason for my stroke is still a mystery.

What Happened: The Rug pulled out from under

Things started innocently enough. We moved to Colorado from Connecticut 8 months earlier and we had the joy of moving 5 places in those 8 months with two under 5 year old kids in tow. But we had finally settled on the house that was going to become our home. A recent home we bought no more than 3 days and I was heading to our rental home 1.5 miles away. All was left to do was for me to meet to a couple to look at and buy a rug from the rental and then I was heading home for the day. If you’re dying to find one of your own, here is where you can find it: ( http://www.potterybarn.com/products/quinn-felted-shag-rug-clay/ ). The couple seemed nice enough. Rather non-descript late 30ish/early 40ish. Not gregarious but polite. If I were to guess, they were accountants.

Back and forth they wondered whether it would fit in the room they were planning on them. Not really wanting to keep it any longer, nor did I want to get rid of it, I substantially discounted the asking price as to further incite them to purchase it. “You know, I know it is a little larger than the room you have, but I’ve done the same. Just fold it under the rug where the couch is going to go. Worked great for us.” That sold it.

My Silent Movers

So I rolled up the rug and it started relatively well though we clearly knew this was going to be a heavy job. The husband was in front and I was in the back. It was only slight easier to moving a king mattress. After a little of heavy breathing we collected ourselves for the carry up the stairs and turning the first landing. We cleared the landing and were half-way up and took a moment to catch our breath. On this next push up, with me at the bottom and taking the bulk of weight we gave a big (mighty is an adverb more reserved for heroic efforts) shove. And then something happened. Or more accurately, something stopped happening. I stopped speaking out loud but all of my thoughts and words were in my mind. Though I still not felt that there was anything “wrong.” I felt a little floating sense in my head but not light-headed or pain. In fact I stopped thinking about anything but moving that rug. But the husband and wife, made a couple of comments and/or asked me. And I said…nothing. I smiled, I think. Not really a smile, but more of a sense of content. I even fooled myself a couple of times into thinking I may have actually spoken. But in fact I had not spoken a single word had been uttered from me approximately starting at 7:35PM. I learned later that Allison, my lovely wife whom I spoke with the couple the next day, thought I had “just been on drugs.”

The couple had left in their truck and was started closing up the rental and this is when I started being more aware of something was up. I went into the home to turn off the lights and to be fair, there were a lot of lights indeed. But I couldn’t find all of the lights in the house. After walking around for a few minutes, I gave it up and walked into the garage.

Now in the garage I was simply trying to close the garage with a 4 digit number to shut the garage door closer. I knew it by heart. But I didn’t. I tried first. No dice. No problem…it happens. Tried again. Wrong again. Now I just walked around the garage for a few minutes. Not why I was doing that….maybe thinking that it would come back. At this point I knew I was feeling “different” but still hadn’t connected the dots yet. But there is also a physiology reason why which I’ll come back to later. I tried again, now the 3rd time. Still didn’t work. Tried 3 more times getting the number wrong and figured somehow I obviously forgotten a number that I’ve known for 6 months. Time to call Allison.

Starting on the road towards Patient Advocacy

2009-06-09T12:52:00.003-04:00

Ever since my cardiac experience I have believed that there is a tremendous unfulfilled need for patient advocates. Traditionally the role is played by someone who is a family member or very close friend. But judgment and emotions can often get in the way. In my case, when I was conscious, I played my own advocate. But as the days and weeks wore on, as the invasive tests and needles were accompanied by fewer and fewer answers my mental stamina was waning. Luckily for me I had an incredibly strong support group with me. Allison, my wife, my mother, father and father in-law were all there to help. All strong, well-spoken and not willing to take no answer as THE answer. They stood in and stood up when I needed them the most. Unfortunately not everyone has this type of support. And even if they do, can they always make the right decision when faced with such heavy topics and choices? They were more emotionally drained than I was though they were tremendous at hiding it from me.

And so, it is with this posting that I set out to explore the formal role of patient advocacy. Last week I interviewed with the Stamford, CT hospital to volunteer within their cardiac center. I want to help manage the expectations, fears and concerns about heart surgery. I have spent 15 years managing the expectations of marketing clients which, in retrospective comparison, seems trivial. I'll keep you posted on the progress, discoveries and epiphanies I have along the way.

3 Year Anniversary

2008-10-06T22:55:00.000-04:00

I will apologize in advance for my digressions. But before I do, let me tell you about this.

Three years ago this evening I was sitting in a hotel in Cleveland, Ohio. I’m not a huge Rock and Roll fan. Not so much that I would drive out to Cleveland. According to Google Maps Cleveland is 507 miles away and would take exactly 8 hours and 16 minutes by car. Clearly Google is underestimating two very important variables. 1) Allison’s lead foot. 2) The pervasive traffic that ensnares anyone driving within 100 miles of New York City. I suppose the two cancel each other out so why don’t we just move on? Especially since we flew to Cleveland.

So, back to the hotel; the one that sits on the campus of the Cleveland Clinic. This is where we were. The “We” in this case included Allison, my parents and my 6 week-old first child, Max. We had gotten back from dinner at this nice little Italian place that we found, or rather I should say that my Father found from chatting up the owner of an art gallery who had a penchant for Disney animation cells. He recommended this place down the street. And so, being from out of town and not visiting as tourists we didn’t bring a copy of Lonely Planet: Cleveland so we had to trust someone. And the food was good if not great. No offense to Cleveland, and perhaps I am completely ignorant, but I cannot imagine a tremendous amount of Italians came through Ellis Island and asked, “Which way to the ‘Mistake by the Lake?”

The dinner was interesting in that everyone was trying to pretend like it was just another evening out. Of course having Max there was the perfect thing for everyone to focus their attention on. His coos, burps and sighs. Allison and I were first-time parents and my folks were first-time grandparents. What better way to ignore the elephant in the room than by focusing on such a tiny, innocent little thing that had no idea whether he was in Cleveland, Connecticut or Campagna. And for a being whose sentience had not quite developed yet, he sure seemed to know what everyone in that restaurant needed. A diversion or at very least a topic to discuss other than his Dad’s open-heart surgery that was scheduled for 6AM the following morning. THAT is why you go to Cleveland. Because they have the best Cardiac Surgery and care center in the world.

In retrospect no one should be surprised about Max’s subliminal genius. It was Max’s impending arrival that prompted the life insurance test that brought to light the severity of my heart condition. And so it was that an unborn child told me that until I have surgery to repair a defective heart valve I could, without exaggeration, die without any further warning. Sudden Death. Yep, that is one of the potential results of the condition if left untreated. In fact, on October 7, 2007, two years to the day after my surgery, a 35 year-old Michigan father of 3 collapsed at mile marker 19 of the Chicago marathon. He died an hour later. Now he is just one man. But so am I. But this is starting to sound like a Lifetime movie so lets get things back on track.

For those who followed along back then you’ll remember that it wasn’t as smooth a ride as we had hoped for. Of course “smooth ride” and “open-heart surgery” rarely peacefully co-exist. What should have been 4-5 days in the hospital turned into 3 excruciating weeks. 3 weeks of pain, mismanaged expectations, incompetence, fears and at least one brief moment of thinking that I wouldn’t make it out at all. Luckily all of that was tempered, if tenuously, by joy, perseverance, support, laughter, a healthy dose of skepticism and a refusal to become merely a statistic of incompetence. And if I could change anything about those three weeks it would not be to take away my pain. I start and end each day by staring at the scar left behind by the surgery. The scar that was made larger when they had to go back in after 3 days of healing; the scar that was made larger after they cracked my sternum for the second time in 3 days. Occasionally I look at the scars from the 3 drainage tubes. When I’m getting dressed in the morning and the light is on, I can see where they unceremoniously made an incision on my foot for the lymph angiogram they had to perform to figure out what went wrong. What I WOULD change if I could were what went through the heads of those who joined me in Cleveland in October 2005. My wonderful wife, Allison. My doting mother, Maria. My steadfast father, Ralph and half way through the ordeal, my supportive father in-law, Norm. While each had pretty good game faces when they needed it, I know, back at the hotel, when the lights dimmed and the TV was turned off was when each one likely felt very alone. You feel alone because you can’t fix it. How do you look at your son, husband, friend suffer and when you ask the best in the world what is happening the only answer is, “We don’t know. We haven’t seen this before.” And that is when they likely did battle with their minds. It is those battles that I wish I could erase.

I suppose it is at this point that people say how they’ve changed. That their ordeal made them a different person. That they stop to smell the roses. They live for the moment rather than stressing about the future or regretting the past. Maybe they changed careers and started living their passion. They live a bumper sticker life. Nope. Not me. I didn’t have any epiphanies. I didn’t have that moment of clarity. I didn’t transcend anything. But I have had three more years to watch Max grow into a precocious little trouble-maker with good intentions (just like his dad). To watch the birth of Max’s little brother, Miles 5 months ago. To have three more years with my best friend and sweetheart, Allison. And to have three more years of all the little things that make up the menagerie of life. But I digress. I would tell you more, but I’ve gotta’ balance the checkbook.

Joe

Thoughts to the Kroll Family.

2008-08-11T09:18:00.002-04:00

Today a friend, Jeff Kroll, is having his aortic valve replaced. All of my positive thoughts and well wishes are going out to Jeff, his wife Mary and Maddie and Colin.

If you want to send him any well wishes he is keeping a blog at: http://drop.io/krollheart

Good Luck, Jeff. You'll come through it like a champ.

Love,

Joe

A Tenuous Relationship

2008-07-29T19:14:00.001-04:00

The following originally appeared in the NY Times on July 29, 2008

Doctor and Patient, Now at Odds

By TARA PARKER-POPE

A growing chorus of discontent suggests that the once-revered doctor-patient relationship is on the rocks.

The relationship is the cornerstone of the medical system — nobody can be helped if doctors and patients aren’t getting along. But increasingly, research and anecdotal reports suggest that many patients don’t trust doctors.

About one in four patients feel that their physicians sometimes expose them to unnecessary risk, according to data from a Johns Hopkins study published this year in the journal Medicine. And two recent studies show that whether patients trust a doctor strongly influences whether they take their medication.

The distrust and animosity between doctors and patients has shown up in a variety of places. In bookstores, there is now a genre of “what your doctor won’t tell you” books promising previously withheld information on everything from weight loss to heart disease.

The Internet is bristling with frustrated comments from patients. On The New York Times’s Well blog recently, a reader named Tom echoed the concerns of many about doctors. “I, as patient, say stop acting like you know everything,” he wrote. “Admit it, and we patients may stop distrusting your quick off-the-line, glib diagnosis.”

Doctors say they are not surprised. “It’s been striking to me since I went into practice how unhappy patients are and, frankly, how mistreated patients are,” said Dr. Sandeep Jauhar, director of the heart failure program at Long Island Jewish Medical Center and an occasional contributor to Science Times.

He recounted a conversation he had last week with a patient who had been transferred to his hospital. “I said, ‘So why are you here?’ He said: ‘I have no idea. They just transferred me.’

“Nobody is talking to the patients,” Dr. Jauhar went on. “Everyone is so rushed. I don’t think the doctors are bad people — they are just working in a broken system.”

The reasons for all this frustration are complex. Doctors, facing declining reimbursements and higher costs, have only minutes to spend with each patient. News reports about medical errors and drug industry influence have increased patients’ distrust. And the rise of direct-to-consumer drug advertising and medical Web sites have taught patients to research their own medical issues and made them more skeptical and inquisitive.

“Doctors used to be the only source for information on medical problems and what to do, but now our knowledge is demystified,” said Dr. Robert Lamberts, an internal medicine physician and medical blogger in Augusta, Ga. “When patients come in with preconceived ideas about what we should do, they do get perturbed at us for not listening. I do my best to explain why I do what I do, but some people are not satisfied until we do what they want.”

Others say the problem also stems from a grueling training system that removes doctors from the world patients live in.

“By the time you’re done with your training, you feel, in many ways, that you are as far as you could possibly be from the very people you’ve set out to help,” said Dr. Pauline Chen, most recently a liver transplant surgeon at the University of California, Los Angeles, and the author of “Final Exam: A Surgeon’s Reflections on Mortality” (Knopf, 2007). “We don’t even talk the same language anymore.”

Dr. David H. Newman, an emergency room physician at St. Luke’s-Roosevelt Hospital Center in Manhattan, says there is a disconnect between the way doctors and patients view medicine. Doctors are trained to diagnose disease and treat it, he said, while “patients are interested in being tended to and being listened to and being well.”

Dr. Newman, author of the new book “Hippocrates’ Shadow: Secrets from the House of Medicine” (Scribner), says studies of the placebo effect suggest that Hippocrates was right when he claimed that faith in physicians can help healing. “It adds misery and suffering to any condition to not have a source of care that you trust,” Dr. Newman said.

But these doctors say the situation is not hopeless. Patients who don’t trust their doctor should look for a new one, but they may be able to improve existing relationships by being more open and communicative.

Go to a doctor’s visit with written questions so you don’t forget to ask what’s important to you. If a doctor starts to rush out of the room, stop him or her by saying, “Doctor, I still have some questions.” Patients who are open with their doctors about their feelings and fears will often get the same level of openness in return.

“All of us, the patients and the doctors, ultimately want the same thing,” Dr. Chen said. “But we see ourselves on opposite sides of a divide. There is this sense that we’re facing off with each other and we’re not working together. It’s a tragedy.”

well@nytimes.com

Spam with a Heart

2008-04-13T20:33:00.004-04:00

We are all shameless from time-to-time. Consider this my time.

If you are so inclined, please indulge me by reading the below.

This is a happy story.

I am writing on behalf of my nephew, Grayson Blatt. Grayson was born in Littleton Colorado on June 22, 2006, which makes him almost 2. Like many 2-year-old boys Grayson likes trucks, dinosaurs and anything his brother, Parker is playing with. Unlike most 2 year olds, Grayson was born with heart disease; not the kind that comes from eating too many deep-fried peanut butter and jelly sandwiches and sucking on Marlboro Reds like they were pixie stix. Rather Grayson has a congenital heart defect (CHD).

There are over four-dozen categorized CHDs and each occurrence has its own level of complexity. Grayson’s specific defect is categorized as atrioventricular septal defect (AVSD). This complex defect is best described as a large hole in the middle of the heart. It results from a lack of separation of the atria and the ventricles into separate chambers, and a lack of separation of the mitral and tricuspid valves into two separate valves. There is a resulting large connection between the two atria, between the two ventricles, and a single atrioventricular (or AV) valve, whereas there should be separate mitral and tricuspid valves. As a result, the heart circulates already oxygenated blood back to the lungs without it going out to feed the body.

That is the clinical description. The practical explanation is much easier to understand but no easier to accept. Grayson’s heart was working 2 to 3 times harder than your heart does. Despite the extra effort, oxygen wasn’t reaching the rest of his body, at least not enough of it was. By eight weeks of age Grayson was growing listless. He was too tired to eat much less anything else.

So why is this a happy story? Because all of the above was two years ago and the picture you see below is of Grayson this past winter. It took 7 hours of surgery, 11 days in the NICU, 6 medications and continuing occupational and physical therapy but Grayson is now a bundle of laughs, overflowing with innocent mischief and full of all the promise that every child represents.

Grayson’s amazing progress is the result of love, courage and determination. But it is also due to medical progress, dedicated professionals and the unrelenting pursuit of knowledge to reduce the frequency of severity of heat disease.

Heart disease is the number one killer in America. According to the March of Dimes, congenital heart defects are the #1 birth defect. In the US alone, over 25,000 babies are born each year with a congenital heart defect. That translates to 1 out of every 115 to 150 births. (To put those numbers into perspective, only 1 in every 800 to 1,000 babies is born with Downs Syndrome.)

You can help.

On June 7th the 2008 Denver Heart and Stroke walk will be held. If you want to sponsor Grayson and his "team" you can click on the link below and show your support. All donations go to the American Heart Association.

https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=246923&lis=1&kntae246923=06CA5C47154B449F9888C7CE23D614FD&supId=169433921

Grayson and I thank you.

Joe

The Return

2008-02-06T21:05:00.000-05:00

February 6, 2008
5:49 PM

I suppose it was a little selfish of me. If it is any consolation the self-imposed guilt has been consistent if not great. Two years ago I began this blog as a means to keep friends and family posted on my progress through a personal trial; open heart surgery. What I did not anticipate is that both the daily writing I did and the regular feedback I got would be a salve equal to, if not better than all of the drugs, tests, incisions and sutures that would soon follow. And so you were with me along the way; and for what? So that I could abruptly stop writing with no warning, reason or sign-off? The last post from Anonymous was: “You still kickin’?” What a jerk I was.

At the risk of sounding as if I am diverting blame, I believe some of it came from one of my college writing professors. And seeing a pattern amongst some of the writers we had been studying, Hemingway, and Faulkner among them, it seemed as if the only way to write anything worth writing was to have a life no one would want. And by that I mean life experiences no one would want. And Dr. Ginsberg concurred believing that it was not possible to be a quality writer without having a trying life. So I faked it in college writing ‘fiction’. It was not until the late summer of 2005 did I finally have something worth writing about….my mortality. So I did and then I stopped. I stopped because I was out of the woods and I thought, “Who cares about what I write now? I had readers for the same reason that people watch NASCAR or reality TV. For the crashes, for the public humiliation, for the drama. No one admitted it, but the story would not have been nearly as interesting if I were going in for an appendectomy.

But something for me changed when I read a book recently. It is titled Sick Girl written, I think, by Amy Silverstein. So the jacket cover goes something like this:

A vibrant young woman entering the prime of her life discovers that she has cardiomypathy sp? (a dying heart, suffocating from the inside out one A-Fib attack at a time). At the same time she meets the love of her life; a reason to keep fighting. The only thing that will save her physical life is a heart transplant that she eventually gets. But rather than be grateful for the second chance at life she is angry at the doctors, the anti-rejection medication that makes her vomit and the never ending tests she must undergo throughout her life. Is the pain and inconvenience worth it?

I bought the book because I wanted to read about what she went through, which I will say with unmitigated reservation, is absolute Hell. Her story makes my ordeal sound like a teeth cleaning (just the polishing part). And so here is a woman who had plenty of misery and plenty of reason and fodder to write and while it was decent, she is no Hemingway or Faulkner (sorry, Amy). And so I will try a different philosophy. I will write for writing’s sake. And I will share what I observe, and see and feel. And I don’t plan on shooting myself or becoming an alcoholic or even having another heart surgery. I plan on living a boring life while still being a decent writer. OK, I’ve gotta run. I think I have to take the trash out.

~Joe

Direct TV

2005-11-06T23:59:00.000-05:00

You walk through first class when making your way to your impossibly small coach seat next to the restroom. The first class passengers who boarded first are getting mimosas and free copies of The Journal while another attendant hands out hot, moist washcloths. Some have already fully reclined in their plush leather seats.

The doors close, the curtain is shut and you are left to endure the 6 hour flight between the gentleman who smells of a land you’ve never been too and foods you’ve never tasted and his wife to whom he yells at in a language you cannot understand. You offer the soul mates an opportunity to sit next to one another, but they have no idea what you are saying. This is the one flight a year they take and they are just fine having you sit in-between them. You are not offered food due to cost cutting unless you want to pay $13.50 for a pre-fab salad from TGI Fridays. Mmm mmm. Overly cold, tasteless and sure to please no one, but it is a momentary diversion from the guttural spit that has had you in the crossfire since you sat down.

In Cleveland, after the first open heart operation and the drainage tube event but before the lymph-angiogram and the second open heart surgery, I was contacted by administrators from the Clinic. It seems it had been brought to their attention that I had been writing a very public account of my experiences while under the care of the clinic. I was told that there are “…many people paying attention to my blog and if there is anything that I am or have been unhappy with I should speak directly with a “patient advocate”. The conversation lasted about 30 minutes all the while my entire family sat around amazed that it was coming to this. I was never told to stop, lord knows they couldn’t say that even though it was strongly implied. So I shared with her my frustrations about it taking an hour to get a nurse to answer the call button, the inconsistency of information from the myriad doctors I saw each day, the consistently delayed schedule which had me staying longer than most of us thought needed at times, the absurdness of the pain scale and pain maintenance techniques and then some of what I heard uttered during my stay, such as a nurse saying to a colleague: “I have such a bad cold, I shouldn’t even be here.” And I shared all of this freely and then with anger. It angered me that at least I was physically and mentally able to be heard there in the hospital, but also to share my challenges with concerned friends and family via the blog. My capacity and my public record of the occurrences, I am positive, meant that I received better care and attention than the average patient. And the anger built as I realized how many people did not have the personal capacity nor the friends or family to stand in as their guardian.

The first time I came up from ICU I had a semi private room and in the bed next to me was Mr. Patterson. I learned nothing of his ailments, his past or his hopes for the future. Mr. Patterson was 89 years old disheveled long white hair and a bushy mustache. He was disturbingly emaciated and had no visitors or calls for the 3 days we shared quarters. I thought his agony would ease once they got him settled the first day. As they transferred him to his bed he let out wails of pain and crushing despair that made no discernible words but it was plain enough to know what he was saying. And so this continued for 3 days and 3 nights. The wails would reach deep into my soul when they were loud and seep agonizingly into my head when they were low but either way their cadence continued. The nurses aides changed his bed linens each day and laughed and joked about different men they were dating and other nondescript trivialities. And all the while Mr. Patterson moaned, and they laughed.

And somewhere during that period I began to question my own humanity for all though I called the nurses on Mr. Patterson’s behalf when his pain seemed to spike, I wondered after they arrived did I call them because Mr. Patterson needed help or because I need a respite from his cries of despair?

So the blog gathered critical mass and shortly after the call from the administrators Dr. Gillinov was so kind as to offer me to move to the VIP floor which I gratefully accepted. And here in a 1200 square foot room with two refrigerators, two televisions with Direct TV and original art work on the walls I sat as “room service” was brought for meals. And then one of the cleaning ladies asked who I was because this was the same room Lebron James of the Cleveland Cavaliers stayed in the same room a week earlier because a case of Pleurisy. “Do you watch soap operas? I asked. “Oh yes, I sure do.” “Which ones?” “I really like the Young and the Restless and I also likeGeneral Hospital. I’ve been watching that one for over ten years.” “Oh well,” I said. “I’m just starting out. I’ve been on Days of our Lives a few times but they told me I’m going to be a regular." And shortly after she left, looking more shy than when she first came in. And then the smile fell from my face because Mr. Patterson couldn’t write a blog and now he didn’t have Direct TV.

~Joe

Surgery #1: 31 days post-op
Surgery #2: 17 days post-op

2 weeks

2005-11-03T22:30:00.000-05:00

It has been two weeks since the second surgery.

If anyone needs any beta blockers, ace inhibitors, iron supplements, acid reflux suppressors, diuretics, pain killers, swelling reducers or anything else, just let me know. The picture above is what I take each day for all sorts of things. When I test positive for steroids I will have an alibi. I’ve stopped taking the pain meds mostly because the pain is now bearable but also because they were giving me night sweats. At least I think it was the pain meds and not that reoccurring dream of the scary clown offering me parenting tips.

2 weeks seems to be the turning point. It was after the first surgery too. That is when I was the most ornery in the hospital. That is when I finally said, “I don’t want anyone touching me that doesn’t know what they are doing. In fact here is a list of the people that I refuse to have contact with.” This was the best thing I could have done, I just should have done it sooner. But that was then; let’s consider the here and now. Following is an inventory of what I can and cannot do at two weeks post-op:

I can walk around the block before becoming winded.
I can raise my arms above my head.
I can sleep more than 3 hours in a row.
I can spend 20 minutes on the phone with HP customer service before giving up.
I can dress myself and not just in gowns.
I can make a meal that consists of more than 2 ingredients (but not more than 4).
I can breathe somewhat normally.
I can fold laundry though I still don’t enjoy it.
I can sleep on my right side.
I can check email and occasionally regular mail.
I can read the NY Times but am a little slower than usual at catching the CIA leaks.
I can fit into my “skinny” jeans again now that I’ve lost about 12 pounds.

I cannot make small talk unless I know you well in which case we wouldn’t be having small talk anyway.
I cannot sneeze or cough without enduring brutally sharp pain in the center of my chest.
I cannot sleep on my left side or stomach.
I cannot walk the dog.
I cannot lift anything more than 10 lbs.
I have zero appetite for any fish.
I still cannot play the piano.
I cannot drive or sit in the front of a car.
I cannot feel my toes.
I cannot believe that they are already playing Christmas commercials. I feel bad for Thanksgiving.

~Joe

Surgery #1: 28 days post-op
Surgery #2: 14 days post-op

Happy belated Halloween...

2005-11-02T13:15:00.000-05:00

from Maggie the Super Bulldog and her trusty side kick, Max the Ear of Corn.

Dedication

2005-10-31T10:14:00.000-05:00

My mother stepped into the room holding a mascara stained tissue. “He is doing OK. The doctors said they got it all and that he was going to be fine. Joseph, do you want to go see your father?” Well, of course I wanted to see him, but I want to see dad before the brain surgery, not after. I want to see the man who never took a day off of work, who never got sick, who knew all the answers to Trivial Pursuit.

I took my mother’s hand and walked down the hall of Cornell’s neuro-surgery wing. Upon entering the room I was awash in sunlight that was streaming in through the westside window. The heat felt good on my cool skin. And there in the bed sitting up lay Dad though it looked nothing like him. I stood at the foot of the bed for a moment and surveyed the scene. His head was shaved for easy access to the cranium. Staples then ran from the top of his head forward to the highest portion of his forehead and then back to his left ear. His face was completely purple from the nose up. His eyes were swollen as if he just lost a prize fight. I stood there at the foot of the bed for a long moment and felt this cold clammy rush to all of my exposed skin. I made my way around the bed and my mother quickly got a chair for me. “Sit down, honey, you don’t look so good.” Um, Mom have you seen dad lately?

My father had a brain tumor the size of your fist that was wrapping itself around his left retina. It was benign, but I don’t see how that word applies considering what I surveyed that day. Oh, it’s a friendly tumor!

My father did turn out to be fine. Even today, twenty some odd years later you can barely even make out the scar. But the lasting impression from that day is that Dad isn’t impervious to the outside world. That mortality does apply to him too. That maybe he won’t know who the king of Prussia was in 1772. Every child comes to this realization at some point and it is a sobering moment after years of being intoxicated on childhood innocence. I thank god that Max was too young to remember these last 3 weeks of me in such vulnerable states.

There are two good friends with whom I work that were unfortunate enough to lose their fathers over the last few months; one through illness and another through bizarre happenstance. Neither more tragic than the other. And it is for this reason that I dedicate this post to all the fathers. You are forever invincible in our hearts.

~Joe

Post-op #1: 24 days
Post-op #2 11 days

Scatching the Itch

2005-10-27T21:10:00.000-04:00

I recommend looking for the rack with the out-of-season clothes. This usually allows for many options in Marshall’s. As an example, today I ended up behind the shorts and t-shirts in the men’s section. I waded through ladies’ pants suits and the woefully inadequate shoe department and on to the rack with the shorts. It was here that I indulged. First it was nonchalant as my eyes darted back and forth. I started with the right knee and before I knew what I was doing I was scratching my crotch as if I were washing laundry in the river. Moments (or hours later) my eyes rolled forward again just in time to catch a horrified woman in her 70’s with a shopping cart filled with control-top fishnets. I smiled and slinked away.

I suppose I should give some explanation beyond my baseline depravity. You see, one of the things they don’t tell you about with heart surgery is the shaving. The body shaving. For those that know me, you know that I’ve got a fair amount of body hair; more than average but far from Wookie. And if natural selection played out with hospital visits, those with less body hair would fair quite a bit better. For my operations my entire chest and abdomen was shaved, which I expected. What I didn’t expect was to have a 4 inch strip on the inside of my right leg shaved from the ankle to the knee. Both of my thighs, as high as they went, were also shaved. It seems they wanted to have access to the veins in my legs if the surgeons decided they needed them while they were inside me. Additionally, many of the tubes I had inside me were taped to my thighs so I wouldn’t accidentally pull them out if I rolled over. Inevitably the hair grows back in but not without its trials and tribulations.

And this is how I found myself in the clearance section of a discount retailer with my hands trying to satisfy an insatiable itch.

In all I was there 15 minutes. I was exhausted. I found Allison coming out of the changing room. She put Max and I in the backseat of the car and I went home to take a nap…and scratch.

~Joe

20 days post-op #1
7 days post-op #2

This is how I spent my day:

2005-10-26T21:26:00.000-04:00

http://www.twinkiesproject.com/

~Joe

Tomorrow

2005-10-26T00:32:00.000-04:00

Tomorrow I will shave and shower.

Tomorrow I will sort the mail and pay the bills.

Tomorrow I will survey the fridge and lament its contents.
Tomorrow I will curse the neighbor’s dog while praising mine.
Tomorrow I will savor the twilight between sleep and consciousness.

Tomorrow I will hold Max tight to my chest while Maggie licks my feet.
Tomorrow I will notice how the leaves changed and how little the grass grew.

Tomorrow I will have coffee with Allison and look forward to washing the cups.
Tomorrow I will see the same dust bunny in the corner and pass by it yet again.

Tomorrow I will do these things because Tonight I am home.

Pssst.

2005-10-25T11:02:00.000-04:00

Don't tell anyone, but I'm gonna make a break for it.

Getting sick/hurt strategically.

2005-10-24T22:04:00.000-04:00

At the rate Max is growing he'll have a beard like mine by this time next week.

The health machine moved pretty slowly today. The echo that was supposed to happen by noon didn't occur until 4:00pm by a radiology tech named Shar. That name and the pink highlights should have been warning enough that she wasn't going to be gentle. Don't get me wrong, echos are harmless, basically an unltrasound of the heart. But this was the first one I would categorize as uncomfortable. Perhaps one of Shar's 13 cats peed on her bed again last night because she found just the wrong spots inbetween my ribs to jam the "wand".

The physician's assitant apologized about not being able to take the tubes out until tomorrow 8:00AM because as she said, we don't remove tubes after 4PM, "just in case something happens we want to be sure the right people are here to help." And she has a point. It isn't as if this is a world renowned hospital or anything.

Please, if you take nothing away from this blog, take this:

DO NOT GET INJURED OR ILL AFTER 4PM ON WEEKDAYS OR ANYTIME ON WEEKENDS....There. You have been duly warned.

The Good News
The results of the echo showed no appreciable gain in volume compared to the echo immediately following the second surgery. This means Dr. Gillinov and his team did what was needed to close up what was leaking. Thank you, Dr. Gillinov. In fact he told me that during the surgery they (he, 4 other surgeons, a few cardiologists and the rest of the team) injected more cream into my thymus, put me almost perpendicular to the ground and proceeded to watch me (while split open presumably) to see if there were any other leaks. There were none and today's echo proved all to be well.

So tomorrow I am keeping my fingers crossed that we will get our walking papers. We'll let you know for sure when we know and when I get over the Homeric sorrow sure to accompany the loss of my tubes, wires and tethers.

~Joe

15 days post-op

3 week old beard & 9 week old Max

2005-10-24T20:59:00.000-04:00

These are the Days of our lives in General Hospital.

2005-10-23T18:37:00.000-04:00

Met with two different doctors today and things are looking positive though I won't allow myself to jump ahead at all in the process. Turns out my triglicerides number in the fluid needs to be below 100 and is currently at 67. Three times a day a nurse comes in and collects the fluid from each of the containers labeled "1" and "2" respectively. So if the trend continues and the echocardiogram shows no further accumulation of fluids then tomorrow they will remove the tubes from my chest. They are actually in my stomach area just below the center of my rib cage which makes using my abs more than uncomfortable. I envision the scene at the end of Braveheart when William Wallace is finally captured. William Wallace woulnd't flinch at this though. And what will get me through it is that it should be the last painful thing to manage before I get the hell out of dodge.

I've been here nearly 3 weeks have had 2 showers 3 decent meals, many laughs and smiles from Max, innumerable hugs and kisses from family, countless heartfelt calls, made the bed 0 times, made no meals, feel as frail as an 80 year old, cursed out "kids" twice, thought about Maggie the super bull dog 53 times, took out the trash 0 times, read the comments on this blog 81 times, have watched 105 hours of television (30 minutes of which included Oprah), shaved 0 times and have said, "I can't believe how much grey I have in my beard" 12 times.

So that's just a sampling...when I'm feeling more industrious I'll give you more details, but despite football being on the tube today I am behind my tv quota and therefore need to go.

Hope to have good news for you all tomorrow.

Joe

~15 days post-op

Golden Arches and Clear Liquids

2005-10-22T23:43:00.000-04:00

Today gets us one day closer. I saw two doctors who while both noncommital seemed to be the most positive since they've arrived on the scene. The Echocaridogram I had today showed a "trivial" amount of fluid which is expected after a surgery like this. Also, I still have those tubes draining out of my chest so a little more coming out and no, I'm not letting anyone adjust these. They will likely come out Monday after my body has had a few days to heal around them. So that will be a another enjoyable experience.

But the take away here is positive. The fluid doesn't appear to have any more triglycerides in it and therefore the most recent surgery appears, so far, to be a success (everyone, please knock on wood).

My diet was changed again briefly, just long enough to get my hopes up and then burried under an ashen colored salisbury steak (I still don't know what the hell this is).

After breakfast (chicken broth, cranberry juice and orange jello) the two doctors came in and both said I can have a regular diet again....and this makes a big difference now b/c the floor I am on actually has decent food. I was supposed to have Filet and Shrimp for dinner if you can believe that. I was allowed to have a lunch of turkey salad, tortoloni soup, salad and chocolate ice cream for dessert. Oh, thank God. At least now I can look forward to meals.....That was until dinner arrived and it was: Beef broth, orange jello, raspberry sherbert and diet gingerale. "Well they must have this wrong" I said. "I'm getting filet and shrimp." "I'll go let them know," declared Allison as she walked out of the room. Moments later she returned with the nurse who began an apologetic explanation. "I'm sorry Mr. Salvati. Dr. Gillinov wants you to stay on this diet until we get the results back from your drained fluid, so you need to stay on the clear liquids diet." "Just so you are clear, a "Clear Liquids diet" is not a diet. It is fasting and I am not protesting anything here. Can I just have a damn ham sandwich?

You know the reposnse already so I drowned my sorrow and dissapointment in a couple of Darvaset and am looking forward to an Ambien shortly.

As an tangential to the whole food thing, take a read below...I personally can't believe this.

The following press release was posted on the Cleveland Clinic's web site in September 2002. Take a quick look at it.

http://www.clevelandclinic.org/heartcenter/pub/news/hot/mcdonalds9_02.asp?firstCat=1&secondCat=429&thirdCat=526

Now to me the fact that the number one heart center in the world would want to be on the same press release as the icon for the unhealthy American diet is one thing. What is even stranger is what I saw the day I arrived here.

I had a full day of tests with a break for lunch and during that time I searched out the cafeteria. There was quite a bit to choose from: a decent salad bar, an "Internation Corner" which either had stir-fried rice, rice and beans or paellea. Apparently the only thing eaten outside the US is rice. Then there is your proverbial deli bar, sodas, and meal accessories like pretzels, chips, etc. But, if you chose not to partake in any of the usual offerings the clinic did have partners which offered other options.

Starbucks - Who wouldn't want a strong good cup of Joe while in a hospital

Subway - Jared lost something like 800 lbs so that must be good for you right?

McDonald's - Yep. The golden arches. The subject of the movie "Supersize Me" The imitaded restaurant in the movie "Coming to America". In all of its glory it presents itself like a dining oasis in a desert of healthy options. Big Macs, fries, Double Quarter Pounder with cheese, Filet-o-Fish (which makes it neither a filet nor a fish) and the ever popular McNuggets. How they raise chickens in those same 6 shapes I'll never know.

Am I the only one who finds this a little strange; A McDonald's on the first floor of the Heart Center at the Cleveland Clinic? Is it meant to keep business up? ( Board Meeting: Damn it, George, these quarterly numbers are in the toilet! We are either getting the message across too well about heart disease or we are losing them to competitors. We need to think outside the box. Get that clown from McDonald's on the phone ASAP.) Maybe it is a going away present..You'r heart is healthy again. Stop by the McDonald's on your way out to treat yourself...oh, and here, don't forget your free supersize coupon for coming to the Clinic.

Whatever.

~Joe

14 days post-op

Quick Update

2005-10-21T19:14:00.000-04:00

Allison apparently did an excellent job recounting our latest surgical exploits.

Last night was rough. Woke up around 2:30AM with pain that wouldn't let me go back to sleep. It was like going through the same surgery twice. But they think they got all of the leaks and tomorrow we'll have another echocardiogram to find out.

They had to break the original 7 ribs they broke for the first surgery so that was fun.

I have pain in those ribs and my side when I breath deeply...they say this should go away soon....I told them I should go away soon.

My feet don't hurt anymore but they are severely swollen and a lovely shade a blue.

If things stay positive from this point on the last painful experience I should have is the removal of the drainage tubes in my chest. They are smaller than the one they used for the open heart surgery but now there are two. I feel like cyborg.

Last note: On my diet decathalon.....they switched things again. I am now on a "Clear Liquids" diet. This means anything you can see through. The broad spectrum of choices include:

Tea
Water
Jello
Beef Broth
Ginger ale
Popcicles
Cranberry Juice
Italian Ice

So, as you can imagine I've been indulging quite a bit. Not even Mom could cook like this.

Joe

~14 days post-op

Thursday night's "Survivor"

2005-10-20T19:42:00.000-04:00

Hi everyone! I am making another cameo appearance until Joe is up and out of bed (he promises he'll be back tomorrow).

His surgery went very well this morning...here are the details:

A large team of surgeons and cardiologists gathered today at 6:30am to open Joe's chest back up along the initial incision made only 13 days ago. With a bit more blue dye and the presence of the half and half surging through his veins, they were able to pinpoint the general location of the hole in the thymus and put in a few stitches. Then, for good measure they put in a few more and topped it off with some sort of glue substance to make doubly sure they closed it off. Then, as Dr. Gillinov explained to me on his post-op call, they all stood around for 40 minutes and just watched this tiny little vessle (no wider than a strand of hair) to see if it would leak. It didn't.

After sewing him back up, they put him in the ICU for a few hours and I escorted him back to his room at 5pm this evening. Other than being a bit loopy from the drugs (starting sentences and then falling asleep before he finishes his thought) he's feeling good. The pain in his feet is gone and we are incredibly hopeful that this is the last hurdle he will have to face here at the Clinic. Please God...let it be over.

At this point, we anticipate he will be observed through the weekend and could potentially be home early next week.

On a side note...one of my happiest memories of these past 16 days is of this past Monday night when Joe and I sat at the computer here on G71 and read all of the hilarious comments made by many of you in response to his "play along with my low fat diet" blog entry. We laughed harder than we had in a long time. For that, I am so grateful.

And finally, because I'm a proud Mommy, I have to fill you in on my precious baby boy. Max is growing like a weed!!! His feet are hanging over the end of his carseat (which he has spent WAY too much time sleeping in over the past few weeks) and his smiles have turned into small giggles and "coos". Talk about grateful...he has truly been our saving grace and has allowed all of us a perfect diversion from the stressful hours normally filled with waiting and praying.

And now, I must get back to the room to my amazing husband...a true Survivor. We have a "date" to watch tonight's episode of the reality show that makes 40 nights in a South American aligator infested jungle look like a walk in the park.

~Allison

13 days post-op

Milking as much as they can out of me.

2005-10-19T21:53:00.000-04:00

Disclaimer: This post is being written while on Darveset after a long day.

Maybe it is because I am in a customer service business but it will never cease to amaze me how poor most people and instutions are at managing expectations.

Much to my dismay, I did not recieve any pain killess prior to going for the lymphangiogram. No verset, no phentenol, not even damn leather strap to bite down on. "Oh, the dye is cut with 50% lanacaine, a topical analgesic that will numb you as it goes it" says the NURSE who did the injections. F-ing great. Not only is it not Dr. Griesen who is doing the injecting, but it is a nurse who isn't much for negotiating. "Don't worry" she says, " most people say they feel a little pinch and then its over." At this point I am already down in radiology on a gurney watching this woman unwrap the syringes. It is an open area with stations partitioned only by curtains.

Moments earlier this boy of about 10 came in with his parents. They moved into the station directly across from me. And I thought, "Damn it!" I can't make a run for it if the kid is sitting still. Granted, he wasn't being stuck with needles, but he seemed happy as clam (never understood this analogy but will use it nonetheless).

So I re-engaged the joyless nurse. "How many injections do you need to do? One, two?" "Actually, no. We need to do an injection between each one of your toes, so I guess that makes it 8." "What?!!" "Don't worry. It'll be quick and it won't be that bad." "Tell me nurse...when was the last time you were on the recieving end of this treatment?" "Well, I haven't but this is what people tell me."

Just for the record: There is no way in Hell that anyone who undergoes this feels "just a little pinch". You want to know what it feels like? It feels like getting a needle shoved inbetween each one of your toes. That's how it F-ing feels!

But wait there's more! What I also wasn't told was that after the injection the Dr. then needs to make an incision in one of the vessels in my foot and inject more dye. Oh, Happy Days!!!

The good news is that for the next 2 months my will be the same shade of green as the 18th hole at Augusta. Also, if I shed any tears or sweat, they will both have a blue tint to them. This is like X-Men One when the senator get's turned into that gellatinous mutant. (If you saw the movie you'll get it.)

So my feet are still swollen and I'm going to head to bed soon, but I am yet to share any news of consequence, so here goes. If you've been skimming, now is the time to read. The dye DID reveal a small leak in the thymus, but it was not well situated to undergo the second part of the procedure (through the liver). So what is plan B?

I'm so glad you asked. Tomorrow morning at 7:00 I will be wisked away once again to the nether regions of the hospital. Dr. Gillinov is going to open me up again through the same incision he created for the mitral valve repair. He is then going to try to suture the offending gland. That's right ladies, and gents, another surgery. It should last about an hour an I have been told the recovery will be nowhere near as rough as the original heart surgery, but at this point, who the hell knows.

The only funny part of this whole thing is that this evening I was told that I had to change my diet. This time they want me to eat as greasy food as possible. By doing this, when they go in tomorrow, they should see more than a drip from the thalamus. So, I ordered: tortollini with alfredo sauce, a sirloin steak, fresh cut fries, and half a glass of olive oil to be sopped up with bread. Somehow they didn't think this was enough so they started bringing me a juice glass full of whipping cream every two hours that I had to finish. Ever bet someone that they can't drink 1 gallon of whole milk in an hour without puking? If not, you can make some good money while betting the bravado. It can't be done, but by midnight this evening I think I will have ingested 1 liter of whipping cream.

I will be in the ICU again tomorrow night so look for some sort of update from Allison, who by the way, is a rock. Honey, I love you with all my triglicerides.

~Joe

12 days post-op

Keep your lymph nodes crossed.

2005-10-18T19:58:00.000-04:00

Tomorrow morning around 7:30AM I will be going to take my latest test, a Lymphangiogram.

A short time prior to the procedure I will be given Phentenol and Verset which will control pain, but I will be awake for the entire procedure.

The procedure itself will then be in two parts with Dr. Gillinov overseeing the entire process.

Part 1:
Dr. Geisenger of the Cleveland Clinic will inject a high contrast blue oil-based dye into the webbing between my toes...yeah, you read that right. Over the next 2-3 hours that dye will make its way through my lymph vessels in my legs and chest. My body will then be x-rayed to see where the dye and lymph is traveling. If everything appears to be "normal" with no leaks or drips from the main system, this is where the procedure will stop.
Duration: 2-3 hours

Part 2:
The second part of the algorythim would play out if the dye and lymph is shown to be "leaking" from my thymus, as has been posutlated. In this case, Dr. Sands will insert a needle and catheter somewhere into my torso, pass through my liver and into my thymus. Dr. Sands will then endeavor to reach the leak and glue/caulk/plug it. Once the leak has been remedied, the Dr. will back his way out.
Duration: 2 hours

So by the time most of you read this I will likely be done with part one and either getting ready to get back to my room or begining part two.

Needless to say, with my most recent experience this past week I am a little anxious about the entire procedure. However, I trust Dr. Gillinov.

There is no question that Wednesday will be tough physically on me and challenging both for my family and I mentally but I promise you all this...Each time I feel nervous, tired, discomfort or doubt, I will think of the posts, calls and emails you have sent my way over the last several weeks. If this is another required hurdle to get back home to friends and family of the caliber that I have, then I say:

BRING IT ON! What's a little needle and dye between your toes!? Catheter through my liver? Is that the best you can do? Another needle through my chest? Whatever!!! I may wince and I may cringe, but I will not stop here and this is excatly why I know that this too shall pass. Because although I cannot control everything that I will experience, I can control how I react to it. And in one form or another I will be here tomorrow night to share with you how things went.

Keep your lymph nodes crossed for me.

~Joe

11 days post-op

Play Along from Home.

2005-10-18T10:21:00.000-04:00

Good Morning, Everyone.

I've received my dietary options. In addition to the below I will need to take 1/2 an ounce of Medium Chain Trigliceride (MCT) oil per meal. Apparently it is very difficult to come by. The street value of this stuff is $30/ounce. So here are all of my options for all meals:

All Fruits and Vegetables
Skim Milk
Fish (grilled or broiled)
Baked Potato
Rice
Fat Free Sour Cream
Fat Free Cottage Cheese
Fat Free Salad Dressing

And that's it. I suggested Atkins as an alternative and after a great deal of consideration they decided against it.

So, please play along from home. Give me your creative suggestions of how to combine the above and I may just have it as my next meal.

~Joe

10 days post-op

PS. Damn it. I should have had that burger when I had the chance.

Maybe I’ll wake-up to discover I was abducted by aliens.

2005-10-17T21:46:00.000-04:00

The Bill Cosby show made its debut and Madonna’s, “Like a Virgin” was blaring on the radio. Leg warmers were being worn even when it wasn’t chilly and guys’ collars were turned up as the term “yuppies” made it into everyday lexicon.

The year was 1984. I was 13 and hadn’t even found out yet that I had a heart murmur. My hair was probably feathered (I had enough then to do that) and I likely had more than one pair of corduroy OP shorts.

1984 was also the most recent documented medical case that is similar to mine…and that occurred in Australia.

I’m going to run the numbers when I have the patience (pun not intended but noted), but suffice to say it sure isn’t common. Fluid around the heart after Mitral Valve repair is, in itself, a 1 in 1000 occurrence. Fluid containing triglycerides just doesn’t happen. Well, maybe once every twenty years. I guess I should buy a lottery ticket with those kind of numbers, huh?

So the surgeons, cardiologist and other specialists have been conferring with one another on the game plan and here is what comes next.

Starting immediately: No Salt, No Fat diet….Yummm! No fat, no salt hospital food! Whoo hoo!!!
Tuesday: Savor saltless Salteens. Read next couple of chapters in “Devil’s Teeth”
Wednesday: Undergo new test. Only three facilities in the US can perform this test. They will inject a dye into my lymph system via my foot and then watch with a ‘special’ monitor that allows them to track the dye. If the integrity of my lymph system has been compromised they will be able to see both where as well as how quickly it is leaking.
Thursday: If the test shows the leak to be in my thalamus as has been postulated, Dr. Gillinov will operate on me again through the same incision and try to find and repair the leak. At the same time they will drain the fluid again.
Friday: Recovering, Echocardiogram
Saturday: Recovering
Sunday: Recovering, Echocardiogram…..

I thought this was going to be a sprint…feels more like wind sprints.

I’m tired. Really tired, more emotionally than physically at this point but my support system is strong. Allison, Max, my Mom, Dad and Father-in-law, Norm are all here and they have been my beacon in the storm.

We’re going to make it and we’ll be stronger because of it.

~Joe

10 days post-op

PS. Maybe I’ll wake-up and just realize that I was abducted by aliens. http://www.alienscalpel.com

PPS. I’ve moved rooms again so my new number is 216-444-1348.

Sunday evening - change of scenery

2005-10-16T22:11:00.000-04:00

It's Sunday night and Joe is finally sleeping soundly in his new room. After a day of absolutely no doctor visits and very few nurse-related interactions they came by at 9pm to tell him he needed to move into another room (some explanation was given but it's just not worth going into it). So, my Dad and I (who, bless his heart, flew in from Denver today to be here to support all of us) hauled Joe's belongings down the hall to room #2. His new number is 216-444-1467 if you want to give him a buzz.

So as to not make your visit to the blog a complete disappointment, I'll fill you in on a few of today's highlights. Overall, it was a pretty uneventful day. We passed the time watching the Giant's lose and the Broncos win. My Dad tried to prepare Max that over time he would "bleed orange" in support of his Opa's favorite team. Max pooped shortly after in a nice shade of poppy -- Opa is taking that as a good sign. The highlight, however, was that Joe got a hallpass to go down to the main hospital lobby for an hour to spend time with Max for the first time in 6 days. Max could tell there was something familiar in the sound of this strange man's voice but underneath the blue baseball cap, behind the dark rimmed eyeglasses, and behind the Grizzly Adams beard...he didn't recognize his Daddy for a good 10 minutes. Once he did though, he was full of smiles and "coo's" which was the best medicine Joe could have been given today.

Another echo is scheduled for Monday morning so please continue to send Joe your good vibes. The goal is to see if the fluid has redeveloped, which we will hopefully know shortly after the procedure. If nothing has collected we are hoping to get walking papers out of this joint. If it has, we will talk about "next steps" with the team of surgeons and cardiologists.

We'll keep you all posted....

~Allison

9 days post-op

2005-10-16T13:12:00.000-04:00

Readmitted to the hospital Friday evening...

2005-10-14T23:15:00.000-04:00

Joe was unfortunately readmitted to the hospital this evening (details are on his audioblog, below). Luckily he's in his own room and not in ICU so that's the good news (he'd love to hear from you so give him a buzz at 216-444-1490) . Bad news is that he'll need to stick around for another 3-5 days for observation. Max and I are flying back early Saturday morning to be with him.

Thanks for continuing to keep us in your thoughts and prayers. It helps more than you'll ever know.

~Allison

2005-10-14T21:59:00.000-04:00

Take my breath away.

2005-10-14T02:00:00.000-04:00

Wouldn’t you just know it? Just when our hero is sitting in the ICU and bellying-up to some cold mushroom, onion and sausage pizza…that’s when it happens. That’s always the point in our story when things go terribly awry. The cute girl gets killed, the CSI agent realizes he arrested the wrong person, the Cardiologist’s patient unexpectantly begins to crash. I was smug sitting upright in my ICU bed, G-52, basking in the fact that none of the nurses in their careers had ever seen a patient ordering take out. Sure, I had my humiliating hospital gown on but I was down to six electrodes, one IV line in my right arm and one drainage tube coming out of the bottom left rib cage.

There were three doctors there. Dr. Solow* from India, Dr. Evans* from Ireland and Dr. Rodriquez* from Chile. Each had their respective accents and set the stage nicely. They consulted, disagreed with one-another and debated with me, their patient, just looking for some reassurance and leadership. They finally agreed on all the variables and got started.

The procedure sucked. How’s that for eloquence? Even while taking one Xanax, IV Morphine, IV Demerol and two Percoset…I kid you not. I had all this and then I had three injections of Lanacaine at the site of the insertion applied at three different levels under my left pectoral between my ribs. The next 30 minutes were the most painful I had since they pulled out the chest tube a couple of days earlier. But when they were done I slowly started feeling better and marveled as I watched almost a liter of milky blood-like fluid removed from my chest. I’ll never look at penne with pink vodka sauce the same way again. The tube was draining into what looked like one of those old fashioned IV bottles that Dr. Frankenstein likely used. It was all glass, clear and shaped up to the top where the tube was inserted into a quarter size top with a soft membrane covering the top. The bottle had a vacuum affect drawing out the fluid first spraying and then eventually slowing to a drip and then stopping. When that was done, twenty minutes later, they removed the bottle and replaced it with the labyrinth of tubes, fat syringes and this grenade shaped plastic bulb that had all of the air squeezed out of it. The fluid now had a lot of places they could go and the doctors set-up various switching of the “train tracks” so that when more fluid built up, it would automatically come out into either the syringe or the grenade. I didn’t care, the pain was gone. They left in the catheter/garden hose that was meant to continue draining the fluid over night. This was it! They’ll pull the tube out tomorrow AM after a clean Echo and let me go on my merry way. This calls for pizza! My parents had come in from the waiting area and were relieved to see that I was in good spirits. They stuck around until the pizza got there and then went to get a bite for their selves around 8:15pm. They’d be back in an hour but had no idea what they would witness upon their return.

I ate three slices, which is more food than I’ve managed to eat all week. I had no appetite until now. I was watching baseball even though the Yanks made an early exit, and now, all the drugs were making little fire-flies dart around my field of vision. And so, the next 45 minutes were wonderful in the “I am truly over the worst of this now” find of way. Man, was I ever wrong.

[Deep breathing exercise to expand lungs. Thanks for your patience.]

It was quiet in this ICU tonight. When I first came down into recovery after the surgery it was chaotic. 11 patients, the max, with various connections to man-made contraptions meant to thwart Darwinism. Beeps, buzzers and tones constantly going off in a cacophony of chaos mixed with the wails of the infirmed and the disturbingly disinterested guffaws of the ICU staff made for the perfect healing environment. But tonight was different. There were only 6 patients which meant less beeps, wails and nurses guffawing. The nurses were actually empathetic, sweet and focused primarily on their patient. One nurse per patient. Tonight mine was Sarah, a 24 year old RN whose father had worked at the Cleveland Clinic as a nurse for 20 years, was looking after me. She was tall and thin and had a black bob with streaks of red in the front. She was shy but competent and you would think that this is the norm at all medical institutions, but what I came to realize during my week here in Cleveland is that there is incompetence at all levels, but I’ll save this for another entry. Let’s focus on the topic dujor. Scary shit.

When we last left our hero he was appearing in the DVD release of Fantasia, feeling happy and looking forward to going home soon. It was 9:00PM and he was lounging in his polka dot gown and plying the nurses with left over pizza. All was well. Through the main ICU doors came in Ben a tall kind RN who I had met and spoken with a few times both in the ICU as well as the heart center floor. I trusted and liked Ben. With him was Dr. Sidow*. Dr. Sidow was apparently the head of something. I never met her before, she didn’t introduce herself or directly address me. I might as well have been the coffee machine in the cafeteria. This happens a lot at “teaching” hospitals. In any given day I would be “observed” by 8 different cardiologists or surgeons who were at various levels in their career, some I would only see once and only once. And I have gathered one of the unwritten parts of this game is to agree with the “right” doctors and disagree with the “wrong” ones. Make your name but be careful how you do it. So Ben wanted to show Dr. Sidow how the procedure went. Ben folds back my blanket and she focuses on chest. She looks for barely a moment and declares to no-one in particular, “Why did they do it like this? They left it in the wrong position!” Now who am I to disagree with her? I’m not a medical professional and she IS a Dr. and to be fair since the three doctors left, no other fluid drained. So she turned a couple of the train switching valves and pulled on the syringe and in the process sucked extracted another 50CCs of fluid. She made a couple of more changes with more fluid slowly dripping into the grenade. And with this I started feeling some slight pressure in my sternum. “There we are, now that’s the way it should be, there needs to be constant suction.” And with that she and Ben walked away as quickly as they arrived. But the pressure was increasing unnervingly quickly. She and Ben were at the ICU exit about 20 yards away and I yelled, “Dr.! Ben!” But my breadth was be drained along with the fluid and I barely got out my cry for help. They turned and left at which point Sarah popped her head in. “How ya doing, sweetie?” “Um, I’m not sure. This doctor and Ben came over pulled some fluid out and now I feel like I have a tremendous amount of pressure on the center of my chest. “OK, I can give you more some more Demerol and then I will go find Ben.” Sarah quickly administered the additional drugs and they did nothing. Sarah was off to find Ben and the Dr. and this is precisely when my parents walked in.

I watched the blood drain from their faces as they walked up. There I was lying on the bed with a bunch of bloody tubes and contraptions coming out of my rib cage. I’m gasping for air and lying flat on my dripping with sweat. “What’s happening!” asked my mom.” (In between gasps) “T H E Y A R E L O O K I N G F O R T H E D O C T O R.” At this point Sarah gets back and says she found Ben but not the doctor. “Ben said it is normal to feel some pressure and than I can give you some Morphine.” And she does, dropping 25ccs of morphine into my IV on top of everything else floating around my system. (In between more exaggerated gasps “SARAH, I NEED A DOCTOR, IT’S GETTING WORSE!” “We need to get a doctor here right away!” My Mother says. “OK, I’m paging the staff cardiologist who is on duty” exclaims Sarah. At the Clinic they use a pain scale to determine how uncomfortable you are. You are asked constantly, “On a scale of 1-10, with 1 being the no pain and 10 being unbearable, how would you rate your pain?” In a mere 15 minutes I went from a 3 to a 9. When my parents left me an hour ago I was laughing and eating pizza. Now they are watching me splayed on my bed, writhing and unable to speak. My head is whipping from left to right and back again. Sweat is flying off my brow across the room and I feel as if I am being suspended in mid air with a Neanderthal spear driven right through the center of my chest and out my back. Imagine the movie Alien and just prior to the juvenile alien hatching from their human hosts. This is the only other way I can explain the pain. My parents are now looking left and right for help and Sarah reappears and announces that Dr. Moula is on her way down from Cardiology. And now some of the other nurses are gathering around but not doing anything in particular. I don’t think they knew what else to do. It was like slowing down to watch an in process car accident.

Dr. Moula burst on to the scene through the doors and she was pushing an Echocardiogram machine. Dr. Moula was a thick woman with some sort of Eastern European accent. After she quickly introduced herself she sat down on the bed next to me and focused on nothing but me and Sarah. “What do you feel?” She asked with focused determination. I managed to blurt out where the pain was. My father looked pale and had his forehead in his hand…which is the same thing I do when overly stressed. They were helpless, watching their second son and if they were like me at this point, they actually started to wonder whether or not I was going to make it. But at moments like this, you cannot allow those thoughts to embed themselves. You need to focus with the doctor. Dr. Moula worked the echo around me chest and told me everything she was going to do before she did it. She firmly requested tools from Sarah who remained remarkably calm. “There’s your mitral valve, it looks good. Your left and right atriums look ok. Stay focused, Mr. Salvati, I’m going to take care of you.” And, I believed her. “Ahh, I see! The catheter, it is rubbing against two sections of the heart. This syringe shouldn’t have been left on drain…otherwise this happens. Sarah, page the Cardiologist who performed this, I want to get permission to pull this out. It doesn’t need to be in there!” “P U L L I T O U T!!!” I yelled. “OK, I’m going to pull it out a little to see if that reduces the pain.” And she did, and it didn’t. “Sarah, get me a double saline syringe wash!” She attached the double syringe and told me she is adding fluid to relieve some of the irritation. At this point the pain shot up throughout my right shoulder and arm. “OH, MY SHOULDER!” “That’s it,” she said firmly, I am not waiting for permission! OK, Mr. Salvati, I am going to pull this out and you are going to feel better.” Dr. Moula then started pulling out the tube which seemed to go on forever. Earlier, the cardiologist who was performing the procedure told me that the heart is about 3.5 inches from where we are entering. I can handle that, I thought to myself. Well, Dr.Moula was still pulling like a clown pulling out tied scarves from magic hat. In total the catheter was more than 3 FEET inside my chest. Why? I don’t know.” “There, how do you feel?” “I don’t know.” I huffed. And then I heaved and tried to gasp and then it happened. The pressure and pain started to slowly ease. “I think it is getting better.” I said. “You’re going to be OK. They shouldn’t have left this in. There isn’t any more fluid to drain and when that happens the heart walls start rubbing against each other with the catheter in the middle. The heart gets irritated and it starts looking for more fluid to drain.” And now, just five minutes after the 3 feet of garden hose is removed from my chest, I’m feeling better again. “I’m a 3 now.” “OK, Mr. Salvati, if you need anything else just page me, OK?” “Will I have to do this again?” “No, you shouldn’t have to. Just get some rest and you’ll be fine in the morning.” And with that Dr. Moula left with little fanfare. I thanked her profusely as she left and after my parents were sure I was better, they too left for the hotel for a relieved but likely broken sleep.

I sat on the edge of my bed leaning over the tray table, still sweating but breathing better and feeling less pain. For a few minutes I sat and didn’t move, just happy to be there.

And now, it is the following evening and I am sitting in my parent’s hotel room. I made it out. I have another echocardiogram tomorrow afternoon, and if we get through that we are on our way. I have no electrodes, needles or tubes in me right now, and I want to keep it that way. The appointment is scheduled for 3:40 Friday afternoon. Please send good thoughts then if you remember cause it’s time to go home.

* These names have been changed.

~Joe

8 days post-op

Wednesday update 7:30pm

2005-10-12T19:25:00.000-04:00

Hello once again.

I just talked to Joe's Mom and wanted to give everyone the update:

- The doctors drained the fluid this afternoon and there was enough of it to warrant continuing to do so overnight.
+ He had been having a difficult time breathing which has gotten better since the procedure so that's great news.
- He remains in the ICU and the doctors will reassess the situation tomorrow to give him a more solid understanding of how long he'll stay.
+ He's just ordered a large pizza and garlic cheese bread to his ICU bed so his appetite is finally coming back!

Although I can't call him, I did acquire the fax number for his ICU unit (216-445-5720) and am keeping him updated with all of your blog comments. Keep 'em coming!

Max and I are doing fine...trying to stay dry in this terrible weather we're having...and anxiously awaiting Daddy's return.

More to come tomorrow~

Allison

Speed bump on the road to recovery

2005-10-12T11:47:00.000-04:00

It’s Allison again…Joe tried to make an audio blog last night but for some reason it didn’t work. He wanted to personally fill you in on the latest details – which we hate to say -- are a bit of a speed bump on the road to recovery.

The last step in Joe’s preparation to leave the Clinic was a final echocardiogram (an ultrasound of his heart) to clear him to come home. They performed the “echo” yesterday afternoon and results showed swelling around the heart. They mentioned that this happens, although rarely, with their younger patients who tend to be in very good physical health. Go figure.

The cardiologist put him on steroids last night in an attempt to lessen the fluid accumulation without another, more invasive, procedure. We found out at 10:30am this morning that the steroids did not work and the fluid had actually increased overnight. Therefore, Joe will be readmitted to the ICU this afternoon so a team of cardiologists can insert a needle near his heart to drain this fluid.

The best case scenario: After 30 minutes, the fluid is completely drained and they can remove the tube. He would remain in ICU until tomorrow morning at which time he could go and spend a restful day and night in the hotel with his parents. Friday morning they would have him return for one final “echo” to confirm the fluid had not returned before being given his walking papers.

The worst case scenario: After 30 minutes, the fluid continues to drain and they are forced to leave the catheter in for at least 24 hours. Since this would take us to Thursday afternoon, they would keep him in ICU until Friday for observation at which time they would reassess the situation. They are (finally) setting his expectations that he could feasibly be in the hospital through the weekend in the event the fluid continues to develop.

So, the good news is that they detected the fluid now and not in another two weeks after he’s returned home. I’m sure the ramifications of this would be much worse and we are thankful he is still in the clinic to be taken care of.

The bad news is that the “echo” was administered yesterday just one hour after Max and I left Cleveland heading for home. We now must do what we can to support him from a thousand miles away which is really a bummer.

Joe remains strong, although disappointed, and continues to pull strength from all of the support from each of you. As you know, he will go back to not having a phone in ICU so the second best thing is for you to “comment” here on the blog and I will be sure he gets to read each and every one. I ask that you continue to send good, strong energy in Joe’s direction over the next few days and pray for a quick and painless procedure this afternoon.

Stay tuned…

Allison

5 days post-op

2005-10-11T00:44:00.000-04:00

2005-10-09T16:53:00.000-04:00

Please...just set our expectations!

2005-10-08T22:06:00.000-04:00

It's Sunday night at 10:13pm and I've just returned from visiting Joe for the 3rd and final time today. He was very much looking forward to entering today's blog and even has the mental frame of mind and voice to do so. Unfortunately, he still finds himself in the ICU which keeps him from having access to his laptop, cellphone and even his iPod. This is not because he isn't continuing to do great...quite the contrary, actually. It is merely because of a series of mistakes and misunderstandings that occurred after being led to believe he would be moved upstairs to the regular ward by early afternoon today.

I don't want to dwell or even give the impression that we aren't completely impressed with the clinic -- because we are. But we were told yesterday immediately following the surgery that he was doing so well he was considered a "fast tracker" -- someone who would be out of ICU sooner than the average patient. Of course, we all got excited and Joe was able to start looking forward to seeing Max.

At that point, Joe was assigned to a specific room "upstairs" that had a patient scheduled to be discharged today. Well, as it turns out, he wasn't released and instead of Joe being assigned to another room he is forced to wait until this gentleman is well enough to go home before he can leave ICU. This means that even though Joe is medically approved to get the catheter removed from his neck, the IV removed from his left arm and oh-so-ready to fall asleep in a place that does not echo with the sounds of heart monitoring machines beeping, the incessant alarms of blood pressure monitors sounding and his next door neighbor yelling at the top of her lungs during a sponge bath, that he must stay put until this guy is sent home.

Come 5:00pm, it was clear that Plan A was not underway and boy was Joe livid. It takes a lot to get him upset but this series of events meant that it would be another 18 hours before he could see his baby boy again -- and this was just not acceptable. And to think that, even though we would have all been disappointed, all of this could have been tolerable if they would have been able to set our expectations a bit better.

Needless to say, his Mom and I spoke privately with the head nurse who agreed to at least take out the IV and promised to reschedule the 3am X-ray for a more reasonable hour so he could get an uninterrupted night's sleep. At this point, we'll take what we can get. Luckily, Max was smart enough to make his Daddy a frame full of photos of his favorite pics of the two of them so Joe can gaze at these images as he presses the button on his hand-held morphine dispenser and slides into a drug-induced sleep.

But I digress.

The important thing here is that Joe is doing great. He sat in a chair today for a while (see the photo I sneakily took while the nurses weren't looking), was able to stomach some ice chips and cranberry juice and the biggest hurdle of all -- had a 3/4" thick tube removed from his chest that was 6" deep and causing him a great deal of discomfort. Around here, these are incredible milestones that we celebrated throughout the day.

So, we head into day #3 of our post-op journey and Joe promises to be back with you tomorrow to explain in his own words how his recovery is going. I fear my writing pales in comparison to his -- but I hope it gives you some insight to our day.

Thanks to all of you who have been trying to reach him at the hospital. He doesn't have a phone in ICU so try again Sunday and by then he will be upstairs and more than ready to take calls. But if he's asleep then you'll have to talk to me. Just setting your expectations.

~ Allison

It's OVER!

2005-10-07T17:04:00.000-04:00

Hi everyone...it's Allison. We posted an audioblog with the update of today's successful surgery so click on the link below to hear all of the details!!!!!!!!!!!!!!

2005-10-07T16:58:00.000-04:00

Wouldn't it be ironic?

2005-10-06T21:36:00.000-04:00

Wouldn’t it be ironic if the day I met the surgeon who was to operate on me that I broke his hand with an overzealous handshake? I’m no giant and don’t have a vice grip, but I would say I have a firm handshake. At 8:00 this morning I met Dr. Marc A. Gillinov (pictured above), my surgeon who will be leading tomorrow’s procedure. I stood up to shake his hand when he came into the room and I realized that I may have squeezed a little hard. Dr. Gillinov didn’t flinch or anything like that, but he gripped lightly…as he should. Right? I mean, his hands are his career and in this case, my well being. Perhaps he should be wearing Kevlar mittens when not operating. Shouldn’t that be a public service requirement considering his fantastic reputation? I’ll put my suggestion in the “How’s My Operating?” box outside the OR when they wheel me out. Dr. Gillinov allayed any remaining concerns I might have had coming into today.

This may sound completely irrelevant but regardless of my medical situation if I were to meet Dr. Gillinov (let’s call him Marc here) and The Hammer (Dr. Hammer, the Cardiologist/Bouncer) I think I’d like to have a beer with them. They’re nice, smart, funny guys. While being a nice person doesn’t make you a better surgeon, shouldn’t you have some sort of personal connection with the person who is going to operate on your heart? You are paying to have someone fix you but in the process it will cause you and your family physical and mental pain. I have a tattoo on my ankle. I got it six years ago while in San Francisco at the same tattoo parlor that Janis Joplin went to, but that too is irrelevant. The relevant point is that I paid someone (Rick) to leave an indelible mark on me and in the process inflict a great deal of pain over the course of an hour and a half…It was important that I got to know Rick at least a little so I went back a couple of times and chatted with him a fair amount more than most of his other clients. This too will leave an indelible mark both mentally and physically on me and so Marc, you and Rick are now in the same place in my brain. You’re both artists. Both have well trained eyes and hands and both are leaving me different than when I first met you. There are really only two differences; 1. Marc doesn’t have spider-web tattoos behind each of his ears. 2. Rick is slightly less educated.

So tomorrow AM is the big show, Everyone. Here is the rough schedule. A detailed MS Project will follow shortly.

4:15AM: Wake-up – wash with antibacterial soap provided, gargle with Listerine, dress
5:15AM: Check in
6:15AM: Pre-op preparation (2 hours of chest shaving)
7:15AM: Anesthesiologist gives me “something to take the edge off”
7:45AM: IV’s and ECG sensors placed on my body
8:00AM: General anesthesia administered through my IV
8:01AM: Vision will blur
8:02AM: Hearing will fade
8:05AM: Breathing tube inserted into my throat
8:15AM: Scalpel to skin
9:15AM: Heart stopped and bypass machine initiated
9:30AM: Mitral Valve accessed and repaired
11:30AM: Sew-up
12:00PM: Hearing will return slowly
12:15PM: Vision will return slowly
2:00PM: Breathing tube removed
2:15PM: Family reunion
3:30PM: Blog update
8:05PM: Tune to ESPN to watch Yankees slap around Anaheim

So that’s it! One more thank you to every one of the many friends and family who have reached out with tremendous support, prayers, calls and notes. I am truly blessed.

~Joe

0 days left

By your side, always.

2005-10-06T17:13:00.000-04:00

I want to share with Joe, and everyone reading his blog, how completely in love I am with this man. I could not be more proud of how strong and optimistic he has been through these past few months in anticipation of his surgery. Finding out he needed the operation, while I was in the 7th month of my pregnancy, was tough timing to say the least. He was able to focus on doing his research, picking the surgery date and then essentially putting the procedure aside as he concentrated on taking care of me and the preparing for the impending birth of our beautiful son.

All of you who know Joe realize how lucky you are to have him in your life. He is the smartest, funniest and most loyal friend anyone could have. I, however, have the special treat of being his wife and truly consider myself the luckiest girl in the world. There are a million things awaiting he and I…the least of which is watching Max grow into a little person…and I cannot wait to reach each new chapter with him by my side.

Thanks to all of you for your amazing support. It’s been such a rush to come back to our hotel each evening to read your comments and emails full of heartfelt encouragement and humorous cheer. Joe has been hearing from people he hasn’t been in touch with for over a decade -- proving the special network of people we are a part of as well as the power of the Web.

Joe, I will be the last person you see before your surgery and the first person by your side when you wake up. Tomorrow at this time we will have jumped the hurdle that has been facing us and we will have the immense pleasure of looking back and knowing we beat it – together. I love you more than you will ever know.

~ Al

It is all in a smile

2005-10-05T22:48:00.000-04:00

The wizards had good things to say.

Today I met no less than 17 different specialists and technicians employed by the Cleveland Clinic. My second to last appointment was with Dr. Hammer, my cardiologist. Dr. Hammer, who was a bartender and bouncer at a bar downtown during his college days gave me the green light to have the procedure through a minimally invasive technique which is a little more complicated and lengthy but has the benefit of a lot less trauma. Rib-splitters need not apply. (Hammer, the bouncer…are you serious?)

Take your thumb and place it at the base of your throat where your collarbones come together. Go on, this is an “interactive” exercise. The incisions will begin where your thumb is resting and move down the center of your chest approximately 4 inches which is about 4 ribs down from the top. At this spot, the incision will go another inch to the left portion of your chest in the form of a “J”. One inch of this rib will be broken/cut and removed. This is the space that Dr. Gillinov, your surgeon will be using to access your heart. The other members of the surgical team (about12 professionals) will then have a drink, smoke a Pall Mall and laugh at that birthmark you have that is eerily similar to Dick Cheney’s profile. Then, the team will stop your heart and circulate your blood through a machine that will keep it oxygenated. Did I mention the anesthesia? Yeah, you’ll have some of that. Dr. Gillinov will then do his magic, slicing into your heart’s outer wall until he reaches the Mitral Valve which connects your left atrium to your left ventricle. His repair technique will depend upon what he discovers when he is in there….but you won’t know a thing until you wake up groggily trying to remember where/who you are and why you have 7 tubes sticking out of various parts of your body. You’re in the ICU which is the last place someone who needs rest should be. But it is over, and just beginning at the same time.

The good news? You made it.

The really good news? Max started smiling today.

~Joe

1 days left

I'm off!

2005-10-05T07:56:00.000-04:00

I'm off to see the wizard(s). I'll report back when I'm able.

~Joe

2 days left

Ben

2005-10-04T21:25:00.000-04:00

Hello, Everyone.

We arrived in Cleveland this afternoon around 3:30. I knew Max would be a jet-setter, but I didn’t expect his first trip to be at 6 weeks, let alone to Cleveland. Our driver took us from the airport on the west side of Cleveland to the Clinic which is on the east side of the city. Ben, our driver who was about 65 years old and wore very comfortable shoes paired with a very uncomfortable suit said he moved here from Massachusetts 35 years ago. He pointed out the “sites” along the way. He showed us the theater where Tom Hanks got his start and then pointed out Jacobs’s field. With this I gave him my condolences on the Indians collapse. He was appreciative and then he said he was now rooting for the Red Sox. It was at this point that I realized that I need to conceal my fervor for the Yankees until AFTER my surgery. You never know who is rooting for whom.

Ben asked who wasn’t well. Allison and I looked at each other a little confused and then we realized that our hotel was on the Cleveland Clinic campus. Allison shared with Ben the upcoming events we had planned. Ben was quiet, pensive and then said, “I’ll be thinking about you on Friday morning.” We smiled and said, “thank you.” 5 minutes later we arrived at the hotel…5 very quiet minutes. After the bellhop took the bags and Allison and Max were making their way through the revolving door, Ben stepped up to me, shook my hand firmly and looked at me deeply with his steely grey eyes. “I’ll be praying for you, Joe.” “Thank you, Ben.” And then Ben closed his trunk and said, “I knew I was waiting for someone today, I just didn’t know who until now.” I looked back at him momentarily and said “I’m glad it was us, Ben.”

Tomorrow is the day of tests…a lot of tests. Here is my schedule for Wednesday:

8:30 AM Sign in at Desk F12, Floor 1
9:00 AM CatScan
10:00 AM Echocardiogram
11:00 AM Chest X-Ray
11:10 AM Blood work
12:45 PM Meeting with Dr. Hammer, Cardiologist to review tests and get clearance for surgery.
2:30 PM 1.5 hour expectation meeting with Cardiovascular nurses – Review from start to finish of what to expect from the first the moment I come in the day of the surgery until I come home.

I thought some of you might like to know a little more about the operation. And as many of us know, there is only so much you can learn from reading. So, how about a demonstration? How about a video of the surgery? The following link is an edited excerpt of the surgery I’ll be undergoing on Friday. The video is only 6 minutes but the operation can last up to 4 hours. It is edited down to include only the actual repair. WARNING: While not overtly disturbing, the video IS graphic. As an added bonus, the video you will watch is of a surgery Dr. Marc A. Gillinov performed. He is my surgeon. Put aside that rare prime rib for a moment and take a look.

http://www.clevelandclinic.org/heartcenter/pub/guide/disease/valve/mvrepair.htm

~Joe

3 days left

Allison

2005-10-04T00:48:00.000-04:00

So we’re off tomorrow; up, up and away to a city I never thought I would visit. It isn’t as if there is something wrong with Cleveland. Quite the contrary. Cleveland is one of those innocuous, nondescript cities. It isn’t Miami, LA or NY with the flash or fashion. It isn’t San Francisco, Chicago or New Orleans with their foodies or rich cultural tapestries. Now don’t get me wrong. Cleveland does have the Rock and Roll Hall of Fame. And they have the Browns, whom until recently I believed were named after the color. “Oh no, here comes the color brown. I’m so scared!” Actually they were named after their first coach, Paul Brown. Regardless, still a tough franchise to merchandise. But Cleveland may become one of my favorite cities once the good doctors do a little nip and tuck. Once there, I’ll give you my limited first hand thoughts. You’ll have to wait a day because Wednesday I have 8 hours of tests. Jeez…8 hours.

But this post is really meant to say thank you to the person from whom I’ve gathered the most strength during the last few months; my wonderful wife, Allison. Allison, thank you for your courage, resolve and support. This surgery is a minor speed bump for you and me. When we get back and I’m feeling up to it we will return to our normal life. The fine dining at Denny’s, the NASCAR races, the Swingers’ nights, building our lawn ornament collection and plenty of our favorite boxed white zinfandel.

~Joe

4 days left

This is when...

2005-10-02T20:16:00.000-04:00

It is when the sun sits low in the sky like a child’s giant orange sucker.
It is when the crickets have retreated to the after-grass while the shadows curl lazily around the maples.
It is when the air is crisp and has the faint smell of cedar embers from an early season fire.
It is when leaves rustle with the faintest of breezes, their edges just beginning to turn.
This is when the Red Sox suck most.

~Joe

5 days left

Dear Max

2005-10-01T19:14:00.000-04:00

Dear Max,

I was saving this for when you got older, but then I realized I had nothing to lose by sharing with you what I have so far. Mom doesn’t even know this but about a week before you were born I started writing a list of observations, beliefs and in some cases personal experiences that in time, you will either call upon as counsel, disagree with or experience for your self. The sources vary as much as the topics. Some of the below I’ve read, some have be shared with me by your Nono pictured with you and me above and some conclusions I’ve reached on my own. I’ll keep adding to the list, but this is what I have so far…

1. Family comes first.
2. Even though family comes first, they can be a pain in the butt.
3. You can pick your friends but you can’t pick your family…pick wisely.
4. Food is one of the pure, unadulterated joys in life.
5. Women love a man who can cook.
6. Always respect and love your mother. You’ll never understand how much she and I love you until you have your own children.
7. The Yankees, the Giants and the Knicks.
8. You’ll learn more about a person by listening to them for 1 minute then you will by talking to them for 10 minutes.
9. People love to hear themselves talk.
10. Learn as much about your heritage as you can; it is a tremendous part of what makes you you.
11. Buy a house/apartment/condo as soon as you are able.
12. It is OK to be scared.
13. It is OK to admit you are scared.
14. It is NOT OK to avoid your fears…they will only get worse if you do.
15. Whether you think you can or you can’t…you are right.
16. Sooner or later the other guy will blink.
17. Confidence can compensate for talent.
18. Arrogance can undermine talent.
19. Save early and often.
20. Don’t mortgage the future for a lifestyle today.
21. Things don’t bring you happiness.
22. You can’t be happy with someone else until you are happy with yourself.
23. Don’t take your health for granted.
24. Get a check-up every year.
25. With all people, no matter what the interaction, always exceed expectations.
26. You have to believe in yourself before others will believe in you.
27. Respect is earned.
28. First impressions are almost always right.
29. People judge you by what you wear and how you speak.
30. It is always better to be overdressed rather than underdressed.
31. Get in first, leave last.
32. Exercise is an excellent confidence booster.
33. Things are never as good or as bad as you think they are.
34. No matter what you do, do it with the highest degree of integrity.
35. The past is done and the future will come but today is malleable.
36. If you’re going to pull weeds, make sure you get the roots.
37. Don’t EVER put sugar in your tomato sauce.
38. Hold the door open for women.
39. Anyone older than you should always be addressed as Mr. or Mrs. unless they tell you otherwise.
40. Watch the ball not his feet.
41. If you haven’t failed at something you aren’t trying hard enough.
42. To make octopus tender you need to cook it with a wine cork.
43. Never burn bridges.
44. Learn to trust your instincts.
45. Never pay for the extended warranty.
46. The best time to buy a new car is in September.
47. Never buy a new car.
48. Yes, you can shave against your beard.
49. If someone overly flatters you without them really knowing you, don’t trust them.
50. Learn a second language, only Americans are too self absorbed to only know English.
51. Travel as much as you are able to.
52. Respect the customs of the country you are in.
53. If you don’t ask her, you’ll never know.
54. No, I didn’t have the internet growing up.
55. Yes, I know that makes me old.
56. Flirting can get you more than dates.
57. Don’t go to a gun fight with a knife.
58. Do what you love; the rest will take care of itself.
59. It is as important to know your weaknesses as your strengths.
60. Live for today but plan for tomorrow.
61. You will learn to love foie gras.
62. Be wiser than other people, but never let them know.
63. One of the symptoms of an approaching nervous breakdown is the belief that one's work is terribly important.

Love,

Dad

6 days left

Thinking yourself to greater health

2005-09-30T00:43:00.000-04:00

The more we learn about how the mind and body work the more we realize that there is a direct correlation between each of their states. The article below in this week's Newsweek discuss the connection between helathy hearts and positive mental attitudes and outlooks.

Mediation, Cognitive Therapy, Biofeedback are just some of the means of mending your heart with your mind. If that doesn't work, watch a couple of episodes of COPS and no matter what is going on in your life you'll know it could be worse.

************************
The Good Heart

Diet and exercise are not the whole secret to cardiovascular health. Mounting evidence suggests that your psychological outlook is just as important.

By Anne Underwood
Newsweek

Oct. 3, 2005 issue - You can call it the Northridge Effect, after the powerful earthquake that struck near Los Angeles at 4:30 on a January morning in 1994. Within an hour, and for the rest of the day, medics responding to people crushed or trapped inside buildings faced a second wave of deaths from heart attacks among people who had survived the tremor unscathed. In the months that followed, researchers at two universities examined coroners' records from Los Angeles County and found an astonishing jump in cardiovascular deaths, from 15.6 on an average day to 51 on the day of the quake itself. Most of these people turned out to have a history of coronary disease, or risk factors such as high blood pressure. But those who died were not involved in rescue efforts or trying to dig themselves out of the rubble. Why did they die? In the understated language of The New England Journal of Medicine, "emotional stress may precipitate cardiac events in people who are predisposed to such events." To put it simply, they were scared to death.

Folk medicine has always recognized that a sudden fright or bad news can be fatal. And the same Greek word, meaning "constriction," is the root of both "anger" and "angina." But the Northridge study—and others involving survivors of the 1981 Athens earthquake and the 1991 Iraqi Scud-missile attacks on Israel—helped fuel new research in what might be called psychocardiology, the profound connections between emotions and the cardiovascular system. For a long time, cardiologists resisted the idea that the heart, the sturdy wellspring of life, can be fatally deranged by a mental event. But it's not just sudden shocks like earthquakes that kill. Mounting evidence suggests that chronic emotional states such as stress, anxiety, hostility and depression take a far greater toll. "Fifty percent of people who have heart attacks do not have high cholesterol," points out Edward Suarez, associate professor of psychiatry and human behavior at Duke. The risk of psychological and social factors are almost as great as obesity, smoking and hypertension, the traditional medical markers for cardiovascular disease—which afflicts 70 million Americans and is the nation's No. 1 killer. Researchers are now starting to learn why. And a growing number of clinics are putting that insight to work in programs that tackle heart disease at one of its most unlikely sources: in the mind.

Our understanding has proceeded from the anecdotal to the epidemiological to the search for underlying mechanisms. As a critical-care nurse at Mad River Community Hospital in northern California in the 1980s, Debra Moser saw repeatedly how patients' attitudes seemed to affect the course of their heart disease. She was struck by one case involving a man in his 50s with an uncomplicated heart attack. He should have been out of the hospital within two or three days, but he lingered for six. "It was the first time I appreciated the power of negative thinking," says Moser. "He was very depressed, which is not unusual after a heart attack. But he obsessed over everything. He was hypervigilant about his case. It seemed to us that he worried himself into episodes of recurrent ischemia and chest pain." The chest pain wasn't just in his mind; tests showed reduced blood flow to the heart. Within a year, he suffered another heart attack and died.

Years later, Moser, now a professor of nursing at the University of Kentucky in Lexington, sought to quantify the effects she observed in that patient. At a meeting of the American Heart Association last fall she presented the results of a trial involving 536 heart-attack patients. She had measured their anxiety levels with a standard multiple-choice psychological test, and kept track of whether they had further complications—such as a second heart attack—while in the hospital. Those who scored the highest for anxiety on the psychological tests were four times more likely to suffer complications than those with the lowest scores. The lesson was clear: "Every day we take patients' blood pressure and listen to their heart," she says, "but we rarely do a systematic assessment of their psychological state, even though anxiety and depression are major risk factors."

In fact, doctors are finding that psychosocial factors pose far greater risks than they previously realized. Take depression. It at least doubles an otherwise healthy person's heart-attack risk, says Dr. Michael Frenneaux, professor of cardiovascular medicine at the University of Birmingham in England. And for people who have suffered a heart attack in the past, depression quadruples or even quintuples the risk of a second one. Hostility is an increasingly important risk factor, too. High hostility levels, as measured by a standard test, increased the chances of dying from heart disease by 29 percent in a large study of patients at Duke—and by more than 50 percent in people 60 and younger.

Even childhood trauma seems to have an impact on heart disease later in life. In a recent survey of more than 17,000 adults in San Diego, Dr. Maxia Dong at the Centers for Disease Control and Prevention found that heart-attack risk went up by 30 to 70 percent in people who reported adverse childhood experiences, such as physical, sexual or emotional abuse, domestic violence or having family members who abused drugs or alcohol. The one reassuring note: parental separation or divorce, alone among the 10 variables studied, had no statistical effect on the risk of future heart attacks.

And if stress in childhood can lead to heart disease, what about current stress-ors—longer work hours, threats of layoffs, collapsing pension funds? A study last year in The Lancet examined more than 11,000 heart-attack sufferers from 52 countries and found that in the year before their heart attacks, patients had been under significantly more strains—from work, family, financial troubles, depression and other causes—than some 13,000 healthy control subjects. "Each of these factors individually was associated with increased risk," says Dr. Salim Yusuf, professor of medicine at Canada's McMaster University and senior investigator on the study. "Together, they accounted for 30 percent of overall heart-attack risk." But people respond differently to high-pressure work situations. The key to whether it produces a coronary seems to be whether you have a sense of control over life, or live at the mercy of circumstances and superiors.

That was the experience of John O'Connell, a Rockford, Ill., laboratory manager who suffered his first heart attack in 1996, at the age of 56. In the two years before, his mother and two of his children had suffered serious illnesses, and his job had been changed in a reorganization. "My life seemed completely out of control," he says. "I had no idea where I would end up." He ended up on a gurney with a clot blocking his left anterior descending artery—the classic "widowmaker." Two months later he had triple bypass surgery. A second heart attack when he was 58 left his cardiologist shaking his head. There's nothing more we can do for you, doctors told him.
Why do these stressors have such a potent effect? On the most obvious level, emotional states affect behavior. Depressed, angry people are less likely to stick with diet and exercise regimens and are more likely to smoke. In one study, the most hostile subjects consumed 600 more daily calories than the least hostile.

But behavior is only the beginning. Negative emotions can have direct effects, too, by provoking the stress response of the classic fight-or-flight mechanism. The body releases stress hormones, such as cortisol and epinephrine (adrenaline). In response, blood pressure and blood-glucose levels increase, while chemical changes in the blood enhance the clotting reaction to help heal wounds. In the short term, these are survival mechanisms. But over the long haul, chronic high blood pressure and elevated glucose damage blood vessels.

Current research focuses on the effects of inflammation. "Hostile and depressed people respond to the world in a chemically different way," says Suarez. They interpret more situations as stressful, provoking the release of more stress hormones. The immune system responds by ratcheting up inflammation, which promotes heart disease at every stage—from plaque formation to heart attack. In a 2004 study, Suarez found that people who score high on tests for anger, hostility or depression have higher blood levels of an inflammatory marker called C-reactive protein, which is strongly correlated with cardiovascular risk. "In those who were positive for all three traits, CRP levels were twice as high," he says. Similarly, Amy Ferketich at Ohio State University tested the blood of depressed versus nondepressed heart-failure patients—and found the depressed had nearly twice the levels of an inflammatory compound called TNF-alpha.

Inflammation aside, it's now clear that adrenaline itself can wreak havoc on the heart. Dr. Ilan Wittstein of Johns Hopkins recently identified a condition called stress cardiomyopathy, or "broken-heart syndrome," which looks on the surface a lot like a heart attack. Wittstein's patients had all experienced major shocks—the sudden death of a parent or child, a car accident, an armed robbery, even a surprise birthday party—and their hearts' ability to pump had suddenly weakened. Their symptoms mimicked those of a heart attack. Even their EKGs read like those of heart-attack patients. Yet these people showed no sign of blockage in their coronary arteries and very little of the blood-chemistry markers of heart-tissue death. And unlike heart-attack survivors, who take months to recover, these folks were usually fine within 72 hours. What was going on in their chests? Although there's still debate about the exact mechanism, Wittstein notes that the patients' blood levels of adrenaline were 30 times higher than normal, four to five times higher even than in patients undergoing an actual heart attack. He suspects this huge dose of a powerful hormone disrupts the way heart cells take up calcium, which is essential for heart-muscle cells to contract.

If negative or stressful emotions contribute to heart disease, could their opposites represent an avenue for treatment or prevention? Consider what happened when University of Utah psychologist Timothy Smith assigned 82 college students a task designed to cause stress. They had to argue either for or against a controversial topic, like raising the Social Security retirement age. Their responses, they were told, would be graded for clarity, organization and persuasiveness—and would be recorded on videotape. But first, they were asked to write a few paragraphs about either a close, supportive friend or a casual acquaintance. During the subsequent filming, says Smith, "Heart rate and blood pressure went up a lot. But they went up less when people spent a minute or two beforehand thinking of someone who mattered to them." Over a period of years, the effects of having such supportive friends—and appreciating them—would be cumulative.

Optimism seems to have similar benefits, and may even help slow the progression of atherosclerosis. Psychologist Karen Matthews at the University of Pittsburgh observed 209 healthy, postmenopausal women for three years and found that the most optimistic ones had very little thickening in their carotid arteries—just 1 percent, versus as much as 6.5 percent in the pessimists.

Even laughter is starting to look like a cardiac elixir. In one recent study, Dr. Michael Miller of the University of Maryland School of Medicine found that watching a funny movie for 15 minutes relaxed people's peripheral arteries and increased blood flow for as long as 45 minutes afterward—comparable to the effect of aerobic exercise. He now recommends 15 minutes of hearty laughter daily—chuckling, giggling and smiling haven't been studied yet—as part of a healthy lifestyle.

It's natural to wonder whether other mood interventions—such as psychotherapy and drugs—would benefit heart patients. Research is limited, but there's not much evidence that traditional one-on-one psychotherapy is beneficial. At least one study has shown a possible protective effect from antidepressants—but only from the SSRIs, a category that includes Zoloft, Paxil and Prozac. Other mood-altering drugs had no effect on heart disease, which suggests the benefits from SSRIs were a biochemical side effect, unrelated to depression as such.

For now, the state of the art in psycho-cardiology is the program developed by Dr. Dean Ornish.
Ornish's lifestyle regimen is best known for the stringency of its ultra-low-fat diet, but it places equal emphasis on exercise and stress reduction through yoga, meditation and support groups. Mel Lefer of Penngrove, Calif., credits it with saving his life. Lefer suffered a massive heart attack in 1985, when he was 53 years old. Overweight, a heavy smoker and a workaholic who ran three restaurants, he had also lost a son in an accident a few years earlier and had separated from his wife. Lefer's own cardiologist told Ornish not to bother enrolling him in a yearlong study because he would never live that long. Twenty years later Lefer is not just alive, but lean and energetic. And so is O'Connell, who joined an Ornish-based program at the Swedish American Health System in Rockford, Ill., after his second heart attack. Seven years have gone by since the day his doctors told him his case was hopeless.

It's ironic that psychological interventions—painless, risk-free and low-cost—are typically the treatment of last resort for heart patients who have exhausted all the possibilities of angioplasty, stents, bypass surgery and medication. "My favorite patients are those who have been told, 'There's nothing more we can do for you'," says Dr. Harvey Zarren, who runs an Ornish-inspired program at North Shore Medical Center's Union Hospital in Lynn, Mass. When he meets a new patient, he concedes that the medical options have been exhausted. Then he adds, "But here's what you can do for yourself." For two-and-a-half hours, one night a week, Zarren leads his patients in meditation, followed by yoga, relaxation exercises and a support-group session in which patients share their frustrations and accomplishments. In fact, Zarren does think there's more that medical science can do for most heart patients, but it doesn't involve fancier stents or new drugs. It's the investment of time and caring. One of the first questions he asks patients is, "With whom do you share your feelings?"

Someday that may be the model for treating heart patients: an approach that integrates lifestyle changes with a new outlook on life. It will involve a collaboration among cardiologist, nutritionist, psychologist, the patient and his family, bound together by the realization that the heart does not beat in isolation, nor does the mind brood alone.

© 2005 Newsweek, Inc.

~Joe

7 days left

Dedication

2005-09-29T10:19:00.000-04:00

This post is dedicated to all those whom I consider close. You know who you are not just because you received an email from me addressing you as “Friends” but because of your reactions to my news.

I want you all to know that each email response, each hug, the shared stories of loved ones that went to the Cleveland Clinic or that had a similar surgery, the tears, the wishes for a speedy recovery, the philosophical conversations about faith and God, the hard lesson about what really matters, the jokes and levity, the look in your eyes, the offers to help whether it was to mow the lawn, bring over dinner, help Allison and Max or to pray; all of these things strengthen my resolve to go in fighting and come back stronger than ever.

Each and every one of you is amazing. I will take you all into the operating room with me and please know that I take great comfort in that.

~Joe

8 days left

What would you do?

2005-09-29T00:15:00.000-04:00

In 9 days you’ll be having heart surgery. Not the “your arteries are clogged with sausage gristle and you bleed beef gravy” heart surgery, but the “you were born with an imperfection that you can blame on all the generations preceding you” heart surgery. You’re in better than average shape but running a few miles would have you breathing heavy. You don’t smoke, are relatively young and exercise at least 3 times a week though you’d be the first to admit that your intensity at the gym often matches that of your high school janitor’s enthusiasm for his job. So here is the question:

Do you get the cheeseburger?

Do you get the medium rare Neiman Ranch 1/3 pound, juicy beef burger with four strips of hickory smoked bacon, Wisconsin cheddar melting unevenly around the edge? The one with thick Bermuda onions, a slice of heirloom tomato that’s a deeper red than the ketchup and resting on a fluffy white bun dusted with flour?

Or…

Do you get the side salad?

Do you order the tasteless iceberg lettuce with julienned carrots, wrinkled cucumber slices and cherry tomatoes from a warehouse in Jersey City, NJ? Light ‘Italian’ dressing (on the side, of course).

The burger certainly won’t help matters, but when you’re looking at something like heart surgery, shouldn’t you try and enjoy every minute (and meal) you have? Because when I wake up, after the operation, I’m going to have a tube down my throat, IVs in my arm, a tube draining blood coming out of my chest, a catheter between my legs and a hang-over that you can really only get from having your ribs split open, your heart and lungs stopped and having a bunch of strangers playing Yahtzee inside your chest cavity for 4 hours. I won’t even have the appetite for those stupid F’ing cups of Jell-O that are found no where else but hospitals.

I’ll have the burger.

Hey, Dad, I understand now. I understand why a couple of years ago when your blood sugar was through the roof and you couldn’t get control of your blood pressure and you had to lose weight you said, “What’s the point of living if you can’t live?” And I’m sorry I was on you about eating healthier and losing weight. Don’t get me wrong, I’m glad you did, but I can truly empathize now.

Yes, I’m sure, I’ll have the cheeseburger. Does that come with fries?

~Joe

9 days left

The Joy of Doing Nothing

2005-09-27T20:54:00.000-04:00

In today's world we rarely get the guilt free pass to do nothing. There are bills to pay, lawns to mow, emails to respond to, weddings to attend...laundry, dishes, org charts, authorizations, presentations, (insert other daily responsibilities here). But occassionally we intersect with times and life occurences which provide us with the opportunity to just say...."Sorry, the Dr. said I can't do that." What can I not do after the surgery?

No lifting anything more than 10 lbs -- The good--I'm pretty sure the remote control is under 10lbs, The bad--Max weighs 11 lbs.
No driving -- The good--No grocery shopping, The bad--The whole "Shut-In" thing doesn't suit me.
No lifting my arms over my head -- The good --I can put off moving all of our junk from the basement to the attic a little bit longer, The bad--Button-up shirts severely limit your wardrobe options.
No sleeping on my stomach -- The good-- it's supposed to be healthier for you, The bad--Obvioulsy it didn't prevent this situation...how good can it be?
No exercise beyond very short walks -- The good--I'll finally meet the neighbors I've been avoiding. The bad -- I'll finally meet the neighbors I've been avoiding.

There have been two other times in my life when I wasn't able to do anything...Both those times were following knee reconstructions. I must say, for someone who is driven to constantly be busy or productive it is initially difficult to let go. But in some ways it is liberating to know that I just won't physically be able to do anything. It takes away any guilt associated with thinking that I should be creating, producing or checking off 'to-dos'. So I plan on taking full advantage...

I'll sleep more (provided the pain meds work)
I won't wear a watch
I'll read some bad fiction rather than the latest business garbage put out by authors who have never been in the business world.
I'll linger in bed with Allison, Max and super dog, Maggie without saying, "I've got to go." Few things will top this.
I'll enjoy watching the leaves fall without the nagging feeling that I should be raking
I won't apologize for watching Red Dawn on SpikeTV
October is sports nirvana

~Joe

10 days left

The news.

2005-09-26T22:01:00.000-04:00

How many of you have life insurance? It is the only thing you ever buy and hope you never use. But, as a guy who was bringing his first child into the world in a few months I wanted to do what was right...just in case. To me, it was just one more task I had to do before Max made his debut; really no different than painting his room.

The initial meeting with the agent at Northwest Mutual made it sound like it was just a formality. "Here's how much money you 'll get in 3o years...blah, blah, blah." Well, eight vials of blood....green light. 50 line questionnaire...green light. One Dixie cup of urine...green light. Two physicals with 2 different doctors who spoke broken English...green light. EKG while lying on the couch in my living room...green light. So I'm thinking, "OK, we're done here. Where do I sign?" "Well, Mr. Salvati, since you have a heart murmur, we'd like you to take one more test." "OK, what do you need to poke, prod, draw or monitor?" "Its a simple test...and echocardiogram (echo). It takes about 15 minutes.

The next day I arrive 5 minutes early for my appointment. Dr. Green at the Stamford Heart Associates has me lie down on the wax paper covering the table. Now this is an aside, but can someone tell me, with as much as medicine and technology have advanced over the years...have we still not come up with a better solution for sanitation in a Dr. office than the paper covering the table?

So, I'm sitting there, shirt off and we start the exam. I'm lying down on my back and Dr. Green takes a the "wand" and after applying some lubricating gel he applies the wand to my chest. A picture comes up in black and white on the screen and the Dr. begins pointing out parts of my heart. So now I'm thinking, "Cool. Give me the rubber stamp, Doc so I get back to work." But then he pauses in one area for a moment. Then, he flips a switch on the machine. The black and white switch to vivid colors. "The color is where your blood is moving. The brighter the color the more volume and thrust of the blood." So I'm seeing the colors and glancing at my watch. "So everything looks ok, Dr.?"

"Well, there are a couple of things that concern me."

Note to self. If I ever become a doctor, remove the word "concern" from my bedside vocabulary.

"Can you be more specific, Dr. Green" I ask. "Well, if you look at the bright colors, the whites, orange and reds, that's your blood." "And?" "Its going the wrong direction in your heart. The blood is traveling from your left atrium through your mitral valve and into your left ventricle. The problem is that that blood is regurgitating back into the left atrium. The result is that your heart is working not working efficiently. You have severe mitral valve regurgitation, Mr. Salvati. Your heart is growing and if we don't address this soon you'll be at in increased risk for heart attack, stroke or (my personal favorite) SUDDEN DEATH.

How do you digest this?

Denial: The Dr. doesn't know what he's talking about.

Fear: Never thought I would be checking mortality rates at 34.

Anger: Why me?

Acceptance: OK, let's find the best place and the best surgeon.

11 days to surgery

What is mitral valve regurgitation?

2005-09-26T21:54:00.000-04:00

What is mitral valve regurgitation (MR)?
The mitral valve is similar to a one-way gate in the left side of your heart. Normally, the valve only allows blood to flow from the upper to lower heart chamber. But if the valve becomes diseased or injured so it cannot close properly, blood can leak backward (regurgitate) into the upper chamber (left atrium). This uncirculated blood causes the heart to work harder to pump the extra regurgitated blood (volume overload).
Mild cases of mitral valve regurgitation cause few problems, but more severe cases eventually weaken the heart and lead to heart failure.
See an illustration of the heart with its chambers and blood flow.

What causes mitral valve regurgitation?
There are two forms of mitral valve regurgitation: chronic and acute.
Chronic mitral valve regurgitation, the most common type, develops slowly over several years. The most common cause is mitral valve prolapse, in which the mitral valve flaps bulge the wrong way against the flow of blood, don't seal properly, and allow blood to leak backward. Other causes include heart failure, rheumatic fever, which can scar the heart valves, preventing them from closing completely; calcification of the tough ring of tissue (annulus) to which the mitral valve flaps are attached; congenital heart disease; and other heart problems.
Acute mitral valve regurgitation develops quickly and can be life-threatening. It occurs when the mitral valve or one of its supporting structures ruptures suddenly, creating an immediate overload of blood volume and blood pressure in the left side of the heart. Unlike chronic MR, your heart doesn't have time to compensate for the increased volume and pressure of blood. If not treated, acute MR can be fatal. Common causes of acute MR are heart attack and heart infection.

What are the symptoms?
If you have mild-to-moderate chronic mitral valve regurgitation, you may never develop symptoms. If you have moderate-to-severe disease, you may not have symptoms for decades. Depending on the severity of your mitral valve regurgitation and condition of your heart, you may not develop symptoms of heart failure until you're in your 40s, 50s, or 60s. Symptoms include shortness of breath with exertion, which later develops into shortness of breath at rest and at night; fatigue and weakness; and fluid buildup (edema) in the legs and feet.
With acute mitral valve regurgitation, you will be critically ill. Symptoms develop rapidly and include severe shortness of breath at rest, coughing, and rapid heartbeat.

How is mitral valve regurgitation diagnosed?
Most cases of mitral valve regurgitation are chronic and are diagnosed during a regular doctor's office visit. Acute mitral valve regurgitation is life-threatening and is usually diagnosed in the emergency room or while you are hospitalized.
Because you may not have symptoms with chronic mitral valve regurgitation, a specific type of heart murmur may be the first sign your doctor notices. Further tests will be needed to evaluate your heart and the severity of the regurgitation. Tests may include:
Various types of echocardiogram, a type of ultrasound to determine the severity of MR.
An electrocardiogram (EKG, ECG), to evaluate abnormal heart rhythms.
A chest X-ray, to evaluate heart size.
Cardiac catheterization, to determine the severity of MR and to look for coronary artery disease.
Tests for acute mitral valve regurgitation may include one or more of those used for chronic MR as well as a transesophageal echocardiogram, in which a device that sends sound waves is passed down the esophagus to take clearer images of the heart.

How is it treated?
Treatment for chronic mitral valve regurgitation includes monitoring your heart function and symptoms, preventing infection, and treating complications as they develop. Your doctor may prescribe medications, including: Vasodilators to help widen blood vessels and help the heart pump more efficiently.
Anticoagulants, such as warfarin (Coumadin), to prevent blood clots if you also have atrial fibrillation. Beta-blockers, or antiarrhythmics to control heart rate.
Antibiotics to prevent infections.

You may need surgery to repair or replace your mitral valve if the regurgitation becomes severe, if the size of your left ventricle (your heart's main pumping chamber) increases, or if your heart weakens. Mitral valve repair is preferred over replacement.
Treatment for acute mitral valve regurgitation occurs while you are hospitalized or in the emergency room. Because heart failure usually occurs with acute MR, vasodilators are given intravenously. Immediate surgery to repair or replace the valve will be necessary.