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.
Thursday, September 23, 2010
Monday, September 13, 2010
Something is Different
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…...
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…...
Thursday, September 02, 2010
Who has a stroke in their 30’s? I do.
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.
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.
Tuesday, June 09, 2009
Starting on the road towards Patient Advocacy
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.
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.
Monday, October 06, 2008
3 Year Anniversary
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
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
Monday, August 11, 2008
Thoughts to the Kroll Family.
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
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
Tuesday, July 29, 2008
A Tenuous Relationship
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
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
Sunday, April 13, 2008
Spam with a Heart
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
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
Wednesday, February 06, 2008
The Return
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
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
Sunday, November 06, 2005
Direct TV
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
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
Thursday, November 03, 2005
2 weeks
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
Wednesday, November 02, 2005
Happy belated Halloween...
from Maggie the Super Bulldog and her trusty side kick, Max the Ear of Corn.
Monday, October 31, 2005
Dedication
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
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
Thursday, October 27, 2005
Scatching the Itch
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
Wednesday, October 26, 2005
Tomorrow
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 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 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.
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.
Tuesday, October 25, 2005
Monday, October 24, 2005
Getting sick/hurt strategically.
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
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
Sunday, October 23, 2005
These are the Days of our lives in General Hospital.
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
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
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