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.
Tuesday, June 09, 2009
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
Subscribe to:
Posts (Atom)
