The Atlantic recently published an essay by a patient (also the daughter of a patient) whose experiences in today's health care system are as corrosive as those I've been pondering in The Mary Dell Show since Day One.
In fact, the author, Meghan O'Rourke, uses the same metaphor that I have for years for that health care system: "In the hospital, I always felt like Alice at the Mad Hatter's tea party: I had woken up in a world that seemed utterly logical to its inhabitants, but quite mad to me." Those words are nearly verbatim from one of my Down the Rabbit Hole episodes published long ago.
O'Rourke also compares the amount of blood she gives to the stores of a vampire, as I did after having phlebotomies (blood letting) as treatment for my polycythemia. And how many times have I compared "essential or idiopathic this or that" to doctor-speak for physicians' not knowing what the hell is going on? As, in fact, she does as well.
O'Rourke invokes the same phrase I often complain about when describing life Down the Rabbit Hole of today's medical system, one dispensed by that System like sugar pills: "patient-centered care." That, I'm afraid, is a stark euphemism for "the patient comes last."
And O'Rourke agrees: "For a system that invokes 'patient-centered care' as a mantra, modern medicine is startingly inattentive--at times actively indifferent--to patients' needs."
Well, isn't that exactly what I've been saying all along here? In fact, the article started to get to me--it was as if O'Rourke had pulled phrases right out of my own record, though I'm not accusing her of doing that. It's simply, I suppose, that another literate patient has been given the run-around I have, and the same allusions and phrases occurred to her.
Big surprise. All patients are being given that run-around. Nearly every patient in today's health care system will fall down that Rabbit Hole.
O'Rourke states that she has never felt her doctors "implied that I was crazy, or seeking attention, or any of the other things you sometimes hear from patients (especially female ones) who have sought a diagnosis for years on end."
I, on the other hand, have been that person for far too long. I do fall into the category of patient who has felt her doctors have subtly or not-so-subtly implied she was crazy and/or seeking attention, as I've discussed many times on this show.
Though O'Rourke has been lucky enough not to be thus insulted, she adds, "At the same time, they didn't believe anything was wrong enough to pursue; frequently they asked whether I was depressed before even doing a physical exam."
I don't know. In my world, that question implies that the patient is somewhat crazy, depending on one's definition of same, or at least psychologically disturbed.
O'Rourke happened to get her experiences published in a major magazine, while I'm steadfastly chronicling mine hoping that patients--and maybe a policymaker or health care provider--out there might find food for thought as all of us face a future in which health care will be more fundamental than ever for an aging population.
So hauntingly familiar was O'Rourke's article that I couldn't even finish reading it, though I will. Rather than making me feel vindicated or validated, reading what I did of the article only reinforced how dismal the situation is for all of us. I've had recent experiences that could be used as examples in O'Rourke's article, and so rather than read about her rotten experiences, I'll just add mine to the record.
If you've seen some of my earlier episodes, you'll know how air-deprived I feel. And not only feel, but the medical signs corroborate my sensation of breathlessness. In physicians' offices and in an ambulance my coworkers called for me one day when I couldn't fully breathe, signs such as low oxygen saturation by oximeter (that little clip they stick on your finger) and hypercapnia--too much carbon dioxide rather than oxygen in the blood--have verified my experience.
But though I've told my pulmonologist, my cardiologist, and now my brand-new PCP* (doctor, in this case) that I am severely debilitated by this inability to do much of anything before feeling utterly oxygen deprived, these physicians I've hired to care for me have been "startingly inattentive--at times actively indifferent," as O'Rouke puts it, to my needs.
In early 2012 when these symptoms first fully manifest--and they have been steady, for the most part, ever since, though I have good days and bad days--my Ear, Nose, and Throat specialist told me to buy an oximeter. This finger clips registers the percentage of oxygen in one's blood. That number should always be 100, or very close to it. If it's not, there's something wrong.
Well, mine is often 100, but almost as often it drops, going down as far as 79 on one occasion, and frequently in the 80s if I've been exerting myself.
Last time I saw my pulmonologist, I emphasized how debilitating it is to have such low levels of stamina. First of all, I have the medically verified hypersomnolence, which means I sleep far too much of my life away. On top of that, when I am awake, I physically can do very little before being out of breath and exhausted to the point of collapse.
Take last night, if I can call it that. With hypersomnolence, at least my particular strain of it, day and night has little meaning. Days of the week have little meaning. There's sleep time and awake time, and sleep time dominates. I tend to sleep all day and well into the night and manage a few awake hours in the middle of the night--not my preference, since all the stores and businesses are closed, and the sun is up during the day, which would make my life a lot more pleasant--but that's how my body rolls, so to speak.
So yesterday I draped on my CPAP (continuous air pressure machine that ensures (hopefully) enough air in my body while I sleep, at least) at 8 a.m., and I didn't get up again other than one time to pee until 1 a.m. the next day. That's 17 hours asleep, sports fans.
And when I woke up I felt as if my legs were weighed down with cement blocks. After the oh-so-strenuous exercise of getting up off the couch and walking into the kitchen to check on some beans I have cooking, I popped on my oximeter. My oxygen saturation dropped to 94. It went back up, as it does when I rest, but it hovered around 97 or so. Just for walking across the room. Try walking several blocks or up a flight of steep stairs.
I've complained about this to my pulmonologist, so two visits ago he ordered the appropriate test: a six-minute walk test. His technician walked with me up and down the hallway for six minutes. I started to feel tired toward the end. Now, the weird thing about this oxygen problem is that my body's reaction differs depending on a number of factors: How hot is it? (I have about zero heat tolerance). How much activity have I already had, i.e., how much energy have I already expended to that point? How do I feel in general--do I have a cold, for instance?
Another thing I've noticed is that my breathlessness and exhaustion tend to hit after I've done some activity and rarely during, but before I've fully rested.
This phenomonon was the first clue that led me to the idea of myotonic dystrophy--and I've had my DNA test but don't yet know the results--because the myotonia (muscle tightness) results in the muscles' working too hard, and it would make sense to me that the effects would occur after the muscles had been tight for a while. I've also read that exercise will release the muscle tension, but one must get past the period of tightness to get there. I don't exercise anymore; I don't feel well enough to do it--unless one considers sex exercise, and that's happening less and less.
Once I got my diagnosis of demyelinating disease, a neuromuscular issue, the myotonic dystrophy made even more sense, and it can result in shortness of breath due to a number of factors. But that's an aside. Until I get the DNA results, I won't know.
But I do know how my body feels when it's deoxygenated by now, and, based on months of experience, I told the technician my oxygen would probably register just fine right after the test, but that if we could wait a minute or two and take it again, it would drop.
"That's not how the test is done," she told me.
And so, sure enough, my blood saturation level registered 100 percent per her oximeter, and that number was put in my chart, and she walked away. I sat down and popped on my own oximeter, and within a couple of minutes the number had dropped to 82.
But that didn't matter to anyone but me.
When I again complained the next time I saw the pulmonogist, he said, "Follow me." He took me to a flight of stairs--I had said I had trouble walking up stairs without being out of breath. He told me to walk up the short flight of gentle stairs, and then the technician took my levels, which were, of course, fine.
Two big problems with that test: The stairs at my office, which is an old Victorian building, are long and steep, not the hop, skip, and jump stairs of his more modern office. Second, his air conditioning was blasting an Arctic 40 degrees or so--and the cool air helps me breathe. (Similar to MS, the most well-known demyelinating disease but one I do not have, according to my neurologist, I am very heat intolerant.)
Oh, and a third problem: I'd just woken up after a night on my CPAP, gotten into my car, and driven to his office. Although I can be deoxygenated after a night on the CPAP, as is true today, sometimes I do wake rested and feel good. Again, this is similar to MS sufferers, whose symptoms wax and wane due to a variety of factors. That day happened to be one of my good days.
"I'm telling you, doctor, this happens all the time," I said, despairing.
"If it doesn't happen here, it doesn't happen at all," was his compassionate response.
But my newest physician's response to this information a couple of days ago hurt--and angered me--even more. I didn't really take Dr. P's (my pulmonologist's) words to heart; I understand that test results are test results, but that's not the last of it by far. He will be hearing about my near-collapse in Chicago a month ago and my continued lack of energy and oxygen, and I'm going to insist something more be done. Either that or I'll run around his building (if I can manage to run) a few times and hope I get in to see him soon enough afterwards that HIS oximeter will demonstrate what's been going on.
As I was saying, the other day was my second appointment with my brand-new family physician. He'd come highly recommended to me, and even he said he was very good at getting to the bottom of mysterious symptoms. And so the other day I complained to him about this, my worst symptom after the hypersomnolence, and told him that the pulmonologist's tests hadn't really recreated the conditions under which I feel out of breath and that the lack of oxygen is regularly verified by the oximeter another doctor had told me to buy after a low reading in his office.
And what did he say?
"Maybe your oximeter is broken."
No, Dr. G, right now my heart is broken. Because I can't get anyone to hear me. I can't get anyone to believe me. I can't breathe efficiently. I can't do things I should be able to do as a relatively slim 55-year-old woman.
I can't get the right tests under the right conditions that will prove what I've lived with every day since these problems first began in earnest in December 2012, prompting me to visit all these specialists who so far have not pinpointed why this is happening and, in fact, don't even seem to care.
"Maybe your oximeter is broken."
That's the latest wisdom I get from the medical community. Oh, and I guess my feeling of being out of breath is just in my mind, triggered by my "broken" oximeter's reading.
No, Dr. G, it goes the other way: I feel out of breath, and THEN I put the damned oximeter on my finger. I don't wear it all the time looking for the numbers go down; I put it on when my symptoms return as I was told to do by my ENT. Of course, I now know there's no point in reporting to the Emergency Department as he'd advised me to do when it goes to 85; the ED is not the place to figure out this problem--all the standard tests have been done and done again, and they do not show what it is wrong.
But based on my word--and even results of objective tests thus far--they don't care enough to do that, and so I live like this, day after day, month after month, and, now, year after year. That stinks.
When I mentioned to Dr. G that I've had polycythemia--a sign that the body's cells are not receiving enough oxygen--since 2010 that has not yet been explained, despite investigation by Hopkins, he checked my hematocrit, which was over 46 in my last blood test, and pronounced the problem "under control."
That's old school, I'm afraid. Polycythemia experts at Hopkins state that a woman's hematocrit should be below 46, a number far lower than believed in "the old days."
The problem exists. My little problem, my little need to breathe.
And a bigger problem exists: a health care system that doesn't care enough to find out why my body is deprived of oxygen. The problem is a health care system full of practitioners who don't believe what their patients are telling them about their own bodies.
Yes, fakers and "conversion" and Munchausen cases exist, but they are the exceptions, not the rule, I firmly believe. Most patients just want to get better. I know I do. I'm sick to death (pun intended) of doctors and tests and hospitals and would be happy to never see another one. If I could breathe properly, that is.
Aren't they supposed to help me with that?
I'll try to read the Atlantic article again soon and add some of the ways it corresponds to my experience. But right now, despite my efforts to stay upbeat and do productive work in the few hours per day I'm awake, I'm so discouraged I can't read another word about what I already live every day.
The situation is dire. We patients do count. We need to make ourselves heard.
And, hey, Atlantic, I'll be happy to write another article or twelve on this topic for you!
______________________
Med-Speak Glossary:
PCP = Primary Care Provider - This could be a physician, a physician's assistant, or a nurse practitioner. Neither physician's assistants or nurse practitioners have medical degrees, but they are often employed to "extend" the number of physicians available for (generally) routine cases.
In fact, the author, Meghan O'Rourke, uses the same metaphor that I have for years for that health care system: "In the hospital, I always felt like Alice at the Mad Hatter's tea party: I had woken up in a world that seemed utterly logical to its inhabitants, but quite mad to me." Those words are nearly verbatim from one of my Down the Rabbit Hole episodes published long ago.
 |
| Original illustration of the Mad Hatter's Tea Party in Alice's Adventures in Wonderland |
O'Rourke invokes the same phrase I often complain about when describing life Down the Rabbit Hole of today's medical system, one dispensed by that System like sugar pills: "patient-centered care." That, I'm afraid, is a stark euphemism for "the patient comes last."
And O'Rourke agrees: "For a system that invokes 'patient-centered care' as a mantra, modern medicine is startingly inattentive--at times actively indifferent--to patients' needs."
Well, isn't that exactly what I've been saying all along here? In fact, the article started to get to me--it was as if O'Rourke had pulled phrases right out of my own record, though I'm not accusing her of doing that. It's simply, I suppose, that another literate patient has been given the run-around I have, and the same allusions and phrases occurred to her.
Big surprise. All patients are being given that run-around. Nearly every patient in today's health care system will fall down that Rabbit Hole.
O'Rourke states that she has never felt her doctors "implied that I was crazy, or seeking attention, or any of the other things you sometimes hear from patients (especially female ones) who have sought a diagnosis for years on end."
I, on the other hand, have been that person for far too long. I do fall into the category of patient who has felt her doctors have subtly or not-so-subtly implied she was crazy and/or seeking attention, as I've discussed many times on this show.
Though O'Rourke has been lucky enough not to be thus insulted, she adds, "At the same time, they didn't believe anything was wrong enough to pursue; frequently they asked whether I was depressed before even doing a physical exam."
I don't know. In my world, that question implies that the patient is somewhat crazy, depending on one's definition of same, or at least psychologically disturbed.
O'Rourke happened to get her experiences published in a major magazine, while I'm steadfastly chronicling mine hoping that patients--and maybe a policymaker or health care provider--out there might find food for thought as all of us face a future in which health care will be more fundamental than ever for an aging population.
So hauntingly familiar was O'Rourke's article that I couldn't even finish reading it, though I will. Rather than making me feel vindicated or validated, reading what I did of the article only reinforced how dismal the situation is for all of us. I've had recent experiences that could be used as examples in O'Rourke's article, and so rather than read about her rotten experiences, I'll just add mine to the record.
If you've seen some of my earlier episodes, you'll know how air-deprived I feel. And not only feel, but the medical signs corroborate my sensation of breathlessness. In physicians' offices and in an ambulance my coworkers called for me one day when I couldn't fully breathe, signs such as low oxygen saturation by oximeter (that little clip they stick on your finger) and hypercapnia--too much carbon dioxide rather than oxygen in the blood--have verified my experience.
But though I've told my pulmonologist, my cardiologist, and now my brand-new PCP* (doctor, in this case) that I am severely debilitated by this inability to do much of anything before feeling utterly oxygen deprived, these physicians I've hired to care for me have been "startingly inattentive--at times actively indifferent," as O'Rouke puts it, to my needs.
In early 2012 when these symptoms first fully manifest--and they have been steady, for the most part, ever since, though I have good days and bad days--my Ear, Nose, and Throat specialist told me to buy an oximeter. This finger clips registers the percentage of oxygen in one's blood. That number should always be 100, or very close to it. If it's not, there's something wrong.
Well, mine is often 100, but almost as often it drops, going down as far as 79 on one occasion, and frequently in the 80s if I've been exerting myself.
Last time I saw my pulmonologist, I emphasized how debilitating it is to have such low levels of stamina. First of all, I have the medically verified hypersomnolence, which means I sleep far too much of my life away. On top of that, when I am awake, I physically can do very little before being out of breath and exhausted to the point of collapse.
Take last night, if I can call it that. With hypersomnolence, at least my particular strain of it, day and night has little meaning. Days of the week have little meaning. There's sleep time and awake time, and sleep time dominates. I tend to sleep all day and well into the night and manage a few awake hours in the middle of the night--not my preference, since all the stores and businesses are closed, and the sun is up during the day, which would make my life a lot more pleasant--but that's how my body rolls, so to speak.
So yesterday I draped on my CPAP (continuous air pressure machine that ensures (hopefully) enough air in my body while I sleep, at least) at 8 a.m., and I didn't get up again other than one time to pee until 1 a.m. the next day. That's 17 hours asleep, sports fans.
And when I woke up I felt as if my legs were weighed down with cement blocks. After the oh-so-strenuous exercise of getting up off the couch and walking into the kitchen to check on some beans I have cooking, I popped on my oximeter. My oxygen saturation dropped to 94. It went back up, as it does when I rest, but it hovered around 97 or so. Just for walking across the room. Try walking several blocks or up a flight of steep stairs.
I've complained about this to my pulmonologist, so two visits ago he ordered the appropriate test: a six-minute walk test. His technician walked with me up and down the hallway for six minutes. I started to feel tired toward the end. Now, the weird thing about this oxygen problem is that my body's reaction differs depending on a number of factors: How hot is it? (I have about zero heat tolerance). How much activity have I already had, i.e., how much energy have I already expended to that point? How do I feel in general--do I have a cold, for instance?
Another thing I've noticed is that my breathlessness and exhaustion tend to hit after I've done some activity and rarely during, but before I've fully rested.
This phenomonon was the first clue that led me to the idea of myotonic dystrophy--and I've had my DNA test but don't yet know the results--because the myotonia (muscle tightness) results in the muscles' working too hard, and it would make sense to me that the effects would occur after the muscles had been tight for a while. I've also read that exercise will release the muscle tension, but one must get past the period of tightness to get there. I don't exercise anymore; I don't feel well enough to do it--unless one considers sex exercise, and that's happening less and less.
Once I got my diagnosis of demyelinating disease, a neuromuscular issue, the myotonic dystrophy made even more sense, and it can result in shortness of breath due to a number of factors. But that's an aside. Until I get the DNA results, I won't know.
But I do know how my body feels when it's deoxygenated by now, and, based on months of experience, I told the technician my oxygen would probably register just fine right after the test, but that if we could wait a minute or two and take it again, it would drop.
"That's not how the test is done," she told me.
And so, sure enough, my blood saturation level registered 100 percent per her oximeter, and that number was put in my chart, and she walked away. I sat down and popped on my own oximeter, and within a couple of minutes the number had dropped to 82.
But that didn't matter to anyone but me.
When I again complained the next time I saw the pulmonogist, he said, "Follow me." He took me to a flight of stairs--I had said I had trouble walking up stairs without being out of breath. He told me to walk up the short flight of gentle stairs, and then the technician took my levels, which were, of course, fine.
Two big problems with that test: The stairs at my office, which is an old Victorian building, are long and steep, not the hop, skip, and jump stairs of his more modern office. Second, his air conditioning was blasting an Arctic 40 degrees or so--and the cool air helps me breathe. (Similar to MS, the most well-known demyelinating disease but one I do not have, according to my neurologist, I am very heat intolerant.)
Oh, and a third problem: I'd just woken up after a night on my CPAP, gotten into my car, and driven to his office. Although I can be deoxygenated after a night on the CPAP, as is true today, sometimes I do wake rested and feel good. Again, this is similar to MS sufferers, whose symptoms wax and wane due to a variety of factors. That day happened to be one of my good days.
"I'm telling you, doctor, this happens all the time," I said, despairing.
"If it doesn't happen here, it doesn't happen at all," was his compassionate response.
But my newest physician's response to this information a couple of days ago hurt--and angered me--even more. I didn't really take Dr. P's (my pulmonologist's) words to heart; I understand that test results are test results, but that's not the last of it by far. He will be hearing about my near-collapse in Chicago a month ago and my continued lack of energy and oxygen, and I'm going to insist something more be done. Either that or I'll run around his building (if I can manage to run) a few times and hope I get in to see him soon enough afterwards that HIS oximeter will demonstrate what's been going on.
As I was saying, the other day was my second appointment with my brand-new family physician. He'd come highly recommended to me, and even he said he was very good at getting to the bottom of mysterious symptoms. And so the other day I complained to him about this, my worst symptom after the hypersomnolence, and told him that the pulmonologist's tests hadn't really recreated the conditions under which I feel out of breath and that the lack of oxygen is regularly verified by the oximeter another doctor had told me to buy after a low reading in his office.
And what did he say?
"Maybe your oximeter is broken."
No, Dr. G, right now my heart is broken. Because I can't get anyone to hear me. I can't get anyone to believe me. I can't breathe efficiently. I can't do things I should be able to do as a relatively slim 55-year-old woman.
I can't get the right tests under the right conditions that will prove what I've lived with every day since these problems first began in earnest in December 2012, prompting me to visit all these specialists who so far have not pinpointed why this is happening and, in fact, don't even seem to care.
"Maybe your oximeter is broken."
That's the latest wisdom I get from the medical community. Oh, and I guess my feeling of being out of breath is just in my mind, triggered by my "broken" oximeter's reading.
No, Dr. G, it goes the other way: I feel out of breath, and THEN I put the damned oximeter on my finger. I don't wear it all the time looking for the numbers go down; I put it on when my symptoms return as I was told to do by my ENT. Of course, I now know there's no point in reporting to the Emergency Department as he'd advised me to do when it goes to 85; the ED is not the place to figure out this problem--all the standard tests have been done and done again, and they do not show what it is wrong.
But based on my word--and even results of objective tests thus far--they don't care enough to do that, and so I live like this, day after day, month after month, and, now, year after year. That stinks.
When I mentioned to Dr. G that I've had polycythemia--a sign that the body's cells are not receiving enough oxygen--since 2010 that has not yet been explained, despite investigation by Hopkins, he checked my hematocrit, which was over 46 in my last blood test, and pronounced the problem "under control."
That's old school, I'm afraid. Polycythemia experts at Hopkins state that a woman's hematocrit should be below 46, a number far lower than believed in "the old days."
The problem exists. My little problem, my little need to breathe.
And a bigger problem exists: a health care system that doesn't care enough to find out why my body is deprived of oxygen. The problem is a health care system full of practitioners who don't believe what their patients are telling them about their own bodies.
Yes, fakers and "conversion" and Munchausen cases exist, but they are the exceptions, not the rule, I firmly believe. Most patients just want to get better. I know I do. I'm sick to death (pun intended) of doctors and tests and hospitals and would be happy to never see another one. If I could breathe properly, that is.
Aren't they supposed to help me with that?
I'll try to read the Atlantic article again soon and add some of the ways it corresponds to my experience. But right now, despite my efforts to stay upbeat and do productive work in the few hours per day I'm awake, I'm so discouraged I can't read another word about what I already live every day.
The situation is dire. We patients do count. We need to make ourselves heard.
And, hey, Atlantic, I'll be happy to write another article or twelve on this topic for you!
______________________
Med-Speak Glossary:
PCP = Primary Care Provider - This could be a physician, a physician's assistant, or a nurse practitioner. Neither physician's assistants or nurse practitioners have medical degrees, but they are often employed to "extend" the number of physicians available for (generally) routine cases.
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