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bunrabS and I are coming down with colds, courtesy of our friend Cindy-the-Librarian, who caught one on her airline trip to visit us, and whom we have just bundled off to the airport for her return to Austin. Generally speaking, I can cope with colds, except that I'm not allowed to take Sudafed or generic equivalents thereof, because of my heart. So if my nose gets really stuffed, my only resorts are Thai food and steamy hot showers.
Speaking of heart, unfortunately the echocardiogram shows that my ejection fraction has gone back down again. The fix for this may be as simple as changing the programming on my pacemaker again, or may require a hospital stay of a couple of days to finally get the third lead implanted. For those going "huh?" I have idiopathic dilated cardiomypathy (a fancy way of saying my heart is enlarged with no discernable cause or reason) resulting in congestive heart failure, which isn't quite as awful as it sounds but is bad enough. The ejection fraction measures how much blood the heart pumps out at each beat - what percentage of the blood that's in it does it eject with each squeeze. Normal ejection fraction is 60%. When I first got diagnosed, mine was 15%; this past spring, it had improved all the way up to 25%, but the latest echo shows it's back down in the 15-20% range again. So, my heart is pumping about 1/4, maybe as much as 1/3, the amount of blood a heart should. There are several reasons this is a problem. One is that it means that only about 1/4-1/3 the normal amount of oxygen is being carried to my muscles by the bloodstream. So I get tired really easily, and am rather weak.
Next reason is that the bloodstream is normally what clears fluid out of the lungs; when the heart ain't doing that job well, fluid can build up in the lungs and seriously limit one's capacity to take in air at all. (This is the "congestive" part of congestive heart failure - the lungs becoming congested.) Think of how poorly people breathe when they have pneumonia - that's what it's like. Fluid can also build up in other parts of the body - edema, this is called, and it happens mostly in places like the ankles. While puffy ankles aren't in and of themselves any big deal - I've never depended on the skinniness of my ankles to get me a job or a mate - they can signal increases in blood pressure.
Another reason CHF is a real nuisance is that changes in the size of the heart and thickness of the heart walls affect how electrical impulses can carry through the heart, controlling the beating. People with any sort of cardiomyopathy are thus far more at risk for abnormal heart rhythms - fibrillations, racing heartbeat, irregular heartbeat, that sort of thing. The sort of thing that can cause heart attacks among other nasty effects. That's where having the defibrillator implanted comes in. The defibrillator is known more formally as an Implanted Cardioversion Device or Implanted Cardiac Defibrillator, depending on whom you ask what ICD stands for, and is commonly referred to by its users as a pacemaker simply because that's a term the general public can better understand. One can get a pacemaker that isn't a defibrillator; they are separate things - but most ICDs include a pacemaker as well, and most people are more likely to have some recognition that one is referring to heart problems if a person says "pacemaker" than if they say ICD. This includes airport security people - a LOT easier to say "I've got a pacemaker" and expect them to know the drill, than to try and explain ICD. So, although what I have is primarily there because it's an ICD, it will hereinafter usually be referred to as a pacemaker.
Yet another problem with having CHF is the medicines used to treat it. While they do improve my health and quality of life, they have their own little quirks and side effects. The diuretics probably are the biggest noticeable help, clearing the fluid out of my lungs. However, the digoxin (a digitalis derivative) helps regulate heart rhythm; the beta-blocker (which actually blocks both alpha and beta adrenaline) helps keep stress from triggering adrenaline surges which could trigger an electrical event (see fibrillation, arrhythmia, etc., above), and keeps my heart from trying to beat harder and winding up enlarging even more; the sartan, in my case Diovan, keeps blood pressure even; the statin, in my case Lipitor, is originally developed to lower cholesterol* - has beneficial effects for heart failure and heart attack patients that aren't fully understood, even independent of the cholesterol-lowering effects, and there's a couple other drugs as well. Various side effects of these reduce my tolerance for heat, sunlight, aerobic exercise normally designed to raise the heart rate, alcohol, etc., etc.
Anyway, I have to avoid stress, and lifting anything heavy, and I find it pret'near impossible to walk uphill or upstairs more than a couple of feet before having to stop and rest. When I first got diagnosed, because of the amount of fluid in my lungs, I was having trouble even walking on level surfaces - trying to cross the street, I'd have to stop and pant for breath on the center stripe, and then lean against a lampost before my legs collapsed under me after I finally made it to the other curb. I sleep about 12 hours out of 24, which makes it hard to get stuff done, and if I try to do too much, you can throw in another 2 or 3 hours worth of nap needed. So I can't work full time. I can work for about 3 hours before I'd need a nap, for most kinds of work. That's why being adjunct faculty at St. Ed's was nearly ideal - teach for an hour and a half, rest for an hour and a half, teach another section, then go home. Unfortunately, there aren't many other jobs that allow for working only half-time, with a nap in the middle of that half-time. Certainly not anything like my old job as a financial analyst - which also included a certain amount of stress and carrying heavy files around. So, this explains why I'm on a disability pension and why I have a handicapped tag for cars and need to get MD handicapped plate for my bike to replace my TX handicapped plate. I can walk at a moderate pace across a level area, but I can't walk uphill from a distant parking space, and I certainly can't sprint anywhere, like from the far end of a parking lot to a store in the rain.
Anyway, more details available to those that want them, and you can also check out my sporadic entries on my other blog, at http://bunrab.blogspot.com, which is specifically for discussion of my condition. This has probably already been waaaaay more info than most people wanted.
Do not, regardless of the above, tolerate any whining from me. I am way better off than a lot of people. I am way better off, even, than most people w/ CHF - I'm not morbidly obese, and so far I am getting by without having to get a scooter or an oxygen tank, and I don't have diabetes on top of it, and my arteries are all clean as a whistle, no plaque, so I'm not at risk of a heart attack from any of the usual reasons. And there's lots of potential things to treat this, all the way up to transplants, which I am not even thinking about yet. That's where most people with severe CHF wind up, on the transplant list; I am far from that yet. So, if I whine a bit, kick me in the shins and remind me that I am not your average CHF patient and I should suck it up and keep moving.
However, I'm still peeved that I can't use Sudafed.
Speaking of heart, unfortunately the echocardiogram shows that my ejection fraction has gone back down again. The fix for this may be as simple as changing the programming on my pacemaker again, or may require a hospital stay of a couple of days to finally get the third lead implanted. For those going "huh?" I have idiopathic dilated cardiomypathy (a fancy way of saying my heart is enlarged with no discernable cause or reason) resulting in congestive heart failure, which isn't quite as awful as it sounds but is bad enough. The ejection fraction measures how much blood the heart pumps out at each beat - what percentage of the blood that's in it does it eject with each squeeze. Normal ejection fraction is 60%. When I first got diagnosed, mine was 15%; this past spring, it had improved all the way up to 25%, but the latest echo shows it's back down in the 15-20% range again. So, my heart is pumping about 1/4, maybe as much as 1/3, the amount of blood a heart should. There are several reasons this is a problem. One is that it means that only about 1/4-1/3 the normal amount of oxygen is being carried to my muscles by the bloodstream. So I get tired really easily, and am rather weak.
Next reason is that the bloodstream is normally what clears fluid out of the lungs; when the heart ain't doing that job well, fluid can build up in the lungs and seriously limit one's capacity to take in air at all. (This is the "congestive" part of congestive heart failure - the lungs becoming congested.) Think of how poorly people breathe when they have pneumonia - that's what it's like. Fluid can also build up in other parts of the body - edema, this is called, and it happens mostly in places like the ankles. While puffy ankles aren't in and of themselves any big deal - I've never depended on the skinniness of my ankles to get me a job or a mate - they can signal increases in blood pressure.
Another reason CHF is a real nuisance is that changes in the size of the heart and thickness of the heart walls affect how electrical impulses can carry through the heart, controlling the beating. People with any sort of cardiomyopathy are thus far more at risk for abnormal heart rhythms - fibrillations, racing heartbeat, irregular heartbeat, that sort of thing. The sort of thing that can cause heart attacks among other nasty effects. That's where having the defibrillator implanted comes in. The defibrillator is known more formally as an Implanted Cardioversion Device or Implanted Cardiac Defibrillator, depending on whom you ask what ICD stands for, and is commonly referred to by its users as a pacemaker simply because that's a term the general public can better understand. One can get a pacemaker that isn't a defibrillator; they are separate things - but most ICDs include a pacemaker as well, and most people are more likely to have some recognition that one is referring to heart problems if a person says "pacemaker" than if they say ICD. This includes airport security people - a LOT easier to say "I've got a pacemaker" and expect them to know the drill, than to try and explain ICD. So, although what I have is primarily there because it's an ICD, it will hereinafter usually be referred to as a pacemaker.
Yet another problem with having CHF is the medicines used to treat it. While they do improve my health and quality of life, they have their own little quirks and side effects. The diuretics probably are the biggest noticeable help, clearing the fluid out of my lungs. However, the digoxin (a digitalis derivative) helps regulate heart rhythm; the beta-blocker (which actually blocks both alpha and beta adrenaline) helps keep stress from triggering adrenaline surges which could trigger an electrical event (see fibrillation, arrhythmia, etc., above), and keeps my heart from trying to beat harder and winding up enlarging even more; the sartan, in my case Diovan, keeps blood pressure even; the statin, in my case Lipitor, is originally developed to lower cholesterol* - has beneficial effects for heart failure and heart attack patients that aren't fully understood, even independent of the cholesterol-lowering effects, and there's a couple other drugs as well. Various side effects of these reduce my tolerance for heat, sunlight, aerobic exercise normally designed to raise the heart rate, alcohol, etc., etc.
Anyway, I have to avoid stress, and lifting anything heavy, and I find it pret'near impossible to walk uphill or upstairs more than a couple of feet before having to stop and rest. When I first got diagnosed, because of the amount of fluid in my lungs, I was having trouble even walking on level surfaces - trying to cross the street, I'd have to stop and pant for breath on the center stripe, and then lean against a lampost before my legs collapsed under me after I finally made it to the other curb. I sleep about 12 hours out of 24, which makes it hard to get stuff done, and if I try to do too much, you can throw in another 2 or 3 hours worth of nap needed. So I can't work full time. I can work for about 3 hours before I'd need a nap, for most kinds of work. That's why being adjunct faculty at St. Ed's was nearly ideal - teach for an hour and a half, rest for an hour and a half, teach another section, then go home. Unfortunately, there aren't many other jobs that allow for working only half-time, with a nap in the middle of that half-time. Certainly not anything like my old job as a financial analyst - which also included a certain amount of stress and carrying heavy files around. So, this explains why I'm on a disability pension and why I have a handicapped tag for cars and need to get MD handicapped plate for my bike to replace my TX handicapped plate. I can walk at a moderate pace across a level area, but I can't walk uphill from a distant parking space, and I certainly can't sprint anywhere, like from the far end of a parking lot to a store in the rain.
Anyway, more details available to those that want them, and you can also check out my sporadic entries on my other blog, at http://bunrab.blogspot.com, which is specifically for discussion of my condition. This has probably already been waaaaay more info than most people wanted.
Do not, regardless of the above, tolerate any whining from me. I am way better off than a lot of people. I am way better off, even, than most people w/ CHF - I'm not morbidly obese, and so far I am getting by without having to get a scooter or an oxygen tank, and I don't have diabetes on top of it, and my arteries are all clean as a whistle, no plaque, so I'm not at risk of a heart attack from any of the usual reasons. And there's lots of potential things to treat this, all the way up to transplants, which I am not even thinking about yet. That's where most people with severe CHF wind up, on the transplant list; I am far from that yet. So, if I whine a bit, kick me in the shins and remind me that I am not your average CHF patient and I should suck it up and keep moving.
However, I'm still peeved that I can't use Sudafed.
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Date: 2005-12-18 11:39 am (UTC)And sorry about the sudafed. That royally sucks. Sudafed rocks when you're congested.