Air. Precious, sacred air.
My previous episode on this invisible but all-present substance in which we are all immersed, and upon which we all depend, is Episode 25: Down the Rabbit Hole and Suffocating.
Sadly, my body's lack of air continues, which is why I'm revisiting the topic. It's been a rough weekend.
I was so happy to have the artist's permission to include his image of Sacred Wind--nothing I've seen captures my current feelings about air quite so well:
Be prepared if you choose to stay with this Episode: There's a lot of yucky stuff here. That's what happens when one discusses his or her illness: there's lots of yucky stuff. But if we're going to be real, we have to be real, so on we go.
For over a year now I've suspected that my blood and, hence, my organs and tissues, have been under-oxygenated. This can be referred to as hypoxia (lack of oxygen in the body's tissues, usually due to hypoxemia, lack of oxygen in the blood), or oxygen desaturation.
Anyway, evidence for my having this lack of oxygen has been discussed on various episodes of The Mary Dell Show; briefly, this evidence includes the following:
So, now that I've opened up a sensitive topic to be further explored later, I might as well admit what actually happened that night, as embarrassed as I am about it! I have to be honest, to leave an honest record. This is my show, after all! So, as usual given my reverse Circadian rhythm, I was up in the middle of the night watching TV. Usually I try to do something productive at the same time--either write Mary Dell Show episodes, one of the fiction or non-fiction pieces I'm working on, or poetry; do research and some reading--a former book addict, I'm now addicted to surfing the Web to learn about all the things that fascinate me, mostly in the natural world, but unfortunately medical as well, or work on my crafts--drying herbs, making sleep pillows and tussie mussies, embroidering, etc. Good thing I thoroughly love these quiet hobbies, as I have a feeling I won't be running any marathons in the future.
My previous episode on this invisible but all-present substance in which we are all immersed, and upon which we all depend, is Episode 25: Down the Rabbit Hole and Suffocating.
Sadly, my body's lack of air continues, which is why I'm revisiting the topic. It's been a rough weekend.
I was so happy to have the artist's permission to include his image of Sacred Wind--nothing I've seen captures my current feelings about air quite so well:
| Thanks so much to Douglas A. Sirois for permission to use this beautiful image, one that captures my feeling about the sacredness of air, especially given my increasing lack of the element in which we are immersed and dead without! The artist has many spiritual and fantasy illustrations I love! www.dougsirois.com douglas.sirois@verizon.net http://dsiroisillustration. http://www.imdb.com/name/ |
For over a year now I've suspected that my blood and, hence, my organs and tissues, have been under-oxygenated. This can be referred to as hypoxia (lack of oxygen in the body's tissues, usually due to hypoxemia, lack of oxygen in the blood), or oxygen desaturation.
Anyway, evidence for my having this lack of oxygen has been discussed on various episodes of The Mary Dell Show; briefly, this evidence includes the following:
- Severe shortness of breath/dyspnea since my trip to Europe in December 2012-January 2013 to stay with Sabine while she was dying, scary enough to immediately contact all my docs when I got home, and which revealed the following:
- 2/2013 - Diagnosed with GERD/hiatal hernia through barium swallow;
- 2/2013 - Diagnosed with low oxygen saturation in blood via oximeter at Ear Nose and Throat specialist's office; he told me to purchase one of these (it's the little clamp they put on your finger, and it's unusual for anyone without respiratory disease to fall much at all below 100 percent of their blood's oxygen saturation). He told me to go to the ED should it fall to 85. Well, it's fallen to 85 numerous times, in and out of the ED, but no one has figured out what's going on yet. In fact, it falls into the 80s quite a bit with the slightest exertion. A six-minute walk test at my pulmonologist's not too long ago, however, showed the saturation at 100 percent after that six-minute walk. "Can you wait and take it in a minute or so?" I asked--because I'd noticed the saturation dropped after exercise, but not immediately after stopping. (This, by the way, would be consistent with myotonic disease, as I suspect.) "No," the nurse or technician answered. "That's not how the test works." Hmmmmm. Not how the test works? What about figuring out what the hell is wrong with me no matter how the fuck the test works? This is the kind of response that convinces me I have, indeed, fallen down the rabbit hole by getting sick in today's United States.
- 3/2013 - Diagnosed with cardiomyopathy, hypokineses (lack of movement) of one of the cardiac walls, left ventricular dysfunction, and mild valve regurgitation. Little did I know until I requested my records from my cardiologist last week that he'd also observed rapid, shallow breathing while at rest when I was in his office. This is evidence of a number of things, one of which is hypopnea (lack of oxygen in the tissues) due to weak intercostal muscles. These diaphraghm muscles are the most commonly compromised by myotonic dystrophy. Gee, yet another clue discarded in an Electronic Health Record rather than actively pursued.
- 5/2013 - Diagnosed with moderate sleep apnea--an average of 17 times per hour either with stopped breaths or periods of being under-oxygenated (apnea and hyponea index). This is evidence, of course, of lack of oxygen in the tissues, since that is what "hypopnea" means. Still, no one seems to understand that this is my fundamental problem, for some reason.
- 2/2014 - Documented episode of hypercapnia (too much carbon dioxide, or CO2, in the blood, which indicates hypoperfusion, i.e., too little oxygen perfused from one part of the respiratory system to the other, or to the circulatory system, when my workplace called an ambulance this past February because I was so short of breath and weak.
- 1/2014 - Diagnosed with narcolepsy, with an average of 4 minutes falling to sleep in a Multiple Latency Sleep Test; anything under 8 is diagnostic. I also fell nearly right into REM sleep twice or more. These findings are also consistent with the sleep pathology seen in myotonic dystrophy.
- 2/2014 - Diagnosed with white matter lesions of the periventricular areas in by brain. Some of this is normal due to age, but my neurologist showed me the MRI file, and he said there were "a lot" of them, in his words. Based on that and my symptoms, he diagnosed me with neuromuscular disease and had planned to do a spinal tap to help diagnose which one. However, I requested being specifically tested for myotonic dystrophy, since I'm sure that's what I have. He referred me to an expert at Hopkins instead, and my appointment with her is July 9. I'm counting the hours--hope I don't suffocate before then.
- Over the past year, my feet, particularly my toes, have been extremely red/purple even when not cold, particularly if I've been active that day. I've had severe cramping in my feet. My hands are frequently also deeply red after using them. My legs have developed frequent mottling, known as livedo reticularis. All of these indicate lack of circulation--but the blood may be circulating but without an adequate supply of oxygen in it. I've shown this discoloration to all my doctors, who don't seem the least bit concerned about it.
All of the above have occurred or been diagnosed in a period of 1.5 years, mostly all in that first year after my trip to Europe. That's a hell of a lot of major crap going on in a little over one year of a person's life. Yet for some reason no one seems to understand how sick I am--that's the feeling I get, and I think it's because my illness is "invisible"--it has not, to date, made me look sick. I still look damned good for a woman my age, and I'm convinced I've been the victim of prejudice. Health care professionals think I'm dissembling, that I'm a Munchausen's patient, or some such bullshit. A woman who looks like me can't possibly be this sick, can she? Actually, that very topic will be a focus of an upcoming episode: "How Can A Woman Who Looks This Damned Good Be This Damned Sick?"
I also have a history that mirrors these latest problems with breathing. In 2008, I had a constellation of problems leading to hospitalization. There, I was told I was in heart failure and had probably had one or two mild heart attacks. After a few days in which I was divvying up my "estate," such that it is, between my two boys, docs decided my problems were due to being overmedicated with hypertension meds and took me off all of them--with disastrous effects, but that's another episode. Now I wonder whether I simply weren't severely hypoxic at the time, a finding that would have prevented the horror that followed. (When I write up that horror, I'll link to it--I haven't yet put that nightmare to "paper" yet.)
Even more signs and symptoms for my theory exist, but you get the gist.
One of the common problems in myotonic dystrophy which, as I said, I'm convinced I have, is a condition known as alveolar hypoperfusion. This means that the alveoli, little sacs in the lungs from which oxygen moves into the blood stream, are not adequately profused with oxygen, which of course means that the oxygen in my blood is also not properly oxygenated.
In 2010, I came down with polycythemia. Many of my early posts were on this condition, in which the body makes too many red blood cells. I was thoroughly tested locally and at Hopkins for the common causes of polycythemia--a primary condition known as polycythemia vera, and a number of secondary causes. Despite all of this, no cause was found. My advice from the Hopkins hematologist as she released me was "Don't have any more phlebotomies"--having the blood taken, similar to when giving blood for the Red Cross--to make it less thick and help it to move better. By then, I'd had two over a six-month period when my hematocrit (volume of red blood cells in comparison to all other blood cells) and hemoglobin (a measure of the amount of oxygenated parts of red blood cell) got too high above normal. I write about that in my most popular post to date, "Blood Sludge for Turkey Day." The phlebotomies had made me feel a lot better, temporarily; sludgy blood does not make a body feel great, let me tell you. But the doctor said she didn't want the actual cause of my polycythemia to be masked by treating it without knowing the cause. I think I know what it is now--in fact, I'm sure of it. Now I just have to get the doctors to agree with me.
In addition to those common causes of polycythemia, however, are neuromuscular conditions that weaken the diaphragm muscles. Of course, the heart and lungs reside in the diaphragm. When the muscles become so weak that the lungs cannot adequately ventilate, problems such as alveolar hypoperfusion follow. And when that happens, problems occur with the heart, the blood vessels, and all bodily tissues, essentially. And when that happens, the body senses a lack of oxygen and begins pumping out more red blood cells to try to make up for that lack. And that, sports friends, is polycythemia. To date, despite all my other signs and symptoms, this cause for my polycythemia has not been explored. Hopefully, that changes very soon.
Sometimes things are so simple, so elegant. The body is a well-tuned machine. It's lacking oxygen in its blood? It starts pumping out red oxygen-containing cells. Simple. Elegant.
But even if my body's doing what it's supposed to be doing by manufacturing red blood cells, my body should not be doing that because I shouldn't have a shortage of oxygen in my cells. My body's regulatory system--its tuning--is all out whack these days, and has been for quite a while, apparently. Central (i.e., brain) control of my autonomic processes--breathing, sleeping, heart rhythm, temperature, sweating hunger, a sense of time, etc.--is nearly nonexistent these days. Even my calcium regulation--one of the most finely tuned of all the regulatory controls--is off. In the past year, I've had blood tests showing me to be hypercalcemic and hypocalcemic both (not at the same time, of course), and that ain't good.
But even if my body's doing what it's supposed to be doing by manufacturing red blood cells, my body should not be doing that because I shouldn't have a shortage of oxygen in my cells. My body's regulatory system--its tuning--is all out whack these days, and has been for quite a while, apparently. Central (i.e., brain) control of my autonomic processes--breathing, sleeping, heart rhythm, temperature, sweating hunger, a sense of time, etc.--is nearly nonexistent these days. Even my calcium regulation--one of the most finely tuned of all the regulatory controls--is off. In the past year, I've had blood tests showing me to be hypercalcemic and hypocalcemic both (not at the same time, of course), and that ain't good.
Anyway, once again, this is a long introduction (for those who don't regularly read my blog, in which these have all been discussed in the past) to the latest manifestation of whatever the hell is going wrong with me. I've had a troubling cough for a loooooooong time. My son comments on it quite a bit, while my Honey is pretty much used to it. Not to be gross, but I bring up a lot of stuff, mostly clear sputum or phlegm (the former is in the esophagus; the latter in the lungs). I always feel, though, that there's more down there I just can't get out.
Friday night, I felt particularly bad. My cough had been nagging me, and my shortness of breath had been so bad that I could barely get out of bed and could do absolutely nothing physical without feeling utterly weak, almost to faint level. (I also have a history of near-syncope, another factor that supports my argument.) And, to bring up a topic that I intend to explore in a future episode: I had to turn down my very patient Honey for sex yet again because I knew I didn't have the energy, stamina, or breath to participate in such a vigorous activity. (And with us, vigorous is an understatement--that man is the Ever Ready Bunny--always ready and lasts a long, long time.)
So, now that I've opened up a sensitive topic to be further explored later, I might as well admit what actually happened that night, as embarrassed as I am about it! I have to be honest, to leave an honest record. This is my show, after all! So, as usual given my reverse Circadian rhythm, I was up in the middle of the night watching TV. Usually I try to do something productive at the same time--either write Mary Dell Show episodes, one of the fiction or non-fiction pieces I'm working on, or poetry; do research and some reading--a former book addict, I'm now addicted to surfing the Web to learn about all the things that fascinate me, mostly in the natural world, but unfortunately medical as well, or work on my crafts--drying herbs, making sleep pillows and tussie mussies, embroidering, etc. Good thing I thoroughly love these quiet hobbies, as I have a feeling I won't be running any marathons in the future.
We have a free month of HBO, and not much was on. Since I wasn't feeling very well, I didn't even feel like doing one of these simultaneous tasks while watching TV, which is almost always a necessity since, with my ADHD, I can't stand just sitting there glued to the tube without something else to do at the same time.
So, I settled on Ace Ventura: When Nature Calls. Now, I'm the first person to love a good comedy, and I'm all in favor of stupid comedy a la Mike Meyers (Austin Powers, Wayne's World, etc.) and Jim Carrey. I have to be in the right mood, though. The first time I saw Ace Ventura: Pet Detective, the first of the series, I thought it was abominably stupid. But the next time I was in a better mood, and I ROARED. I've always thought Jim Carrey is amazingly talented, and he is most definitely that in the first Ace Ventura movie.
So enchanted was I with the first one that I saw the second in the movie theater. I was greatly disappointed--Carrey had exaggerated his already absurd character to the point of, well, absurdity, and some of the gags were disgusting, and I mean that literally, as anyone with a modicum of class who can remember a particular gag-worthy scene will agree.
One scene did make me laugh, and laugh hard--a scene having to do with a rhinocerous. Again, this was pretty low-class humor, and that particular type of low-class humor has never amused me much. But that scene, for whatever reason, tickled my funny bone. In case you've never seen it--and if you aren't uptight and squeamish--treat yourself now:
I remembered nothing about the film except that one hilarious scene, and I had no idea whether the scene would make me laugh again; not long ago, I'd I'd seen a cut version on regular TV, and it hadn't been nearly as funny. You have to see the whole thing--and even some YouTube versions cut out too much of the beginning, which is critical for setting up the full humor.
Friday night, the stupid scene hit that funny bone the exact same way it had in the theater, I'm embarrassed to say. I can honestly say I don't remember laughing that hard at anything on television in a long, long time, though The Big Bang Theory has me laughing pretty hard these days, at least the earlier episodes--I've been a bit worried with some of the later ones, and I hope it doesn't jump the shark in its last three years.
Friday night, the stupid scene hit that funny bone the exact same way it had in the theater, I'm embarrassed to say. I can honestly say I don't remember laughing that hard at anything on television in a long, long time, though The Big Bang Theory has me laughing pretty hard these days, at least the earlier episodes--I've been a bit worried with some of the later ones, and I hope it doesn't jump the shark in its last three years.
After this refreshing belly laugh, however, came an unpleasant consequence. I started coughing uncontrollably and very soon I had puked up about a half to 3/4 cup of sticky, watery, clear phlegm. I mean, it came right up and fell over my nightie that I tend to wear most days as it's skimpy and I'm always too warm--a slimy fluid so sticky that it didn't even soak into the nightie--in my lap, a large amount of it pooled.
Talk about disgusting.
Interestingly enough, I've had this happen to me before. In 2008, after my first hospitalization with the suspected heart failure and having been (in my view) released too early to go home, I was unable to sleep for five nights straight; I just felt very queer--no other way to put it. Now I wonder whether I weren't oxygen starved, but I didn't know what was happening then other than being very worried about my health and how horrible I felt. I began feeling quite manic as the days clicked by with no sleep.
One afternoon, I was getting ready to drive my son to the train station. He was going home to Pittsburgh after a weekend at home. He'd been concerned about me, of course, after my hospitalization, and had been extra concerned when I had trouble climbing stairs in a building we were in--after one or two steps, I had to stop and wait a while until I had enough strength to take one or two more steps up. No exaggeration.
I don't remember having a coughing fit, but I probably did. I do remember being in my kitchen and suddenly bringing up what seemed like me to be gallons of clear liquid. No warning, just retching what I thought was water. After a moment or two, I puked up yet another gallon or so (so it seemed). We were going to be late for the train, so I just sopped up the floor with some towels and drove off--but the night that unfolded was one of the most bizarre I've ever experienced--I believe now due, once again, to this oxygen deprivation--and it would lead to the absolute, supreme, bona fide most bizarre night of my life the next night--but that's another episode Down the Rabbit Hole, probably the most strange and horrifying of all. Every single person reading this should be Very Scared of getting sick and seeking treatment in today's health care system, and I say this from educated, thoughtful experience.
How I'd vomited up so much water had always puzzled me; I remember having not been able to eat or drink anything all weekend. Now I realize the liquid had been phlegm, no doubt due to the very same reason it happened last night: alveolar hypoperfusion and/or other respiratory issues due to muscle weakness due to myotonic dystrophy and, at the same time, at last an explanation for my polycythemia.
Knowing the snail's pace at which health care progresses (hypothetically) today, and knowing the worthlessness of someone with my symptoms' going to the ED--the same old tests are ordered, and those tests won't show my problem--I didn't freak out and call my pulmonologist the next morning. Actually, I'd planned to, until my Honey reminded me it would be a Saturday morning. No longer working, I'm frequently at a loss as to which day of the which it is.
I will call this morning, a Monday, however. True to form, I've been awake all night. I've been coughing off and on since the horrible happened, and I'm bringing up more liquid, but not in massive amounts. My breathing is better, but I wouldn't say close to good. I'm as weak as weak can be. I can't find my oximeter, but I'll try to put my finger on it (ha ha) this morning.
I was given a pulmonary function test just over a year ago, when these symptoms began (or re-started, given the 2008 episode) for real. My function was excellent in nearly all tests, but in one I only managed 90 percent of expected. That was in residual volume after exhaling. In other words, I should have cleared more of the phlegm in my lungs than I did; I'd received an A-. Somehow I think I'd be tickled pink with that A- today. I'm scheduled for another such test in July, but I'm hoping my doctor will have me come in and do it sooner so I'll have that data when I see the myotonic dystrophy expert on July 9. It would really also be nice to know, for sure, why the hell I can't breathe.
The sad thing is, there's not a whole lot anyone can do for me if, in fact, my respiratory distress is due to neuromuscular disease and muscle weakness in the diaphragam. Some oxygen, perhaps, but even that has to be doled out carefully because the lungs can only work so quickly. Perhaps a change from CPAP to BPAP to help me breathe at night. If I'm facing respiratory failure, it's fun to know there's really nothing at this point doctors can do to reverse it; it will speed up my time on this earth no matter what.
All I know is this: The two most common causes of early death in myotonic dystrophy are respiratory failure and sudden heart attack. I'll take the latter, thank you. I'm very attached to breathing and don't want to feel it failing me slowly. Is that too much to ask?
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