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When frustrated in my search for a place which will take both Sam and Sassy, I have been researching cardiogenic pulmonary edema. That is the diagnosis I have been given. Though they have access to test results which are not here for me to evaluate, I can look at the symptom lists, read about the topic, and read between the lines. What I am finding is that there is a huge flaw in the symptom list I have and the ones offered in the places I have looked. I am suspecting, again, the diagnosis is probably non-cardiogenic pulmonary edema. Further, signs of heart failure they seem to indicate do not match any symptoms I have. No, smoke and mirrors again. Just like with the ear ache and a few other things, they won't treat what ails me, choosing to try and treat me for something that cannot be treated their way. If you remember rightly, the ear ached left of it's own accord.
Some of the problems with the diagnosis? I am not oxygen deprived and should be. I am not coughing up blood and I should be. I am not turning blue or grey and I should be. Though those are only potential issues, they are rather strongly significant ones, at least two of those should be showing. There are other problems as well. I'm being bulloxed. Some reasonable and odd causes for non-cardiogenic are breathing toxic materials from ammonia to CO2, hemodialysis and urinary alkalinization, and the use of hydrochlorothiazide (my last diuretic).
This is all well and good. My problem? They are not treating the right diagnosis. While the new diuretic is prescribed for their given diagnosis, it is not helpful for my suspected diagnosis. It does not, in fact, functionally affect my breathing difficulty. Further, finding what is really the problem is impossible if it is not being researched. Worse yet, untreated non-cardiogenic pulmonary edema can become as bad as if it was the other, if not treated. I am really beginning to hate doctors. And, no, they can't be trusted. They single mindedly want me on high blood pressure medicine, medicine I can't take, and will ignore anything else in this pursuit. If for no other reason, though I have a serious one, I would not take those pills. Damn straight.
I will continue on light duty, with a shorter list of tasks including searching for a place for Sam and Sassy. I must prepare for the possibilities, whatever they may be. If I had the money, I would seek competent medical treatment. Bureaucrats should not be allowed to become doctors! In any case, I have what I have. I am going to begin a search for home remedies for non-cardiogenic pulmonary edema. Hey buddy can you spare a breath of fresh air? Damn academics should be jailed when they try to practice what they theorize, or really, what some other damned fool academic theorized. Idiots.
Hmm, I do feel better already. Later.
Update: I am not sure which is worse. Treatment for 'non' involves intensive care lung cleaning through invasive machines. Often with the patient needing to be sedated to unconsciousness. *raises hand* A third still die, if treatment goes forward. The problem here? My blood oxygen levels are running at 110 where normal is 90 to 100. In other words, I am not missing oxygen as I should be for both diagnosis's. Hmm... I simply have a stubborn body I guess.
In choosing between fighting the side-effects of what will let you live, or dying, you are choosing to die.
ReplyDeleteI can't tell you how disappointed (angry) I am.
Your life, your dealio with God, whatever goes down. I can only hope the Catholics are wrong about suicide, because this is what it smells like.
You're a very stubborn man Doom, and you won't be the first person to die of stubbornness.
D.C.,
ReplyDeleteYou must not have read a single thing I have written. I tried their medicine for a full year, which burned me out of college and life before finally going through 2 to 3 years of experimentation to find a medicine or group of them I could take. I was finally able to get things going when my doctor suggested, then added, Ritalin. Which, by the way, I really also didn't like or want to take BUT COULD TAKE SO DID TAKE.
I was living with a woman at that time, which made it at all possible for me to experiment with the medicines for the first half of that time. I live alone now, so I can't take that kind of a journey. I need to eat, shop, clean, and groom. While I can and do parts of those, I struggle on my own as is with them. Adding medicine would make these things literally impossible.
Taking this medicine, beyond physical considerations, is much like being water boarded, but for an indefinite period of time. I do not know when I will lose track of conscious thought or when it will return. It is a horrifying thing to go through.
There is no stubborn attached to my refusal to take what they are offering. It, put plainly, is cold hard fear and loathing. I die because I cannot and will not go through that, ever, willingly, again. You sound just like my doctors! Damn.
Well yeah I suppose I do. Sucks to give a damn I suppose. Pisses me off, actually. It's getting really old to lose online friends. First Acidman, then Bane, Granny J, K is barely hanging on, and now you?
ReplyDeleteIf I were a doctor, your sky high blood pressure would be my first concern too. I mean it is one thing to say "hell with the medicine, I'll live with the consequences of high blood pressure". But now one of the consequences is coming home to roost. You need look no farther for the cause of your pulmonary edema like OJ looking for the 'real killers'--untreated high blood pressure is a primary cause.
Look, the thing that set me off is you talking about obtaining pain meds to make the end easier. If you go out like Acidman, so help me God, I will kick your ass from one cloud to the next when I catch up with you!
I don't begrudge you the right to die of natural causes if that is your determination, and I understand the need to not die alone and in agony if possible. But for pallitive care done right, you need to set up with a hospice that will receive you when the time comes.
After seeing my Dad into a hospice his last couple days, there is no way I would put myself or my loved ones through any bullshit notions of "dying at home".
Need pain meds? They are generous--literally as much as you need up to whatever point you want. If you want to be conscious and cognizant at least a short time every day, no problem. If you are just ready to go and want to be completely pain free your remaining time, they will accommodate. Need personal care to ease whatever suffering you're undergoing? They are all about making the passage as smooth as possible.
The funny thing my wife has noted though, is that often someone at death's door who is sent to hospice, will sometimes come back because of the better care they receive in such facilities. So who knows?
D.C.,
ReplyDeleteNo, fair enough. I understood your frustration, I just believed it to be misdirected. I understand high blood pressure is the absolute root of all other issues, and I have fought tooth and nail for something, anything, I could do.
As for palliative care... I simply hadn't... thought of that in a more literal sense. I used the term, but with me as the caregiver. If the time comes, I will find out more about that. As I have it, the Catholic Church sometimes has a group of women who will tend to the dying right in their homes. Of course, one issue is money, no matter who offers it. Don't worry, if it gets to that point, I will be seeking that. If it eases your mind, it does mine as well. But I want it here at home, not in some (literally) Goddamned hospital! I need to get in touch with my priest, in any case, for a number of other issues. I will ask.
I honestly wonder if having home health care would not bring me back. Maybe not, but it might allow me to take more risks with medicine. Not swearing to it, as I won't allow myself to lose conscious thought while still being physically functional. We both know what I am. The fear of what I am and can do, and losing control of that, was part of what lead me to being suicidal. Losing control of that is not an option.
One issue about palliative care though, is that, due to whatever God made of me, I will probably not ever be fully incapacitated. I will be somewhat functional and quite mobile until the last breath. This makes that a bit... odd. Just a concern I have.
ReplyDeleteRe home health, oh hell yeah. That seems to be the trend anyway--more in-home care and less LTC facility stays.
ReplyDeletePerhaps if they could see firsthand the effect that the Lisinopril has on you (i.e. "third day, patient is still completely unresponsive, unable to wake...") they may reconsider their intransigence re the ritalin.
Actually home hospice is an option in some areas. I am still a tad bitter that my Dad's insurance was supposed to cover home hospice, but because of his remote location they refused the option.