View Full Version : OT: personal note

01-26-2015, 01:41 PM
I have just been informed that they have room for me at the hospital. When I go in it will be for as long as a full week. I will be taking my tablet and may be able to get on line but their public internet connection is not reliable. If I don't post for a week that is why. I'm not dying, just yet. They have some testing to do. Because we live well out of town and as I no longer drive it will be much easier if I stay in there.

01-26-2015, 01:48 PM
Got our fingers croxxed here for you Even. Best of luck.

01-26-2015, 01:57 PM
Stay well my friend.


A.K. Boomer
01-26-2015, 02:03 PM
Good luck with it all Evan and thanks for the up-date...

01-26-2015, 02:18 PM
Hope all goes Great!

01-26-2015, 02:21 PM
Good luck, Evan.

01-26-2015, 03:45 PM
Thanks for the heads-up. Keep us posted Friend.... JR

01-26-2015, 03:48 PM
Best of luck, Evan!

01-26-2015, 03:51 PM
Best wishes Evan!

Paul Alciatore
01-26-2015, 03:55 PM
We will all be rooting for you.

Do you require any Care packages to supplement the hospital food?

01-26-2015, 04:03 PM
Agree , thanks for the heads up,, and i'm sure we all send our best wishes!! Post if you can to give us an update.

Rich Carlstedt
01-26-2015, 04:04 PM
God Speed my friend !


01-26-2015, 04:38 PM
Evan, use luck or skill. Which ever gives you the best result.
We'll be waiting for an update.


01-26-2015, 06:07 PM
Good luck Evan. Keep kicken and given them hell.

01-26-2015, 06:11 PM
Good luck Evan!

When I had my prostate out I told my doctor to fix me or kill me. Crippling me so I can't work would be the worst possible option for my whole family. Fortunately he did good work and all equipment still works to some degree!

01-26-2015, 06:50 PM
Best wishes Evan!
Oh yes, and give 'em hell if they deserve it.

01-26-2015, 07:17 PM
Best of luck, hope the time passes quickly, the tedium in those places is palpable, 3 AM seemed to be the only time my watch ever showed, I don't relish the place any more, fwiw it's bloody scary, I'll be thinking of you.
All the best

01-26-2015, 07:56 PM
Wishing you the Best!
Don't give the Nurses a hard time.
Tom M.

01-26-2015, 08:44 PM
Good luck, Evan ...


01-26-2015, 08:57 PM
"Don't give the Nurses a hard time."

It doesn't get like that very often any more...

I have been tentatively scheduled for Thursday. They were going to get me in this afternoon but I am lower priority than emergencies. I must be in a private room because I have an IgG sub type two deficiency. That makes me more susceptible to bacterial infections. This is one of those situations where our government medical plan is a good deal. It isn't free but it is cheap. There is no additional cost for this and we pay $1566 per year for our combined medical coverage.

I have three CAD programs for my tablet that look interesting and will spend some time playing with them. Most of the time I am there is going to be just sitting around waiting for them to feed me or measure how much shlt I produce. One of my problems is that my digestive system doesn't work very well thanks to having celiac disease untreated for 40 years until it was finally discovered. Other issues exist such as my very high heart rate and very low blood pressure when standing.

These are things that can't be quantified during a visit to a doctor so my doctor wants me to spend time where all of this can show up and be measured officially. We already know where I stand because I have all the required equipment including a good electrocardiograph but that doesn't put it in the official health record.

I am looking forward to playing with my new tablet and I have about 26 hours of ultra high definition short and long movies to watch.

J Harp
01-26-2015, 09:37 PM
Wishing you all good numbers on the tests Evan.

01-26-2015, 09:48 PM
After following Your posts for a few years, I hope You stay on top of the situation and cautiously watch the Doc's and nurses so that they don't mess up. Best wishes and hope for a speedy release.

01-26-2015, 11:34 PM
Best wishes Evan,

and you might want to load a few audio books on that tablet... http://www.loyalbooks.com/ Free, and listening can be a lot easier on the body that watching/reading as you don't have to maintain sight angles and whatnot. Besides, your tablet will be able to play an audio recording AND let you play with the CAD programs at the same time :)

Oh, and don't forget the old radio plays too. Lots of those to be legally downloaded as well and they can be really fun to listen too, though the always-there cigarette adverts might annoy the medical folk ;) Might as well get the most out of that private room.


01-26-2015, 11:44 PM
As the above said, good wishes and best of luck. I hope all goes well!

01-27-2015, 12:21 PM
Good luck!

j king
01-27-2015, 04:44 PM
Best wishes on your care Evan.

01-27-2015, 09:32 PM
Best wishes Evan and I hope your hospital visit is as productive as my recent one was. They quickly identified & jerked out the faulty body part & I went home a couple days later feeling great. Keep an eye on 'em though & ask lots of questions.

We will all be sending positive thoughts your way!

01-28-2015, 12:46 AM
It will be interesting. I am very curious as to what they may detect that I haven't. Unfortunately, because we live in a remote part of this province our hospital has very limited capabilities. Fortunately, my doctor is one of the best, if not the very best, that I have ever had and met. He has just one mission in life and that is to help people live better. He could not care less about gaining admiration or credit for what he does and he freely admits that there is plenty he does not know about medicine. There is a reason that there are over 200 recognized specialities in medicine but there are plenty of doctors that would try to make you believe that they know all there is to know and only God, maybe, might know a bit more. Not my doctor. He and I get along very well which is probably part of the reason he is going to this length to figure out what is wrong with me as much as possible and if any helpful treatments exist that neither of us have considered.

I have found and installed three CAD programs that I haven't used before and will run on my new tablet. That alone should keep me busy for a while. It's too bad I don't have something that can run SketchUp with enough power to work with my current project. Then it wouldn't matter where I am or for how long. If it somehow turns out that I must spend more time like this in the future a new high power laptop is in order. I have some spare change these days since I beat the government at their own game, trying to deny me a disability pension. It took me over four years fighting with them and I eventually took it to the Federal Minister in charge of the Service Canada Department. Not many people understand how stubborn us Aspies can be, especially when we are right and they are wrong. I would have gone to the Prime Minister if necessary.

01-28-2015, 02:56 AM
+1 on all the best wishes...


01-31-2015, 05:44 PM
Just an update; I am still not in the hospital. I come after any emergency patients and our hospital has very limited facilities being in a remote area. We only have two private rooms last I heard and I cannot be placed in a 4 person gender neutral ward because of my immune system deficiencies. I have a very low level of that part of the immune system that fights bacterial infections such as pneumonia and streptococcus. No telling when I will be in at this point but not likely until the coming Monday at soonest. In the meantime I am ripping a bunch of movies and some of the few TV shows I actually liked, such as the entire first season of Alias. That will help prevent boredom, anyway.

I just received my new smart phone to use as a screen/controller for the new Sony lens camera. It is a very nice phone with high cpu power at 8 cores, plenty of memory at 16 gigs flash and 2 gigs ram. Screen is 1920 by 1080 and looks excellent. Running Kit Kat and it boots in less than 2 seconds. At $154 US it seems a very good deal. It also uses replaceable batteries and includes a spare battery. It appears to be a perfect clone of a Samsung but has some extra features as well as not being locked. It even includes an indirect link in the serial number specs to what Chinese software to use to root it and get Google out of your hair. Nice. I don't need a phone because we don't have cell service at home but if we ever get it it will run two simms for two providers at once. It even has FM radio as well as GPS etc. With 5.3" screen it fits the lens holder with one millimetre to spare. Perfect. It comes with a spare back plate that includes a fold-around-front cover with a window. Very nice phone and beats anything Staples has by miles, both price and functionality. A phone like that, if it were available here, would cost at least $300 to $500. It is compatible with both of the providers here.

We had some recent changes made by the federal gov that really limits the service providers. Any contract you are sold cannot be changed in any way during the entire contract unless it becomes cheaper or increases service at no higher cost. Your number must be portable and if you have a phone that works with their system they must sell you service. They must also provide contracts shorter than three years, down to one year.

Errol Groff
01-31-2015, 06:39 PM
Best wishes from eastern CT.

Errol Groff

01-31-2015, 07:24 PM
Evan, don't forget to bill them for educating them:p

01-31-2015, 07:39 PM
Ya, at their rates:). I do hope you get some positive results, Evan. You sure have a lot of people here pulling for you.

01-31-2015, 08:55 PM
I very much appreciate all the good wishes. However, this isn't some serious emergency issue, just some testing to do. Still, it is nice to have friends even though I haven't actually met most of them in person. This is a very new social situation that has never existed before to anything close to this degree in the past. About the best comparison in past times is what were "pen pals" but that was a far more limited form of what we now have.

One of the things I like about this very new form of having friends is it totally eliminates the possibility of discrimination of anyone by anyone based on such things as appearance. In the long run it will very likely finally help to eliminate such petty nonsense. This is, in my mind, one of the very positive sides of the Internet.

01-31-2015, 09:50 PM
Well along those lines here is hoping they get good data and can read the results.My eldest cousin,early 20's, has been through the mill with inconclusive tests trying to determine why his Pancreas doesn't seem to be working right.A year in and still no answers,worse than the illness or the discomfort is not knowing what is wrong.

01-31-2015, 11:41 PM
That remains to be seen. What I really need is some genetic testing and at least one of those tests may not be able to be done in Canada. Even the US only has two labs that can do it. It isn't cheap and would have to be funded by somebody's research grant because I can't afford it.

Tundra Twin Track
02-01-2015, 12:09 AM
Hope all goes well!

02-01-2015, 10:31 AM
That remains to be seen. What I really need is some genetic testing and at least one of those tests may not be able to be done in Canada. Even the US only has two labs that can do it. It isn't cheap and would have to be funded by somebody's research grant because I can't afford it.

Maybe you should write yourself up a medical resume (of your ailments/conditions) and send it off to those labs and any researchers you can find that have any vague connection to those labs?

There might just be a scientist or two out there who would like the mystery more then the money.

02-01-2015, 08:32 PM
I know You are tenacious enough to prevail against this problem. Don't give up searching for a suitable Research Lab willing to do the testing. Every answer will help more than just the few afflicted right now. Rising Knowledge floats ALL Our boats.

02-01-2015, 09:41 PM
The specific genetic test I need done is to test for the presence of a mutation in the Chromosome 4 PHOX2B gene, exon-3. The reason that it cannot be tested by most labs, as I understand it, is because the mutation involves a long sequence of alanine repeats in the gene. Alanine is one of the four amino acids present in DNA and it is most commonly found as long repeats in what is called "garbage DNA". Garbage DNA is meaningless long strings of amino acids between the active components of the entire DNA strings. Because it is often long strings of alanine those strings are automatically ignored by the computerised testing equipment that sequences DNA for analysis. Only a very few machines around the world have been programmed to not ignore these repeats and in that case a great deal of manual investigation must be done by people well experienced in doing it that way. They are uncommon as are the reprogrammed machines. The reprogramming might by simple to load/unload but in use it is essentially useless for any normal sequencing work. Sequencing is entirely automatic now and is what makes it possible to do at all in any significant amount.

There are not enough people in the world (perhaps 1000 or so, nearly all under age 20) with this particular mutation to attract attention and make it worth spending any significant amount of money on its study. I may well be the only person older than 45 to 50 that is known to be alive with this mutation. There is no question that I have it because of the absolutely perfect match of my many symptoms to the disease ( and the important fact that my symptoms do not match anything else) but for an absolute confirmation the genetic test must be done.

I should also point out that reprogramming the sequencers is not at all cheap and for something unusual will probably require some individual familiar with the particular machine to rewrite the analysis program for that machine.

When I spoke to the genetic lab in Vancouver, known to be one of the top in Canada, I asked if they could test for Piebaldism and/or CCHS. Their reply was not encouraging. They were not familiar with either term.

02-01-2015, 10:11 PM
'but for an absolute confirmation the genetic test must be done.'

Evan, what happens if this is confirmed? Does it change the treatment, or suggest a treatment that isn't being applied currently?

02-01-2015, 11:24 PM
The specific genetic test I need done is to test for ... it is most commonly found as long repeats in what is called "garbage DNA"...

My limited understanding in this is that they are discovering that much of those long repeats of so-called garbage are in fact very important and their lengths have all kinds of effects. In other words, one of the discoveries they've made is that they were wrong. It's not garbage DNA just hanging around. More or less can make big differences.

I suspect the tests for it will become much more common in the future... maybe we'll be around to see it.


02-02-2015, 01:22 AM
Best wishes to you Evan, I may not always agree with you, but you always make me think!

02-02-2015, 11:23 PM
"Evan, what happens if this is confirmed? Does it change the treatment, or suggest a treatment that isn't being applied currently?"

Excellent question. What it will do if confirmed is eliminate the application of certain treatments that could at the least be useless and possibly harmful. Unfortunately, positive treatments are not yet known. This is a severe form of dysautonomia caused by incorrect brain stem operation. The brain stem in formed by the PHOX2B gene and others between 6 to 8 weeks of foetal development. Once made, right or wrong, it is what you have.

I do have one bit of good news though. Since my severe form of apnea that this causes was discovered I created my own treatment. I have been using low level supplementary oxygen while sleeping to "trick" my brain into breathing by raising the CO2 level just in the brain and just slightly. I don't recall right now what I may have already explained, but saturating the blood fluid oxygen level reduces the ability of a fluid to carry other dissolved gases. In this case that means the CO2 normally produced by brain metabolism. The issue is that the CO2 sensors in my brain are running with a setting that is too high. They require more CO2 to initiate another breath cycle than they should need. By saturating the blood with oxy the CO2 in the brain builds up more than usual and that tricks my brain sensors into normal breathing cycles. The CO2 in the rest of the body stays normal because it doesn't have the osmotic blood/brain barrier to deal with. This prevents the acidity problem you would have by using CO2 suplementation.

My doctors had not heard of such a treatment and didn't think it would work but as it only uses a very low level of oxygen they gave approval to try it. That matters because you must have a prescription to buy oxygen generators (or even get three free ones as I did). I have been using sleeping oxy for over two years now at a setting just high enough to raise my SpO2 to 98-99%. That is about 1 to 1.25 litres per minute of oxy, not much at all.

That is all it takes to keep me breathing normally instead of breathing only maybe three times twice a minute with 25 second breaks of no breathing. Not coincidentally, my hemoglobin levels have always been right at the top normal level, usually slightly higher. That is to be expected since my normal oxygen levels were always around only 90 to 92% while awake and as low as 72% while sleeping. That is why I have a large amount of hypoxic brain damage. Lately my awake oxy levels have been creeping up to the normal 95% or higher range and more important, in the last several months my hemoglobin has dropped to the centre of the normal range, probably the first time in my life.

I have my blood tested weekly to keep an eye on things. The drop in hemoglobin says that my body is now happy with my O2 levels, day and night, asleep and awake. It no longer thinks I am living at 17,000 feet. I do have waking apnea too but the awake brain notices when it stops breathing before the O2 drops too far.

I took my own sleep test last night to see what my apnea is doing. It means sleeping without extra O2 and a sensitive microphone positioned just below my nostrils to measure my breathing cycles. I have a set of glasses to wear rigged with the mic that makes it easy to do.

When I woke this am I was amazed to discover that my apnea appears to gone! Something has happened inside my brain to reset the sensors so they operate in the correct range. I will be doing more measurements of course to see if this is just temporary or long lasting but either way this is a BIG DEAL. There is no known curative treatment for the apnea and if this actually works then it may have far reaching implications.

02-03-2015, 02:05 AM
Quick, Evan, get a patent on it! Then maybe trade the patent rights for the extensive DNA testing you need. Your concept and testing may illustrate the difference in thought processes between a design engineer and a doctor. Best of luck to you.

02-03-2015, 03:50 AM
It is funny you mention such thought processes. The operation of the various control sensors is now commonly referred to using standard engineering nomenclature. The sensor systems are described by open loop, closed loop, plant gain, system gain, controller gain, system feedback, resistance, capacitance, conductance and so on. In my case the CO2 sensors have (had?) a too high switching setting with far too much controller gain and high capacitance resulting in a long shutdown until the measurement was eventually sufficiently high enough to switch back on the breathing. Then it cycles again. The gain is high enough to produce oscillation in the circuit.

As far as the CO2 level goes, it is well known that breathing O2 will raise CO2 in the brain. However, this is pretty well regarded as a BAD THING because it will stop breathing in people with otherwise normal sensors. In normal people a large buildup of CO2 will produce hyperventilation that then grossly lowers the CO2 so that breathing will stay stopped for a long time. That is usually a problem in people using a lot of oxygen. In my case the primary difference is that the amount of O2 I am using is so low that it is generally considered to be ineffective for pretty much anything. With a high gain system you need to make delicate adjustments. The O2 systems in the hospital can't even be set to as low as I need. The usual lowest setting is 2 litres per minute. That works on me but also makes me feel like crap when I wake up. I have no idea why.

Even if you are joking about a patent I couldn't care less. I would be extremely happy if it helped someone else live better and especially if it simply helped them live, period. I will be passing this along when I see my doctor, probably tomorrow. I am still waiting to be admitted for my testing.

02-03-2015, 04:41 AM
Evan, you're a night owl- :) But perhaps not by choice.

I find it interesting that a small dose of O2 is seemingly effective for helping stabilize things. It doesn't surprise me though. It seems that the body is quite happy with very small amounts of the various substances it uses, minerals and what not- and so must be quite sensitive to them. This leads me to believe that environmental factors could be playing a bigger role in our various ailments than we might think.

02-03-2015, 09:26 AM
The various sensors in the body can be incredibly sensitive. The difference between on and off can be tiny fractions of a percent of the operating range even when operating normally. We are far more sensitive to many things than it appears during normal life. It is one of the things I really do not like about drugs. They are often a sledgehammer approach to changing body operation. Even then, if you take a second to think about the dose sizes often involved in many drugs the sensitivity becomes clear. Many drugs have doses measured in millionths of a gram. That sure isn't much when the body weighs 200 million times as much. It is the main reason I take as few drugs as possible. It blows me away when I read somebody's case history and the number of drugs they were taking is in the teens. I take 2 and could get by on just 1. I could be taking quite a few more if the doctor had his way but I do not need them and they have hazardous side effects. They only treat symptoms anyway. I need to be able to think.

A.K. Boomer
02-03-2015, 09:53 AM
Not just drugs - not to get all tin-foil hat on you but we know about as much as the tip of an iceberg when it comes to things like EMF's or up close frequencies that we simply do not have a means of measuring the "finer" results due to them being out of our "proof" range,,,

the more subtle the effects the more they can be manipulated by test results and or not even appear to be abnormal due to not even knowing what to look for...

All you have to really ask yourself is "how did you get here?" over the millions of years and then ask "is it similar to what im doing right now?" and then one last question is "how fast did this all change?"

then when your hit with a wall of reality that can only be described as "absolutely not" and "extremely fast" you can then start to piece together why people on the average are so jacked up most of the time...

now toss in all the heavy chemistry in our lives even without bringing drugs into it much of which we ingest in the form of herbicides and pesticides and much of that which we severely alter by heat and turning it into extremely weird compounds before ingesting and then there's what we breath and drink and the surface area's of all those synthetic fibers just in things like our carpeting in our living space and what they slowly leach out into our air...

yeah - lots of subtle and not so subtle things manipulating our biological existence...

Mark Rand
02-03-2015, 10:12 AM
FFS; does everyone argue with the mechanic when he says that they've got a broken spring in their car????

Mark Rand; on Insulin for 50 years plus one other for 14 years and another 3 drugs for the last 9 years daily and happy for it:mad:

Old Hat
02-03-2015, 10:25 AM
Lets Play!

02-03-2015, 05:00 PM
Many of the drugs people take and treatments they receive are for symptom relief, and do nothing to address the core cause of the malady. Probably the most common are for pain relief, and the usual prescription is for NSAIDs. However, all of them have very serious side effects, such as stomach, liver, and kidney damage, especially when used regularly. Opiates and opioids are actually much better tolerated by the body, and they work to trigger and enhance the body's own chemical mechanisms for pain relief. However, doctors are loathe to prescribe them because of the possibility of addiction, and because their patients may sell them on the black market because of their high "street value". Yet they are basically very inexpensive and could even be produced by individuals were it not for the draconian drug war laws and regulations.

I have considerable back and neck pain, due to congenital spinal stenosis, and a recent MRI shows the spinal cord in my neck is being tightly constricted and damaged by disc compression and bone spurs, and I will be going in for an operation to relieve this condition, to be followed by another surgery later on my lower back. Surgical options have been discussed previously, but until now the advice has been to pursue "conservative" treatment options including injections, physical therapy, and pain relievers. But they mostly treat the symptoms, and I think it is actually counterproductive and dangerous to mask the pain and possibly allow activities that may cause more damage. So, mostly, I just deal with the pain and eschew activities that cause ,ore pain, and only occasionally take Tramadol or Percocet at night to allow better sleep, and Valium to reduce muscle spasms.

I know some people who take all sorts of medications and resort to using bandages and pain patches and braces to deal with joint pain, so that they can do things that cause pain and additional damage. And I know someone who had the sniffles and said she had to "take something". There are all sorts of commercials for cold and flu remedies that urge people to deal with their symptoms so they can go to work or school and thus spread their germs to others rather than stay home and get the rest that the body needs to cure itself.