Tuesday, October 31, 2006

Cab snafu

When they told us we were being discharged, my steadfast wife called the cab company, which she had previously discovered had a van with a wheelchair ramp. They said it would take 15 minutes to an hour. I heard her ask them to have the driver call her cell phone when he arrived. They agreed. When we got outside, there was no van. She called the cab company. They told her that the driver had gotten there in 11 minutes, but left when we were not seen.

As an exercise, I'll let you figure out what's wrong here.

The van came after another wait of about half an hour.

The ride home hurt whenever we went over a pothole or bump. But I was SO glad to be home!

The new controller for my wheelchair arrived yesterday after dark, and within minutes, my capable wife had installed it and got me mobile again!

Monday, October 30, 2006

Nose blood

We were being discharged. When I got the wheelchair into the hallway, I wiped my nose, and there was brown blood. I wiped it a bunch more, and still the blood. Fortunately it was not bright red. Not wanting to trigger a procedural response from the nursing staff, I decided to conceal the blood from my dear wife.

I think that maybe they were a bit rough during the procedure, or my attempts to get air were, and that caused a little bleeding.

During the operation, I got to see the inside of my stomach on the monitor. But I was tired of interesting experiments on my own body. I wanted to go home. So I threw the tissues in the trash and followed my miraculous wife to the elevator.

Sunday, October 29, 2006

Karate master

So at last they told us we could be discharged. I wanted to get out of that nightmare palace. I had to get out of the bed and into my wheelchair.

My strong wife and a cubic nurse helped me sit up. The left leg tends to extend, and resist my struggle to sit up. My dear wife knows to bend the leg back under me.

Some people who try to help grow alarmed by the moves that you make in order to make other moves. Consider the bicyclist. In order to turn right, one must first lean left. Some people do all they can to prevent you from leaning left.

I needed to get my weight over my feet in order to stand up. I did not realize it at first, but the cubic nurse would press on my right shoulder to keep me from falling on my face on the floor. So I could never get my weight over my feet. I tried, and tried again. I would extend my right arm to get some weight beyond the tipping point. After a few tries, I noticed that the cubic nurse would block my right hand quickly and effectively each time I did so. She was really good at it. I think she had martial arts training.

I reached out to my wife several times, and the karate hand block thwarted me each time. Then I managed to grab the cubic nurse's forearm, in order to pull my weight over my feet. You'd think that the cubic nurse might then understand my goal. She peeled off my hand so fast I had no chance to pull. I began to form the theory that she did not want to be molested, which would explain why she blocked my hand each time it reached out.

She and my intelligent wife tried to lift me up on a count of three. It could not happen, because I had been prevented from getting my weight over my feet. In the spastic, failed attempt, my right hand flailed out and lifted the cubic nurse's shirt up toward her breast. She reacted extremely quickly to that, defending herself and adjusting her clothing.

She continued pushing my shoulder back, and I at last realized that this was the problem. "Don't touch me!" I slurred angrily at her. "You! Do not touch me!" She understood, and turned and left the room. I now find it amusing that she feared being touched, and that I accidentally molested her, and then wound up yelling at her the molestee, not to touch me, the molester. I like irony.

I shifted my weight forward. I could have stood up with help. But the morning nurse arrived and decided to do a transfer into the chair. As I have become less able to communicate, I have learned that although my way is the best way, it is often OK to accept the way other people want to do things.

So she clamped my knees with hers, braced herself, grabbed me under each armpit, and swung my butt into the waiting chair.

We were poised to make our escape.

My electric wheelchair broke yesterday at midday. My strong wife must push me everywhere. And last night I developed a 'pinched nerve' that makes my neck hurt on the left side. Pathetic

Saturday, October 28, 2006

Sexy lady doctor

The sexy lady doctor came to see us after my feeding on Friday morning. Other than the glorious and continual presence of my dear wife, the visit of the sexy lady doctor was the only bright spot of the whole, awful, experience.

She looks, I think, like the character Seven of Nine from Star Trek.

She held my hand. For a long, long time, in full view of my darling wife. The two of them had a long conversation while I closed my eyes and held hands with the sexy lady doctor.

Then Dr. Evil arrived and the sexy lady doctor let go of my hand. This is when he talked about my need for control.

This morning circa 630 AM I felt several 'burps' at the PEG incision, separated by several minutes. I was a bit gassy, and duly farted. But I felt for liquid and there was none. After getting up, I saw no liquid residue so I hope it was gas pushing INTO the tube rather than around the seal.

Friday, October 27, 2006

I hate them all

Friday morning, the 13th, I woke in the uncomfortable hospital bed. My blessed wife was with me.

I had not eaten since dinner on the 11th. I have a really fast metabolism, which is why I've been so skinny my entire life. I woke hungry. Not just hungry but starving, as in, pain throughout my whole body.

"Need food" I wrote or said to my dear wife. The plan was that they were supposed to tube feed me in the morning. They didn't, not until 10:30 AM. I wrote them notes, I rang for the morning nurse, I tried to talk to them. Various bureaucratic delays stood in the way. Every other word from me was "food." Well, not quite, because every other sentence, to my beautiful wife, was "I hate them." I hated everyone who was making me starve.

Finally they allowed me a prepackaged apple sauce. I lay on my back and dipped the spoon into it, then put it, upside down, into my mouth, to ingest the residue. I had learned from my diabetic friend Tiberius that the mouth can absorb some nutrients directly. Once when he was browning out, we went into a store to get orange juice. As the sudden crowd of people appeared before him in line, he drank about two ounces, paid, and threw the rest away. Then we went to lunch.

In the hospital, I felt much better after a couple of licks of the spoon. I dosed myself with apple sauce residue to keep the crazy tissue-burning hunger at bay.

After some dallying, they poured some water and Jevity formula into my stomach.

If it goes in too fast, I feel a cold sensation on my Adam's apple. That's a sign to stop or slow down. I asked my ingenious wife to cover the tube with a paper cup to slow down the flow. I think she may have not pressed on the cup to form an air seal, because the flow was rapid. I was not watching. The morning nurse, not the idiot, observed this attempt at regulation, and then asked me what my career had been.

Computer programmer.

She nodded. I thought she was going to compliment me for being so smart, so I raised my finger to my temple.

"Ah," she said "that's why you like to make everything more complicated."

Thursday, October 26, 2006


So I fell asleep after 12:15, believing there would be no ambush. I was having a pleasant little dream in which my former work buddies were commuting to work in tiny curled leaves, instead of cars. I awoke at 12:40 to a female nurse fiddling with my port-a-cath, which had a needle, line and clamp on it as usual. The clamp is important because it prevents something called 'blood' from leaving your body.

I said in an earlier post that women are better than men. That's true, but there are exceptions running both ways. My two excellent male nurses bucked the trend, though my male surgeon had not.

This woman nurse was an idiot. She kept trying to force saline into my port line, with the clamp closed. The closed clamp kept my blood in, and saline out. Tell me she'd never encountered that concept before. She said that the port line was 'sticky' and she would change the needle.

I said no, and reached to open the clamp. I tried to say "The clamp is closed," but she was already lecturing me that she needed to help me, and it was for my own good. My fingers are clumsy, and I had just woken, so it took a while for me to get the clamp open. By the time she finished interrupting and lecturing me, never trying to understand me, but instead reacting to her assumptions, she had fled the room in a whirl of words. I closed the clamp again. "Idiot!" I tried to yell.

My steadfast wife was now on her feet. "The clamp was closed!" I slurred. She left to tell the idiot about the clamp.

"The line has a clamp," she said, beyond the curtain.

"I know," said the idiot, "but the line is sticky. I need to change the needle."

"Idiot!" I tried to yell.

You may be wondering: Why the sudden mood change? Well, I was physically hurt, aching, and tired in a nasty bed with almost no ability to change position, trying to compensate with my aching head and neck -- and along comes an idiot who wants to keep me awake even longer with an unnecessary procedure that would involve poking me with a needle.

Many of you admire brainhell's patient, forgiving nature. But I also speak truth.

This nurse was an idiot.

I felt the need to urinate, and, not knowing if I was still at risk of urethral torture, I grabbed for the jug and tried to pee. I got out only 100 mL because the idiot nurse came back and started yapping that she needed to take my blood pressure. I extended my arm and said "Go ahead." She took that as a no from her problem patient and started lecturing me that she needed my blood pressure. I said "Go ahead." Repeat as necessary. The pee choked off in a rage. My dear wife then told the nurse "He's saying 'Go ahead,'" and the idiot took my blood pressure. The urine was emptied and, fortunately, there was no more talk of changing the 'sticky' needle.

A man idiot would have insisted on it.

Wednesday, October 25, 2006


So after the harrowing PEG insertion surgery, they wheeled me into recovery, where they said I could have morphine as desired. That was good, because the hole they'd cut in my abdomen was starting to hurt. I am not sure, but I bet I had two doses (I think they were 4 mL) within the first half hour, then two more at half-hour intervals.

They wheeled me out of recovery and into a room somewhere in there. My nurse was a man.

Then I was proud of myself for waiting 90 minutes until having morphine at 3:00 PM. I had another at 4:30. I was again proud that by 6:30, when I wanted to go to sleep, I told the new nurse, also a man, that I'd like some as a precaution before I slept, and when he asked whether I wanted 4 mL or 2, I said 2.

But I hadn't urinated since the operation. He said that morphine sometimes plays tricks on the GI systems. Around 9:00 PM this became a big concern for him, when he did a portable ultrasound on my bladder and said that it had about 700 mL in it. He said it might burst, leading to way more medical intervention.

The stay in the hospital was physically uncomfortable. Because of how weak I am, plus the new wound, I lay on my back the whole time. My butt hurt, and my head hurt, not from a headache, but from muscle strain, from having my head jammed all up in them strange-ass pillows, me trying to turn it from side to side to adjust myself and get comfortable.

The last thing I wanted was more medical intervention. The nurse said my bladder might burst if they did not put a straight catheter in my urethra, to drain the bladder. I don't know where, but I read somewhere years ago the opinion of someone who'd had a urethral cath that you should never let anyone put a tube up your penis no matter how dire the circumstances. I gather that it hurts. Fortunately my kind and loving wife was with me the whole time except in the operating room. She fetched a pad and pen for me many times. I wrote: "No morphine, no IV, no cath." They had been hydrating me via IV all day, presumedly filling my bladder.

The nurse told me that his advice as a medical professional was that I needed a cath. "I've been hurt already today," I wrote. It had been torture, and I felt awful. So how about a heaping helping of penis pain radiating muscle spasms up your abdomen to the wound? But the nurse also respected my refusal, gave me the plastic jug to pee in, and said he'd check on me when his shift ended at midnight.

So if I didn't pee by midnight, they were going to torture me again. But if I stuck to my guns too well, I might wind up with a burst bladder, hurting myself and further tormenting my dear wife.

So I asked to see the cath. I hoped for something smaller than angel-hair pasta, so flexible that it came in loop. After all, I reasoned, once you get it in there and start releasing urine, time is on your side, so it doesn't matter if you only get a tiny, thin stream.

What he showed me was as thick as a knitting needle. Sure, it was rubbery, but not squishy. It was red. And it had some kind of bulb on the end that looked to me like a barb.

So if I didn't pee by midnight, they were going to torture me. My courageous wife was given a fold-out cot. I am so grateful to you, darling, for being there with me the whole time. You are my ally and friend, my mate.

I must have dozed. I woke around 11:40 PM with the urge to pee. I got out 200 mL, as measured by the marks on the jug. My darling wife woke to my call and showed the jug to the nurse. That was good but no more would come. I was tired and wanted to sleep. But I was also aware that insurance companies want you out of the hospital stat, which is why in the maternity unit the staff bang the door open, flip on the lights, and start talking to you loudly and rapidly -- just as though it weren't 3 AM and two exhausted parents weren't sleeping with a newborn.

The nurse had said he'd check on me when his shift ended at midnight. So, to protect myself from the ambush effect, I waited until 12:15 and then went to sleep.

Tuesday, October 24, 2006


Dr. Evil,

This letter will contain a critique of my PEG-insertion surgery which may cause you to react defensively. I urge you to restrain that impulse, because my comments are intended to improve your future treatment of patients.

I obtained a favorable impression of you when my wife and I met with you. I trusted you. The fact that you used a Macintosh, as I do, when PCs are nearly universal, made me think that perhaps you were willing to think for yourself, to buck the trend of hierarchical doctor-patient relations, in which the expert does unto the inexpert without regard to the needs of the patient, without unnecessary, time-wasting, overly-sensitive communication.

I trusted you. You said that I would be given valium to reduce anxiety, and local anesthetic to reduce the gag reflex. You may not have said that I would be too drugged to care what was done to me, but that was the impression I got.

When the surgery happened, I was put in wrist restraints (surprise!) I gather that you avoid telling patients about this in advance in order to reduce anxiety. There are other ways to keep hands away from the abdomen, and I surmise that the real reason for the restraints is to prevent people from trying to grab the probe that is inserted in their throat. But the restraints did not worry me, for I still trusted you.

I heard you give the order to administer some kind of drug. Perhaps it was the valium. It did not change my mental state at all, it only made me yet weaker and perhaps drowsy.

A process suggestion: If you do give any drugs intended to reduce anxiety (and I have no experience to indicate that you do), please 'test' the patient with conversation and mildly alarming actions to determine if they are 'stoned' yet.

I have a major speech impairment, and many of your other patients probably do too. A process suggestion: Institute a way to communicate with the patient to determine if they have urgent concerns. Prearrange some signals. I could have pulled on a cord or dropped something loud.

Yes, these suggestions increase the length of the procedure, and yes, it might induce some few patients to stall, or even get more anxious. But you're a professional, and you can handle those situations adroitly.

As I mentioned, the valium, if there was any, did not change my mental state at all. But I was calm, because I had confidence in you. There was no local anesthetic to reduce my gag reflex. You folks did not announce any, and did not apply anything to the back of my mouth.

What happened next was torture. You're familiar, from the news, with 'waterboarding' -- making someone think they are drowning. The probe was put down my throat, and I did manage to endure that. But I have a lot of saliva, and I have a weak palate that tends to close, like a flap, over my airways -- including the ones from the nose. I had recently had an episode of near-asphyxiation in which thick saliva combined with the weak palate to nearly strangle me to death. As you might imagine, that was unpleasant.

After the probe was out, the saliva pooled over my air access. Each time, I was able to cough it away. However, each time I was about to draw a breathe after the cough, cruel irony made one of your staff immediately suction me. She saw the cough as a signal that I needed suction. The suction blocked my airway, and redistributed the saliva over my airway. That's not what is supposed to happen, but it did. She was trying to help me, but she prevented me from breathing enough air. Each time I exhaled, I looked in her eyes and tried to form the word "air!" She never understood, nor showed any interest that I might be trying to say something. My guess is that she thought she was dealing with yet another overanxious patient.

It's not sufficient for you to say that you monitored my blood oxygen level and that it remained ideal. If that's sufficient, then let me hook you to a machine that oxygenates your blood, while I tie a plastic bag over your head. The sensation of asphyxiation is very real.

It's also not sufficient for you to remind me that you warned me that nobody likes having the probe down their throat. As I mentioned, I endured the probe, unpleasant as it was. The well-intended waterboarding afterwards was the real torment.

Please do not narrow this down to an issue with the suctioner. You are responsible for the entire procedure, including the lack of communication.

I repeat that some form of patient feedback during the procedure is essential.

I do not appreciate your comment the day after the procedure, where you said I have a need for control, and that at a certain point, your team had to take control of me, which I must have found unpleasant. I am not the problem. My need for control was overridden by my trust in you. I trusted you, and you tortured me.

As it now stands, I would not urge fellow patients to have a PEG. If you can assure me in writing that you have implemented my process suggestions, I may change my mind.

I understand that the PEG tube wears out after a year or so, and needs to be replaced by a similar procedure. I fear that procedure and am of half a mind to refuse it, regardless of consequences.

I know that you're not in charge of PEG design, but I have a suggestion anyway: See if you can encourage the development of a PEG that has a tube that can be replaced by an external procedure. In my mind I see the a hollow, hard plastic tube with appropriate ridges protruding from the abdomen. Onto this would be mounted the flexible PEG tube, with appropriate clamps. If such a PEG exists, offer it as an option to patients. I predict a 100-percent adoption rate. The current design is asinine, as it requires surgical replacement.

I hope that you are the surgeon of my first impression, who, rather than dismiss these comments intended to improve your future treatment of patients, will find value in them.



cc: sexy lady doctor, clinic director

Monday, October 23, 2006


The printed address for getting to my stomach tube insertion surgery were correct, but the helpful guy who explained it on the phone to my detail-oriented wife sent us to the wrong place, in an adjoining building. After about half an hour of searching, we wound up in the right place.

Let me just say that women are better than men. They are much more likely to help others, which is a cornerstone of civilization. There is a whole support group of people who help us, most of whom are women, or cool husbands who wouldn't otherwise be involved, but for their wives.

A woman drove us to the hospital, arriving at our house at 5:00 AM to do so.

Sunday, October 22, 2006

Blink blink blink blink blink blink blink . . .


The ATM entered a failure mode this afternoon. I was sitting on the deck in mild sunshine with it off. When I turned it back on, it would not move, but instead would flash seven times with a three-second pause, then repeat. After about two minutes of me pressing the power switch intermittently, it resumed normal operation.


I will ask repair guy to call you. Would you like us to order the Permobil wheelchair? You would then have a back-up wheelchair in case you have more problems with the AT'm. It seems like you are using the AT'm a lot.


I use it all the time. Unless this is a known error state, I doubt there is much that repair guy's call will accomplish, since it only did it the once. And no, there was no input at all to the stick.

We're still deciding on the permobile.


I would agree with your diagnosis of not to worry about that fault unless it happens regularly. Usually the fault codes happen from turning the w/c on without the joystick being centered or a power spike.


Today the chair failed in exactly the same way -- in the same location. I was on the deck in mild sunshine. I turned it on and it flashed seven times with a three-beat pause. It kept repeating this. Since the only common element was sunshine, I hypothesized that the control unit was overheated. It is mostly black and I was not moving. I managed to lift the right drive handle, but could not reach the left one. l wheeled in a left turn into the shade. After sitting for a few minutes, during which the controller presumedly cooled, the controller allowed me turn the chair off, then back on again. It has been normal since then. Please check your diagnostic codes for the meaning of seven flashes with a three-beat pause. Just in case you're going to suggest it, this does not motivate me to get a new or different chair to put these problems behind me.

Saturday, October 21, 2006

Pills and potions

IV ceftriaxone, and two can of Jevity 1.5 via tube (710 calories).

Then rifampin, minocycline and Co-Q10 via tube.

Prepare minocycline, quinine, creatine, and DHEA in another syringe for use via tube at bedtime.

Lunch: two can of Jevity 1.5 via tube (710 calories). Orally chew two magnesium malate pills.

Dinner: two can of Jevity 1.5 via tube (710 calories). IV ceftriaxone with dinner, so I don't forget it at bedtime.

Before bed:
Minocycline, quinine, creatine and DHEA via tube.

Friday, October 20, 2006


[Black "brainhell"]

1. e4 e5 2. Nf3 d6 3. Bb5+ c6 4. Bc4 Bg4 5. h3 Bh5 6. d3 Nd7 7. Nc3 Nb6 8. b3 Nxc4 9. bxc4 Nf6 10. Bg5 Be7 11. Rb1 Qc7 12. O-O O-O 13. Qe2 Qa5 14. Nd1 b6 15. Qe3 Bxf3 16. Qxf3 Qxa2 17. Rb2 Qa3 18. Qg3 a5 19. Bh6 Nh5 20. Rb3 Nxg3 21. fxg3 gxh6 22. Rxa3 b5 23. Ne3 d5 24. Ng4 Bxa3 25. Nf6+ Kg7 26. Rf5 Be7 27. Nh5+ Kg6 28. Rxe5 Bf6 29. Nf4+ Kg7 30. Nh5+ Kg6 31. Nf4+ Kg7 32. Nh5+ Kg6 33. Nf4+ Kg7 34. Nh5+ Kg8 35. Rf5 Bd4+ 36. Kh2 a4 37. cxd5 cxd5 38. exd5 Bc5 39. d6 Bxd6 40. Rxb5 a3 41. Nf6+ Kg7 42. Nh5+ Kg6 43. Nf4+ Bxf4 44. Rb1 Be5 {White resigns} 0-1


I hesitate to bring this up, because it might wake you from your coma, or worse, send you deeper into it.

It's about chess.

You are the stronger player, but in the last several games I have sniped you, rooked you, sharked you, rolled you down flat like an opossum under a paver.

But it's only a streak, and much as I've enjoyed it, it's got to end soon. I've had incredible luck. But that's all it is: luck.

Don't snap out of that coma too viciously.


Thursday, October 19, 2006

Another leaf

When I was a sophomore in high school, I was paid to water the plants of our next-door neighbors while they were away. I'd had this job many times. On the first landing of their stairs, they had a most unusual plant, which looked like marijuana. I knew what pot plants looked like, of course, since I was listening to hard rock, and the whole country was drowned in drug culture. On FM radio in those days there was open encouragement by the DJs to do illegal drugs. The references were only thinly veiled in order to be more clever. I remember listening to a DJ saying something like "If you're going speeeeeding tonight, just remember to stay between the white lines." These pro-drug raps would go on and on.

So I asked the neighbor, who drove the new Honda CVCC with a One World bumper sticker on the back, if the plant was marijuana. No, he chuckled, it was something called 'false arelia.' He said it was a non-cannabis that only looks like marijuana. They had it in their house as a 'conversation starter.'

I can imagine the conversations. I would be like if my sweet wife and I had a sex doll in our living room, and handcuffs dangling from the ceiling.

But I don't think they were stoners. He was ex-Air Force and still had the crew cut and the enormous watch. She worked in a bank.

I had few friends in high school, but they were the smartest kids. Most of them were stoners, naturally. What else would an intelligent, artistic, perceptive kid in the late '70s be?

I didn't try pot until I was a senior, and only a couple of times. At age nineteen, I decided it was bunk and gave away the only lid I'd ever bought to an amazed hippy dude. That was the same year, at a dorm party, that I surreptitiously poured out my alcohol drink in a planter, and decided not to fetch another.

I did not like the feeling of having been absent that I got after pot or booze. It was like I'd missed a part of my life, been dead. I gather this is precisely why so many people like them. I also sensed in myself a weakness that these substances could exploit. I was probably vulnerable to substance abuse. But I enjoy my real life, and don't want it to be wasted. "Wasted" is such an apt word.

My father, I am told, was convinced that I would become an alcoholic like my uncle. He saw something in me that he'd seen in his brother. Apparently he shared this observation with everyone except me. When I came home from college one time, after I was 21, they offered me some wine with dinner. I declined. After quizzing me, my mother went over to my father and fairly sang "Your son is a teetotaler!" She would do anything for that man, but not, I guess, rejoice in the destruction of his children.

While plant-sitting at 15, I examined the neighbors' plant with exquisite care. I knew, from reading, that cannabis leaves were supposed to have tiny hairs on them. These leaves were more like very flat ones from a succulent. I smelled the plant. Pot plants have a smell. This one didn't. True, I had never smoked pot, but I did want to find out if my neighbors were stoners. I spent a long time studying that plant, and I recall smirking that it was a nice try, but no one would be fooled. Still, the morphological similarity of the leaves was remarkable.

I carefully picked one large leaf and pressed it between the pages of my math book. I probably intended to display it to my stoner friends to amuse them. But I have no memory of doing so. What I do recall is that, at some point when I was trying to entertain with my witticisms about math, I went over to my father and flipped open the math book, looking for the page to bolster my comment.

Up popped the leaf.

A pause.

"Uh, that's not what it looks like" I said.

My middle sister was in the room at the time. We'd squabbled and argued and fought since I was a toddler. Now that we're grown, we get along fine.

I told the whole story of the plant that only looks like cannabis.

He didn't buy it.

"That's ... marijuana" he sonorously intoned.

I said we could go over to the neighbors' house and ask to see the plant. No response. I now think that he thought they were stoners and that I'd gotten it from their pot plant.

A few days later my mother encouraged me to do some school thing, I don't remember what. "It costs three dollars," I said.

"I'll give it to you," she said.

"Don't give it to him!" implored my alarmed middle sister. "He'll just buy another leaf!"

That is so funny, I can't tell you.

What's ironic is that a few years later, when I was maybe 18, her loser husband (now out of the picture) lit up a spleef and we all three smoked it.

Wednesday, October 18, 2006

My PEG in action

A video of me using my feeding tube. Just remember that the camera adds 10 pounds:


Tuesday, October 17, 2006


A few days before the operation, my darling daughter wrote a bunch of 1s and 0s on a piece of paper and handed it to my darling wife. Then she told her mom what it says, and her mom wrote it down:

He loves his children even though he's weak. And I love him, too. With love in his heart, he can't really breathe. Please don't tattle on him, because he might laugh.

Monday, October 16, 2006


This is the tube that was inserted in my stomach. In this shot from Saturday you can still see a little bit of dried blood left over from the operation. We are gradually ramping up to using it more and more.

There are little numbers on the tube. Mine exits the skin at 4.5.

Sunday, October 15, 2006

Pills via stomach tube

My nurse said said I can mix rifampin, minocycline and liquid co-q10 in the syringe to belly, but to space the magnesium malate from the minocycline by two hours.
Same for Pepcid.

Today I resumed rifampin and minocycline and started liquid co-q10.

Friday, October 13, 2006

Hated it

We're back. I hated every single minute of it. Details later.

Wednesday, October 11, 2006

Scheduled blog outage

Stomach tube operation is Thursday morning, tomorrow. So don't expect me to post until, oh, Monday.

Tuesday, October 10, 2006


Dreadcow is writing again, and his 8.06.2006 post 'Hypocrite' is masterful. He feels a lot of shame for what he's done in Iraq. I would too.

Monday, October 09, 2006


Maybe I should get a walker to push along, like old people do. I think it would help flex my left foot.

Sunday, October 08, 2006

From the S.F. Chronicle:

Scientists have identified a defective protein that appears to be a central element -- if not the cause -- of two mysterious nervous system disorders: amyotrophic lateral sclerosis, better known as ALS or Lou Gehrig's disease, and one of the most common types of dementia.

The findings suggest that ALS, which attacks the nerve circuits that control movement, and the far more widespread brain disorder known as frontotemporal dementia are essentially different forms of the same disease.

A report on the findings appears in the latest issue of the journal Science. Virginia Lee, director of the Center for Neurodegenerative Disease Research at the University of Pennsylvania, was the senior investigator of a multi-center team that included Dr. Bruce Miller, a neurologist and director of the Memory and Aging Center at UCSF.


"It suggests that maybe if a treatment can be found that works for ALS, it might work for FTD, too," Miller said. "It takes two relatively understudied diseases and puts them under a common banner."


Although symptoms are much different, with the new findings researchers now suspect one culprit -- a progressive buildup of the same malformed molecule toxic to nerve cells.

During a telephone interview Thursday, Lee said it's unclear how the critical protein, known as TDP-43, becomes crumpled, or why it causes the death of only certain nerve cells, such as the motor neurons in cases of ALS, or the brain cells that succumb in cases of FTD.

"We don't know why certain populations of cells are selectively vulnerable," Lee said. "What we can say is that TDP-43 is the disease protein that is responsible for motor neuron death you see in ALS, and also is responsible for other neurons to die in FTD."

magnetbabe points out:
"'It takes two relatively understudied diseases and puts them under a common banner."' = $$$+ mucho incentive for drug companies"

Now there's a market!

Saturday, October 07, 2006

Ultrasound results

The ultrasound results are in. I have "sludge balls," which I am guessing is a pre-gallstone condition. The report goes on and on about how sexy my liver, spleen and pancreas are. All it says about the gallbladder is "Sludge balls are noted in the gallbladder, without evidence of shadowing. They are mobile within the gallbladder. No gallbladder wall thickening or pericholecystic fluid is identified." I have no idea what in tarnation 'pericholecystic' means, but when lurching around on the internet I found this link, which is only interesting to me because I also have elevated bilirubin.

The report concludes "Multiple sludge balls in the gallbladder, without evidence of cholecystitis."

From Healthline:

Chronic cholecystitis is caused by repeated mild attacks of acute cholecystitis. This leads to thickening of the walls of the gallbladder. The gallbladder begins to shrink and eventually loses the ability to perform its function: concentrating and storing bile. Eating fatty foods may aggravate the symptoms of cholecystitis, because bile is needed to digest such foods.

Also according to Healthline: "Acute cholecystitis is a sudden inflammation of the gallbladder that causes severe abdominal pain." And it did hurt.

In 90% of cases, acute cholecystitis is caused by gallstones in the gallbladder, which obstruct the duct leading from the gallbladder to the common bile duct (which drains into the intestine). Severe illness, alcohol abuse and, rarely, tumors of the gallbladder may also cause cholecystitis.

The trapped bile becomes concentrated and causes irritation and pressure build-up in the gallbladder. This can lead to bacterial infection and perforation. Attacks may follow a large or fatty meal.

In two or three of my four episodes, it was after eating pizza. I now avoid all cheese.

Dr. Quack left a voicemail: "Yes, your gallbladder uh, looked, not so good, um, there was lots of sludging [unintelligible -- 'I believe?' or 'they believe?' or 'maybe?'] some stones. Going off of memory. If there's a fax number..."

So since he was going off of memory and did not speak clearly, I am left in the same position as before: wondering if I have, or am at risk of gallstones.

The GP's office called later to say that sludge balls are not a big worry. Once I get that feeding tube installed, we should be able to pour an ox bile solution into it.

Friday, October 06, 2006


My boy started reading on his own when he was four. It started out with the usual: him picking out certain words at story time. And then I guess he must have been scanning the words as we read to him. Later, he said that I had taught him. Not true, but maybe he was sitting in my lap and looking on as I read when the breakthrough happened for him. My brilliant wife read to him half the time, as we alternated putting the kids to bed. Now she does it by herself every night.

Then the little guy would grab a kid book and sit on the couch looking at it for extended periods. He did this longer and longer with more and more books, then started telling us what was in the books. "He's reading!" I said to my kind wife, but I think she did not want to admit that then. So I tested him by printing out sentences I had written on the computer.

I'd say he was four and a half by the time we all accepted that he could read.

Now his equally smart sister is three and a half. So he tells her and us too that he started reading when he was three and a half.


Saturday morning they were playing word bingo and she found some words like "fun," "run," "we" and "go" on her own. "Now you know how to read!" he said generously.

Thursday, October 05, 2006

Tutu club

I'm worried that my son may be endangering his friendship with your daughter. He's told us that there is a secret club of girls who say "too-too" or the like when he and his buddy are together. This secret club is run by your daughter. How many members? "All of them." He got really annoyed when I asked how many girls actually say "tutu." "ALL OF THEM!" he yelled.

I suspect that on one or two days your daughter and maybe a few other girls might have said "Two two" as a celebration of my son and his pal.

But now I think, my son and his pal really love this idea of a girl conspiracy. They're at the right age to begin making girls the enemy. My son has begun planning a birthday party to which no girls would be invited -- well, except his best friend Julia. The entire agenda for the party would be to discuss countermeasures against the tutu club.

I am NOT asking you to talk to your daughter or change her behavior. I am just hoping that we parents can undermine the splitting into rival genders a bit.

Wednesday, October 04, 2006

Need suction

Almost died last night. You bloggy friends need to accept that I someday might.

We went to the ALS clinic yesterday and my weight and breathing scores were down, except one, which was up by 10 points.

Because we were in a hurry, I drank a 500 mL smoothie in lieu of my usual breakfast. While at the clinic, I drank several Ensures, then papaya juice and more smoothie for dinner at home. Papaya juice thins secretions. Thick saliva is a problem for me.

Note that I had no water all day. None.

So at bedtime I brushed my teeth. This often inspires a wad of thick saliva in the back of my mouth, threatening to close the airways. It's been scary sometimes, but in the past I have been able to breathe in through my nostrils while working over several minutes (15?) to get the goop out of my mouth.

Last night, however, the goo was thicker. Imagine a really thick, oozing craft glue like comes, or came, in the metal can with the brush-in-lid combination.


I called my adept wife. This might be an emergency and I might need help. She came into the bathroom and watched me almost die. I was sucking, rattling, trembling as I stood over the sink with my wheelchair behind me.

I could not get air! Tiny bits, yes, but every time I tried to get enough, the glue flap would close.

She offered to call 911. I shook my head.

I have supreme confidence in myself, and because of the conditions in which I grew up, I am the type of person who wants to deal with problems without distractions from people who want to help. So it must have been hard for her that whenever she tried to comfort me by stroking my back, I would knock her hand away with my elbow. My thinking was: I need to focus every single brain cell I have on trying to get air! Your hand distracts me! I'm sorry, Honey.

She thought to offer me a length of toilet paper. I still was not getting air, but the toilet paper absorbed some goo from my tongue. This act on her part probably saved my life. I recognized that wiping goo out with toilet paper was a good strategy, and motioned for more, but I was still not getting air. I shoved the toilet paper into my mouth, hoping to swab up more. She said she would call 911 and ran to the phone. When she came back I was still croaking and rattling and getting nothing. She talked to the 911 people.

I tell you, I don't mind a firing squad, decapitation, electrocution, lethal injection, or explosion. Those are easy ways to die. Sign me up. As long as it means I don't have to asphyxiate.

Asphyxiation is terror. Torture. Waterboarding, anyone? If I were in a car wreck and my mangled, shredded body seared me with pain while it took me 20 minutes to die, that would be mighty bad. But I prefer that to, for example, choking to death on my own spit. Air needs are extremely primal for most animals. Freedom from pain takes a distant second.

My heroic wife went to open the front door, because we briefly heard sirens.

Each time she left the bathroom I had an urge to follow her. I still felt that I was going to die, and if so, I wanted to die in her arms. I did not think of my kids. I did not think of my friends, but only this one woman who I love.

I sat down on the wheelchair and rested my forehead on the edge of the sink. My nostrils drew in a partial breath -- clear and clean! The glue flap closed and there was more choking, but I kept trying to channel that miracle again.

I started happening more and more often. I was starting to breath again!


By the time the paramedics arrived, I was leaning over one arm of my chair, mouth open, trying to drool out more saliva, entire body trembling with spasticity -- yet able to breathe!

The kids stayed asleep.

There were goo balls and goo struggles, but it was clearing! I signed the form saying I had declined hospital care, and the nice men left, after taking my vitals. I drank half a glass of warm water and breathed clearly all night. My intrepid wife is buying a suction device like dentists use.

Lesson to youse wid de ALS: Get a suction device! And always, ALWAYS drink some clear water every day.

Oh by the way, I have decided to have a feeding tube installed through my abdomen into my stomach.

Tuesday, October 03, 2006


My son and a boy a year older went on a spider hunt in our yard. They caught three. Really big ones. They named them, and put them in a box on our new deck, with grass in the box for 'food,' and the lid propped open with a stick to let air in.

About a week went by.

I was sunning myself on the deck when I noticed a little tiny spider dangling from a new web. One of the spiders must have been carrying an egg sac.

I looked around. There was an enormous spider hanging from a web over by the house. The next day it had moved to the laundry line, which afforded more construction substrate.

I clumsily and slowly grabbed the rake. I awkwardly and weakly raised it. Whack! Spider descended on a bailout silk.

I sat smugly for a bit, then stood up, grabbing the railing, to have a look. No sign of the spider. But wait... what's this? Less than two inches below the railing hung the very big spider, waiting for the dogs to tire.

I crooked my weak middle finger under my thumb, and whacked the spider when I released it. Down it fell. Oddly, I felt a wet sensation where my nail had struck the spider. I hoped that meant it was wounded. In full combat mode, I released a gob of spit from my mouth while the spider fell. The spider hit the concrete below, and the spit landed right on it! Hooah! Spidey didn't move after that. I hope the ants ate it.

Monday, October 02, 2006


It is evident that three World Trade Center towers were brought down by controlled demolition after two were struck by airplanes on 9/11/2001. In 30 years you may all know this in the same way that you can know that the Gulf of Tonkin incident was faked. But I might not be alive to remind you that you'd been told. I'm not the first to tell you, but I am the most handsome.

The 9/11 believers have increasingly complex and nuanced explanation for everything, like the orbits upon orbits of the spheres of the Sun and planets circling around the Earth before Copernicus.

They can explain the melted steel burning for weeks afterward, the fortunate collapse of the basement levels, the fact that the second tower struck collapsed first, the fact that WTC 7, not hit by a plane, collapsed neatly into its own basement, whereas smashed and gutted buildings hit by tower debris did not collapse. They can explain the neatly bevel-cut beams near the basement, and why fires not hot enough to melt steel did so, despite most of the jet fuel exploding outside the towers. They can explain all that. Easy for them. They believe.

We've heard the pancake explanation many times. Most people accept it. But it's not as though every reputable structural engineer has explained the collapse of the towers. In fact, the society of engineers issued a report saying that the accepted theory had a "low probability" of occurring.

I am told that if I have questions about 9/11, I must believe in a conspiracy, that for example Bush planned it.

Not true.

Maybe Al Qaeda prepped the buildings with explosives. Maybe they got to the owner and had him do it. Maybe the people around Bush saw an opportunity for a sea change in which America threw off the restrictions that chaffed the neo-conservatives. Maybe any combination of these ... or some scenario not yet considered.

The buildings were blown that day. I wish I could live to read about how and why in the history books.

Sunday, October 01, 2006

Not Bridget Jones

Not Bridget Jones is back from not blogging. Her September 23 post, "Issues with the Mental Health Care System" is worth reading. I suspect that she starts not blogging when she feels better, so we should all hope she starts not blogging again real soon, not?
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