Category: stroke

What Figuratively Happened?

Well, my last post was what literally and physically happened. Now, I’m going to explore some other things that happened, such as what figuratively, humoristically, and metaphysically happened? I’ll go through variations of these in a few upcoming posts. I hope that you find them interesting musings of a fractured, yet continually healing mind.

I’m going to start with the silly. Because all of this is heady difficult stuff. It’s difficult to face our own mortalities, so I think silly is the right tone to start us off.

The way I understand human beings now is of a much more fragile type of physical concoction.

Have you ever gone to a festival or concert or New Orleans where they served those excessively tall drinks in a playful tall plastic or glass tower? Sometimes, it has multiple colors of alcohol or mixed drinks in the concoction. I call this thing “the silly drink.”

And in the end, we are all silly drinks because our meat is finely balanced in the cup at the top of the silly drink and if we should accidentally fall and drop our silly drink on the ground, we are done for. All of our balance and functions that allow us to write ridiculous blog posts and sick twitter burns are floating inside a bit of meat in the cup of that silly drink. Protect that silly drink well. That is you. Or at the very least, if you break the silly drink, you will cease to be you. That almost happened to me. I almost broke my silly drink.

The care centers I was at was so concerned about me breaking my silly drink again after they put it all back together and refilled my cup, that they were insistent on me pushing the giant red button next to my bed that summoned a silly drink enforcement agent every time I had to go pee. This silly drink enforcement agent was assigned the important task of watching me pee and making sure I didn’t spill my silly drink. That is, making sure that, in my state of damaged silly drink, I didn’t lose my balance and fall over and spill the rest of my already half damaged silly drink onto the ground.

It was quite crucial that I summon the pee-Watcher and they were quite insistent that I push the button. Yet, many a time, I recall illegally peeing on my own without pushing the button. I, in my impaired silly drink state, thought it was perfectly fine to get up and pee by myself as I had done many times before. In my mind at that time, I felt perfectly fine just as I’m sure you do right now reading this. So, you, just as I was then, would be appalled at being ordered to push a button to summon a Pee Watcher to watch you pee right now.

Even knowing that I was impaired didn’t stop me from getting up to pee on my own. And thus, my judgment in this matter was also impaired. Sure, I did accomplish this many times on my own without spilling my silly drink. But maybe I was lucky I didn’t have a catastrophic error or make the poor judgment in the same way as not pushing the button in the first place.

I still struggle with this. Knowing that I have impaired judgment, yet absolutely feeling I’m not impaired, but having everyone tell me that I am impaired. Being a confident person who used to get shit done, this is difficult to get used to. I know what I can do. Don’t tell me what I can’t do. I think many self-confident and accomplished people would feel the same way. But let me tell you, it’s an illusion. Fortunately, I haven’t suffered too greatly from such an illusion, but I have to be careful. Because it’s a very seductive and comfortable illusion. We’re only used to what we were before the brain injury. We’re used to being masters of our own agency. We’re used to keeping that silly drink safe automatically. Why can’t I be trusted to continue to do that? Do we have to have a safety mechanism for everything? Do I have to rub on tiger repellent because there might be tigers lurking to ambush me? Well, better safe than sorry they say. Maybe. But maybe we’re being overly cautious. What’s the harm in being safe than sorry? It’s a fair argument.

But by nature, I’m a risk taker in a way. Not in the same way as sky-diving, but more in the way of calculating my risks at a poker table or investing in real estate or with life choices such as quitting my job and moving to California. So, it’s against my nature to play the better safe than sorry route. I’m an explorer, a risk taker, and an adapter. I react and adapt to unforseen circumstances and form reactions and plans quickly. It’s what makes me good at my job and at playing games.I enjoy exercising this aspect of myself. I grow frustrated at jobs and situations where I’m not allowed to run freely with this aspect of myself. So, most companies like to mitigate or limit their risk. I tend not to do well in those kinds of companies. I do much better at companies who have no choice but to take risk and place the burden of that risk on its personel, namely and chiefly me. But it’s a risky move since I could literally die of a stroke the next day.

So for me, it’s weird not only to have to push a button to have someone watch me pee, but it’s even weirder to have to worry about the risk. It’s just something that I have never don’t and perhaps even can’t get in the habit of worrying about. Adapting to worsening circumstances and making the best of the situation is what my character is about. It’s hard to change that so late in life, even when my entire mind is wiped and begun anew. Perhaps there is something hard-wired. I don’t think so, because I’m writing this now, and I didn’t re-learn how to do that. So, I must have retained that character trait after my accident just as I have retained the ability to read, write, and speak and communicate and snark.

Anyway, until next post, I hope you all take care of you silly drinks, but only to the extent which makes you comfortable. Don’t go out of your way to avoid risks just because this post made you realize how fragile your silly drinks were. But acknowledge the risks and know that they exist. And acknowledge that by smoking, or not wearing a seat belt, or not wearing condoms with a new partner, that you are incurring a risk to your silly drink. But it’s your choice, just know what you’re getting yourself into and what your odds are.

Here are some stories of people who have dropped their silly drinks. It’s hard to deal with, and it’s fascinating how people adjust to it. Louis Theroux – A Different Brain.

 

 

 

No, Seriously, What Happened?

In a more serious tone, this is much closer to what really happened as explained by a Registered Nurse. My account is from my memory, which in light of what happened as described below, is understandably fractured.

From Jennifer:

“The original bleed was worse than I had thought. Not because anyone told me it wasn’t bad, but no one said it was, and Ming’s neuro exam had been so stable.
The original bleed and subsequent swelling of the brain in response to the injury caused a pretty significant right to left midline shift. That is, a fairly good part of the right side of the brain was pushed over into the left side because there was no where else for it to go. This is a kind of herniation. Ming has had serial CT’s that have all been pretty stable. No new bleed and only mild increase in swelling but nothing surprising. It is difficult to see the clot as they are doing quick CTs without contrast and he said an MRI is best to evaluate the bleed. That said, they do not expect any of these things to change significantly (improvement wise) for quite sometime. It could take a month to see any improvement in the swelling on scan. But a worsening would be obvious, and goes without saying, bad.
Since admission:
they have been managing his blood pressure, oral or IV depending on the circumstance (as he has now been in and out of the ICU three times).
Managing the clot with anti coagulation therapy, first heparin drip and now lovenox injections (which neurosurgery said that now with therapeutic levels of lovenox there is no indication to switch him back to heparin)
Managing his pain as much as they can non narcotic but recently have had to resort to narcotics as the pain has worsened.
This brings us to the swelling and the event that happened yesterday evening. They have been using 3% sodium solution with a goal of pulling extra fluid from the brain tissue to help relieve the pressure that is causing the pain and deficits. The bleed and swelling are both contributors to this midline shift. Well, he can’t stay on this solution forever as it will affect his kidneys and it’s hard to keep all of his other electrolyte in balance with that much sodium. Because his neuro exams had been so stable (aside from the seizure activity) they decided to start weaning the sodium solution. Ming’s body decided it wasn’t ready. As the day went on he started having increased headaches and nausea/vomiting. Then he declined rapidly with a significant drop in heart rate and stopped breathing. They quickly intubated. Luckily the response team included the Neurosurg fellow. He said he literally watched Ming’s pupil blow in front of him. Not that this is good by any standard but the fact that they were all there meant quick response. They gave him a drug called mannitol, which does the same thing the Na does only super fast. With the lowered Na infusion throughout the day Ming’s brain started swelling again. Only this time instead of pushing right to left it pushed down. All of it is bad, but down is really bad because this puts pressure on the brain stem which controls your heart rate and breathing. The Mannitol acted quickly, Heart rate recovered and pupils returned to equal and reactive. They took him for another scan and it still showed no significant change.
They left him intubated and lightly sedated overnight. Another video EEG which they plan to keep him on through today. They woke him by stopping the sedation several times overnight and did neuro exams. Of course he tried to pull out the tube each time but they had his wrists restrained. Once calmed he would follow commands and then they would give more meds and let him go back to sleep. This morning they turned off the sedation and he woke up and they extubated him. He was doing ok, I happened to call 15min after extubation, sleeping but waking easily and following commands. She said he was not speaking clearly, just kind of mumbling. But that could be all the drugs.
She said the EEG overnight did not show any further seizure activity. They had started him on Keppra the first time around and have now added Dilantin. These can make you super sleepy especially since he got a loading dose last night.
I asked the neurosurgeon what he thought as far as long term prognosis and why they weren’t doing anything more to relieve the pressure. The surgical intervention has risks that far outweigh the benefit given his current condition. I can explain it to you guys if you want me to, but since right now it’s not an option, I’ll skip it. He felt this event tells them they have to go much slower in weaning him off the Na. All things considered he felt Ming could make a close to if not full recovery, but it wasn’t going to be quick or easy. He said he was looking at minimum of a year of rehab.
All of this to be figured out once he is out of the woods for everything else. “

What happened? Intracranial hemorrage

Many of you know what happened to me. Many of you don’t. So, I thought I’d put this information all in one place so everyone can understand what’s happened to me. Feel free to “like” this post so that it propagates. Even in my brain-damaged state, I will understand that you are furthering the propagation of this information and not “liking” my brain bleeding.

I suffered a stroke, or a vascular event, as if getting a blood clot in your brain was some “event” like Comicon or the Lilith Fair or something. This “event” is a lot less fun and even worse food than both of those events.

So, the other day, Dawn, one of my caretakers at the adult care center asked me if I had died. I answered as honestly as I could, “I don’t think so.” Imagine to my surprise to find out that that answer was wrong. She asked me what happened when I was in the ICU. I told her the things I knew from other people telling me, which is primarily how I know things now because my memory of many things has been wiped out. I told her what had been told to me, that I had become “non-responsive” which is nurse talk for “he died” until they called a code on me which is more nurse talk for “everyone get the fuck over here now, someone is dying.” When you are non-responsive, you have basically reverted back to a meat-like status of not breathing and not having a heartbeat. But fortunately, it wasn’t for very long, although said things do damage to your brain over time, that amount of time wasn’t enough to cause my brain to entirely die which is dying for reals. However, from this state, I was able to come back and be able to type up this snarky summary today right now. Although technically I am a zombie, I’m hoping you guys won’t shoot me the next time you see me. My medical bills are high enough as it is right now. Now, although I was fortunate enough to come back from the unresponsive state after a few seconds, I was not lucky enough to beat the current record holder: Jesus at 3 full days. It all did happen near Easter, however. This all happened starting on April 6th.

I had had a headache for about a week after maybe working too hard and too late on a startup project. I went to Mark and Janine’s game night and played some Vampire with them. Afterwards, I got into my van and slept. I woke up the next morning feeling sick and threw up in a bucket I kept near the bed that normally holds some trash. I dumped out the puke into the toilet and started driving towards my primary care physician. Along the way, a car pulled in front of me at a stop light and I crashed into it! Now, I wasn’t feeling too well, and was concerned about the wet splashy noises that were coming from the bathroom, so I didn’t get out and exchange insurance information.

I continued onto the highway and went to my doctor’s appointment. Fortunately, I did so, because unbeknownst to me, I was dying of a brain hemorrage right then.

After I got to the doctor’s office, some people complained about my parking job. Apparently, you do a bad job of parking when your brain is bleeding. Go figure. So, they called security on me, and I was able to negotiate with the security guard to merely repark my car rather than actually drive it outside of the facility and park it in the street. And so I did repark well enough that the person behind me could get by and I ran to my doctor’s office. The staff there saw something wrong in me and my doctor’s husband, who is also a doctor, drove me to the Emergency Room at Stanford where they had an MRI. If you don’t know what that is, it’s a machine to take selfies of inside your brain.

From there, things escalated because they saw that I had had a “vascular event” which turned out to be an intercranial hemmorage or (ICH). In other words, I had had a type of stroke. This got me into the ICU at Stanford where I stayed for a couple of days.

During this stay is when I became “non-responsive”. Apparently, the bleed in my brain was causing pressure in my brain to push it around in a way where it shouldn’t be pushed around. The term I heard was “the pressure was pushing down on your brain stem and you became non-responsive.” They gave me salt directly into my IV which reduced the swelling and pressure and probably prevented me from dying right there.

I don’t remember any of this happening. This is all second-hand information I got from remembering what people told me. I’ll add to this later as I learn more. But so far, it’s been kind of hard to get this information at all. When it comes to brains, it turns out that we don’t really know a whole lot of how they work or don’t work. And so it goes in my case, too.

Since then, I’ve gone to a professional care facility and have been released to be on my own but carefully monitored by a staff of home-care nurses. I’ve been staying with Kristina and Dan Tomalesky, and they have been acting as my caretakers during this time and letting me stay with them in one of their rooms. They have been amazing in the help they have given me during this time and I don’t know how I can ever thank them enough. So, just know that they are the awesomest people in the world and give them more thanks for me whenever you see them.

I’ll write more about the experience as I feel up for it. Mostly these days, I’m taking it easy so that I can heal from this brain injury. Apparently, such a thing is possible. I’ve lost some function, but it doesn’t seem too bad. Although the odds of recovery are not great, in my specific case, it looks like I should make a nearly full recovery. That I can write this now is perhaps significant proof of my progress. I’m often told what I was or wasn’t capable of earlier because I have no memory of any of it so I need to be told second hand things about myself all the time.

I’ll write more about the metaphysical stuff and weird things that happened later. This is mostly just to get the information out there to people who don’t know what happened. It’s likely that I haven’t responded to emails or anything in the last month. And I don’t know exactly who knows or who doesn’t know, so this is just so people out there can now understand my situation a little bit better.