Late treatments suck
Feeling frustrated today. Impatient, maybe. I really dislike late day treatments. A 1:30 means a 12:00 hospital arrival, a 4:00 hospital departure, and no food until who knows when. It basically shoots my whole day.
I am unhappy that I have to burden my whole family in going to the hospital with me for several hours. It’s the kids’ holiday break, and its not fair to them. I am also unhappy, and know I shouldn’t be, that I’m not more productive. It seems like EVERYTHING is hard to do right now. Making a simple plan to take some xmas lights down could have as well been brain surgery. And I feel like Melissa is doing everything right now. She hasn’t complained once. And she probably won’t, but I don’t like not contributing.
I have been wondering “when the good days are”. Treatment days aren’t good. I’m nervous before and feel like hell after. The day after treatment is ok, at best. I feel wiped out all day and confused. Last week, I had from Friday until Wednesday with no treatment. Saturday was bad, Sunday and Monday were good, but by Tuesday things were going down hill again. Maybe that was insurance related, and maybe the treatment was “wearing off”. If the latter, however, at what point do the treatments start having a long effect? I’ll be at 10 after today. I will only get 2 treatments next week because of New Years. I’m being impatient and expecting too much, I know. That’s me. But I need a point at which I know, with some certainty, that I’m not wasting my time and my family’s time. I think I already know that. I can see too much improvement in those days that ARE good, and also in even the days that aren’t so good (they aren’t as bad as bad days used to be). But I would like to understand where the mood up and down stops and the mood net improvement becomes noticeable. And, honestly, with the cognitive acuity I am felling I am experiencing today, none of this little ramble might be making sense.
Time to go get hooked up for another jolt. If I wake up with another cut in my mouth, I’m kicking somebody’s ass.
I am now sure that the duration of seizure is directly proportional to the level of bewildered following. My seizure today was the best (longest) yet: 42 seconds peripheral and 80 seconds EEG. My doc doubled the amount of caffeine she used from 500 to 1000mg, which I am told was the likely reason for the better seizure. I was pre-medicated with Torodol for headache and Zofran for nausea. My Beck score today was 30, which is a little higher than Wednesday. I think that that tool has outlived its usefulness with me. My score depends on mood at that time, and how I read the questions (context). My doc mentioned switching to another tool for next time. I didn’t wake up with a headache, but one developed soon thereafter. I haven’t had a problem with nausea from the procedures, but the pain meds usually cause it. They also pre-medicated with Pepsid, as always, to reduce the risk of nausea during the procedure. I got 2mg of Fentanyl right as I woke up, without asking for it. The headache that developed was on top of the Fentanyl. My doc had written orders for Dilaudid, another narcotic pain killer. Morphine had been making me a little nauseous. As it turns out, Dilaudid makes me a WHOLE LOT nauseous. I had more Zofran in Recovery II, and then Dramamine. I got a little better before being discharged, but the whole ride home was a battle to keep from being sick.
I learned today that last time, the anesthesiologist used a tool to measure my level of unconsciousness. I can’t remember the name. But it measures consciousness from a baseline of 85 downward. 60 is considered unconscious. Last treatment, I was at 35, which is what it took to get my vitals to a level where the anesthesiologist felt that I was far enough under.
Stats: I rolled into the OR at 1:35 and was in Recovery I at 1:55. It seemed like it took them longer to put me to sleep this time, and my IV was causing problems (wasn’t flowing as well as it should have been.) That had me a bit nervous. I certainly didn’t want to go to sleep on a functioning IV, have it stop flowing, and be waking up just in time for the seizure. None of that happened, but that didn’t stop me from worrying about it. I was in Recovery I until 3:35. Again, the length of the seizure, I think, had much to do with recovery time. I was in Recovery II until 4:30 (mostly trying to shake the nausea from the Dilaudid.)
I was clueless when I woke up in Recovery I today. It seems like I woke up and was awake for a few minutes before any real cerebral activity started. After a few minutes, my nurse said “Hi, you are in Recovery.” I was amazed. At that point, I couldn’t remember pre-op or the OR. It was all just a big blank. Much of that time has come back to me now, but it took a while. I was confused about a lot of things when I woke. Actually, I was confused about just about everything…nothing was really clear. But, now, I can’t seem to remember any of it. Very strange. Things from today are slowly coming back into my memory. But they may take a while to fully re-populate. This was, in relation to previous treatments, a doozy.
I am unhappy that I have to burden my whole family in going to the hospital with me for several hours. It’s the kids’ holiday break, and its not fair to them. I am also unhappy, and know I shouldn’t be, that I’m not more productive. It seems like EVERYTHING is hard to do right now. Making a simple plan to take some xmas lights down could have as well been brain surgery. And I feel like Melissa is doing everything right now. She hasn’t complained once. And she probably won’t, but I don’t like not contributing.
I have been wondering “when the good days are”. Treatment days aren’t good. I’m nervous before and feel like hell after. The day after treatment is ok, at best. I feel wiped out all day and confused. Last week, I had from Friday until Wednesday with no treatment. Saturday was bad, Sunday and Monday were good, but by Tuesday things were going down hill again. Maybe that was insurance related, and maybe the treatment was “wearing off”. If the latter, however, at what point do the treatments start having a long effect? I’ll be at 10 after today. I will only get 2 treatments next week because of New Years. I’m being impatient and expecting too much, I know. That’s me. But I need a point at which I know, with some certainty, that I’m not wasting my time and my family’s time. I think I already know that. I can see too much improvement in those days that ARE good, and also in even the days that aren’t so good (they aren’t as bad as bad days used to be). But I would like to understand where the mood up and down stops and the mood net improvement becomes noticeable. And, honestly, with the cognitive acuity I am felling I am experiencing today, none of this little ramble might be making sense.
Time to go get hooked up for another jolt. If I wake up with another cut in my mouth, I’m kicking somebody’s ass.
I am now sure that the duration of seizure is directly proportional to the level of bewildered following. My seizure today was the best (longest) yet: 42 seconds peripheral and 80 seconds EEG. My doc doubled the amount of caffeine she used from 500 to 1000mg, which I am told was the likely reason for the better seizure. I was pre-medicated with Torodol for headache and Zofran for nausea. My Beck score today was 30, which is a little higher than Wednesday. I think that that tool has outlived its usefulness with me. My score depends on mood at that time, and how I read the questions (context). My doc mentioned switching to another tool for next time. I didn’t wake up with a headache, but one developed soon thereafter. I haven’t had a problem with nausea from the procedures, but the pain meds usually cause it. They also pre-medicated with Pepsid, as always, to reduce the risk of nausea during the procedure. I got 2mg of Fentanyl right as I woke up, without asking for it. The headache that developed was on top of the Fentanyl. My doc had written orders for Dilaudid, another narcotic pain killer. Morphine had been making me a little nauseous. As it turns out, Dilaudid makes me a WHOLE LOT nauseous. I had more Zofran in Recovery II, and then Dramamine. I got a little better before being discharged, but the whole ride home was a battle to keep from being sick.
I learned today that last time, the anesthesiologist used a tool to measure my level of unconsciousness. I can’t remember the name. But it measures consciousness from a baseline of 85 downward. 60 is considered unconscious. Last treatment, I was at 35, which is what it took to get my vitals to a level where the anesthesiologist felt that I was far enough under.
Stats: I rolled into the OR at 1:35 and was in Recovery I at 1:55. It seemed like it took them longer to put me to sleep this time, and my IV was causing problems (wasn’t flowing as well as it should have been.) That had me a bit nervous. I certainly didn’t want to go to sleep on a functioning IV, have it stop flowing, and be waking up just in time for the seizure. None of that happened, but that didn’t stop me from worrying about it. I was in Recovery I until 3:35. Again, the length of the seizure, I think, had much to do with recovery time. I was in Recovery II until 4:30 (mostly trying to shake the nausea from the Dilaudid.)
I was clueless when I woke up in Recovery I today. It seems like I woke up and was awake for a few minutes before any real cerebral activity started. After a few minutes, my nurse said “Hi, you are in Recovery.” I was amazed. At that point, I couldn’t remember pre-op or the OR. It was all just a big blank. Much of that time has come back to me now, but it took a while. I was confused about a lot of things when I woke. Actually, I was confused about just about everything…nothing was really clear. But, now, I can’t seem to remember any of it. Very strange. Things from today are slowly coming back into my memory. But they may take a while to fully re-populate. This was, in relation to previous treatments, a doozy.
posted by DeMental at 10:17 AM
0 Comments:
Post a Comment
<< Home