3:30pm

I had kind of a disturbing morning... not really related to this blog, just thinking too much.

Today at 3:30pm I meet with Dr. Macken to turn on the device. I'm pretty nervous. Not for the appointment, but for the first couple days and first couple months after it's on. It'll hopefully help in the end, but it's a foreign object... I'll leave it at that.

Today

So when I first had Encephalitis in August of 2008 I was on an IV for a week or two and lost 40 pounds. I don't recommend that diet but it was a "perk" of sorts. In the months following I ate very healthy, not even diet soda and I was limiting my food intake. I thought it was easy to live like this, after all I couldn't really have caffeine or alcohol or anything that one would consider a vice because I felt like it would give me a seizure. I was very, very careful.

(Just had a small seizure)

I've had two spaces in time where I didn't have a seizure so I was able to drive, but now I haven't driven since February of 2010. Since then I've had one or two seizures a month. Some where I stay conscious and some where I pass out. Those obviously are the more serious seizures and I need help afterwards. I don't remember much and can't understand english; I feel very confused.

Since then I've backslid. By "backslide" I mean I've started eating worse, drinking diet soda, coffee (caffeine) and have been known to have a few alcoholic drinks. I've gained back 10-12 lbs. and really feel too depressed to do anything about it. It could be the medication or just mood but for me to get into a routine to lose the weight would be a task.

Life isn't too rewarding. I told Sara that my two favorite parts of my day are seeing her when she picks me up from work and when I kiss her goodnight, adjusting the covers and taking that final breath before I fall asleep. Again, it could be medication but if I had to guess I'd say it's 30-40% medication and the other percentage would be our situation here in Illinois. It could be the feeling of dependence on friends and Sara for transportation, constant bad news from doctors (mostly NO news), actually looking forward to surgeries. The smell of NW Hospital comforts me and I wish I could stay.

The hospital is my vacation. I basically take my vacation days and hitch a ride to the city with my favorite girl to where nurses and doctors serve me, constantly asking if I'm ok and if there's anything I need. Food is brought to me, there's TV and movies to watch all night if I want, pre-warmed blankets. I could name 100 more perks. The only thing that I have to tolerate is getting shots twice a day and possibly having a seizure (which I worry about at home anyway). Loyola and NW Hospital have been the only escapes from monotony that I've had in many years.

When opening the box for the VNS device I had implanted two weeks ago there are two magnets used for switching on the device automatically if I'm having a seizure and two instruction manuals. One for patients with Epilepsy and the other manual is for patients with Depression. The device is known to improve the mood, memory skills and productivity of it's users. Yippy! I need a machine in my chest to make me somewhat normal. I've said to Sara that I want to know if she notices anything different in my behavior once they turn on the device... good or bad, I want to know. I've been binging a bit for the last couple weeks, basically since the surgery. My guess is that I'm banking on the device improving my mood and helping me control my urge to eat or drink or over-indulging in any way.

My two biggest fears are that I stay the same, gain a bunch of weight and basically feel like I have no control over myself (like now) and the other is becoming a semi-cyborg with a creepy fake smile. There's got to be a happy middle. There's got to be.

Post-Op Exam

I'll try not to complain too much more about the Neurological Surgery Department at NW but I have to give one last shot. We had an appointment yesterday for the doctor to look at my scars to see if everything is healing ok. The nurse said for us to be prompt and be there right at 2pm. We understood because we had to move back the appointment from 10:30am to 2pm for work reasons. Of course we arrived at 1:50pm and waited for more than a half-hour. Finally the nurse (who we've continually had problems with... attitude) waives us in and into a room. I sit down hoping to see the doctor soon and she says, "Let's see'em." Confused, I stand back up, take my coat off and unbutton my shirt for HER to see the scars. She says that everything looks good and "that's it."

So, let's get this straight. We take a half day off work, drive downtown... in sort of a hurry to get there by 2pm for you to take a 3 second look at the scars. I could've told you they look ok! If they started to look abnormal I would call! (Of course she wouldn't get back to me for a couple days, but still!)

Again... NW Neurology Department = Amazing. NW Neurological Surgery Department = well, let's just say extremely frustrating. I'm not going to drop on them too much because the surgery day was a great experience, the device is sitting well, etc. You know, it might just be Dr. Rosenow's nurse! I mean, he's eccentric, but he is very good. She needs to be taken down a peg.

After the "appointment" we went to Water Tower Place, bought Sara her Christmas present (new coat) and had a very nice dinner. After that we went home, watched some crappy TV and downloaded a new album by one our favorite bands (Girl Talk). The night actually ended pretty well.

Next week, Monday, is the appointment to turn ON the device. That'll be a long blog entry for sure.

Recovery

Well, I'm back. I took some time to rest and see how the days after the surgery played out. Everything seems to be ok. When I got home late on Friday I was sore mostly in my throat and my voice didn't work properly. From experience, that's from the tube that they "jam" down your throat for oxygen during the procedure. The rest of my body was numb, literally, even today I can't feel the skin surrounding the incisions. Very creepy feeling. Drugs have helped. Not so much for stinging pain as one would expect but more from feeling my body "excepting" the device and wire that runs from my chest to the Vegus Nerve in my neck. It's a deep pressure that deserves drugs to sustain. Medication has also helped me sleep because I have to lay in an awkward position all night to avoid "popping a stitch" (as we've been joking about).

The incisions are disgusting. They're red and swollen and because I can't really touch them, they still have the marker where the surgeons chose to cut. I can feel, very carefully, where there device sits and the wire running up my chest into the neck. It makes it's way over my collarbone so there's a bump... gross.

Laughing, coughing, swallowing has been difficult because I can feel the pressure on the incision, like it's going to open. The chest incision is on the left side of my chest near the armpit, pretty much where you would expect a breast implant would be inserted, so left arm movement is out of the question. Today it's better, but again, I can feel the stretching of the incision and the pressure/pain from the chest pocket they created for the device under the skin. Not complaining, just trying to explain the sensation.

I feel very grateful that I have someone like Sara to help me through all of this. Not just physical support, but for the emotional toll WE'VE taken, as well. I feel helpless at times. I get depressed very easily because I want to be a man, able to support her as a husband should be able to do, but couldn't even take a shower or put on underwear without her help the last couple of days (this happened when I had my shoulder surgery, as well). I feel so vulnerable sitting on the tub edge, bare naked, while she helps me wash my hair, underarms and chest... careful around the incisions. Then she supports me while I stand up to wash... well... below the waist. She sees me as I truly am... scarred on my neck, chest and back... pale, out of shape and shivering. I feel humiliated. She's my wife, but I have to admit to wondering why anyone would put themselves through this on a day-to-day basis. "In sickness and in health," I guess.

All Ready

Dr. Murray from NW called this morning and informed me that my tests from Friday came back normal. I had tests done on Thursday and had to have them again on Friday because she said the first tests looked "abnormal." She said that the second test was taken just to be sure of the abnormality (if there was one) so the doctors can be aware of it during surgery, that it wouldn't necessarily move back the surgery date.

I've talked to a representative at Cyberonics (the company that manufactures the device) for some last minute questions and I think I have enough information to feel comfortable before and after the procedure. Once they turn the device on I'll know what to expect.

I'm ready and excited. (By the way I just had a seizure while writing this.)

Pre-Op

Yesterday afternoon I had my pre-op for surgery next week. They've moved the date to Friday the 5th from the Thursday the 4th. We're a little frustrated about the whole process, especially the Neuro-Surgery department because they've been giving us the run-around (filling out the same papers three times, switching dates at the last minute, etc.). When I was at the pre-op appointment the doctor who was giving me a physical and basically letting me ask questions was very helpful. We talked about my history and she compared my story with some other patients that have been through the system.

Apparently there was a guy my age who had seizures just as often as me but it was because he had a small brain tumor just under his forehead. All his medicines weren't working to shrink the tumor and stop his seizures so they opted for surgery. He came in with a "menu" of his medications and dosages (just like me) but he lived alone and took public transportation. He had to hold the "menu" while on the train with directions to his apartment and instructions that if he had a seizure that his doctors were at NW Memorial. Wow.

I love Sara and I know she'd be with me no matter what and I feel horrible about this guy. If I lived alone I don't know what I would do. How would I work without living close enough to take the train or bus? It's not safe to ride a bike, especially when it starts to get cold and snowy. To have instructions around my neck to warn people about what to do if I have a seizure. Sara has always been there, she directs me to lay down or she can get help if it's a larger seizure. This guy obviously doesn't have this. Horrible, but I respect his courage.

Next Friday is the VNS surgery. I'll know the exact time the Thursday before the procedure and I've already started to "prep." I did this for my shoulder surgery, too. Stay off vitamins and pain medication because it thins your blood, etc.

****

Whoops! As I was writing this the doctor at the pre-op clinic told me that my blood came back a little abnormal and I have to come back in this afternoon! What a surprise! Of course there had to be another obstacle. Sara is out all of next week for a conference but she agreed to take a half sick day to take me downtown. She doesn't even have to park the car... they said just to come up and they take my blood without a wait. I'll take Sara shopping downtown or to a nice dinner to make up for yesterday and especially today. She deserves all the credit in the world. I always say to her that "she picked a broken one" but she yells at me for saying that. She did pick a broken one but I know this experience, no matter how long it lasts, has brought us closer than most people could've ever thought possible. I hope she needs me as much as I need her.

10/17/10 Seizure

I still feel postictal (hangover after a seizure) so I might keep this entry shorter if I can.

Last night, after visiting my Mom in Beloit for her birthday, Sara and I came home and I made chili. Sara didn't feel good and I know she loves when I make chili, especially in the fall. After dinner, about 7:00pm, I was in the bathroom washing my hands and I noticed that my right hand was going numb. It started out slow and then felt like it was swelling, kind of balloon feeling. I kept looking at it to make sure it didn't look swollen or red... but it looked normal. Then the feeling started to make it's way up my arm. I knew then I had to find the bed and lay there hoping the feeling would pass.

The pain and swelling feeling reached my shoulder and instantly shot up my neck and into my brain... so fast that all I could do is make some gurgling sounds to warn Sara that I was having a seizure. I could feel the "swelling" in my brain like it was going to burst. While this was happening on the outer layer of my brain near the skull, the core of my brain felt like a fist squeezing and squeezing (I'm not self-diagnosing, so a professional will have to interpret what I'm saying). I grabbed onto the edge of the mattress, stiffened my arms and shook my head to the right and left because the pain was so excruciating. Sara ran into the room and started giving me directions to move away from the edge of the bed and she tried to pry my hand from the edge of the mattress. All I could do was hear her and look at her, all the while I was shaking my head in pain. My body was out of my control.

That's all I remember. I regained consciousness laying on my side in bed with the covers over me. She had taken off my shoes, etc. but I don't remember all of that. I asked Sara if I ever passed out (closed my eyes) and she said I was awake with my eyes open for all of it.

I've never been conscious for that long during a seizure of that magnitude. I'll never forget the pain.

I bit my tongue in three places and Sara cleaned the blood off my face, she said it was a "good amount of blood." This happens sometimes but not this bad, I'm having a hard time talking, eating and drinking this morning. I'm afraid to take pain medication because I already have too many drugs in my body and not a lot of food.

That's it for now. I'll write more after I feel "normal".