The Non-Compliant Patient

I am feeling much better and I hope I will continue the slow road back. Last week I had my last day of anti-viral medication and the home health care nurse came and removed my PICC line, what a relief. I feel much better psychologically now that I am medication free. I am still quite fatigued during the day but the headaches are pretty much gone which is a real relief.

I am non-compliant for two reasons:
1) I am completely blowing off the 'alleged' clot in my left calf and haven’t taken blood thinners, nor do I intend to. I just don’t think I have or ever had a clot. I saw the results of the sonogram, heck even was checking out the screen with the technician, however I don’t think I have a clot. Also I don’t have much faith that residents who pop in and out for just a few moments about 6 days per week can/should have such long term impact on my life. Being on blood thinners would be a major inconvenience (not as much as a Pulmonary Embolism but I won’t think about that much).
2) I also have no intentions to do any follow-up with the doctor that was assigned to me. I think I’m cool with my own brain, albeit a bit traumatized, and my own network. I just never felt that the docs (including residents) really gave enough of a shit to have me go back to them. Now of course if I have a relapse or start feeling really bad I will go back, but for now I’m good with not seeing any of them again…. Until rotations and/or residency that is ;-)

The non-compliant patient is an empowered patient, and the empowered patient feels good.

I'm Out

Last nite I got out of the hospital. I was laying in my hospital bed Monday nite and decided that enough was enough. My buddy Jim had told me more than a week ago that I would need to find the strength to be proactive and be my own ‘advocate’ for my care. Well on Monday as I was laying there amongst the beeping, lights, and activity in the hallway I decided that I was gonna walk out of the hospital Tuesday nite, no matter what. I Emailed Jim of my intentions right then and it was done.

I’m walking out of this hospital Tuesday nite.

Now this decision didn’t just come out of the blue. On Sunday AM my attending physician told me I was responding well to the anti-viral medication, he was right I was finally starting to feel a bit better. He said he’d have to refer to the ID (Infectious Disease) docs to determine how many days we would need to continue the anti-viral therapy. My infection is in the meningis, which lines the brain and spinal cord, and the anti-viral must cross the blood brain barrier. Taking the anti-viral orally doesn’t produce enough levels to do this so I would have to continue the anti-viral, for as long as the ID docs say, through IV. That same Sunday AM the doc also let me know that this drug could be administered on an outpatient basis or at home using a PICC line. Even though I’d never heard of a PICC line I was starting to feel better already. If you’re interested a PICC line is used to (self) administer IV medication, see this link for more.

In my mind then the only remaining questions were, how long do I need the anti-viral medication and what is the process for getting it?
On Monday I discussed the PICC line with my (resident) physician and he indicated he wrote the order. Cool we were on our way. Well my sister and I waited at the hospital all afternoon and no PICC line, no people even talking about a PICC line. I asked, they said the order was written. I didn’t care about a freakin’ order, I cared about putting the damn line in my arm to my heart.
I am sure this frustration, along with getting better to the point where being in the hospital made me sick, is what drove my Monday nite line in the sand.
Well on Tuesday morning I began pushing for discharge. It was odd to me that they weren’t wanting me out, not because I was being an A-hole or anything but because I wasn’t really making them any money by sitting there and recovering. I could do that at home. Win Win. I get to be home and they make another bed available. Well this didn’t seem to be happening. Beginning at 7am I began asking, “when will the PICC line be put in?”
The more I asked, the more things started to happen.
I must pause here to point out I feel as if I am a very empowered individual, but laying there for days (weeks!) with an IV in you and feeling bad really castrated me. Only with Jim’s urging, along of course with my recovery and feeling better, was I able to insist and take control. I think this is a very important part of the healing process.

I’m walking out of this hospital tonite.

The PICC line went in at 10:30am and we were ready to go. There was the matter of the blood clot (allegedly because I still don’t believe I have a clot. I’m sitting here staring down my blood thinners refusing to take them… for now).
Now we had to coordinate home nursing to bring the anti-viral meds and ‘teach’ me how to run them through the IV line.
This necessitated a lot of moving parts be brought together. Finance, discharge planning, home care, insurance, nurses, and other folks that I probably missed among the myriad of people stopping by the room.

I’m walking out of this hospital tonite.

We ran into an insurance nitemare, I will blog this later, but finally got thru everything and around 6:30pm learned I would be able to go home after my 9pm anti-viral treatment (I need them every 8 hours through the 23rd and they take about an hour each).
I was dressed and ready to go as we administered this last treatment in the hospital and at around 11:15 I walked out of the hospital in the same clothes I arrived in on the late afternoon of July 4th. My sis and I had a real time trying to get my scripts filled, we left empty handed because of insurance issues I’ll detail later, but at that point I didn’t care. I was leaving.
I walked out and was in my truck by 11:27pm. For the first time in weeks I felt like I’d accomplished something.

Sunday Update

First of all, thanks so much for the calls, Emails and well wishes. They really do help! I’ll try to check the blog comments more frequently as I slowly get back. That’s the best way to keep in touch at this point.

Sunday nite again and I am still in the hospital. Day 11. I know I’m getting better though because instead of feeling miserable most of the day I actually am getting tired of being here. Earlier this week was rough as the headaches were intense, they were beating the morphine down. This is tough for a dude like me that never gets headaches and doesn’t have a very developed coping mechanism. Although the early part of the week was very rough, the last few days have been much better as the anti-viral medication has kicked in and begun to work. I have been off of the morphine since early Thursday and in the past few days I have only needed the vicodin to manage the headache pain. Once the headache pain came under control fatigue set in, fatigue like I’d never experienced. It was difficult to even get out of bed. I did a lot of sleeping and would take that any day to the head pain. Saturday was a lot better on both fronts and tonite I actually went for a walk outside with Charlene, who came in on Wednesday and has been a great help in providing support and updating my parents and family on my condition. Anyway, it was great to be outside for the first time since the 4th of July.
Tomorrow morning the parade of residents/attendings come by to tell me if I can go home Monday, I'm thinking I should be out of here by Tuesday and begin the long (4-6 week) road back to feeling normal again.
I’m running out of gas so I need to sign off. I’m looking forward to going outside again tomorrow.

Still on the other side

Well it is Sunday nite and I am still in the hospital. I’ve been here since I had to return Wednesday nite with more intense headaches that wee positional, intermittent and not really controlled with Advil.

The docs still think I have viral meningitis

• CSF readings (6.27.2007/7.6.2007):
• RBC's = 4 / 4 – Red Blood Cells are normal and consistent
• WBC's = 534 / 265 – means with a strong immune system, less WBCs (White Blood Cells) are found, which should mean less WBCs are needed so I am successfully fighting the infection
• PMN = 2% / 0%
• Mononuclear = 98% / 100% - type of WBCs that are fighting the infection
• Protein = 154 / 169 (15-45 normal) – they’re not sure about this
• Glucose = 33 / 18 (40 - 50 normal) – troubling that glucose is lower, not sure what to make of this
• PH = ?? / 8.0

No organisms, CSF was clear (both samples)

I am actually feeling better this evening, the last few hours have been pretty good. I hadn’t been on any pain meds for about 5 hours, was just fight through it, and I just went on Toradol which seems to be a better solution than the narcotics as it dosn’t seem to cause that whacked out feeling.
Late Saturday nite I noticed my right calf was a bit sore, I mentioned it to one of the nurses and they ordered a ultrasound earlier this morning. Well it came back that I had a clot.. jeez. The clot is not ‘official’ as the report hasn’t come back yet however the technician noted the clot and they have me on heparin. I've never been on thinners and of course never had a clot. To be honest I really didn't (don't) think I have one because it really didn't bother me that much. Part of me wishes I never mentioned it ;-)

I’m still not sure when I’ll be out, the Infections Disease doc that visited me yesterday and today indicated we should get the results of Friday’s Lumbar Puncture (Spinal Tap), and the many blood tests, Monday. I’ll know much more then.
Thanks for the thoughts and prayers, keep them coming!

It’s a Running Start!

Today has been an OK day. I arrived at lecture at 7:50 and the Professor actually started a few minutes early. I was a bit shocked when he started with Lecture 3, that’s right #3! Hmmm I knew I had missed orientation but gosh, 2 lectures. Well come to find out there was a full lecture on Friday which I had missed. The good news is that it was filled with announcements and they didn’t even post the slides. Lecture is 2 hours, this is a 6 credit Anatomy course, so we go through 2 lectures in a single 2 hour lecture morning. I got through lecture fine, we are covering the back and did the breast from 9-10 today. Very interesting as Professor Rechtie (I think that’s his name) is known as a fast talker and boy does he earn that label. He really knows his stuff though as he pointed out a few errors on the slides that I’m sure the class of 200 would’ve never noticed. I glanced around the room and saw 3 other Black faces, all female. Hmmm… they also joined my lab group later that morning when we had to form small ‘teams’. Physically I got through lecture just fine and it was time to hit the lab. I JUST found out from a dude next to me I was in the ‘red’ group which met at 10:15 which meant there was no break between lecture and lab but I managed just fine.

At the lab we went through the normal introduction stuff, treat the cadavers with dignity, come on time, etc. No worries there. One of the Black girls leaned over and asked if I had my iClicker yet. “My what?”. Apparently this is a device used for in class quizzes. It looks like a remote control and has A, B, C, D E and Power buttons on it. Very simple but I had never heard of one. I went up to the Prof. as we were getting started and he informed me I was supposed to have one, and have it registered, by June 29th. Sorry Prof. He was pretty cool about it but let me know I needed to get one ASAP, which of course I did.
Lab was cool, after the intros and admin stuff we got right to it. We went into the room with the cadavers and simply poked around. Of course we had an assignment, which I didn’t know about, but I was able to pair up with the sistahs and another white girl who just asked if she could join us. Our group was set, I asked one of them, the one who introduced me to the iClicker, if they would get suspicious with the ONLY Black folks just happening to be in the same lab group and we had a laugh about that. Heck, there are 4 lab sections and we all ended up in the same one! She actually mentioned there was another Black dude who looked like he was from “East Africa” but no one saw him in lecture this AM. I’ll keep an eye out.

The cadavers were cool. They in general stay 3 years before they are cremated and the remains go back to the family. It is really amazing to see our internal organs, muscles, nerves on display like that. It was not ‘gross’ (couldn’t resist that) but actually quite enlightening. The smell was kinda bad from the embalming but overall very manageable. I learned later that the lab was an absolutely critical part of learning Anatomy. They encouraged us to spend an extra 2 hours there per day, I am beginning to see the benefits of that. We actually were quizzing each other a bit and had to call in the Professors that were milling about to get some clarity. Some takeaways:

• The liver is HUGE
• Fat deposits can form on the large intestine. They look like butterscotch lollipops hanging of the large intestine.
• The brain cavity is not all that big
• We are all of course very unique. I’m not sure if because of the dissection technique or what but the bodies, upon careful examination, can look very different in terms of the intestines and even skin.

After class our small group walked to a local Indian spot to bond a bit more and collaborate on an online quiz that is due midnight Tuesday that, again, I was just hearing about then. I wasn’t sure how I’d do with a real meal, especially an Indian meal, but the food was moderately spiced and I found myself eating the first ‘meal’ I’d had in over a week. Good stuff.
On the way back I broke off to buy a 2” binder and check out the local gym. It will cost about $25/month for a year commitment and is very centrally located. I’m gonna have to do something so I think I’ll join once this pesky virus has left me.
On the way back to campus I had a bunch of stuff to do, among them pick up the orientation packet and pay for my ‘scribe’ notes. Scribes are the notes students are paid to take from lecture. I hear they are a good augmentation to what we hear and for $80 I thought the price was right. I think they should arrive by Thursday.

After that I was out of it. It was almost 4pm and I was in the Student Services office paying for my Scribes and talking to a wonderful woman in that area who seemed interested in hearing about my first week at MSU. As I was telling her about it I must’ve been crashing as she told me I looked like I needed a break, which of course I did. I laid down and tried to gain some strength back. By 7:30 it was time to get up to attend a review session voluntarily put on by Dr. Bice… which started at 7pm. I walked in late and still trying to get some energy. The session lasted until around 8:45, was VERY useful, and gave me the necessary energy to set up my MSU Email, print the slides from lecture and other random stuff. We had a funny moment in the computer lab as two of the guys there all of a sudden said, “oh my gosh, we need to find a place to pray!” These were 2 Muslim fellas and needed to get to it. They were real cool about it and I told them they could just drop and do their thing right there, heck I might need to join them! They found their spot somewhere else and got righteous. Good for them, gotta respect the faith.

After getting kicked out of the lab at 10:30, they closed at 10:00 but I stuck around. It was back to the room to review lecture notes and try to learn.

My brain was long tired so I did some busy work; Emailing my team, coordinating my notebook, writing this. It’s time to crash and get back to it tomorrow. Thank goodness for the 4th of July, NO CLASS.

Let the Classes Begin!

Well tomorrow is my first day of class, “All Anatomy, all the time until the end of August” and I can honestly say today has been one of my best feeling days in quite a while. I still need to chew 800 mg of ibuprofen about 4 times a day (every 6-8 hours) to stave off this nasty headache, but I’m getting used to taking pills. My main concern has been the ‘blahs’, normally I am a pretty high energy person however these last few days have been different. In addition to the photosensitivity, and sensitivity to sound, the viral infection seems to just make you feel like doing nothing. B L A H S. Friday I didn’t even leave my room and Saturday I only left to see the Condo I am purchasing, I then came back to the room and just crashed.

Today though was different. I walked around campus. I went by where we’ll have Anatomy lecture in the AM, it’s at the Veterinary school about a 10 minute walk away, and checked out some good ole fashion pick up basketball. I also was able to forage for lockers, something my 2nd year buddy Juan told me to do before classes started, and enjoyed just being out.

I spoke with my buddy Dr. Jim this AM and he told me I’d need to take the ibuprofen and expect to feel this way for about two more weeks. I guess I can do that. I also spoke to my sis today and she mentioned to not let performing below my capabilities drive me too crazy, even though I know it will ;-) I would say I feel about 70% and still have problems concentrating for ‘long’ stretches.

I’m hoping to some semblance of normalcy after about two weeks, until then I’ll just have to fight through it, while of course managing my looming insanity.

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Since “Netter” is pretty much synonymous with medical anatomy I decided to try to find out more about who this guy is/was. This link seems to tell a good story.
I found the picture above on that link, it contains the caption: Dr. Netter also developed a variety of unusual medical art projects including building the seven-foot "transparent woman" for the San Francisco Golden Gate Exposition, Which depicted the menstrual process, the development and birth of a baby and the physical and sexual development of a woman.
(Image courtesy Museum of Science and Industry, Chicago.)