22

I've been without Internet access since I moved rooms, but I'm back at home for a few hours tonight on a day pass to take care of some errands before I head back to the hospital. I'm in a semi-private room, and the ward has had a lot of empty beds for the last week, so I've been fortunate to have the room to myself for the week except for one night on Tuesday.

St. Paul's is the inner city hospital that serves the downtown eastside, and the street people use it as a clinic to get fixed up and to get their antibiotics when they go too far with their addictions. However, this week being welfare Wednesday and also really nice weather, they've all left the hospital to do whatever they do on the street. They really know how to use the social system and how long to stay in the hospital to maximize disability payouts (on top of EI payments). I have stories to tell and will write about them as I get time online.

Many of the street people who came into my room were suffering withdrawal from the drugs or alcohol they were on and were completely delusional. They would turn over on their beds, bending the IV line and causing the alarm on the IV pump to go off. The alarm is loud and they just slept right through it. At times it would go on for half an hour before a nurse came by and fixed the problem. It is so nice being in a room with no interruptions and that is completely dark.

I finished my last plex treatment today. The hemocatheter used to hook me up to the machine was also taken out. I will sleep much better tonight without it dangling from below my shoulder. I fell down two nights ago and thought I had sprained my left ankle. The physiotherapist looked at it the next morning and said it was just a stretched muscle. The pain is still there a bit when I move my ankle in a certain way, but is mostly gone. It was my third fall in the hospital (the first was the day I had the biopsy done on my thigh and the second was getting out of bed).

I'm feeling better and noticing some small improvements. A few weeks ago, I was having trouble raising my arm to wash my shoulder, and now I am able to do that. It's nothing big, but it is promising. Recovery is still not going to be easy and it will take a lot of time. Now we wait and see if I start showing some strength gain or if I go back to losing strength.

The doctors are talking about doing another biopsy. This time it will be both a nerve and muscle biopsy. They want to rule out vasculitis, which is supposed to share some of the symptoms that I have. I really don't want to go through another biopsy, and removing part of a nerve means I lose my sense of sensation wherever they take it from for the rest of my life.

21

A quick update, Dan has been moved from room 25 to 23. New phone extension is 67723.

20

The diagnosis is acute motor axonal neuropathy (AMAN). It's curable but will take a very long time. At least months. It is part of the Guillain Barre Syndrome family and is an autoimmune condition.

It is most common in China in children but has been known to happen in North America.

The autoimmune attack is on the motor neurons, so the treatment is a plasma exchange. Blood is circulated out of my body, the plasma is removed and replaced with albumin, then goes back into me. Doing that removes the antibodies that are attacking my nerves. Unfortunately, nerves don't just regrow immediately and so a recovery will take a very long time.

I'm hesitant to say this is good news until the treatment starts showing results.

19

I had a lumbar puncture done yesterday. They wanted to look at the protein level in my spinal fluid. I felt fine all day until about 10:00 at night when the anaesthetic finally wore off. Then the pain came. The doctor said this morning that the pain was from the anaesthetic wearing off and my skin or muscles returning back from a really contracted state to normal really fast. He came by early this morning and explained it to me, but I fell back asleep and can't really remember everything he said. A pair of T3s helped to kill the pain last night and I felt really relaxed all night. The other side effect is that the ache in my lower legs went away for the night too, so I wasn't tossing around as much.

My parents ended up staying until midnight. I would have preferred if they didn't see me in pain. They worry enough.

I'm getting tapered off the steroids. I'm down to 20mg x 2 per day from 30mg x 2. The doctors aren't seeing the results they're looking for. They are suggesting something called IVIG. I don't remember everything he said this morning, but it is supposed to be some immunosuppressant made from about 40 human donors. The idea is that at least one of them can contribute something that will help me. I'll have to do more research to learn more about the treatment, but it is a much lower risk than steroids as long as I don't have an allergic reaction to it. The problem with this treatment is that if it works, the doctors won't know the cause. They don't like that, but I really don't care. I'm sure they will write a research paper on me when all is done.

Thanks to everyone who is visiting. Friends are doing little things like grabbing the phone when I can't reach it or getting hot water. It doesn't seem like much but it really helps me a lot. It's the visitors who are showing up who are helping me stay positive and get through this. Keep visiting. And thanks for the miso soup mix Henry, that really helped last night.

18

Today was a better day. My team lead dropped by with a card from all my coworkers and a cool looking plant with green and red leaves. I'm looking forward to taking it home. Now I have two plants.

I had a bunch of visitors tonight. Geoff and Cindi showed up, then Adam, Mike, and Satoshi. My parents were also there, as they've been coming everyday. I think they've finally accepted what is happening. They are being more supportive and not trying to push any more. My mother says that Cindi is a nice girl.

Since it's already Thursday, it looks like I'll be in the hospital through next week. I don't feel any weaker since I was admitted, but I also don't feel any stronger. That could be a good thing. I've been on the steroid treatment now for a week. They are giving me 60mg per day orally. Normally, the human body produces about 6-7mg of steroids per day naturally.

At this point, the doctors are waiting to see if I respond to treatment. If it goes well, then I'll be on my way to GF Strong for rehab. I won't be back to 100% for months, if I can get back to 100%.

I'm also trying to type this with an IV in my right wrist, which is not easy.

17

There is a faint insecure wireless network that I can reach from my hospital bed. The signal is very weak and the connection drops a lot, but it means that I can get some sporadic Internet access from my bed.

The muscle biopsy happened first thing Thursday morning, and it is still very tender and painful if I or someone else touches the spot it was taken from. It will probably take a week or two before that goes away. The doctor used a local anaesthetic and I was awake for the procedure. He only froze the skin and a bit of muscle, because the sample is supposed to be better if it's not frozen when removed. I felt the scalpel when he cut away at my muscle and it was not pleasant. The result will be back some time next week. Rheumatology also got involved, and they ordered an MRI scan. It normally takes about six months to get one as an outpatient, and I got it in a day because I'm now an inpatient.

They are diagnosing me with polymyositis. Even though they don't have the pathology results back from the muscle biopsy, they are going ahead and treating me anyway because of how weak I'm getting. The treatment is a very high dose of steroids through an IV to kill the autoimmune disease that is causing my muscles to weaken. After a few days, they will reduce the dose and switch to an oral medication. If the treatment works, I am supposed to see improvement in a short period of time, something like 5 days. Nevertheless, it won't be an instant recovery and the summer of 2006 is going to be a write-off for me. At least future summers won't be if I get better.

I will be in the hospital for at least another week, maybe longer. The doctors need to see signs the treatment is working. After that, I get transferred under the care of a rehab specialist, and I might get transferred to GF Strong for rehabilitation exercises. It's too early to really predict what will happen that far in the future.

Next week will be very boring because all the tests have been done and it's a matter of waiting to see if the treatment works. As I mentioned before, visitors are very welcome and will help me pass the time.

Latest

Today Dan had an ultrasound, a pulmonary function test, a CT scan and more blood tests. The muscle biopsy is probably going to be Thursday or Friday. He figures he'll be in the hospital until at least the middle of next week.

16

I'm back at home for the weekend. They gave me a weekend pass, and I'm heading back tomorrow. It's Amy and Sarah's birthday party tonight; I can't miss that.

The muscle biopsy will happen early next week, perhaps on Tuesday. Monday will be very busy. I have a lumbar puncture and pulmonary function test scheduled, along with some other tests I can't remember. I'll probably be there for all of next week. Yesterday, five neurologists came to see me. I think that is most of the department there.

I was also given a walker by a physiotherapist. It makes walking a bit more stable, but I'm too young for one!

Visitors are welcome, but please call ahead. Sometimes they take me away for a few hours for testing and I don't want to make anyone wait for a long time.

More updates

Dan had another EMG and nerve conduction test today. Results definitely indicate a muscle issue, not nerve/spinal. They say there are no dead nerves, but they're bigger because they have to "talk louder" to the muscles. A muscle biopsy is planned, but no date yet.

Doctors are considering giving Dan steroids, but they can't really treat him for anything until they know what it is. He might go to a rhumatologist.

His iron levels are normal, toxic screens are normal, Creatine Kinase 355 (which is in line with what is happening with the muscles). Doctors expect that it is not viral nor auto-immune since his condition is not indicative of either. Tomorrow will be another full day of testing.

Dan might get out on a weekend pass, he'll know soon.