For a very long time, I've been extremely active in the IBM i community. A leading developer, speaker, author, and participant in online forums, e-mail lists, and so forth. Then, at the start of 2013, you stopped seeing me. I seemed to drop off the face of the earth. Many people have written with concern.
Let me tell you my story of what happened.
It was Saturday, January 5th, 2013. I woke up in the morning, and stood up and found that my legs were very weak, wobbly, and unsteady. I had been feeling run down and low on energy for 2 months, and had seen many doctors about it, but they didn't find anything wrong. I had been to the emergency room twice prior, and they told me I was just tired. I wasn't sure what to do, now! After all, my legs weren't working right, but I had already tried to get help.
I phoned my doctors office, but being a Saturday, of course there was nobody there. I paged the on-call doctor (who wasn't my regular doctor) and asked her what to do. She said "have you felt this way before?" I said no, normally my legs work fine. She said "go to the emergency room."
I was able to walk, carefully, leaning against walls, desks, etc, into the emergency room. The doctors checked me out. "There is nothing wrong with you, sir. Go home and rest. You are just tired."
I insisted that they check me out. I insisted that they at least do an X-Ray or something!! I mean, I could barely walk, and it was getting worse as the day went on. I was told by a doctor to be here. You can't just send me home saying I'm tired again!!
The doctor eventually said she'd humor me and tried blood test, urine test, X-Ray and CT-Scan. But, again, found nothing wrong. These tests were not finding the problem, and the staff was saying that this wasn't an emergency. I convinced them to at least wait until my on-call doctor had examined me. She turned out to be a very thorough doctor, and she noticed some problems, but didn't know what the cause was. After about 8 hours, in the E.R. my legs failed, I could no longer stand. I discovered this when I tried to stand, my legs collapsed, and I fell to the floor. The doctors then decided there was no choice but to admit me to the hospital.
I remained in this hospital for four days while they ran a gamut of tests on me to try to determine why my legs suddenly failed. They tried a lot of different tests, including one that applied electric shocks to all of the nerves of my body, and used accupuncture needles to listen to the movement of all of my muscles. They still did not find anything wrong.
The test that finally helped was an MRI. I had to be sent to a different hospital, 30 minutes away, to use the MRI machine there, since the one at my hospital wasn't up to the task. I was scanned for 2 hours, and my results were checked over by a brilliant MRI tech, and two neurologists. And they still very nearly missed it -- but they did find something strange.
Blood was not flowing in the proper manner. The MRI wasn't able to accurately detect where it was, or what was causing it, but the doctors diagnosed it as an arteriovenous malformation (AVM). This means that blood from an artery is flowing directly into a vein, skipping the capillary system, and causing an unusual amount of pressure on the vein system. This was a breakthrough, they had found something wrong!
It's also a very rare and unusual problem. This hospital I was at did not have the expertise to work with this problem. This is the sort of thing you go to a special hospital for (for example, the Mayo Clinic works with this sort of thing.) I was extremely fortunate that there's such a hospital in the city that I live in -- it's called Froedtert Hospital, and is one of the best in the country. By this time (January 9th) , I was in the charge of my regular doctor, but he strongly recommended transferring me to Froedtert (where he could no longer be involved) to work with experts. He had connections with the head of neurology, and was able to put me in the charge of one of the best neurologists in the country. I am very lucky!
So I was transferred to a new hospital. To determine the cause of my problem, they did a medical procedure that involved inserting catheters into my arteries, feeding them through my blood system, and squirting dye that they could track with radiology to find where the blood flow was abnormal. They discovered the AVM in the back of my brain. It turns out that the AVM was somewhat severe, and had formed a fistula (with a sinus-like system) that was drawing blood from multiple sources. To fix it, they'd have to get into it deeply and embolize it (I'll explain "embolize" later.) If they missed the spot, I could die or have a stroke.
Unfortunately, they could not reach the fistula. The arteries spasmed up on them, and locked them out. They decided it was not safe to proceed, and put me into the Neuro Intensive Care Unit. They decided to confer with other doctors and experts to see if maybe there was a better way. This procedure began about 8:30am on Friday January 11th and took about 8 hours. Afterwards, I was too weak to do much but sleep until Saturday morning, anyway.
Since it was now the weekend, the doctors they wanted to confer with were not available immediately. The plan was to wait until Monday. But, on Sunday, January 13th, my health was failing. Eating breakfast overwhelmed my strength. The ICU nurse contacted the doctors, and they agreed that I could not wait until Monday, I may not make it. They scheduled an emergency surgery for Sunday night that took 5 hours, and ended after midnight. This procedure was successful.
What they did was find a path through the artery system, a very complicated system of blood vessels in my body. It involved twisting and turning a wire through arteries that snake and twist like ramen noodles through my body. When the wire reaches the right spot, they slide a catheter over the wire through the arteries to the right spot. Once that's in place, they remove the wire, and can squirt dye, tracked by radiology, to see that they've found the right spot. Once they have the right spot, they can "embolize" the problem, which involves filling up the fistula (including the AVM) with permanent glue, sealing it up.
They saved my life.
But after that, I was extremely weak. The fistula had sapped so much strength from my body that I nearly died. But the worst part is that the pressure in my veins had swollen down my spinal column, paralyzing me from the waist down. I was now paralyzed from the waist down. Very much like a paraplegic, with one key difference -- it's considered an "incomplete" injury.
So that is my "injury." Unlike all of the other spinal cord patients around me, who were in car accidents, or fell out of windows, had gunshot wounds -- nothing happened to me. Just some blood vessels that grew together the wrong way. A weird freak problem that could happen to anyone -- but, thankfully, is extremely rare.
It really makes you think about how fragile life is. Life is a gift, and you cannot take it for granted. Now I will rebuild myself. Every day, I will get stronger. Every day, I will get better.
Note: I will be posting updates as I progress. Please check back each Sunday (and maybe some days in between) for the latest news!!