Where have I been for the past eight months?
Part 2
When I went into the hospital, my main concern was the issues with my blood pressure and, increasingly, weakness in my hands. Apparently I had gone years with my old pump slowly leaking, to point that it required 1200mc/ml of baclofen to keep my legs under control. That’s a lot of baclofen. When they fixed the leak they had no real idea of how much baclofen I should be getting. Eventually I would learn I only need around 600mc/ml to keep my legs under control. At the time, I think that they left it at 1200mc/ml. This excess amount made me increasingly weak and my blood pressure dangerously low. I struggled to sleep at night. I could barely sit upright and began losing the limited function I have in my hands. I remember thinking as I left for the hospital that this might be it, the last time I see my home or my dog. They didn’t know how dire my thoughts were, but my parents tried to comfort me as I broke into tears.
While I was concerned with my blood pressure and my weakness, my doctors became increasingly concerned with something else – infection. During my first week in the hospital they would tinker with my pump settings, adjusting the level of baclofen. I pretty much dismissed any talk of infection. They had me on antibiotics and I figured that would take care of it. I was wrong. The infection was MRSA - a highly resistant strain. My new pump would need to come out.
Removing it would be no small task, given the amount of baclofen it fed directly to my spine. Removing it without preparation could put me in a coma from withdrawal. So the doctors spent a week slowly turning down my pump dosage while increasing oral methadone, baclofen, dilaudid and Valium. By the time the pump came out, I was spaced out on drugs. The nurses were amazed that I was still conscious given the quantity of drugs I was getting. I was conscious, but I had trouble holding thoughts in my mind and absolutely no attention span. Writing an e-mail to someone could easily take me three hours, two and a half of it spent staring vacantly at the wall or out the window. Days just seem to pass. I was, however, in a great deal of pain as well. Despite the drug cocktail my legs would seize up like never before - muscles would fight against one another spontaneously. For the first time, I could fully appreciate what my baclofen pump does for me.
It would be three weeks before the hospital’s infectious disease doctor gave the ok to put a new pump back in - this time on the left side of my abdomen rather than the right. Fortunately the surgery was successful and I healed up without it getting infected.
By now I had spent about two months in hospitals.
To be continued…
Where have I been for the past eight months?
Part 1
I wish I could say I was doing something important or nobel, like building houses in South America or helping cool nuclear reactors in Japan, but I can’t. I’ve spent the past eight months battling two consecutive unrelated health problems that ended up putting me in the hospital for 3 months each, with little more than a 2 month break in between.
As I know most of you already know, I’m a quadriplegic subsequent to a bicycle accident nearly 7 years ago. Because of the way my injury is, I had terrible spasms in my legs that began emerging a month after my accident. They were bad enough to pull me out of a wheelchair when triggered (usually by a light touch), bad enough that I couldn’t do rehab, and so bad that no amount of oral medication (baclofen) could control them. Then I learned of the baclofen pump. It’s an implanted device that sends micro doses of baclofen directly to my spine to keep my legs under control. Every three months I get it refilled with a needle. A small price to pay not to live a life bedridden. Every five years it needs to be replaced completely before its battery dies. A year ago, I was due for a new pump.
The operation couldn’t have gone easier. I went under, they took the old pump out and put a new one in. Two hours after the surgery, I was on my way back home. Fortunately, the area of my abdomen where the pump is placed doesn’t have much pain sensitivity, so the surgery hardly hurt at all.
So, I went back to my life. After a couple of months, I began to have increased spasticity in my legs and back. I finally went to the hospital when my blood pressure dropped suddenly. It turned out that my pump tubing either had a leak or had one created when the pump was replaced. One way or another, I had to go back in for surgery. Again, no problem. I was in and out the same day.
But, the following week, my blood pressure would skyrocket and plunge and I literally thought I was going to die. I briefly wrote out a living will and instructions for my family and friends. I was hospitalized again, during which time, they discovered that the pump had become infected.
This meant that I would have to have it removed and go for weeks with nothing controlling the spasms in my legs besides heavy doses of oral baclofen, Valium, methadone, and intravenous dilaudid for pain.
In this would be the start of my eight months of hell, during which time I would physically suffer more thanI did following my spinal cord injury nearly 7 years ago.
