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…