Fast Recovery From GBS! Long story……

I had a very fast “recovery” from GBS. I put the quotes around “recovery”; because it’s relative….I’m still recovering, and probably will be for some time. But from the time I went to the hospital to the time I was up and around and driving was incredibly short – or perhaps I should say incredibly lucky.

Even with the illness that caused my GBS I was again very lucky! We were in the midst of preparing for a cruise to Alaska when I mentioned to my wife that “something wasn’t right”. I had pains that might have been caused by my right kidney because I had kidney failure several years ago and I often have some issues even though I’m doing very well. I was also running a temperature for several days so I went to a satellite outpatient clinic of the hospital. The doctor suspected a cyst on the kidney and sent me to the hospital for immediate admission. We missed the cruise but did it the next year.

They did an MRI that day. My doctor came to see me with the old “good news/bad news” story. The good news was that my kidney was fine. The bad news was that the MRI showed a mass in my liver. They would have to do a biopsy under general anesthesia and a surgeon who had operated on me a few years before (and saved my life from peritonitis – but that’s another story) came into my room and said, quite abruptly as he left, “I’ll do a biopsy in the morning”. He looked like, and sounded like someone who was about to lose a friend.

We understood that everyone, and now us, assumed that the large mass was cancer in my liver, and that would be “all she wrote”. So, we spent that evening in the hospital room coming to grips with that. Hmmm, it was no fun……

When I awoke in the recovery room after the biopsy, my surgeon was sitting by my bed on a stool, looking at my chart and shaking his head, with a big grin on his face. He said to me, “Well, Ken it looks like you just dodged another bullet.” “It is not cancer, it’s an infectious mass.”

Great news! On the other hand I found out that 30% of the people with that infection die. Of course that’s a lot better than liver cancer with a 99.999% mortality rate. Then the problems started.

The lab was not able to culture whatever it is that was causing my liver infection. I was getting loads of antibiotics in the hope that one of them would work. They didn’t. But I did begin to improve. The fever had gone down to a lower point, but I was an absolute mess from the infection, anemia and fever. I was to go home but stay on IV antibiotics 24 hours a day for the next three months and have visiting nurses. What a bummer! But there wasn’t any other choice except to go to a nursing home.

When I got home I started a spreadsheet with my temperature readings so I could graph them. Every day I meticulously entered all my temp readings for the day. The graph showed a slow, continuous trend UP! I told the nurse that I was concerned but she told me I wasn’t drinking enough water. This went on until I saw the doctor for a follow-up at his office.

When he saw me he asked with a big smile, “Well how are you?” I showed my graphs to him. He turned white, grabbed the phone, called the hospital, and told a doctor there he had an emergency admission that needed to have their full attention. He was in a near rage when he learned that the nurse had NEVER reported my long escalating temperatures! I was in BIG trouble.

I was now in worse condition that when I was first admitted to the hospital. I got to the point where the infection was so bad, for so long, that my bone marrow was not producing red blood cells. The doctor said if I didn’t improve they would have to start blood transfusions.
But, there’s always a “silver lining to every cloud”. The infection had gotten worse, but it had also formed an abscess, and that saved me. They put a drain into my liver. Not fun….. But they were finally able to grow a culture and finally start the right antibiotics. So after another three weeks in the hospital I was sent home again – on IVs all day and night……

Okay, now the GBS. Just a few weeks away from the end of the antibiotics my toes felt numb. I didn’t think much of it. Then each day for a week they got worse and my feet felt numb, and up to the level of socks. One or more of the many meds I was on had toe and foot numbness as a side effect, so we still didn’t do anything except cut off all the meds except the IV antibiotics. I saw the doctor on Friday, had to sit in a wheel chair, my blood pressure was very low and I had trouble walking.

I called the doctors office on Monday morning because I couldn’t walk without support, my speech was badly slurred, I was seeing double, my hands were numbs and my arms were uncoordinated. I couldn’t speak understandably. An ambulance was dispatched to bring me to the ER. I spent the usual hours getting all kinds of tests to rule out everything else, but they suspected GBS.

After I got to a room it was quite a scene. Nurses were coming in to my private room constantly just to see how I was. Toward the end of the day I said to the nurse, “It seems like I have to concentrate to breathe, and it’s as though I’m not getting enough air”. She ran out of my room. Then I heard the loudspeaker paging system announcing some kind of code, and before the announcements finished there were seven people with all kinds of equipment crowded around me. I was put on oxygen while they did their thing. After a while it was determined that I was breathing well enough that I wouldn’t go to ICU on a vent. The last time I was on a vent they had to put me out for several days until I could be taken off the vent and brought back to consciousness. So I was ecstatic that I didn’t have to go through that again.

I was a “bit giddy”, and that turned into hallucinations. If anyone started entering the room I thought we were under attack. I would bolt upright in the bed, and start shooting at the attackers. One nurse nearly fainted when I pointed my finger-gun, with my other hand supporting it, while I screamed, “stop mother-*****r”. It rattled her so bad (her husband was a cop) that she never came to my room again. It was funny…..but I guess it’s one of those, “well you really needed to be there” to appreciate it!

Here is the end of the story. After that first night I began to improve. I was still scared out of my wits, but it seemed there were signs of improvement. A neurologist wanted to do a spinal tap but I wouldn’t let him because many years before I had one for a bout with meningitis and it was not something I wanted to go through again. I asked him to wait because I was improving and still hoped it was just a drug reaction. He wasn’t happy with that but agreed. Two more days went by. My eyesight was getting better, I could speak and be understood, and I was already up and walking with the help of a walker. But I realized that I was still a mess so I asked the neurologist to do the procedure. As soon as the results came back positive for GBS he started IVIG for three days. After the last one I went home, still on antibiotics for the liver infection. After another few months the infection was finally cured, and “all systems were go”.

The day after I got home (I was in the hospital for ten days.) I began to drive, was walking, talking and improving. I still have some residual numbness in my fingers, but it’s my feet that are a continuing problem although they are improving nicely. I have the numbness all over the feet but worse in the balls of the feet and the big toes. They are getting better and better.

I saw my doctor yesterday; they did some tests in the office. He’s found another problem; I’m on three new meds and will have another test in three weeks……here I go again.