Posted on August 19th, 2016
On August 9, 1991 I had laparoscopic gallbladder surgery on the advice of a surgeon. (Sepsis and Surgery) It was a new procedure at that time. The whole surgical community had to be trained at once and because all were novices back then, even the ones doing the training, there were many deaths and injuries associated with this surgery as reflected in the literature of the time.
Bile duct injury is one of the worst complications of abdominal surgery and is virtually irreparable even in the best of hands. Bile ducts have a limited blood supply and when damaged will scar up badly. This scarring leads to stricture of the bile duct, which impedes the flow of bile from the liver. This blockage results in inflammation and infection. Germs that are normally washed out of normal bile ducts grow in the stagnate bile that backs up behind the strictured area–which can, and often does, “seed” all over the body by way of the bloodstream as the liver is a filter for the blood. This “seeding” can lead to sepsis.
My story is about a bile duct injury gotten at a gallbladder surgery that went wrong but I will stick to the portion of it that addresses my experience with its septic complication:
I was always a healthy, active person who was never sick beyond the occasional cold or flu. My only complaint was a bit of arthritis that would flare up once in a while. I had no idea such misery as I came to experience was even possible.
I woke from the surgery with a line that ran from my right ribs to my right hipbone that burnt like a scald on the underside of my skin; the first night in the hospital after my surgery I ran a low fever and was told I would not be released the next day unless it went down. The fever went down and I was released the next day. But at home I was hit with waves of dizziness, got so cold I could not get warm, and turned white as a sheet so had to return to the hospital’s emergency room where I was told I probably picked up a “bug” in the hospital. I was told it would resolve on its own and was discharged back to home.
At home, when I tried to eat, that area that felt burnt on the underside of my skin would do this awful twisting, stabbing, burning sensation and my stomach would clamp down on any food in a tight miserable knot like it had somehow forgotten what to do with it. When I saw my surgeon at my two-week checkup I told him about this problem and some other problems I was experiencing. He walked out of the room without saying a word. In my pre-op visit he was warm and friendly. At this visit he was cold and distant, acted like he could not get me out of his office fast enough.
At home things got progressively worse. The area that burnt like a scald on my right side turned into a raging fireball. If I pressed on the area and let go it would “glug” like a water balloon. Eating was a nightmare. Every time I would try to eat that fireball on my right side would go crazy. It got so I was afraid to eat and lost 40 pounds. Symptom after symptom appeared to the point of the unbearable. I don’t want to get too graphic here so won’t detail everything that happened. Alarmed at my downward spiral and some new symptoms that appeared, I contacted my surgeon’s office on Thanksgiving Day and his senior partner was on call. I described what was going on and he said I needed to be seen in the office and he would tell my surgeon what was happening.
I wasn’t sure about seeing my surgeon again after the cold response I got at my two-week checkup but made an appointment and went to see him again. At this visit he was acting stranger than before and didn’t seem all that interested in what I was going through. I left his office feeling frightened and trapped in a growing horror I could do nothing about. He set up an appointment with a gastroenterologist friend of his and I was given a couple of tests. I was told they showed nothing. I knew this could not be true; nobody could be that sick, and getting worse daily, and nothing show up.
My back started hurting and my urine took on the odor of burning rubber tires. I was very sick by then. My right side felt like it was about to explode and was excruciatingly painful. My face took on a sunburnt appearance and my nose turned navy blue. Every joint in my body hurt. I called the gastroenterologist I had been referred to and he barked: “what are you telling ME this for?!” I tried to get help at three local emergency rooms hoping one of them would respond: none would. I went to an emergency room out of town and got the same lack of response. One night I was laying on my sofa, pouring sweat, my joints lit up with pain, my right side on fire, and that “water balloon” in my right side broke and spilled. I felt a huge “pop” and then felt the contents spread inside burning like lava on the underside of my skin as it moved along. Very painful. It pooled in my pelvic region by morning and the skin on the outside was bruised-looking and painful to the touch. I had pitch-black diarrhea the next day.
I phoned my surgeon and told him what had happened. He ignored me, said it did not match any pain-pattern he knew about. Then I got sicker very quickly. My heart started beating erratically, miserably. It would do this weird “beat-beat-beat-vibrate” thing over and over. A fine red rash broke out suddenly across my chest and upper arms. At night I would pour sweat and soak my clothes and the bed, my hair would be sopping wet. My surgeon referred me to a cardiologist and he found tachycardia at 138 beats per minute, two valves regurgitating, and I was diagnosed with subacute bacterial endocarditis later on–which was concealed from me and I was never treated for it. I found out two years after when I asked for copies of my medical records.
One night some friends wanted to go see a movie and I figured I’d be miserable no matter where I am so I might as well go. In the middle of the movie I went to the restroom and after using the toilet saw it was filled with what looked like ropes of pus–a lot of it. When I went to the restroom a second and third time the same thing happened. At the same time my muscles started twitching from head-to-toe, would pop off like popcorn here and there in a scattered pattern. Leg, face, arm, abdomen–round and round it would go like that all day long, all night long even when I was sleeping. Here it is 22 years later and the twitching is still going on–not as badly as it was when it started, thankfully. After that I was too weak to do much.
There were times I felt I was going to die. I tried to get help and was turned away every place I went. The doctors would say: “I don’t want to get involved” but would never say involved in what exactly or “go back to your surgeon; he is the only one who can help you.” My surgeon kept telling me he had no idea what was going on and didn’t seem in any hurry to find out.
Ten months after my gallbladder surgery my surgeon did a second surgery where he removed a portion of my small intestine without my permission or telling me first. A nurse in the recovery room told me I had just had “some extensive surgery,” but said my surgeon would have to describe it as she was not allowed to. He refused to discuss what was done at that surgery even to this day. (But later a nurse working at my health insurance company of that time told me he removed the piece of small intestine to redo the failed biliary repair that was done at the gallbladder surgery when a bile duct was severed). I felt better for about two months ,then the symptoms came back–worse.
Finally I realized I was not going to be able to get any kind of useful help locally and went to Canada, where I was told to research “bile duct injury” and “subacute bacterial endocarditis.” I then traveled to a top-drawer liver specialist in New York City where I was given a balloon procedure on a biliary stricture. I was better after that, not restored to my original condition, but at least functional. The liver specialist asked if I was ever offered antibiotics when I was so obviously infected and when I said “no” he just hung his head and said nothing for a long time.
It is now 22 years later. I lived through the impossible, untreated, but came out of it permanently damaged and will never really recover. I survived but I can’t really call this state I am left in “living”. I am very impaired and still suffering.
Nobody lives through a ruptured liver abscess; it is 90% fatal even with aggressive treatment. I got none and survived. Nobody lives through subacute bacterial endocarditis untreated–but I did. The infection had “seeded’ into my kidneys. A bile duct injury with its septic complications put country singer Tammy Wynette in the hospital near death in December of 1993 and its progression eventually killed her. It killed actor Carroll O’Connor, actor Jaime Cardriche, politician John Murtha and thousands of other people. It killed my husband’s uncle, one of my friend’s sons, and one of my neighbors. I don’t know why I lived when so many others didn’t.
In March of 1993 I placed an ad in our local newspaper looking for others suffering after laparoscopic gallbladder surgery and hundreds poured out. We exchanged details of our individual experiences and found we had just one story to tell. All of us, but one, woke up from our surgery with an unexpected 1-2 inch incision in the middle of our chest just below the breastbone. All of us were ignored when we began manifesting symptoms and were left untreated. All of us were made to face the horror and pain of our increasing symptoms alone. It was that way in 1991 when I was first injured and it continues to this very day.