by Elizabeth E. LaBozetta, editor, Mongoose News, Central Ohio Patient’s-rights Service. Originator of The Support Network (for injury victims of laparoscopic cholecystectomy) 1562 Picard Road, Columbus, Ohio 43227-3296 (614) 235-0421
In the winter of 1990-91 laparoscopic cholecystectomy was introduced in Ohio. The newspapers ran articles extolling the virtues of this new technology saying: "Patients recover faster and return to work sooner, have smaller scars! The one-day stay in the hospital saves money for health insurance companies!" Prospective patients were given packages of information telling only good things about this new procedure, both hand-made by the medical community itself and also color brochures created by the laparoscopic equipment manufacturers.
The color brochures begin with a drawing of a woman bent over in agony and finish with a picture of her after the new laparoscopic cholecystectomy smiling and enjoying time with her family.
There were other articles being written by the medical community at this time but these articles were not given out to prospective surgery patients: these were articles written by doctors for doctors and appeared in all the major medical trade journals; these articles, written by the top biliary specialists in America, told a very different story of injury and death than the upbeat and encouraging material created for and handed out to the prospective patients.
For example, the printed material I was given says "bile duct injury is a SLIGHT risk" and if it occurs will be handled properly and promptly. I came to learn the hardest way possible that neither statement was true.
And much too late I learned that at the same time my surgeon was handing out this misleading printed material to prospective surgery patients he had co-authored two articles about laparoscopic cholecystectomy that appeared in two top medical journals and expressed concern about the true injury and death rates.
This expression of concern about the very high injury and death rates associated with this new procedure in its introduction phase was expressed by many surgeons and is heavily reflected in the literature written by doctors for doctors from the years 1991-1995.
Unfortunately the prospective surgery candidates were not given this "other" information and allowed the opportunity for a true informed consent because if they had been told the truth and allowed access to the same information available to doctors nobody in their right mind would have exposed themselves to such a dangerous thing.
A thing is either dangerous or it isn’t, people are being injured and killed or they are not: both statements cannot be true. Yet my surgeon was handing out material saying one thing to patients and writing the exact opposite to other doctors.
The lying started before I ever entered his office for the first time.
In June of 1991 I woke up to a boring pain at the pit of my stomach. I’d been having problems with indigestion at night. My husband had been ill several months, had been hospitalized for a few weeks in the winter, and because I had three children and a home to care for figured that the extra work and stress was getting hold of me.
So when I woke up to that continuous pain I knew I’d better seek relief from my family doctor pronto because with my husband so debilitated and struggling to recover we could not afford two health problems going on at once.
My family doctor prescribed Tagamet, Librax, and Tylenol 3. The symptoms subsided. I was fine for a while then things flared up again. One night in July I started vomiting. I went to the emergency room at Grant Medical Center. I was told I needed my gallbladder out and to "stop fooling around and just have it done—the hospital has this easy new way of doing it, so what am I waiting for?" I was given a referral to a surgeon before leaving. Months later when I was more experienced I wondered at how the E.R. doctor arrived at his conclusion because no definitive testing was performed: all I had was blood work and a short examination.
I made an appointment to see the surgeon I was referred to and got shifted to the newest member of that group since the surgeon whose name I was given was leaving the state.
The nurse took a history and the surgeon came in and did a short examination, set up a couple of tests, told me he was excited because Grant Medical Center had just purchased new laser equipment---laser dissection was superior to electrocautery, he told me, because it cuts and cauterizes at the same time and reduces bleeding.
He actively discouraged the alternate treatments for gallstones: lithotripsy and ursodiol dissolution, said "once a person makes gallstones they will always make gallstones—surgery is better because it is permanent!"
He’d done plenty of these procedures, he assured me, and told me there were no deaths and just one injury---a bile duct was nicked, no big deal, and it was closed with one stitch. He said that if a bile duct is severed it’d be patched with a piece of small bowel, and if nicked closed with a stitch. I was left with the impression that everything would be taken care of and any potential problems were easily fixable. It was not true.
What I wasn’t told is that a bile duct injury is a major disaster and is almost irreparable in even the best of hands, requires prompt repair from a biliary specialist at a specialty center equipped to handle such complicated tragedies. Biliary repair is not for the novice: longevity, morbidity and mortality, is determined by early proper repair by experienced hands.
I did not know that most injury victims would not be offered that biliary specialist referral at a specialty center either: we’d be "patched", lied to, and sent home to die wondering what happened to make us so sick.
There is a one-month window of opportunity to correctly repair a bile duct injury and its resultant stricture before progressive and permanent liver damage sets in. After that, cirrhosis and fibrosis comes and an infectious process that is almost untreatable. This infectious process erodes heart, liver, joints, spleen and kidneys. The symptoms are all over the body.
In 1991 I did not know the things I know now and had no way of knowing that the testing my surgeon ordered, just ultrasound and chest x-ray, is not the definitive testing for gallstones: ERCP and cholecystography are.
I did not know about infection possibilities and helicobacter pylori either. I had stomach symptoms. Later I learned almost nobody really needs their gallbladders out at all, that even if a person has gallstones there is nothing wrong about choosing to repeat the non-invasive therapies as many times as necessary.
I had the laparoscopic cholecystectomy August 9th, 1991. A resident physician performed it without my knowledge or consent and the consent form I was given makes no mention of a resident substitution for the licensed, credentialed, already-practicing doctor I had chosen to do it. With this new procedure, outcome is directly related to experience; I believed I was getting the man I picked never suspecting that once on the table I’d be getting a trainee.
The doctor trainee severed the bile duct, patched it with a piece of small bowel, and I was sent home to die, deliberately kept ignorant of what had happened and left wondering why I was so sick, getting sicker.
The horror of those days is beyond words and when I remember all that I suffered in 1991 to 1993 at the hands of my surgeon and his consultants. I have to wonder how they are able to sleep at night: I went back to my surgeon for help when I developed a septic complication and he ran me around to consultants who verbally abused me, called me a "hypochondriac" even in the face of testing that showed abnormal liver functions, heart problems, kidney problems---and none would help me. I got lots of testing but no actual intervention. The doctors I’d see on my own wouldn’t take me as a patient, would see me once or twice, maybe order some further testing, then say I had to return to my surgeon for care, kept tossing me back to him. They’d say: "I don’t want to get involved". Involved in what? Nobody would tell me.
The medical bills stacked up and up for all that "care" I never actually got. For the first time in my life collection agencies started to call me demanding payment. I owed Grant Medical Center hundreds of dollars. With no job where was the money to come from? My credit rating was ruined.
In June of 1992 my surgeon performed another surgery on me, said he was going in to have a look around---and removed a portion of my small bowel without my permission.
Later I learn he needed this piece of small bowel to reconstruct that patch made when my bile duct was severed at the first surgery; that "quicky repair" failed and necessitated another "quicky repair". This is the cheap repair that can be sneaked in through a one-inch cut at the uppermost trocar site, saving money for the insurer and limiting potential for the victim’s discovery of the malpractice event.
I was cheated forever of a good repair by a specialist at a specialty center. The damage done by a bad failed repair is irreversible and opportunity for best outcome is gone.
The opportunity for free choice was removed also; I got what someone else wanted me to have based on needs that were not mine.
The medical community, governmental bodies, and legal community tell me over and over: "accidents happen; you should forgive and forget." I have no trouble forgiving an accident—accidents do happen. But what happened to me and many others like me was no accident: we were not given full information about this new surgery, were misled about the true injury and death rate, were cheated of the opportunity to give an actual informed consent, and were lied to about the actual reparability of a bile duct injury and how often it really occurs in inexperienced hands. We were promised prompt response if injury were to occur and were misled to believe we’d be getting the surgeons we’d chosen from our healthplan booklets when most everyone but the patients knew full well resident physician substitution was the common practice once we were unconscious on the operating table without out knowledge or consent, adding additional risks onto an already risky procedure.
Tired of the run-around and getting no help, I decided to go to Canada to see if I could get help there. I was told to research "bile duct injury" and "bacterial endocarditis," given a referral to a Canadian surgeon and a liver specialist in Ontario.
In February of 1993 I confronted my surgeon with some disturbing discrepancies between my written records and what he had told me, confronted him with some questions he didn’t want to answer on my x-ray films, and he dropped me as a patient.
In June of 1993 I was very ill and asked a surgeon who’d successfully treated a family member for a difficult cancer for a referral and this man told me: "If I were in your situation this is the man I would get care from: he is the best liver specialist I know" and gave me a referral to a gastroenterologist in New York City. This gastroenterologist turned out to be all the other surgeon said he was and had his partner perform a balloon dilatation of a biliary stricture. I was told it would last for six months and I got two years off it. I was grateful for the help; it bought me a little more time.
Later, I sought care in Ohio from a friend of the New York doctor who has a practice at Ohio State University: this man was a top-drawer liver specialist and did something few doctors are willing to do: he wrote me a letter and put the truth down on paper. That letter was the best thing that happened to me since 1991: I’d been mired in a fight for my life against people determined to hide the truth at any cost to me. Finally here were two gastroenterologists in a row standing up for me and doing the right thing. But I had found them on my own.
In March of 1993 I placed an ad in our local newspaper hoping to find other injury victims of laparoscopic cholecystectomy. Other victims responded in large numbers, even people from other states responded to the ad. All of us had been mistreated the same standardized ways, coast to coast. All of us were cheated on informed consent. All of us were called "hypochondriacs" when we presented afterwards with serious problems even in the face of abnormal test results. All of us were told "you are the only one having problems like this after that new surgery!" When we got the chance to talk and trade information, we found that several of us had been referred to the same gastroenterologist’s group in town and these doctors had told each of us they’d never seen anything like this before. Each of us were told we were the only ones having problems! It was like they had one script to read from and read it to each of these injury victims word for word.
I have had quite an education about the medical, legal, governmental bodies, and the media since I started a national support network for injury victims of laparoscopic cholecystectomy. I have listed below some of the most revealing articles written by the medical community itself. They explains everything and should be available from medical libraries.
· JAMA May 24/31, 1995 Vol. 273, no. 20 pages 1581-1585
"Falling Cholecystectomy Thresholds Since The Introduction Of Laparoscopic Cholecystectomy"
· *ARCHIVES OF SURGERY October 1990 Vol. 125, page 1245
"Laparoscopic Cholecystectomy: Threat or Opportunity?"
· *THE AMERICAN JOURNAL OF SURGERY March 1991 Vol. 161, page 408
" Laparoscopic Cholecystectomy: Gateway To The Future".
· *PRIMETIME LIVE December 16, 1993 Burrelle’s Transcript #328 "Too Good To Be True?"
. Before this happened I never imagined such misery and suffering was possible. I never imagined the irresponsible and callous behavior of people we have placed in positions of trust either.
I was used as a guinea pig without our knowledge or consent and left to suffer the consequences and bear the enormous financial burden of the misbehavior and misadventure of doctors. I am now 43 and have irreversible liver damage; the domino effect to all organ systems from this injury will kill me eventually. I have cirrhosis and the consequences of chronic untreatable infection that a bile duct injury brings. I and others like me were sacrificed to build a very lucrative laparoscopic surgery industry.
Because I have spoken out about what happened to me, I cannot get medical care no matter where I go or what happens to me. I had to learn as much as I can and treat myself.
Would I do things differently knowing silence and compliance is the "price of admission" to medical care in a system that is built on secrecy? No. Sometimes we have to stand up and do what is right no matter the consequences.
I made my choice when I decided to become a patient’s rights activist and leader and will accept whatever comes: I made my decision and will have to live, then die, with it.
Some things are just worth it.