Andrea's Story

Andrea's Story

August 29, 1989. I will never forget that day. It was the first day I heard the word "Pancreatitis". I was 21 years old. I had a 2 1/2 month old son and I was in serious pain.
When I got tot the hospital, the doctor diagnosed Pancreatitis and then asked me how long I had suffered an alcohol abuse problem. The strange thing was, I had NEVER drank. I was admitted to the hospital for two weeks, discharged for one week, admitted for two more weeks, and then taken to surgery for a cholecystectomy (removal of the gall bladder). During surgery, they found that I had several gall stones lodged in my common bile duct as well as a Pancreatic pseudo-cyst. I awoke from surgery in intensive care. Over the next six days, my abdomen bloated (I was hemorrhaging), my blood pressure dropped to the point where they could not read it and they had to take blood samples from my feet because they couldn't get it anywhere else. I was at death's door.

The doctor at the hospital decided I needed to be transferred to another hospital, immediately, for an ERCP. I was taken by ambulance to St. Joseph Mercy Hospital in Ann Arbor, Michigan. My heart rate was 185 laying down, my temperature was 106. I had blood coming up the NG (Nasal-Gastric) tube continuously. Once I got to the new hospital they didn't bother with the ERCP. The took me immediately to surgery. I woke up with a central line in my neck (twelve bottles including hyper-alimentation, lipids, heparin and nine antibiotics), an art line in my wrist to take blood gasses, and an IV in my left arm which was providing me with blood transfusions (eight of them over a twenty-four hour period). I was also restrained (to keep from pulling out the tubes) and on a respirator. I had five Jackson-Pratt drains and four holes in my side that were covered with sterile gauze and digitized (doctors stuck their fingers in the holes to open them up so they would continue to drain) daily. My parents were told that I was the sickest person in their hospital. They told my parents I had only a 10% chance of survival. The first surgery used 30 liters of sterile saline to clean out a massive infection in my Pancreas. I lost 1/3 of my pancreas at that time because it was necrotic (dead) from the infection. My wound was left open (serous) to let the infection drain. It was packed in sterile gauze that had been soaked in saline and the dressing was changed frequently throughout the day.

For the next 24 hours I was on a heart monitor, had a heart catheter and was on 10 cc of morphine, injected into my iv, every two hours. I was still in pain. They took me back to surgery twice more before I was allowed to heal and recover. At this time, I was put on an experimental drug called Sandostatin (although my doctor called it Somatostatin). It shut down my pancreas so that it did not produce as much amylase and lipase. I had to injected four times a day. When it came time to go home (several months later), my insurance company would not cover the Sandostatin (only covered it while in the hospital) so, Dr. William Fry, the surgeon who saved my life, found a benefactor to pay for the drug. (At the time it was $40 a vial and I had to take it four times a day). I was on Sandostatin for two years.

I was in the hospital for four solid months. I was unable to see my baby for two of those months because my risk of infection was so high. I was in the MICU (Medical Intensive Care Unit) for six weeks. I was weaned from the respirator on October 23, 1989. I remember that day because it snowed and I saw the calendar. Other than that, the days kind of ran together. Four days after I was weaned from the respirator, I was taken to Step-Down care for three days and then moved to the regular ward. I remained in the regular ward for two additional months.

I lost a total of 75 pounds and I was not able to eat until the end of November. Four of the JP drains were discontinued and the holes were allowed to heal. I was sent home in December but I still had a JP drain (draining the Pseudocyst) and I was still in constant pain.

For the first two years I was in and out of the hospital a lot. In January of 1991, I was hospitalized for one month because my JP drain had perforated my Duodenum and caused a "Duodenal Fistula". I was once again put on antibiotics, hyper-alimentation and lipids via a central line. I have had over twenty central lines and they are not fun.
Every year or so I am hospitalized for an acute attack. Now I am at the point that I know I am in trouble even before my serum amylase goes up. I regularly take Compazine to control my nausea. I take Vicodin for the pain (only when it is extremely bad, I do not take it for the chronic pain that I endure daily, I use mind over matter for that pain). I try really hard to not go to the Emergency Room when I have a flare up because they tend to accuse me of being a drug addict because of my pain. Whatever. Makes me want to show them how bad pancreatitis feels. (I describe it as a dull knife, covered in acid, being stabbed just under the diaphragm and lodged into the spine while being twisted back and forth).

As a complication to having only a little over half my pancreas left, I know have diabetes. It is technically considered Type I because I need insulin.
Once a year, I have a CAT (CT) scan to determine the size of my pancreatic pseudocyst. If it gets too large, I will have to have a shunt between it and my intestines so that it can drain and won't destroy what is left of my pancreas. I have had 3 ERCP's, and Bruce is right, they are uncomfortable at best and they tend to cause mild acute flare ups for me.

THERE IS HOPE:
After my original hospitalization, my doctor told me I would never be able to have another child. Well, I have two more children. Yes, my pregnancies were difficult and a bit complicated due to the diabetes and the scar tissue left over from my surgeries, but both children are healthy and happy and my deliveries went well. (One a Vaginal Birth After Cesarean (VBAC) and the other an elective c-section).

I know many people with Chronic Pancreatitis are on disability and are totally unable to work, but so far I am able to hold down a full time job, keep up with my housework and my kids, and lead a fairly normal life. Yes, there is pain each and every day, but I try to smile through it.

Thanks and God Bless.
Andrea

P.S. If you would like to learn more about me and my life, go to GrenouilleVert's Lily Pad