Sue Rebello

Sue suffered for years in pain.  She made several trips to the emergency room, where sometimes they would keep her; other times, they would release her with medications.  During one emergency room visit, Sue was given a placebo “sugar pill” and sent home.  After that experience, Sue avoided going to the emergency room and suffered in silence.  The doctors had a hard time determining what was causing her pain.  A biopsy of her liver tested normal for hepatitis and her gallbladder looked normal.  They removed her gallbladder in hopes of alleviating her pain.  When they did the surgery, they found that her gallbladder was diseased, inflamed and embedded in her liver.  However, even after that surgery, Sue still suffered from chronic pain.

In 1995, Sue went to a major hospital in Boston (a 1-1/2 hour drive) in search of answers.  There, she was diagnosed with chronic pancreatitis from pancreas divisum.  The doctors told her that she was born without the main duct in her pancreas (the accessory duct).  The main duct delivers enzymes, which digest food.  In Sue’s case, she had a very tiny duct with a diameter smaller than the head of a pin.  As Sue ate, her pancreas released enzymes to digest her food.  However, her tiny accessory duct would get blocked and the enzymes would get trapped in her pancreas.  There, they would start to eat her pancreas; this is what caused her the incredible pain she experienced.

Later that year, doctors in Boston inserted a stent in hopes of increasing the diameter of her accessory duct.  Just three weeks after the stent was inserted, Sue was doubled over in pain.  The pain was so severe that she was transported by ambulance to the hospital in Boston.  Unfortunately, the stent was obstructed and had to be removed.

In 1996, Sue was hospitalized three times with severe pain.  She was in the hospital for more than 20 days.  One bout was so severe that she was given two units of blood.  In November of that year, she had a Whipple procedure performed in Boston.  Doctors removed the head of her pancreas and created a main duct so that enzymes would pass through easily.  The tail of her pancreas was left in place in hopes that it would function normally.  Sue was able to eat small amounts of food until just before Christmas, when she was hospitalized for an additional 7 days.  Another holiday spent in the hospital.

The next year, Sue tried to keep the persistent, chronic pain under control by taking Percoset, a pain medication.  Sue is a real trooper – she is brave and strong.  She loved her job and was determined to keep working – and she did just that until the pain was too much to bear.  She was able to keep working until July 30, 1997, when she was hospitalized again for 9 days.  At the end of August, Sue was hospitalized for an additional 21 days with severe pancreatitis, malnutrition and anemia.  Sue says, “Every time they tried to introduce food, the beast inside me kicked up its heals into a frenzied attack.”  She could not even eat half of a popsicle without experiencing severe pain.

Four doctors told her that her pancreas was not going to get better and recommended that she have it removed in a surgical procedure called a pancreatectomy.  Her doctor told her that because of the severity and number of attacks that she had experienced that he could not guarantee to get rid of her chronic pain.  The pancreas is the organ responsible for producing insulin, which regulates blood sugar.  Without her pancreas, Sue would be diabetic.  “They told me that my quality of life would be better as a diabetic than living with this persistent, chronic pain,” Sue said.  “They told me they were afraid that they were going to lose me if I had to be hospitalized many more times.”  Sue had lost 60 pounds since the beginning of this ordeal and she had now been diagnosed as malnourished and anemic.  She started TPN (total parental nutrition) feedings and remained hospitalized until September 16, 1997.  Sue’s primary doctor, Dr. McIlvaine, agreed with the recommendations of the other doctors; a pancreatectomy was the way to go.  However, her primary doctor also told her about islet cell transplantation, which could potentially help prevent her from becoming a diabetic after her pancreas was removed.  Sue inquired about this procedure in Boston and her doctor recommended that she contact Dr. David E.R. Sutherland at the University of Minnesota Medical Center, Fairview (formerly called Fairview University Medical Center).

Dr. Sutherland pioneered a procedure called a pancreatectomy and auto islet transplant.  In this procedure, a patient’s pancreas is removed, the islet cells are isolated from the pancreas using a sophisticated technique, and then the islet cells are put back into the patient, where they start producing insulin again.  With this procedure, there was a chance that Sue could potentially be free of chronic pain and also free of diabetes.  If she had the pancreatectomy, she would become a brittle diabetic.  Sue decided that any chance of not being a diabetic was better than none at all, so she decided to have the auto islet transplant in conjunction with the pancreatectomy.

In late September 1997, Sue was hospitalized in Boston again with another round of severe pancreatitis.  She went on permanent TPN feedings until the pancreatectomy and auto islet transplant surgery could be scheduled in Minnesota.  At the Boston hospital, they inserted a central line for TPN feedings.  Two days later, she learned how to take care of the TPN apparatus, which she called “Penelope.”   Penelope went everywhere with Sue – to work, to the movies, to bed, and on the airplane to Minnesota.  However, Penelope was heavy.  Sue weighed only 115 pounds and Penelope weighed 8 pounds when she was full, so one of Sue’s friends strapped Penelope to a luggage cart so that Sue could wheel her around.     

On November 13, 1997, Sue and Penelope flew to Minneapolis alone (Sue is single and her mother had just had surgery herself).  Sue made friends with Mary, a flight attendant, who visited Sue and even spent 2 hours with her on Thanksgiving Day.  Sue feels that Mary was an angel sent to watch over her while being so far from home. 

On November 17th, 1997, Sue had a pancreatectomy and auto islet transplant procedure performed by Dr. Sutherland at the University of Minnesota Medical Center in Minneapolis, Minnesota.  Just five days after the surgery, Sue did not need insulin anymore.  As she recovered from the surgery, she realized that she did not feel the excruciating pain anymore.  When she was released from the University of Minnesota Medical Center just two weeks after surgery, she was insulin-free.  Sue said, “Miracles do happen!” 

Sue’s friend, Deb, has been a tremendous source of healing and support.  Deb flew to Minneapolis to bring Sue home to Massachusetts.  Deb is a nationally certified licensed massage therapist specializing in body balancing. “Deb releases scar tissue and adhesions twice a month.  She’s been sent to me by God, who has blessed her with ‘healing hands,’” says Sue. 

Sue had been hospitalized 12 times for a total of over 86 days before having her pancreatectomy and auto islet transplant.  After her surgery, it took time for her to gain back her strength.  She takes enzymes by mouth after she eats or drinks to help her body digest food properly. 

Sue returned to work on January 15, 1998 (her birthday).  She worked as a Senior Clerk for the State of Massachusetts.  She loved her job, where she has worked for over 24 years.  Her boss and coworkers were always supportive of her and understanding of her condition.

Sue wrote about her experience in an article entitled “Experiences with Chronic Pancreatitis and the Miracle That Ended It” on the Insulin-Free World web site (www.insulin-free.org/stories/rebello.htm).  After writing about her experiences, Sue was contacted by the mother of an 11 year old child and two adults who called Sue their “guardian angel.”  The information in Sue’s story led all 3 to Minnesota to have the pancreatectomy and auto islet transplant.  Sue has managed to personally meet 4 other people who have had their pancreas removed.  Sue’s latest contact is from Israel.  “It’s amazing how many people are struggling with this disease,” she says.  Sue is excited when she learns of another person who was suffering from chronic pancreatitis who decided “to bury the beast in them in the river in Minneapolis” – as she likes to call it.

Sue recently celebrated her 50th birthday with family and friends on January 15, 2005. Because of all the surgeries Sue has gone through, she decided to retire on March 31, 2005.   Although she now experiences some pain when she eats and she takes Lantus insulin before bedtime, she feels much better than she did before she had her pancreatectomy and auto islet transplant.  “Looking back on things,” Sue says, “I would have the pancreatectomy and auto islet transplant again in a heartbeat if I needed it.  The only thing I would do differently is that I would have had it done sooner and, perhaps, not have had the Whipple procedure.” 

Sue promised God that if she pulled through the surgery she would devote her free time to comforting and educating other people suffering from chronic pancreatitis.  Sue welcomes any snail mail, e-mail or even phone calls.  She can be reached at (413) 283-7119.  Her e-mail address is:  srebello18@gmail.com.