My life was just starting to look like what I had imagined… enjoying being a wife, raising three amazing children, and possibly adopting more. Little did I know that my life would begin a downward spiral, leading me and my family through a lesson on personal suffering, and showing us just how thin the line is between life and death.
Around the age of 30, I began having chronic stomach problems and abdominal pain. Although I hardly ever went to the doctor, I knew I needed help. I saw numerous GI’s who ran many tests for a couple of years, until in 2005 I had my gallbladder removed. Unfortunately, within weeks of surgery I had an extremely severe attack of pain that took my breath away. It felt like I was literally being stabbed. My husband called an ambulance – but the doctors found nothing. Every few months or so, without warning, the excruciating pain would hit again.
I was sent to MUSC at the very end of December 2006. During an ERCP, they discovered that I had a congenital anomaly of the pancreas called Pancreatic Divisum. The pancreas was left “divided” into two sections when formed from birth. They also found that I had Sphincter of Oddi Dysfunction. The sphincter did not work properly, causing pancreatic juices to back up into the pancreas and eat away the tissue. I had my first sphincterotomy in hopes the pancreas could drain more efficiently.
I was better for nearly two years! We thought that was the end of my medical troubles. Then, without warning, I began to experience pain again. I went back to MUSC in January of 2009 where they found that the duct had nearly closed. After another sphincterotomy, relief only lasted months, and to make a long story short, the cycle continued for a total of four sphincterotomies. I lost so much weight and had a feeding tube implanted into my abdomen. I continued to experience pain from my smoldering pancreas, but I was in denial – not accepting the diagnosis of chronic pancreatitis – not accepting that this was not just going to get better.
I researched tons of information about pancreatic issues and read about a groundbreaking surgery called the Total Pancreatectomy and Islet Auto Transplant. Doctors would remove the pancreas and transplant islet cells into the liver. I scheduled a consultation with Dr. Sutherland in MN who first performed this surgery. In the meantime, my doctor at MUSC informed me that they, too, had just started doing this rare surgery. He set up an appointment for me to meet with their pancreatic surgeon. After both consultations, it was concluded that the enormous surgery would be my only way “out”. It would mean a long hospital stay, many complications, a stay in ICU, a large incision and many tubes to wean off of. It would be a long year of recovery. BUT, this would mean no more attacks of pancreatitis, a condition that causes more and more damage – even a chance of death.
On January 24th, 2011, I became MUSC’s 49th TP/IAT patient. I had lots of bleeding, needed blood transfusions and platelets, had some breathing problems, and of course was in lots of pain, but slowly I progressed. It’s now only three months out, and I am still on the long road to recovery. Although I continue to struggle with digestive issues and work daily on the puzzle of surgically-induced diabetes, I am eating and not in pain. I am happy to have the chance of one day living life fully again.
On the darkest days when you cannot imagine one more breath to flow through your broken body, it can seem that God has abandoned you. I can only say that I am here because of God’s will, and I can only hope in the everlasting life of Heaven, where suffering will be no more.
