In most cultures and throughout most eras in history, humans mourned by generally withdrawing from active participation in society. My scattered posts on Facebook over the past several months can be seen as adhering to this social convention. In mid-August my oldest brother died. He was diagnosed in the spring with Acute Myloid Leukemia. He chose a course of treatment so rigorous that one in six do not survive the regimen. The medicines failed, and after being told he had two weeks to two months to live, he was sent home. He lived for four months. He and I spoke every day. During this same time period, my health deteriorated. I seemed to be stuck in a cycle where I would experience abdominal pain, then vomit and spend a day or so bed, and slowly regain vigor until the cycle would repeat. This cycle would repeat every 7 to 10 days. I put off seeking medical advice, thinking the symptoms were probably related to the stressors associated with my brothers situation. In July, I contacted the surgeon who had reconstructed me after my pancreas exploded in 2012. After imaging, he determined that one of the drainage ducts he had constructed had become infected and was blocked. My pancreas had separated into two parts and was leaking into the ballooning duct. An external drain was placed by a C-T team and unspeakable goo was drawn off. The out-of-body drain had to be left in place, since the internal duct is now unusable. I was leaking an average of around 300 ml of pancreatic fluid every day. (Think a 2-liter soda pop bottle every week) the sensation of the drain is similar to having a ice pick under the ribs. It can be tolerated, even ignored, when still, but movement is another story. After exhausting what help was available in Kalamazoo, I was referred to Indiana University Health in Indianapolis. They are international experts in the procedure called an ERCP. In an ERCP a tube is inserted through the stomach into the common bile duct and, from there, into the liver, gall bladder, or pancreas. The original thinking was that during the ERCP a stent could be placed that would bridge the parts of my pancreas and stop the leaking. In September I underwent the procedure but the scar tissue blocked any attempt to reach the point of the leak. The surgeons there offered me two options in an attempt to patch me, one of which was an operation which had not been done in the U.S. before. The following week I traveled to Cleveland Clinic to visit a highly-regarded surgeon who specialized in pancreatic issues. He advised, in no uncertain terms, that I do not consider either of the options offered in Indianapolis. He thought they were temporary measures at best. He drew blood to test for a genetic mutation which would indicate my pancreas would never stabilize and should be removed in its entirety. Absence of a pancreas requires ingestion of digestive enzymes and makes one an absolute diabetic, so an insulin pump is critical. He also ordered a fistula-gram (supervised by a Dr. Einstein) to determine which parts of my pancreas were leaking and their relative rates of flow. Finally, he ordered me to get monthly octreotide injections. This is the only med which diminishes the flow of fluids from the pancreas. Since that appointment I have learned to live with an external drain, the rate of leakage has diminished to around 80 ml a day, and I am resuming duties as my energies allow. My GI tract has been whipsawed by this, but has stabilized. On Tuesday I returned to Cleveland. The good news is I have no mutation. The bad news is the drain remains in place. The best case is that the leaks close and the drain is removed. There are too many variations of less than best scenarios to describe. I continue on octreotide therapy, take enzyme supplements, and enjoy the care of my solicitous wife, Leilani.
Posted on: Fri, 21 Nov 2014 20:41:57 +0000
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