total pancreatectomy and insulin pump

chucha138197 over a year ago

Hi. I had a total pancreatectomy and splenectomy Aug 1, 2008 at USC Medical Center in LA. From October, 2008 to March, 2009 I did chemotherapy (gemzar). The chemo made me very sick--it affected heart, lungs, kidneys, nerves. Was hospitalized 5 separate times between October, 2008 and June, 2009. My blood glucose level has fluctuated wildly--from 30 to 570 in one 24 hour period. Since having the pump, things have been better--I'm feeling almost normal and have had much more acceptable blood sugars. I tried using the sensor to monitor blood sugar, but haven't been impressed with it. Ironically, the first night that I was wearing the sensor, my husband awoke to find me unconscious. He called the paramedics who couldn't get a reading on their glucometer--which indicates a glucose level of less than 20. The problem of the sensor is that it doesn't report "real time" glucose levels. Because the readings are of interstitial tissue rather than of capillary blood, the sensor report is about 20 minutes behind real levels. My blood glucose level was falling too fast for the sensor--by the time the sensor recorded a dangerous glucose level, I was already unconscious. In additi,on, I had difficulty inserting the sensor because of nerve damage in my hands (and because, I must admit, that I am a chicken). I've decided that I would rather depend on finger sticks--I do from 6 to 12 sticks a day-- to tell me my glucose levels.

I'd like to be in touch with others who have had a total pancreatectomy. It's a bizarre condition. During one of my stints in the hospital, a nurse told me that I must have had a partial pancreatectomy because a person couldn't live without any pancreas at all. I tell people who doubt that life is compatible with a TP that you can't live well with no pancreas, but that you can live. When I consider the alternative (advanced pancreatic cancer), I guess I AM living well. Hope to hear from someone who "gets it". Would be happy to pass on any information I have gleaned from this experience to those facing this surgery. Chucha

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GranNan207694 over a year ago

Hi -- not sure you even look at this site anymore, but I have been searching for someone who has been through TP and Splenectomy. Hope you are doing well. I am a 66 yr old female. Had Whipple procedure 4 yrs ago for suspected PC. Turned out to be IPMN, a precancerous condition. I am not diabetic yet...will be after this surgery, of course. Also had unrelated breast cancer at the same time. Lucky me!

I worry about being a brittle diabetic and also about fighting infections without a speen. I live alone except when taking care of my little grandson at my daughter's house 2-3 days a week.

Can you give me any additional information about your experiences since surgery? I would be very grateful. Janet

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Guest over a year ago

Hello...I am a 59 year old female who had a TP 9 years ago. All of my pancreas, spleen, duodenum, gallbladder, part of my small intestine, some liver bile ducts, 1/2 stomach, uterus, ovaries and appendix ALL GONE. Yes, I frequently have people (including doctors) claim I must have had a partial and like you, I offer for them to do an MRI and see there are only staples that will show up in place of the organs. I was on TPN with no food by mouth for about a year. I've had several hospitalizations with sepsis, blocks and a few other "unique" circumstances but I keep managing to pull through while giving the doc's more information on our condition. I live in Northern California and would enjoy a conversation.

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