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What tips do you have for the caregiver after a total pancreatectomy?
Caregivers | Last Active: Aug 14 4:24pm | Replies (19)Comment receiving replies
Thank you so much for sharing! Your words are helpful and give us hope. It sounds like you’ve come to terms with this…any suggestions as to how I can help my husband accept and move forward?
The endocrinologist is referring us to a dietician and I'm looking forward to hearing what they have to say. How the diet for 3c diabetes different from a regular diabetic diet? What questions can we ask the dietician to be sure we’re getting the best information for this situation? How long before you felt like "yourself" again? The hardest part for both of us has been looking toward the future. Any thoughts on what we can expect from now on? Sorry for the barrage of questions…this is so new to us and there is so much to learn!
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@christinemb - I understand for sure. When I first learned that I had multiple pNETs that required the pancreatectomy, I figured I was a goner. The biggest game changer for me was meeting the surgeon and his explanation was that it was much more about the after care and management of the condition vs the condition itself. If I gave up, it wouldn't be fair to me or my family so I doubled down and did a lot of reading and educating myself. It sure beat the alternative for me.
Type 3c is a little more challenging as with the pancreactomy, as I have to use enzymes for digestion and that is a little more difficult to predict the blood sugar spikes and how quickly the food digests. Some days I miscalculate and go low and others not enough and I go high. I work off highs with physical activity and lows I treat with apple juice or glucose tabs.
I would ask the dietician about food and portion recommendations for the enzyme dosage that will be needed. I try to eat fats with carbs to smooth the spikes and stay away from bad actors for me (rice, noodles, etc.) and focus on portion controls. I eat three meals and three snacks a day and rely on my CGM to tell me when trends are heading in the wrong direction to get ahead of problems.
I felt like myself after a couple of months (but was doing light yard work on day 7!) and I do get frustrated when I am in the middle of something and need to stop and get my glucose back up. I look at it as God's way of telling me to stop and smell the roses.
I will tell you that I can pretty much do anything that I used to be able to do - biking, hiking, kayaking, yard work, RVing, etc. and just have to plan differently (carry my bag with glucose, meter, emergency glucagon, planning to eat on schedule, etc.) and look at it this way - my life isn't over, just different now.
My PCP calls me the healthiest sick guy he knows. One of the reasons I joined Connect was to share what I have learned and help someone else get through the tough times. I figured getting mad about it does me no good (but do allow some self wallowing at times 🙂 - but I keep moving forward.). Let me know if I can help in any way.
- Matt