Mike

Living with a Confusing Pancreas and a Broken Heart at age 34 #Diabetes #LADA #CongestiveHeartFailure. #MakeDiabetesVisible Creator, Advocate, Blogger, Nature Photographer.

3 Comments

  • Judy Anderson

    I stumbled upon your website while trying to find “www.thediabeticheart” mentioned on the Dr. Oz show this morning. I think yours is by far the more interesting site. Actually, I never did find the site he mentioned; when I clicked on the link it punted me to a completely different site. I find your story interesting, and would like to follow your blog for a time. The gastroparesis part interests me. I am in a Facebook group for dysautonomia, which includes gastroparesis. Diabetes is one known cause of dysautonomia, and that is the case for some of the people in the group. Others do not know the cause. In my case, although yes, I do have well-controlled type II diabetes (my A1C last month was 5.6), most of my problems are the aftermath of an esophagectomy with gastric pull-up in 2006, due to esophageal cancer. My vagus nerve was severed as part of that surgery, and all of my dysautonomia symptoms began after that point. Gastroparesis is almost universal with EC survivors. The nerve is severed deliberately in order to cause gastroparesis, since our stomachs are now located up in our chests, tucked behind our hearts, an inch or so below our tracheas. My point in all of this though is that dysautonomia affects many systems. Not to scare you, but… It can affect the heart rate, the blood pressure, the gut (stomach, upper intestines, and lower intestines), the bladder, reproductive function and so on and so forth. Anything that is controlled by the autonomic nervous system. My biggest problem, and the one that prompted me to push for a diagnosis, is “neurogenic orthostatic hypotension”. In other words, when I stand up for more than a minute or two, the bottom drops out of my blood pressure and I am at risk for fainting. At age 75, hitting a concrete sidewalk could be lethal. My diabetes is the least of my problems. I’ve got that well-controlled on a ketogenic diet. Due to the gastroparesis and the small size of my remaining stomach, I can only eat about 4 ounces of well chewed (or blenderized) food, which I do every two hours or so, around the clock. I wake up every two hours during the night, eat something and go back to sleep. If I fail to eat, or if I sleep through for another two hours, I will get bile reflux up into my bronchial tree, which is not fun. Some of my symptoms are unique to esophagectomy survivors, some are shared with diabetic dysautonomia sufferers, and some with non-diabetic dysautonomia sufferers. It is a wide spectrum of problems. I’m telling you all this to raise awareness of dysautonomia, since you seem to already have one aspect of it. Gastroparesis is not an isolated coincidence, unrelated to your diabetes, and it is probably not the only dysautonomia related symptom you will have.

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