For the first time in a couple of days, I don’t have an air quality warning on my phone. But yesterday, the air was orange and we had an air quality warning over 320. But we have two air filters we run constantly, and we did ok with our windows closed.
The air quality is supposed to get bad again tomorrow and through the weekend, which may put the kabosh on our planned outing to the Astoria Park fair and the inaugural outing of my transport chair. But that is just life during the apocalypse.
In other, better news, I had an appointment with my GI today and he actually stepped up to the plate and went somewhere useful. Given how much pain I am in despite being so heavily medicated, it was about time.
He suggested that I may have SIBO (small intestinal bacterial overgrowth). I tested negative for it almost exactly a year ago. But I am at high risk for SIBO given my gastroparesis and less-than- stellar pyloric valve (the valve between my stomach and small intestines). The symptoms match and I agree that it is a perfectly reasonable hypothesis.
Rather than taking the time to test for SIBO, he is going with a presumptive diagnosis and has prescribed antibiotics. And that is where the fun comes in. The antibiotics are expensive ($3K) without insurance, and require pre-authorization. I emailed the practice and are waiting for them to get me my pre-auth. But it may be a day or two before I actually get my mitts on my new meds.
The GI did, finally, when pushed, acknowledge my need for nutrition when he said that if we didn’t see an improvement of my symptoms within a “reasonable time,” after starting the antibiotic, then the next step would be TPN (IV feeding).
I am feeling positive because that “reasonable time” frame coincides with my appointment on June 20th with the GI who heads the enteral nutrition team at NYU Langone. Either we will have addressed the issue and the new GI can guide me as I increase my current tube feed rate or she can take whatever steps are appropriate to restore my nutritional status to something more sustainable.
I am going from second hand reports here (aka David), but my cognitive abilities are noticeably slipping from a combination of malnutrition and over-medication. And I can’t say I disagree with him. I am well past ready to get my nutrition, hydration and electrolyte situation truly assessed by someone who knows what they are doing and cares how I am doing.
Wow. I hope this pans out and helps. I am tired of you being malnourished. It makes me angry and I’m powerless to help. I can only imagine how YOU feel about it, and your loved ones.