It has been another week here at Chez Evid. I had a couple of bad nights, we did some strategizing and my much anticipated doctor’s appointment for Tuesday got moved back a week. Plus some other minor stuff.
First, the minor stuff. My feet and ankles are all puffy and swollen. One of my meds is clearly making me retain water and that is messing with me tracking my weight. Nothing I can do about it, but it is irritating.
Ironically, I require more salt than the average bear because of my dysautonomia. But the puffiness in my feet seems unrelated to my salt intake because my fingers aren’t swollen or puffy. Historically, that was my key indicator for when I was retaining water.
Which brings me to my primary complaint about my current state of being. I wish I had a guide. I have no idea what is a symptom worthy of concern. And even if I did, who would I ask?
This was kinda the subject of the meeting David and I had with Mary, my Complex Care Coordinator this week. What am I looking for in a GI? My gastroparesis is generally under control these days. But I continue to deal with an acute, but rapidly heading towards chronic situation with this presumed small intestine bacterial overgrowth (SIBO) and my inability to increase the feed rate on my pump. Not to mention my deeply mysterious to all of the medical world G/J tube.
But the priority at the moment remains my current struggles with presumed SIBO and my inability to increase my nutrition. We know that the antibiotics are helping, because I felt worse when I finished my first course. I managed to convince the covering docs that this issue was not tube related, because they put me on a second course. But I will be finishing that soon. And then what?
I did some research on SIBO this week and it turns out that we know very little about it. We used to think it was rare, but it seems to be increasingly common. And there doesn’t seem to be any agreement on what the best test is to determine if you have it.
I tried to find any papers on enteral feeding and SIBO and I found one. But it was not at all relevant to my situation. But I did find further confirmation that gatroparesis puts me at higher risk for SIBO. Yay?
It turns out that my regular GI did follow the appropriate treatment protocols for SIBO, even if he is a lousy communicator. So that is good, I suppose. Where it gets dicey is in resolving SIBO. It seems like it is a difficult thing to do. Anecdotally, the papers refer to doctors having their patients on antibiotics on an ongoing basis, rotating them at set intervals to prevent antibiotic resistance. Others have their patients on antibiotics 10 days a month, just to keep the overgrowth at bay.
Neither of those options appeal to me as I near the end of my second round of antibiotics. They definitely help. Life in noticeably better when I am on them. But they are not curing me. I am fighting the heavy nausea that arrived with SIBO as I write this. In fact, I decided to write this post to help distract me from the nausea until I can take the anti-emetic that helps it. It is kinda working. But it is also exhausting. But what isn’t exhausting in my life right now?
It turns out that despite my best efforts to not hang any hopes on doctors, I really was looking forward to my appointment next week with my doctor from Stony Brook. She is the one who led me directly to my diagnosis by ruling out absolutely everything else first. I like her, I trust her and she is empathetic.
And if that alone wasn’t enough to get me excited for next week’s appointment, she is also located not from from my BFF whom I have not seen since we moved downstate a year ago. Our respective lives have just been too busy and complex to get together. I saw her more when I lived in Oregon.
Anyway, the plan was for us to get together after my appointment. The deal is, I get a hug, she and David get to have lunch together, I get another hug and we both crawl home exhausted. I am being glib, but I really was looking forward to just being in the same space as her.
I got a voice mail late yesterday (Friday) afternoon telling me that my appointment had moved back a week. I have no filters, so I burst into tears as my disappointment overwhelmed me. The message told me to call back to confirm and I did. And I remembered just how hard it is to get a hold of anyone in this system. After almost 6 minutes on hold, David reminded me that these are the kinds of things Mary can do for me. I texted her and confirming my appointment ceased to be my problem. But I was still disappointed. At least my BFF is still available the following week, so I still get to see her.