And on the seventh day we rest

Hey CPMC, I just met you, so this is crazy, but — wait, it’s been seven days?!?!?!

Like I said in my last post, I’ve been here since Sunday evening. Now that’s crazy. I’ll have been here for seven out of eight nights of Chanukah, and I still have a few more days to come. I’ve been quite the busy bee the whole time though! In those days, I’ve had an EGD (upper endoscopy), antroduodenal manometry, abdominal X-ray, PICC placement, colonoscopy, abdominal CT, capsule endoscopy, esophageal manometry, an upper GI series (swallowing Barium on camera), a gastric emptying study, and enough bloodwork to fill the Pacific Ocean. I’ve also been on continuous heart monitoring since I think Tuesday. I’ve seen more doctors and med students than I can count and have gotten to know most of the nurses in my area and GI lab. I’ve been tested for all kinds of things from common (still no ulcers!) to the obscure (porphyria, anyone?) I even had a psych consult — I met zero of the screening criteria for depression. 🙂 Bet y’all could have told them that! (still a good thing to check)

Lots of things have come back normal. Lots of things have come back a bit off, but not nearly enough to explain what’s been going on. Everyone acknowledges that I’m a really challenging, unique case. Lots of good heads are coming together. Dr Shetler and my awesome hospitalist Dr Cheng have been the driving forces, while working closely with a cardiologist who specializes in rhythm issues. Because this is a teaching hospital, there are lots of fellows, residents, and interns, which is great because sometimes they come up with fresh ideas and provide another set of eyes and ears that are able to spend lots of time with inpatients.

It got to the point where on Thursday it was being suggested that maybe I just had crazy levels of visceral hypersensitivity. That is a big part of why I had the psych consult. There are mede for the pain that work in patients with coexisting depression (which are also safer for the heart) and ones that are only safe in patients my age without depression…but those prolong the QT. Guess which ones the psych resident tried to recommend yesterday? Yeah I dont think he quite got the whole risk of death thing. His attending came by later though and said that really the visceral hypersensitivity meds didn’t make sense, especially since by that point we’d found something else (getting there!) And that they didn’t think I had depression or an eating disorder. 🙂

So back on Thursday, I found out that while my capsule endoscopy didn’t show any structural abnormalities, the pill did get stuck at my lower esophageal sphincter for twelve minutes!!! That’s a lot! So they did an esophageal manometry — easiest test ever, just an NG tube placement and little swallows and my nurse said I should come back and tell all her patients that — to look at those muscles. The doctors started talking about a Botox injection into the lower sphincter to help let food through. This procedure carried the prospect that I might leave in a few days eating and drinking!!! Needless to say, I was very excited. Unfortunately, that evening I found out that because my manometry was normal, I needed another test and probably couldn’t get the Botox.

All I — and my doctors and my parents — can say isTHANK GOD!!! Yesterday morning I swallowed Barium (and started throwing it up under fluoroscopy) and pretty quickly the radiologist told me something was really wrong. To start, my stomach just didn’t look right. It was large and floppy and dilated and looked really old. My docs have never seen anything like it. And then my esophagus and stomach weren’t moving things through well. In the words of the radiologist: there’s something really wrong; you’re not making this up. Thanks doc!

They went ahead and got me into a gastric emptying study hat afternoon…no numbers yet but it looked pretty severely delayed. And I was refluxing undigested eggs after four hours so….

ETA: if I’d gotten Botox with these issues, everything that wasn’t emptying out of my stomach would have just come flying up and I would have been even sicker.

Monday everyone is going to meet to try to figure out what to do with me. We don’t know what causes this and I can’t take any medications for it, so I may well be looking at surgery. I’ll be here until at least Wednesday.

We’re also still trying to get my heart rate under control and having issues there, so I’m still on telemetry. Because of the monitoring I need I’m on the liver and kidney transplant ward…apparently I’m between the kidney and liver patients in terms of difficulty for the nurses medically but my smile makes up for it.

I so grateful to be in the right place and getting more and more answers. We will get there one day soon!!!! I have the weekend “off” from testing, which is nice because I’m exhausted. Monday we’ll all hit things hard again. We are getting there! Next year I’ll eat latkes and applesauce!!!

Love you guys!

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