GI Doctor Keller finally called, he's a fast talker with lots of information. Basically from all the biopsies they did it's a good chance it is colitis with a probable chance of Crohn's. Here are issues that he has to deal with:
First, I'm dealing with high liver enzymes and he needs to see other numbers as well for his continuing diagnosis development. He named off one treatment for Crohn's that is an infusion situation that is forever. Every two weeks the first four treatments (I think?) and then after that once a month (I think) I should have written this down after I got off the phone. He mentioned a few other things and then I told him what I'm dealing with, including the liver enzymes and the A-Fib situation which I'm going in every week for the next few weeks to check levels. Told him what meds they put me on, blood thinner and three others. Then he mentioned other treatments like steroids and I had to double back and mention oh by the way I'm on Prednisone as well. He laughed and said that's another complication because that is used for treating Crohn's also. But he doesn't really have a solid solid diagnosis for Crohn's and would like to use the other treatment when he does but since that is a long term permanent situation he doesn't want to start that. He wants to do another fecal test to check for the calprotectin to see if that has changed from the ultra high number of 652 down a few hundred. To him the situation is not cut and dried considering everything else going on, technically I can't be off the chemo pills forever but if that's causing issues there may not be any choice. But everything hinges on getting my system getting balanced again and back on track which may not ever happen. I told him as much and he agreed and noted that I'm more on top of things than others and have a good attitude. His nurse will call in the next day or so if an opening comes up to fit me in for an office visit. He said he was booked months out (which explains why it took so long for him to call me). Will have my headset on and ready for phone call if I'm out and about.
Oh my case worker also called back and finished our more in depth questioning about how I'm feeling, mentally and physically, all the things they need to know as a liaison to the medical team. So I've got all the various specialists and people on the case. I did tell her I was concerned with the medical bill and whether I had told them the correct billing originally and she didn't have any answer for that but it was on my mind as a concern. They ask about whether there's food or housing insecurity and with that I went into the long description of how my situation doesn't fit into one column or category. We have 'food' in the house but it's mostly 'food to make meals' rather than quick snacks or healthy things to eat. She tried to interject with the food pantry options and I went into my minor rant about our experience with that as well as the Helping Seniors meals that were a tragic failure. Told her I prefer to cook fresh food and have leftovers and the meals they have are not big enough for either of us and most of it is inedible. So hopefully she has a better idea of my 'unique' situation that is more complicated than usual.
So that's the update for now. Oh, sad news, that little rose seedling, I was trying to take a picture of it and my hand shook rolled the little pod around and busted it in half. 😭😭 I have five other pods with seeds in them so am hoping they will sprout. Really really disappointed and upset with myself about that.
Anyway, it's also drizzling rain and cloudy here. Going to do a little shopping tomorrow for needful things and then maybe fix some chicken thighs and rice. See what my energy is like. Might end up having sandwich from Jersey Mikes.
All done. Hoping for a better nights sleep tonight.
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