The last time I posted on the blogette I was semi-optimistic about my health and even went so far as to say I was going to start a routine at the Y that week. Well plans change. The next day I was admitted to the hospital. Again. Sigh. The bad news is they're not really sure what's wrong with me. The good news is I haven't dropped dead yet. I needed to go to the emergency room after over 13 hours of non-manageable pain. My symptoms were the same as my September stint in the hospital: severe pain, nausea, vomiting. Tests showed elevated liver enzymes and I guess my bile duct was dilated. Luckily, there wasn't an obstruction in the duct this time (or if there was, it was gone before imaging was done) and so my bilirubin was fine, I wasn't at risk for infection, it wasn't life threatening, and I only stayed for two days. I was, most unfortunately, back on my clear liquid diet.
I'm glad it wasn't as crazy as last time, but... it's harder this time. I'm more anxious, more stressed, more sad, and they are sending me to Charleston, SC. There's a hospital there that does special tests and procedures. They're risky - riskier than any other surgeries or procedures I've had. My doctors think I have a greater chance than most of developing pancreatitis from the procedures. But they also think I need to take those risks. My other option is to not only be in pain frequently, but endure multiple hospital stays a year and risk getting another obstruction (which again, could become life threatening).
The hospital stay was shorter, but man. It sucked. Like I said, I'm weirdly anxious this time. I'm not sure why. Maybe it's because I was really, really starting to think I was doing better. I've made huge lifestyle changes, I haven't been to the ER (other than the car accident), I haven't needed to see the GI. No surgeries! Mild symptoms. So it surprised me to end up there again. I was so nervous in the hospital. I was fine and cheerful (post-pain meds. def not pre-pain meds) and I was talking to the doctor as my nurse attempted to put another IV in - never an easy job with me, for some reason. (I am used to the needles and even the dreadful "digging around" trying to find an IV and it doesn't bother me until/unless they're in my arm searching for veins for like 3+ minutes. But I did experience a new and rather discussing thing this time. My nurse got the IV, but as she flushed it with saline, it blew. That's fine, it doesn't hurt. BUT she was flushing it with fluid, so when the vein blew it immediately just sort of welled up. Not painful at all, but SO SO gross to look at - it was like a golf ball under the skin on my hand. It freaked me out. It freaked me out good.) But yes. Talking to the doctor. My nurse left to get another nurse to attempt an IV. My doctor and I were just chatting and then I got a nice chest pain - not unusual for me, but it was a little different from my normal pains. So what do I do? I start crying. Not at all embarrassing. I told her I was feeling much more anxious this time, and she told me to let her know if that continued - she said I didn't need to feel like that. Later that night I came really close to asking for something for my nerves as I could not stop worrying. This time wasn't as problematic as last time, so it doesn't make sense that I was (and am) more nervous, but there we have it. The hospital stay was basically just a long marathon of paranoid thoughts.
The anxiety has died down a little. Not every pain causes me to panic. My doctor also helped by giving me something for nausea which is great since 1. this illness/situation makes me nauseous frequently and 2. I'm supposed to go to the ER if I throw up. So every time I'd get nauseous, I'd start to mega-worry that I was about to end up back in the hospital. At least with the medicine I can sort of control that (to an extent).
The doctors don't know what's wrong, but they've got some ideas. (And at an appointment the other day, I was told there are "probably several different things wrong" with me. Terrific!) The very specific thing they're hoping to find out about via Charleston is my Sphincter of Oddi. Oh my gosh. "Oddi" is pronounced just like the letters O D. I could not stop laughing in the hospital when they told me the name. It sounds ridiculous, like something straight out of Thor. There's not much I understand about it, but at least I can get a kick out of the name.
I'm also trying to change my diet even more. I've cut a lot of bad food out of my diet because I want to lose weight - and then I cut even more food out after my last hospital stay. Right now my diet really isn't bad at all, and they told me that there's probably no preventing what's happening to me, and that I'm not causing it with diet, but.. that I should cut out fatty foods anyway (a good rule for anyone, especially someone without a gallbladder and with recurring liver issues, I suppose). So I'm struggling to cut out even more kinds of food. It's been loads of fun. And wildly successful! I didn't just eat a bowl of ice cream.
So right now they're worried about the liver, the duct, and the pancreas. (And the sphincter of Oddi, which I think is just included in those things.) But I also developed some troubling (like really troubling) symptoms the other day, and now I need to be tested to rule out cancer. I don't actually think I have cancer. I don't think the doctors really think I have cancer. But I also don't like hearing the word "cancer" while in a doctor's office. So that's got me kinda scared. I also started having some telltale endometriosis symptoms while in the hospital. Go figure. I was all, "e tu, uterus?" Because for a while, the endo had really died down. There's some concern now that the endo growth on my intestines is causing problems. We shall see.
Right now this is where I'm at: I've been in near-constant pain since leaving the hospital (it doesn't usually go above a 5 or 6 unless it flares, so I consider that mostly tolerable and manageable). I get tired early in the day because I've been trying to not just lay down all day. (And I still have family members insisting I'm not actually sick and that I "just need to see a nut doctor." Because my mental issues run so deep that I've now got the ability to make bile ducts appear dilated on MRI results.) I get nauseous, but it's under control. I'm more anxious than normal. I'm to look for certain symptoms and to return to the hospital if my pain increases, if I throw up, if I get a fever. I had blood work the other day and there are a few tests on there that could send me to the hospital if they don't check out okay (or near okay, anyway).
I'm really freaking sick of all of this. It's been years now of medical crap and surgeries and hospitals and I think that's partially why I'm feeling on edge. But I'm trying to not be too bummed out about it. Or at least to not let being bummed out ruin every moment of every day. I'm trying to think of Charleston as a nice and well-needed vacation. (I don't know how I'm going to swing the trip lol? but I'll worry about that after I hear from them.) And my golf ball hand is mostly back to it's normal size, color, and tenderness, so there's that. :)
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Charlotte
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