I’ve been having a battery of tests run–not just the daily labs, but outside tests as well, mentioned in my other posts. So, an update on my medical state…
Phosphorous: After doubling my phosphate supplement, my phosphorous levels are back to normal, so all is well on that front!
Supplements: Unbeknownst to me, my calcium supplements had been doubled, but are now back to normal, once-daily dosages. My magnesium levels have remained solid, despite only once-daily supplements (my doctor always prescribes 3x/day, but I begged off and once has been enough). She started me on what seems like an unnecessarily large dose of Omega-3s, but it can’t hurt! I am also still on 3x/daily Miralax. THAT’S really crappy.
Albumin: It was really crappy but is starting to look less crappy. I don’t know the numbers, but my doctor has mentioned IV albumin if the numbers don’t start to improve with a higher protein diet. (Since typing this, I learned that my albumin levels were up today, so… That’s good!)
Allergy testing: I had blood tests done to do initial allergy testing, but my allergist said that those aren’t always reliable–if something comes back positive, then I am 100% allergic to it, but a negative result still means about a 30% chance that I’m allergic to it. Good news: I’ve tested negative for everything. Bad news: my (regular) doctor says that, because my albumin levels are so low/were even lower when the allergy test was done, she’s not surprised that everything has come back negative, because I don’t have enough protein in my blood to react properly to the testing (or something like that… I didn’t question it). It’s more likely that there’s at least a 50% chance that I could still be allergic to the things I tested negative for. So, I still wear the Red Badge of Peanut Allergy, until I can have a scratch-test done, which is not done in the hospital.
Endoscopy/colonoscopy: Good news: All of the biopsies came back negative. Bittersweet news: I have gastritis from restriction and acid reflux. That explains some of the bloating and stomach pain.
Gastric emptying study: I had to eat a radioactive sandwich with gloves on! I went down to nuclear med at 8:15, ate the superpowered sandwich, leaned against a machine that showed my bright white stomach, waited 90 minutes, then went back downstairs to nuclear med and learned against a machine that showed my still-bright white stomach and some bright white intestines. My gastroenterologist likes for there to be more in the intestines than there was, so gastroparesis it is. Luckily, it’s not severe! There’s an antibiotic that, at a very low dose 3x/day, has been proven to help GP, so she started me on that and my doctor said that I should start having relief from the bloating. Maybe it’s a little bit of a placebo, but I do think it’s helping a little.
The diagnosis of GP is really bittersweet. The condition is generally chronic, but I believe that my GP is caused by restriction and will eventually move at a rate appropriate to the amount of food that I am eating. There may be a chance that it won’t improve, indicated by the symptoms I was having when I was eating an amount that my stomach was used to, but I’m hopeful! A friend said that hers resolved with proper nutrition so I am fairly certain that will happen to me!
Sleep: After pushing one of my medications closer to my ideal bedtime, I fell asleep easier last night, so let’s hope that continues (it’s been a struggle!!). Also, NIGHT. SWEATS. But that’s either my hormones or my metabolism turning on, either one I will welcome happily back into my life!
Mobility: I am still only allowed 10 minutes of walking a day, which I typically don’t use–if I save my walk, then I can walk with a CNA/nurse if I need to get a salt packet, coffee creamer, the bathroom key, towels, etc. If I use my walk, then we’d have to wait for someone to bring them, which can sometimes take a little while. Everywhere else, I have to be in a wheelchair. However, I am allowed to shower standing up, as long as my HR doesn’t increase 20+ points upon standing!
Obs: Still on 3/1, but tomorrow, that should be decreased to one hour after meals and that’s IT!! I’ve really enjoyed the company of some of the CNAs, but I’m always relieved when my obs are over.
I’m trying very hard not to compare myself to the other ED patient here, but it’s hard not to. She can walk wherever, can go to the cafeteria with her parents for dinner every day, has no obs, and has only been here for four days longer than I have. I also see her as significantly more underweight, but of course, ~ED glasses~, so… who the hell knows. But I need to keep in mind that she’s had the intention of moving to RTC, so maybe they’ve moved her faster, I don’t know. My head can’t compute why I don’t have free roaming privileges (well, roaming with an accompaniment) or cafeteria privileges yet, but this is MY recovery, not hers… Etc etc. Plus, her business is not any of my freaking business. Sheesh. (Except we share a wall and I can sometimes hear what’s said over there, and I see her walkin all over, but… Details).
Today is the first day that I’ve struggled with wanting to go home. I do have to admit that it really was an eating disorder impulse, though. After taking a nap and chatting with the boyfriend as well as the parents, I feel much better and am ready to take on another day tomorrow.
I have my team meeting tomorrow, which I’m a little anxious about, I suppose. Discharge dates will be discussed, and I know that I will need to defend my reasons for discharging to outpatient instead of RTC or even PHP. My parents helped me come up with some ideas for meals that I can easily manage, and I’ll continue to do that with both my dietician here and my dietician at home. Ideally, I’d like to become more comfortable with cooking, but I’m really setting out the basic, “This is exactly what I know I am 100% capable of doing” plan. I will definitely brainstorm some more complicated things as well though, so that my team doesn’t think that I plan to discharge and become complacent with total safety.
I’ll update after tomorrow’s meeting, with more of a “this is how things are mentally” than “here’s my medical chart”. But I like to write it down!
As a side note, my new shampoo and the water here are doing nice things to my hair (too soon to see healthier hair from a healthier diet… Sorry! Also, I know I need a haircut, family. I’ll get on that.)