I’ve been feeling pretty awful, as I intimated in my post the other day. High fever and abdominal pain topped the charts on the ick factors most of the week. Tuesday I was so frustrated with it, I went to my internist who was also puzzled. Since I was scheduled for an endoscopy on Wednesday anyway, my GP faxed over my lab results to the GI doc, since they indicated elevated liver enzymes, among other things. The GI doc did the endoscopy and found that my stomach was in pretty bad shape, so he changed the PPI I’m taking and increased the dose significantly. But that still left the mystery of the liver enzymes, severe abdominal pain and fever. “Well, I think you have gall stones” he said. “But I don’t have a gallbladder” I said at the same time that Seth said, “But she doesn’t have a gallbladder!” Turns out, it doesn’t matter. You can get gallstones even after a cholecystectomy, and although I find this to be entirely unfair, it doesn’t negate the facts. He scheduled an MRI for me for the next day and said depending on the results of the MRI I would either need to have an emergency procedure on Friday or we’d have to talk about next steps. He prescribed me percocet for pain, noting that there was no possibility that codeine would cut it for that level of pain (have I mentioned that I love my gastroenterologist?)
I never made it to the scheduled MRI, because Wednesday night the percocet wasn’t cutting it. Six pills in six hours and I was still sobbing and screaming in pain. My husband told me to go to the ER but I stubbornly said no way no how. By 11pm, I had conceded. I put some things together, defrosted some frozen breastmilk for Tobie, and had a neighbor take me to the hospital. I was admitted to the ER just around midnight, but didn’t get a bed until 1am. And then I laid in bed sobbing until Seth called the charge nurse at 2am and demanded that SOMEONE see me, because I hadn’t so much as had a nurse say boo to me. The nurse told him I couldn’t have pain medicine until the doctor saw me, and he was with other patients ahead of me. Obviously we knew this, the question was how long until a nurse, at the very least, checks in on me. Finally around 2:30 I got seen, and shortly thereafter, Seth arrived at the ER (my mother came to stay with the kids at the house so he could come help advocate for me). I got Dilaudid shortly thereafter and things started looking up. The ER doc was planning to send me home (and what on earth would I have done once the dilaudid wore off?), but my GI Doc had them admit me. The hospitalist who admitted me kept telling me it couldn’t possibly be a gallstone because my bilirubin was not elevated, but I didn’t know her from anyone, and I was more willing to trust my GI doc’s opinion, even at 4am over the phone.
Once I was admitted, I asked for a breast pump. When the shift changed at 7am, I asked again for a breast pump. I acquired a breast pump at 11:30am only after having contacted a friend who is a lactation consultant at the hospital – *she* is the one that made sure I got one. I find this wholly unacceptable, but fortunately, I’ve got friends in high places (hah!), so I know who to send the letters to, and they’re already written. Meanwhile, I was still in the ER waiting for an inpatient bed to open up, which didn’t happen until 3:30pm. The only plus side was that I got frequent visits from the Dilaudid fairy throughout the day.
Dilaudid, at least, cut my pain down to something manageable, but it had curious side effects. Like all narcotics, it can be sedating, it can make a patient itch, it can cause or exacerbate nausea. Turns out, it can also cause hallucinations – in my case both visual and auditory hallucinations. I kept hearing snippets of music out of the corner of my ear, but if I turned toward the sound it was gone in an instant. One day, I watched a tiny little bug crawl on the bathroom tile. Suddenly the tile pattern was swirling all around it in a psychedelic freakish way. Then the pattern morphed and then the tiny bug (I swear, I’m shocked i could even see it, it was teeney!) morphed into an ant and then a, I dunno, something bigger than an ant and then a giant spider and the swirls kept happening and suddenly I said, “Don’t be stupid, Perky, this isn’t real!” and it was gone – vanished as if it had never existed (which, obviously, it hadn’t!). Sometimes I would hear voices, or see people in front of me who weren’t there. For the life of me I can’t figure out why someone would WANT to have these feelings, hallucinations, sensations. There’s nothing pleasant about it, though I’ve heard that people actually get addicted to this stuff. Yuck!
So Dilaudid aside, while I was in the hospital, I did get that MRI that I had been hoping to get as an outpatient, and it showed that the common bile duct was significantly swollen/inflamed, though they didn’t see a stone per se (they hadn’t used a contrast dye in the MRI, so it would have been a long shot to visualize it). I was scheduled for a procedure the next day to take a look, remove the stone, if any, and to enlarge the opening to the common bile duct so that it wouldn’t get obstructed by any future stones. At least I knew that all the pain and misery wasn’t just in my head. There was actually something I could point to. And wouldn’t it be a bonus if it turned out that this was the whole reason behind the continued nausea and vomiting? I was eager for the procedure to be over with so I could find out if there would be relief at last. I was scheduled for Friday afternoon and had hoped to be allowed to go home by Shabbos.
The procedure was supposed to be done under light anesthesia, but because nothing is ever simple in PerkyLand, and I was only 7 weeks post partum, they had to intubate me and do full anesthesia because the risk of aspiration was too high. (Turned out they were right to do so – apparently I threw up a bunch of times during and immediately after the surgery) This meant I’d be staying at least one more night. Not shockingly, my GI Doc was right – there was a stone, which he removed, and then widened the opening to the duct so that it wouldn’t get obstructed in the future. The doc said my pain should get better in about 24 hours.
Unfortunately, the nausea/vomiting hasn’t gotten any better and I’m still in a fair bit of pain. Hopefully, the nausea is related to the stomach issues discovered at the original endoscopy that started this whole saga and fixing the stomach problems will be the answer. But since it was still an issue, my doc wasn’t fully comfortable sending me home Saturday, so we waited until Sunday to see if my pain would go down and if I could eat anything. Seth brought Tobie to me Saturday night so I could see her and feed her and that was the first time I’d seen her since Wednesday. Finally, Sunday morning I was allowed home.
I’m seeing my doc this afternoon to talk about next steps, but mostly, I just want to sleep. I feel like I haven’t slept in days, even though pretty much all I *did* was sleep while I was in the hospital!
Oh my. Praying for a full and speedy recovery.
You are an inspiration to me on how to be a good medical advocate for yourself. You rock!
Wow. I am so sorry. Glad at least one piece of the puzzle has been solved, an dthat you are in general in good hands mediclaly and have an amaizng advocate in your husband.
Still thinking of other populations who don’t eat. I recall learning of Shoah survivors in the camps given food by their liberators and simply throwing it up. Maybe I’m misremembering that specifically, but isn’t it true that after a period of little or no food being taken in, starvation or even a fast, the body can’t handle rich food? Maybe that can be true for any food, in some situations.
Another idea, could your situation mimic one of a bullimic? We always hear about the consequences purging has. Isn’t it that the body learns to vomit and becomes unable to take in food? So, even though you weren’t purging like someone with an eating disorder, the extreme hyperemesis may have caused your body to now be unable to eat in the same way, but it was masked as ongoing hyperemesis? I think bullimics are also warned about dental problems.
So, yeah, either specialists in these areas, or even the same type of docs you are seeing but who have different expertise that comes from treating a different population, could be worth consulting or having your team consult. Seriously, sometimes there are problems that just aren’t seen by respected physicians who treat generally healthy middle-class adults with insurance.
And refuah shleima shleima!
Well, one problem down, and hopefully the rest should be sorted before too long.
It’s true that when food causes vomiting over a certain period of time, even after the initial cause is gone, you can still get a nauseous reaction. Also that you can’t just give a starving person food and expect them to eat and keep it down as normal. However, you have a number of reasons operating together and probably there are a number of puzzle pieces all contributing to the big picture. Multifactorial cases are always the hardest ones to treat! The re-feeding expert sounds like a good guy/gal to bring on board as part of the team, but since your doctors are already on top of this, there isn’t a lot more to add, except good luck!
Bea
Yuck. Hope you’re feeling better soon.
Oy Karen! I’m so sorry that all this is happening!
I hope the problem is found and SOLVED soon. I wish I lived closer to help you out. You need this like a hole in your head!
I’m so sorry to hear this. Crossing my fingers for a super fast recovery!!