Usually I go in to treat my lungs, so we got started with all of that like normal on Tuesday. On Wednesday, the doctor ordered an ultrasound of my liver because my bloodwork came back showing my liver enzymes were elevated. Liver failure and complications is a concern in CF, so he wanted to see what was going on.
It turned out I had a stone in my liver, and everyone was very surprised I wasn't having any pain from it. Last time I had stones in my system was 6 years ago when my roommate in college, Ami, took me to St. John's (now Mercy) in the middle of the night because she said I was "green in the face and doubled over in pain." It turned out I had a LOT of stones in my bile ducts that time, and they removed my gall bladder. Luckily this time there was one, maybe two, and no pain. They still needed to do an ERCP to remove them, which I went through last time, so I knew what to expect.
On Friday, I wanted to stay through the weekend to continue to get better and so we could do the ERCP on Monday. It could have been done as an outpatient procedure, but I really wanted to get it over with while I was there. I'm very glad I did that considering what all went down.
By Sunday I started having another complication though, one that I've never had before. I began coughing up blood. I've never, ever in my life coughed up pure blood before. It's really difficult not to freak out over it. For any normal person, that is very not normal. For CF people, it's more common and though my doctors tried to tell me that this sometimes happens, I was never quite happy with their responses about it. The plan was to wait and see, and watch it. The good news is I wasn't having any other problems; shortness of breath, pain, and I wasn't feeling worse.
Sunday night I went down to the cafeteria around 11 pm to get myself a snack, since I couldn't eat or drink after midnight in prep for the ERCP Monday morning. I had a giant soft pretzel; it was okay, but I figured a good choice since those can be pretty filling with all that dough.
Monday morning came and I was still coughing up blood, but my lung doctor didn't feel it was a problem to keep us from doing the ERCP. Then my nurse told me that, turns out, I wasn't scheduled for this until 3:30! Are you kidding me? I've been here all weekend, they've known about this since Friday. Plus, they expect me to be without food for over 15 hours? I'll pass out! I complained and said I wasn't happy about it at all, I was told it would be in the morning. The nurse felt bad, even though it wasn't her fault, and I know she conveyed my feelings about it. Luckily, they had a no-show and called me down at 10:30 am.
I'll take a moment to detail what an ERCP is, for those of you wondering. They put you to sleep, but you still breathe on your own, and insert a little camera and scope down your esophagus, thru your stomach, into the biliary ducts (where the biliary tree drains out and the pancreas meets up) and then thru a process, clean out the stones and pull them out.
I was sleeping fairly quickly and the procedure went quickly too. I was back up to my room around 1:30 and ready for lunch.
But then I started having a lot of pain. Like, the kind of pain I would have expected while the stone was still there. I asked for some pain medication because it was very intense, and I even have a fairly good tolerance for pain. The pain meds helped, but then the pain started creeping back. It was central in the front of my abdomen and radiating to my back. The doctor came by and said it sounded like I had pancreatitis, or inflammation of the pancreas, which is common with this procedure. Since the pancreas and biliary duct meet up in almost the same spot (seriously, it's like a fork in the road) it's not uncommon for the pancreas to get agitated. Also, food doesn't help which is probably why the pain came back so soon. I stopped eating, which in retrospect was a huge disappointment! How sad, to have my food and then have it stolen away again; I barely ate my turkey sandwich. He ordered a little more pain meds for me which were also making me sleepy.
I didn't feel up for much and slept most of Monday, which was great anyways because I was hoping to catch up on sleep that day. Boy did I! I finally woke up around 8:30 that night and had some beef broth. I only needed the pain med a couple times, and made it thru the night without needing them.
Tuesday morning still no pain, so yay! I was most likely cured, and we would give food a try for lunch. I was still coughing up blood though, the few times I actually did cough. Still, no one was worried about it. Eating solid foods went fine so that was really good to eat food again.
Yesterday I finally came home, though when I left I was still coughing up blood. Today seems to be better, so I'm crossing my fingers it is. The plan is to do IV meds until Monday, which is when I return to work, and when I also have my follow-up appointment.
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