Well I’m writing this post as I sit in the observational unit of the hospital again. As you might have guessed, I came down with yet another fever and they’re trying to figure out what is causing it and what can prevent it from happening again. Here’s a little update on the last week:
TUESDAY
I had another ERCP procedure to remove and replace the stents in my common biliary duct. There were two placed side-by-side during the last ERCP and only one when the doctor got in there. The other one fell out and passed on its own. He removed the existing stent and put in another one successfully. We listened to baby’s heartbeat before and after the procedure and he/she was doing well.
I had no pain or discomfort after the procedure, just a bit of a sore throat, so they sent me on my way after a couple of hours in the hospital. The plan is to replace the stents every 6 weeks for the remainder of my pregnancy and stay on my antibiotics throughout. I didn’t sleep well throughout the night but the remainder of the day was uneventful.
WEDNESDAY
Another pretty uneventful day as I returned to work, continued to take my antibiotics, and just had some sore muscles in my neck from the procedure.
THURSDAY
I had a couple of follow up/check-in appointments scheduled from my last hospitalization. I met with the Infectious Disease doctor I had during my last hospital stay to discuss the plan with antibiotics and she was in agreement to stay on the course of antibiotics I’ve been using since the plan is to continually replace the stents. I scheduled a follow up appointment for 3 months from now.
I then met with my normal Gastroenterologist (doctor who specializes in management of diseases of the gastrointestinal tract and liver) to check-in on how things were going in general since another doctor conducts the ERCPs. Everything went well since I had been feeling good and we discussed the plan or repeat ERCPs and antibiotics.
We also discussed consulting and updating my Hepatology doctors at Rochester Mayo since I haven’t been down to see them since my initial diagnosis in February 2016. Since the PSC symptoms have appeared since and things are obviously progressing, we’d like to keep them up-to-date with my current status. The doctors at Mayo have more PSC patients and are heavily involved in studies and the latest findings with the condition. Additionally, if things continue to progress to the point of transplant, I’ll likely be going through that process at Mayo, so it’s good for them to stay updated and involved in my progression. The hope to go down there at least annually and continue to work with my local doctors as needed.
I scheduled my follow up appointment with the Gastroenterologist for a few months and headed on my way.
As I was getting ready for bed, I began to feel feverish / achy and had chills off and on. The fever never went higher than 100.8 degrees so I decided to sleep it off in case of was lack of sleep from earlier in the week.
FRIDAY
I felt better Friday morning. No fever, just a little tired. I don’t work on Fridays, so my son and I just laid low. We ran a few quick errands and around lunchtime I began to feel tired and feverish. It had jumped back up to 100 or so. I decided to take a nap and after 45 minutes of sleep my fever had jumped up to 101.3. I called the nurse line and they said to go into the ER as usual and that they’d notify my GI doctors.
We found care for our son, my husband came home from work, and we arrived at the ER around 3pm. As usual, they ran bloodwork, conducted a urine test, and sent me for an ultrasound of my organs. By this time I was beginning to experience some nausea but it was manageable. We also heard the baby’s heartbeat and got to see it once again.
They decided to admit me and get me going on IV antibiotics since this is the third instance of fever during pregnancy and I was still on antibiotics this time. The ultrasound came back normal and my liver bloodwork was high (like normal) but not crazy, so nothing appeared to have gone wrong with the ERCP earlier in the week. More blood tests were ordered and antibiotics given for the night
SATURDAY
My fever seemed to be gone by the morning and I was feeling much better.
My white blood cell count came back high and my sodium was low so they decided to run some additional test that we’ve never run before in case something not related to my liver was going on. The doctors wanted to continue to monitor me for at least another day given this.
All the tests came back normal, so once again, the doctors are stumped on what is causing the fevers.
TODAY
Our hope was to be discharged today, but there is no clear solution to prevent these fevers from happening since we don’t know what causes them. After 24 hours my blood cultures did not show anything, but they are usually most telling after 48 hours. The doctors feel more comfortable sending me home with an antibiotic after viewing the 48 hour results to determine what might work best, so here I sit. At least for another day.
Fortunately, we are so blessed with amazing family and friends who have supported us in this journey by praying, watching our son, visiting the hospital, chatting on the phone, and texting to help me from being bored.
I’ll be sure to give a quick update once I’m discharged and know a little bit more.
As always, thanks for joining me on this roller-coaster of a journey.
~Liver Life to the Fullest