No News is Good News

Just wanted to provide a quick update.

Life with PSC has been relatively calm and quiet for me the last nine months. I continue to have my liver bloodwork run every few months and it has remained pretty stable – still elevated, but normal elevated for me. The itching, fatigue, and nausea has been at a minimum and I’ve been able to lead a normal life (knock on wood).

I have had a couple of itchy spells the last few days, so I’ll keep my eye on it and run my bloodwork if it continues. My hope is that it’s just the change in weather…

In more exciting news, the annual PSC conference is being held in Rochester, Minnesota this year.  Since it’s so close to home, I’ve decided to attend to learn more and meet other PSCers. It will be my first time attending and my husband and parents have decided to join me as well.

I’m sure I’ll be posting soon with a wealth of knowledge to share. Stay tuned…

Thanks for joining me on this journey.

~Liver Life to the Fullest

PSC Awareness Day

Happy PSC Awareness Day!

It’s been a while since I’ve shared on my blog and what a better reason to post?

For those of you just finding this blog for the first time, Primary Sclerosing Cholangitis (or PSC) is a chronic disease that affects the bile ducts in the liver. Essentially, the bile ducts become inflamed which results in scarring and narrowing of the ducts. This leads to blockages which means bile is not able to flow properly. Symptoms often include itching, jaundiced skin or eyes, nausea, abdominal pain, and/or fatigue. Ultimately the disease damages the liver and many patients eventually require a transplant.

I was diagnosed in 2016 and have already had my fair share of ups and downs with the disease in the past two years. I’ve captured my entire experience in this blog and you can read earlier posts if you’re interested.

The goal of PSC Awareness Day is to help others learn about the rare disease and raise awareness of the importance of organ donation. If this is the first you’re hearing about PSC, I encourage you to take a few minutes to watch this quick video to learn more.

As for how I’m doing recently?  The past few months have been uneventful and things have been pretty normal with no or mild PSC symptoms. Some of my liver bloodwork results were even in the normal range for a short while! My Ulcerative Colitis began acting up again a few weeks ago, so I’ll likely be starting a new medicine to try to get that under control. I will provide an update if anything changes.

PSC Awareness Day (Not So) Fun Fact: More than 80% of PSC patients also have Ulcerative Colitis or Crohn’s Disease. I’m one of those lucky people!  😝

As always, thanks for joining me on this journey!

~Liver Life to the Fullest


As usual, I’m late in posting an update… so sorry! I had an ERCP three weeks ago and everything went smoothly.

The doctor was able to stretch open my bile ducts in a few areas to get things flowing again and they did not have to place a stent this time. I did experience a little nausea and pain a few hours after the procedure, but things quickly returned to normal.

I’ve been feeling really good since then and seem to have my normal energy back. Fingers crossed that the ducts stay open for a while and I continue to feel revitalized. 🤞

Thanks for joining me on this journey.

~Liver Life to the Fullest

Back At It

Now that I have an almost 6-month-old, I realized it’s been about that long since I last posted and figured it was time to provide an update on my PSC journey.

Things continued to go smoothly for the first few months after the pregnancy. I did have the privilege of getting another colonoscopy in early April (my third one in four years) because I experienced a minor flare up with my Ulcerative Colitis. Everything resolved itself quickly and is back to normal.

During this time, I also began experiencing off-and-on itching and upper right quadrant (URQ) discomfort in my stomach.  I had a regular check-in already scheduled with my local GI doctor so I decided to run my bloodwork and talk with her about next steps.  Sure enough, my liver function tests (LFTs) were elevated. I was feeling okay at that point so we decided to check my bloodwork again the following week. If they were still elevated I would consult with my doctors at Rochester Mayo.

The next week I experienced a low-grade fever and upper stomach discomfort one night. My blood tests were even higher, so I was able to schedule an appointment at Mayo this past week. I continued to experience sporadic discomfort and fevers at night, but they quickly resolve after a couple hours.

I conducted more blood tests (as you can imagine needles don’t even phase me anymore), and conducted an MRI of my liver and the bile ducts at Mayo last Tuesday. The next morning we consulted with my specialist on the results. As suspected, there was a narrowing in the common bile duct and in a couple of the same problem areas as before.

For those of you not too familiar with PSC, the narrowings can cause bile to back up in the liver ducts, resulting in it pooling in one location for a while. This can lead to an infection and is likely what was causing my low-grade fevers and stomach discomfort.

We’ve scheduled another ERCP procedure for next week to open the blockage and stretch the ducts with a balloon-like tool and/or place a stent.

It sounds like this may continue to be a routine procedure for me when things worsen because it’s really the only way to alleviate PSC symptoms until I get to the point of a needing a liver transplant. Antibiotics can help prevent infections, but they are not an ideal solution to be on long-term due to the possibility of eventually becoming immune to them.

I’ll provide an update after the ERCP next week.

Thanks for joining me on this journey.

~Liver Life to the Fullest

We Made It!

As many of you already know, we were blessed with a beautiful baby girl three weeks ago. Praise the Lord!

The remainder of my pregnancy was uneventful and the birth went as smoothly as one can go. I ended up scheduling a c-section based on the doctor’s recommendation due to having had one with my son. Turns out baby girl was breech anyways, so I was destined to have a c-section even if we didn’t schedule it. 🙂

Recovery has gone well and we’re back home getting settled into a new routine as a family of four. Other than lack of sleep at night (due to baby’s schedule), things are going well.

I have not experienced any PSC-related symptoms post-baby, but I will continue to monitor my liver bloodwork regularly over the next few months to keep an eye on things.

Our daughter appears to be a happy, healthy little girl with no complications from all the hospitalizations, procedures, and antibiotics I endured during the pregnancy.

Thank you to all the prayer warriors out there helping keep both baby girl and I safe throughout this uncharted territory.

Thanks for joining me on the journey.

~ Liver Life to the Fullest

The Home Stretch

We are officially in the home stretch of my pregnancy—less than five weeks until baby day!  It’s been a while since my last post so I thought it would be a good time to provide an update.

I last left you at the end of July when I had a stent removed from my common biliary duct. I experienced a handful of mild fevers over the course of the next month but my antibiotics and/or Tylenol alleviated them very quickly.  Fortunately, I have not had any additional hospital stays or procedures since.

I did experience some itching during that time and at the end of August I forgot to take my antibiotics one day while on vacation. It dawned on me that it was the first night I wasn’t itchy in quite a while.  Since I hadn’t had a fever in more than a month, I decided to forego taking the antibiotics for a little while and see what happened. Sure enough—no more itching or fevers (though the itching may have been just a coincidence).

I’ve been antibiotic, itching, and fever free since and my liver bloodwork is now in the normal range (similar to when I was pregnant with my son). My gut tells me that having the blockage and stents early on in the pregnancy caused my body to try to reject the stents which led to all the fevers/infections.

We did have another health scare last week, but something I’ve never experienced before.

My back seemed to be out of alignment at work one day but I was able to walk it off a bit. A short while later as I was driving to grab some lunch, my right hand began to go numb. I quickly pulled over to call my husband to come meet me.  Meanwhile, I called my OB’s nurse line to see what I should do because I thought it might be a pinched nerve in my back due to the way the baby was situated.  As I was on the phone with a nurse, the right side of my mouth began to go numb as well and affected my speech. The nurse urged us to go into the local Emergency Room (ER) as quickly as possible.

By the time we arrived at the ER, I was experiencing a lot of confusion and unable to answer simple questions or speak clearly 100% of the time. The doctors conducted some bloodwork, neurological tests, and an MRI scan of my head to ensure I was not having a stroke.

I began returning to my normal self within an hour of being at the ER and all the tests came back normal. It was assumed that I was having a “complex migraine” which may present itself differently in pregnancy than a normal migraine would. The doctors quickly sent us on our way and said to return if it worsened.

Fortunately, baby continued to move throughout the episode, reassuring me she was fine (and we confirmed with a recent ultrasound). 😊

We’ll continue to take each day of this pregnancy and PSC life one day at a time. I’m praying I’ll be holding a little bundle of joy the next time you hear from me.

Thanks for joining me on the journey.

~ Liver Life to the Fullest

Small Improvements

I apologize for the delayed update. Being a pregnant, working, PSCer with a toddler running around does not allow for a lot of free time and energy to write a quick blog post at times. 🙂

As planned, I had another ERCP procedure at Rochester Mayo in early July. The doctor was able to successfully remove the existing stent and dilate the entire common bile duct with a balloon-like tool.  He also dilated as many of the smaller bile ducts as possible without using any imaging due to the pregnancy. The doctor felt as though the problematic area of the common bile duct was open wide enough and did not require another stent placement at this time. He was very knowledgeable and intentionally spent time with us discussing the procedure and answering our questions.

I have experienced fevers and upper right quadrant pain a few times after the procedure. Fortunately, antibiotics and Tylenol alleviated the fever/discomfort rather quickly and I have not had to go back to the hospital. I have also continued to experience some itching, but it’s manageable at this point.

The plan is to remain on the antibiotics for the remainder of my pregnancy, with the hope that I don’t require additional ERCPs or hospital stays.

In lighter news, we did find out we’ll be adding a baby girl to the family! Our two-year-old son lovingly refers to her as “baby chicken” for some reason and I have a feeling the nickname may just stick.  🙂

As always, I’ll continue to do my best to keep you up-to-date on this adventure. Thanks for joining me on this journey.

~Liver Life to the Fullest

Change of Plans

If I’ve learned one thing from having PSC, it’s that plans can change in an instant – whether it be treatment plans or weekend plans. Especially when you’re a rarity and pregnant with a stent placement.

I ended up consulting with the liver specialists at Rochester Mayo this past week. The appointment started off by updating them on the last year and half of my PSC journey and focusing in particular on the course of treatment and fevers during my pregnancy.

The Mayo doctors don’t typically recommend continuous repeat stenting more than a couple times in PSC patients, and thinks the fevers may be caused by my body trying to reject the stent – but of course there is no way of knowing. Since my situation is unique and they haven’t seen a similar patient, my care provider consulted with a team of specialists to put forth a plan while we waited.

After the specialists reviewed my previous scans and bloodwork there was some concern that the affected bile duct may not be as stretchable as it should and want to run some tests on the duct tissue. We scheduled another ERCP at Mayo for this week to try to dilate/stretch the duct and not place another stent if possible.

I ended up coming down with a brief fever on Thursday night but it quickly subsided and I felt much better after some sleep. We then headed to my family’s cabin to celebrate the holiday weekend and relax after a hectic week.

I started to experience some upper abdomen discomfort and another fever Saturday afternoon so we decided to head to the Mayo ER as my doctors recommended.  Fortunately, my stomach discomfort went away during the car ride after eating some crackers and my fever faded after taking my antibiotics.  By the time we reached the ER I was feeling much better, but was still experiencing some twinging behind my right rib cage.

The doctors ordered the usual workup for my fevers to see what was going on – bloodwork, ultrasound, and urine analysis. Being that it’s a holiday weekend, the ER was swamped and it took quite a while to get all of this coordinated and test results back.  After waiting a total of six hours, we finally chatted with the doctor and everything came back normal and as usual he couldn’t figure out what caused the fever.  Since I no longer had a fever or discomfort, they decided it was best to send me on my way and have me come back if things worsened.

In the meantime, I’m to continue taking my antibiotics and take Tylenol for any fevers that happen before my procedure on Wednesday. We decided to lay low for the rest of the weekend near Rochester in case anything else pops up.

We will continue to go with the flow and adjust our plans as needed to keep myself and this baby safe.

Thanks for joining me on this journey.

~Liver Life to the Fullest


Just a quick update for you.

I was discharged from the hospital today as planned. The 48 hour review of my blood cultures did not reveal any specific bacteria, so the doctors decided to send me home on the antibiotics I had been taking previously since they are safe for baby.

The doctors are still all unsure of what is causing the fevers as there are not any other clear symptoms or signs. One doctor mentioned there are all sorts of tests/scans they could run, but since I’m pregnant, many of them could be harmful to baby. Since there’s no symptoms pointing us in any direction, we decided it’s safest for baby to see how things continue to progress.

So fingers crossed that the fevers subside for the rest of the pregnancy and/or for answers to become more clear. Our hope is perhaps the doctors at Rochester Mayo may have some insight as to what is going on as well.

For now, I’m home and feeling pretty much back to normal (minus the lack of sleep from being in a hospital setting).   We’ll continue to take this one day at a time and do whatever it takes to keep baby safe.

Thanks for joining me on this journey.

~Liver Life to the Fullest

Déjà Vu

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:

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.

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.

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.

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

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.

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