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

Freedom

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:

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 2015. 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

The Good and The Bad

As you may have noticed, I went silent for a short while and haven’t posted since my stent placement in March.  There’s a reason, and that brings us to the “good” portion of the title.  Shortly after I returned home from Arizona, we discovered I was pregnant!

We are extremely excited, but also were also initially filled with fear because I had an MRI and ERCP while I was pregnant but didn’t know it. Fortunately, we were reassured by all my doctors that the tests, procedures, and antibiotics are safe for pregnant women and the baby is growing as it should be. I am due in November around Thanksgiving.

I underwent another ERCP procedure in April to remove the first stent placed. When the doctor removed the stent, the common biliary duct narrowed again so he decided to place two stents side-by-side to open the duct further. I was given antibiotics for 10 days after the procedure to reduce the risk of infection and all went well.

Then comes the “bad” portion of the title. A few days after I finished the antibiotics, I came down with a fever and achiness.  I tried to sleep it off during the night and was still feeling pretty crummy in the morning, so my doctors recommended I head into the ER. The doctors think I was experiencing an infection and decided to give me antibiotics via IV and observe me and baby for a day. After spending one night in the hospital I was sent home with two more weeks of antibiotics and baby was doing well.

Once again, a few days after completing the antibiotics, I came down with a fever and some nausea.  After a quick call to the doctor’s office, back to the ER we went.  They put me on antibiotics via IV again and kept me a couple nights for observation.  I was sent home yesterday after feeling much better.

The plan is to stay on antibiotics until my next ERCP to remove the stents in a couple weeks. The doctors are hopeful the infections will stop once the stents are removed. If I have to have another stent placed, I’ll likely remain on antibiotics for a while to keep the fevers at bay.

For now, baby and I are doing well and we’ll take things one day at a time.

Thanks for joining me on the journey.

~Liver Life to The Fullest          

 

 

Basking in the Sun

I wanted to share a quick update post-ERCP. The procedure went well last week and I am currently writing this post as I vacation and bask in the warm Arizona sun.

The doctor placed one stent in the common biliary duct. The stent was twice the size in diameter compared to the last ERCP I had — meaning the narrowing in the duct was not as small. The procedure was successful and the only short-term side effects were a minor sore throat and sore neck/stomach muscles for a couple days. I have been mainly PSC symptom free for the last couple of weeks, so prayers that it continues that way.

I’m currently taking antibiotics for ten days after the procedure to prevent any infection like last time. Since things have been going well, I decided to continue with my plans for my son and I to visit family in Arizona this week.

The next step in my PSC journey is to have another ERCP in a few weeks to remove the stent and possibly replace it with another larger stent to widen the duct further. That would mean another ERCP at a later time to remove the stent for good.  

If I’ve learned one thing throughout all this, it is to take things one day at a time. For today, I’ll continue to enjoy life in the sun. 🙂

Thanks for joining me on the journey.

~Liver Life to the Fullest

MRI Results

As promised, I wanted to provide an update this week once I knew more about the next steps with my PSC. I’ll start with the good news: I have been feeling really good the past week with no more bouts of nausea and very little itching. Knock on wood…

THE BAD NEWS:
I had an MRI a few days ago and received the results from the doctor’s office yesterday. It showed some strictures (narrowing) in the liver bile ducts again and the doctors would like to conduct another ERCP to dilate and place a stent or two to open them up.

As you may remember from a previous post, the last time I had an ERCP procedure I ended up in the hospital with an infection. In order to prevent this from happening again, the plan is be placed on antibiotics before the surgery and take them for 10 days.

I was able to schedule the ERCP for next Tuesday and if all goes well, I’ll be home that evening with just a mild sore throat. The doctor will also need to remove (or replace) the stents with another ERCP in approximately four weeks.

As always, I’ll provide an update if things change (which they seem to do often with PSC).  🙂

Thanks for joining me on the journey.

~Liver Life to The Fullest                       

 

Here We Go Again

I was hoping I wouldn’t be posting again so soon, but here I am. When I last left you I had been consistently feeling good for a couple of months. Unfortunately, over the last month I’ve experienced PSC symptoms once again off and on.

February actually started off on a good note (or so I thought).  As I’ve mentioned before, I’ve been trying to stick to a gluten free diet to see if it helps alleviate some of the PSC symptoms. After being gluten free for over a month, I decided it was time to see if it made any changes to my routine liver bloodwork. The results came back and they were the best they’ve ever been since being diagnosed (my AST was even in the normal range!).

That same evening, things took a turn for the worse as I ended up experiencing nausea and vomiting throughout the night. I questioned if it was related to the PSC or a stomach bug since my numbers looked so good that same day. Since then, I’ve experienced nausea, upper right quadrant (URQ) pain in my stomach, and itching periodically.

I’ve been trying to identify if there are any triggers or themes with my symptoms and I have a few observations that typically ring true for me.   

OBSERVATIONS:  

  • If I eat a larger meal I feel as though my body is not able to process the food fast enough and that is often when I become nauseous. I find it works best to eat smaller meals and snack throughout the day.
  • My symptoms mainly occur during the evenings but have not occurred for two consecutive nights. This is good and bad. Good in that I’m able to get through the work day without feeling uncomfortable, but bad in that it’s during the short amount of time I get to spend with my son during the work week. I generally don’t eat dinner during these bouts of nausea and feel better the following day.
  • My body does not seem to be able to process fattier foods like it used to, so I’ve been trying to stay away from red meat and greasy foods when possible.

I have been in touch with my doctor periodically over the past month and we ran my bloodwork again two weeks ago. The results were elevated, but not too high to the point of concern since my symptoms had been intermittent. We were taking a wait and see approach to see if things improved or worsened.

That brings us to earlier this week. I was nauseous and experienced extreme itching throughout the entire day on Thursday so I decided to run my bloodwork. The results came back extremely high (similar to when I had to have a stent put in my bile duct in October 2016). The plan is to have an MRI next week to see if there is another blockage and determine if I need another ERCP procedure to put a stent in.

The good news is I’m feeling much better the last two days, so fingers crossed it stays that way for a while. I’ll keep you posted once I know more from the MRI next week.

As always, thanks for joining me on the journey.

~Liver Life to The Fullest

Today

For those of you binge reading my “backstory” posts, we’ve finally reached where I’m at in my journey today.

Since my hospitalization in October 2016, I’ve been feeling pretty good, but have had a few bouts of symptoms (itching/nausea/fatigue) off and on. There are days when I find myself sitting in meetings at work pushing through the nausea or days that I can’t keep my eyes open due to the insomnia. Here’s a funny list of things PSCers can relate to that you might enjoy and give you a glimpse of my daily life.

With the new mantra to “liver life to the fullest,” I’ve been trying to stay active and discover ways to better manage my symptoms. I continue to play basketball in a weekly league which seems to give me even more energy. I’ve been travelling and continue to make plans for the future to explore new places. In addition, I’ve been testing out a gluten free diet to see if helps alleviate any of my symptoms. It’s still too early to tell, but I have been feeling really good the last month of the new diet so perhaps more to come on that.

I recently met with my Gastro/Heptologist and the biggest thing I took away was that I’m in the very early stages of PSC still. My liver function is still really good and only the ducts are affected at this time. And for those nosy family members reading this, the doctor was also encouraging and hopeful that I can have more kids someday.  😉

Today I feel like PSC is manageable and I can continue to live a full life. Sure, there may be days where I feel crummy and don’t want to get out of bed. That’s just a reminder that we don’t always know what someone is going through, so be nice to one another and provide some encouragement.

Thanks for joining me on this journey.

~Liver Life to the Fullest

And So It Begins…

Life didn’t change after my diagnosis with Primary Sclerosing Cholangitis (PSC) in February 2016 because I wasn’t having any symptoms and there isn’t anything that can be done to prevent it from progressing. It was a matter of waiting to see when and if the PSC progressed. As you can likely guess by the title of this post, it did.

In September 2016, I started experiencing moderate itching on my legs, arms, back, and stomach. I was done nursing my son, so I decided to give a medication (called Ursodiol) a try because it sometimes helps normalize liver bloodwork and relieve itching in PSC patients. Unfortunately, it did not seem to help and my symptoms became worse.

At times the itching became so intense that I ended up with bruising on my legs from scratching so much. To make matters worse, just as my son was FINALLY sleeping through the entire night, I started experiencing insomnia where I’d be wide awake from 2am-5am and nothing could help me get back to sleep. As you can imagine, this led to extreme fatigue throughout the day.

I knew these were all usual symptoms of PSC and that they might come and go. I had an appointment with my Gastro/Heptologist (PSC doctor) in a few weeks, so I thought I’d just inform her of the developments then. That’s when the nausea set in and I was unable to eat much without feeling miserable.  I decided to check my liver bloodwork and see if I could get in to see the doctor earlier. Sure enough, my liver counts were the highest they’d ever been and my bilirubin levels were elevated as well (which they had never been before).

I stopped taking the Urso and was sent for an MRI to check for any blockages in my liver biliary ducts. The Radiologists discovered a portion of my common bile duct was dilated and then abruptly narrowed. For those of you wondering what the common bile duct is—it’s the portion that moves bile from the liver to the small intestine. A blockage can lead to liver products leaking into the bloodstream, which is why I was experiencing the itchiness.

Since I was feeling pretty crummy at this point, we decided to conduct another endoscopic retrograde cholangiopancreatography (or ERCP) to place a stent in the bile duct to get things flowing properly again. I had the procedure in October 2016 and it went well even though the doctor had to place the smallest stent possible since the duct was so narrow.  I was provided with almost immediate relief and I felt like a new person being able to sleep through the night for the first time in over a year.  The plan was to return in a few weeks for another ERCP to remove the stent to place a larger one and repeat one or two more times.

Since everything went smoothly and I was feeling good, we headed to my in-laws to attend a wedding that weekend. The first night there, I woke up in the middle of the night with a fever and vomiting. After a quick call to the nurse help line we decided to head into the local emergency room.

They were able to give me medication to relieve the nausea and I began feeling much better. After numerous scans, bloodwork, and six hours in the ER, they determined it was best that I be admitted to the closest major hospital (which happened to be Rochester Mayo).  The hospital was a 45 minute drive away and they wanted to continue to monitor me, so I was able to experience my first ambulance ride (which seemed a bit excessive since I was feeling much better at this point).

I spent the next two days in the hospital running more bloodwork and receiving IV antibiotics as the doctors tried to identify the type of infection that was causing my fever. It ended up being an infection from bacteria introduced during the ERCP likely not being able to flow out which means I’m susceptible to it occurring again the next time I need another ERCP. I was given oral antibiotics for my infection, so the doctors were able to discharge me rather quickly.

I ended up not needing additional ERCPs because the stent fell out on its own (meaning the duct opened up even wider) and I had been feeling good. Praise God!

Actually experiencing the symptoms of PSC and being hospitalized brought reality as to just how crazy this PSC ride will likely to be. It prompted me to do more research and read other PSCers stories. That’s when I realized there are aren’t many people sharing what the “early stages” of PSC is like. My hope is that I can bring some hope and comfort to others in a similar situations and let you know you’re not alone. We can continue to live life fully and bring good into this world no matter what our circumstances are.

Thanks for joining me on this journey.

~Liver Life to the Fullest

Diagnosis

Being diagnosed with an illness or chronic condition can be scary and intimidating, but my diagnosis of Primary Sclerosing Cholangitis (PSC) brought a sense of relief. Well, if I’m being honest, there was also a little fear.  It brought relief because I had a long road of tests, procedures, and doctor visits to finally get answers. So I’ll start at the beginning… (Disclaimer: It’s going to get personal real fast.  🙂 )

In May of 2014 I had been experiencing some abnormal stools and decided to see my primary care doctor to get things checked out. She ordered some bloodwork to see if we could figure out what was going on. The bloodwork showed elevated liver enzymes, so I had an ultrasound to check out my liver, gallbladder, pancreas, and kidneys. Everything appeared normal and the doctors were still unsure of what was causing the elevated numbers, so they decided to have me go in for an MRI. Again, everything appeared normal, so I was referred to a Gastroenterologist for next steps.  

The Gastro decided a colonoscopy was the next course of action, so I was able to experience the fun procedure a little earlier than most (at age 28). The preparation of drinking a gallon of laxatives was definitely the worst part. To top it all off, I was the youngest patient in the waiting room by at least 20 years.

After the procedure, the doctor came into my room to review his findings. He stated that he removed a polyp (which could have turned cancerous if I didn’t have a colonoscopy until the usual recommended age – whew!) and that I have something called Ulcerative Proctitis (a less severe form of Ulcerative Colitis which causes inflammation in the last few inches of the large intestine). He quickly stated that he’d write me a prescription for the Proctitis and that I need to come in for regular colonoscopies every few years. Unfortunately, the doctor appeared to be in a hurry and did not really allow for us to ask many questions before he was out the door. Before he left, he did indicate that the elevated liver enzymes were not caused by the Proctitis, so we were back to square one again.

The good news is the Proctitis medication worked immediately and now I only use it as needed for a few days when a flare up appears.   

I consulted with my Gastro and he thought it would be best to conduct an endoscopic retrograde cholangiopancreatography (or ERCP) next. Most of you are probably wondering what the heck an ERCP is. It’s a procedure where the doctor examines the pancreatic and bile ducts by placing a tube down your throat. If they find a blockage during the procedure they will often place a stent or make an incision to open things up. Once again, the procedure did not reveal a clear diagnosis for me because everything appeared pretty normal during the exam.

I did have my first introduction to PSC at this point when my Gastro casually mentioned that PSC might be a possibility. He indicated some of my liver ducts were a little more pink than usual but it was a small chance since it’s a rare condition and there was not a clear sign during the ERCP. He did not seem worried and felt that there were no more tests we should run at this time. My husband and I wanted to start a family soon and the Gastro fully supported continuing to live my life as normal since everything else appeared fine. At this point we did a little research on PSC but put it at the back of our minds since I had been feeling good and the doctor did not seem concerned.

In December of 2014, we were blessed to find out I was pregnant and expecting a baby in August.  I continued to run my liver bloodwork to keep an eye on things. During the course of my pregnancy, all of my liver enzymes normalized.  I ended up consulting with a new Gastro during my pregnancy and she indicated that they often see this in pregnant women with autoimmune diseases and that she’d like to figure out what’s going on after I had the baby.

The rest of the pregnancy continued to go smoothly and in August 2015 I gave birth to an amazing little boy. As suspected, my liver blood work jumped back up and I was sent in for another MRI and biopsy in November 2015. Once again, I had my doctor stumped since everything came back normal. We decided the next step was to go see a specialist at Rochester Mayo to get answers.

After more blood work and scans, we headed to Mayo in February 2016. During my initial consultation it was suspected that I had PSC. They wanted to run some more blood tests (p-ANCA and c-ANCA) to confirm and have me consult with an additional doctor the following day. The test results came back positive for PSC so I was officially diagnosed.

Not much changed after the diagnosis for me. There is a medication (Ursodiol) that sometimes helps lower liver enzymes of PSC patients, but since I was still nursing my son we decided to wait on trying it.

Even though there is no cure for PSC at this time, all the doctors I’ve worked with have been extremely optimistic that I can live a full life. I decided then that I will live my life to the fullest no matter what gets thrown my way.

Thanks for joining me on this journey.

~Liver Life to the Fullest