Just wanted to share a quick update to let everyone know we ended up moving forward with my Appendectomy today.
We were all a little more nervous than normal given the scare we had last week, but the doctors at Mayo and my local surgeon were confident in proceeding. My medical team was great today and they were very understanding of my notifying every single caregiver I saw about paying close attention to avoid any potential allergies.
I’m happy to report everything went smoothly and we were home by lunchtime! I’ll just be resting up over the weekend and have some lifting restrictions for a few weeks.
We really appreciate all the extra prayers that were sent up today. Thanks for joining me on the journey.
I can’t believe it’s been almost five years since my last post, but it’s largely because things have been status quo with my health. The past four years I’ve mainly had routine MRIs, bloodwork, and colonoscopies to ensure things continue to remain stable. I had one or two increased bouts of itching and insomnia, which typically meant I had a blockage in my bile ducts, resulting in an ERCP procedure to open my bile ducts up again.
This past October I started experiencing consistent itching and insomnia to the point where I knew things weren’t clearing up on their own. Sure enough, my MRI showed a blockage, but I couldn’t get scheduled for an ERCP at Mayo until January. While waiting for the procedure, my skin and eyes started to yellow, which was my first bout of jaundice with PSC.
During my ERCP procedure in January, the doctors ended up placing a stent in my biliary duct since the narrowing was so small and he wanted to ensure it stayed open. Fortunately, I had some immediate relief from the procedure, but knew I needed to have another ERCP in 6-8 weeks to remove/replace the stent.
In March, I had my second ERCP of the year to determine if the stent needed to be replaced or if it could come out. Unfortunately, the doctor still wasn’t confident the duct would stay open on its own, so he ended up placing another stent during the procedure. The day I was at Mayo for my procedure, my hepatologist called because a recent MRI partially showed that my appendix was enlarged. Since I was already in Rochester, I was able to get in for a CT scan of my appendix to confirm. Turns out, it’s filled with mucus, and I’ll need to have it removed, but it’s not currently causing any issues.
The Unexpected
This brings us to the unexpected portion. I had my third ERCP last Wednesday to remove/replace the stent. Everything went as normal checking in and going into the operating room, but the next thing I remembered was waking up in the ICU at 5:30am on Thursday morning. Apparently, the procedure did not go as planned.
Here is what happened according to the doctors and my family:
The doctors were able to remove the stent, balloon open the other ducts and inject contrast to see that my bile ducts were flowing nicely. They did not plan to place another stent so this would be my final ERCP of this round. As they prepared to collect cell brushings for routine testing, my blood pressure dropped and my entire body went into shock. They were pretty sure I was having an allergic reaction to something and were able to get me to the ICU, on meds, and on a breathing tube to stabilize until the reaction subsided. Apparently, I put up a good fight with the doctors and nurses when they were trying to get additional IV lines in me, so I have a few extra bruises near my veins to show for it, but I don’t remember a thing.
I started showing signs of consciousness and irritation with the breathing tubes around 2am on Thursday, so the doctors took it out around 4:30am and I fully woke up at 5:30am. After I was deemed stable, I was able to get unhooked from some of the machines and even started walking around the ICU floor that day. I was downgraded to normal “floor status” by the afternoon so we were just waiting for a normal hospital room to open up, but one never did.
The doctors still weren’t 100% certain I had an allergic reaction, so shortly after I crashed, they did a blood test to see if that’s what caused it. It’s not a super reliable test, meaning it can be negative but still could have been an allergic reaction, but my results came back positive so they’re confident it was an allergy.
I spent another night in my ICU room so they could determine what antibiotics were safe for me until we figured out what exactly triggered the anaphylactic shock. We were able to head home on Friday afternoon and spend the weekend resting up.
What’s Next
That brings us to today. I’m still scheduled to get my appendix out on Friday and my doctors at Mayo are confident that it’ll be fine if we avoid any of the medicines and anesthesia given during my ERCP, but I’m waiting for my appendectomy surgeon to determine his comfort level and the urgency of getting it out.
I’ll also be going back to Mayo sometime in June, once my body normalizes a bit, to conduct an allergy test on everything I was given in my procedure so we can determine what to avoid in the future.
Needless to say, it’s been a whirlwind of a week with so many family members and friends stepping in to help with the kiddos, support us, and pray for us. We are so fortunate to have the support system that we do and this experience is a good reminder to live life to the fullest because you never know what tomorrow brings.
Par for the course – it’s been a while since I’ve provided an update. 😊
On the PSC front for me, things have been pretty stable since I last posted. Every once in a while, I’ll have a night of itching or nausea but overall not too bad and I’ve been able to live a normal life.
I did have my annual check-up with my Hepatologist down at Mayo in Rochester, MN in July. My MRI and bloodwork looked pretty good so we’ll continue to monitor symptoms as they come and check back in a year if nothing changes.
For anyone curious, my bloodwork (Liver Function Tests (LFTs)) are generally always elevated above the normal range even when I’m feeling well. When I’m experiencing narrowing in my bile ducts they shoot up even higher and my bilirubin level is typically outside the normal range as well. If blockages occur, our plan of action will likely be to have an ERCP (surgery) to go in and balloon dilate the bile ducts open to provide relief. The doctors are encouraged that it’s been 18 months since I’ve had to have an ERCP so hopefully it’ll be a while before I need another.
As I mentioned in my last post, I attended the annual PSC Conference in June and it was a great experience! If you’re a PSCer reading my story, I highly recommend trying to attend a future conference. It was really encouraging to hear from other patients and doctors who understand what we go through with this disease and even getting a little knowledge about what the transplant process is like was helpful. My favorite part of the conference was breaking out into peer groups and spending time talking with other women about our questions or experiences with where we’re at in the journey.
I was also very encouraged by the research that’s being done and doctors are hopeful they’ll figure this disease out. It’s just a matter of when.
Unfortunately, my brother was also diagnosed with PSC this spring when he experienced an itching episode that wouldn’t go away. It’s been a lot for our family to process both of us in this fight, but our parents want to do what they can to help so they have graciously put together a campaign to help raise awareness for PSC and funds for research. If you want to learn more or donate, you can check out their page.
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…
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 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. 🤞
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.
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.
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.
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.
