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.
As always, thanks for joining me on this journey.
~ Liver Life to the Fullest
So sorry this has happened. I have had many ERCPs and MRIs over years, but last year developed an allergy to the contrasts that fortunately didn’t end up as bad as your circumstances. Maybe you have developed a sensitivity to these contrasts. I now have to take a prednisone prep before these tests and that has seemed to work. Good luck!