Unfortunately, I ended up going to the ER at Sibley Memorial. But it ended up being a good experience overall, they were able to conduct my first ever ERCP. That being said a plastic stent was placed near the sphincter on the bottom right side of one of my ducts. I returned home after a few days and went back to work. My bili which was around a 9-10 (normal 2-2.5) would not go down. The Docs planned to conduct an IR procedure the week of Thanksgiving but I had plans to visit family. That was a bad decision because a few days later what I though was food poisoning after travel was really a full on out cholangitis attack which led to an infection. I rushed to the ER after Thanksgiving dinner and ended up in the ICU for a couple days went through another ERCP. Stent was taken out because of bacteria and potential infection cause. Made it through one day then woke up in the middle of the night in the hospital vomiting blood for approximately 1.5 hrs. Back to ICU, endoscopy, banded 7 bleeding varices. A total of 9 days in the hospital along with some hemoglobin issues during last few days but eventually made it out of hospital. My body is swollen bottom half beyond belief including abdominal distension (feel like I am pregnant) which has been brutal can barely walk (supposed to be getting better). Have a follow up in the am, another endoscopy! Yay. Being positive but almost didn’t make it through on two occasions in the 9 days. Was a healthy and athletic male prior to all of this. Diagnosed in 2016 and first major life impacts. Have two small children which makes it even more difficult. On top of all of it I got frozen shoulder during the 2nd endoscopy because of the position I was in while knocked out. Gained 25 in fluid weight while basically eating nothing for two weeks. Never knew all this could happen. Trying to stay positive. Any info, thoughts, comments would be helpful. I tried to write this as quick as possible so I prob left a lot of the details out.
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Wow, that is a handful to experience. I have always thought that while psc usually progresses slowly. Until it doesn’t.
In dealing with the stuff that psc brings, it helped me to focus on the long term while getting through the daily crap. That is not always easy.
In being positive, I am glad your burst varices occurred in the hospital. If it’s going to happen, you could not have picked a better place.
I learned a lesson that psc will test your patience, stamina, health and your sense of humor, and having a positive fiesta mindset will be of immense help.
Hope it helps.
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