I just need to rant about how absurdly unlucky my Pancreatitis journey has been, because I genuinely feel alone in this situation.
From January-December of 2019 I kept having recurring chest pain attacks, (Hindsight these were gallstone attacks that I assumed was heartburn), that would last from 1-2 hours every week or two, and only was relieved when bringing my chest to my knees. I was 17 years old at the time and a pretty active athlete so I didn’t really think anything of it. I was overweight at the time, 6’4 270 pounds, but I was extremely physcially active, so something being medically wrong to the extent that is was, never even remotely crossed my mind.
Then it got really, really bad, December 5th 2019 I had what I thought was another heart burn attack, but the pain kept getting worse through the day until I physically couldn’t walk. I had a Dr’s appointment in the evening with my primary physician so I was trying to tough it out until then but something felt very, very, very wrong. I eventually threw in the towel and asked my mom to bring me to the emergency room. Now, apparently I had not looked at myself in a mirror that day so I did not know how bad I looked. My skin was completely gray and I was becoming more and more lethargic. I looked so bad I was immediately rushed into an emergency room almost as soon as I stepped through the door, which in the US is impressive if you’ve ever had to wait in an ED. I then had my gallbladder removed.
Now some of you may remember a little event happening around December of 2019 in Wuhan, China, but that’ll come into this story 18 months from my first admission, we’ll get there. Anyway the first 3 months after my diagnosis was pretty run of the mill for this condition. Eventually I was out of the hospital, and back to somewhat normal for spring and summer, life was good, until it wasn’t again. October 3rd 2020, I had another pancreatitis flair up but it was very very bad this time. Giant pseudocysts had formed around my pancreas and the digestive enzymes had ripped my pancreas completely in half, and it was necrotizing. Most of the head half of my recently split pancreas was necrotic and infected. Eventually I went septic and my lungs started to go into organ failure, my pulse ox was in the 85-90% area on oxygen. I barely remember this part of my hospitalizations, what I do remember is terrifying in hindsight. I remember being forced to exercise my lungs and go on walks when I could barely move to my chair from the hospital bed. I only remember being sooooooo annoyed at the nurses who would come force me to walk and to do my breathing exercises, and I feel bad now, because that is probably what saved my life. I never understood the trope in movies where a character is close to death and they just want to give up and embrace it until then. It didn’t occur to me at the time I had a 30%-50% chance of dying at that time until my Dr just casually said to my mother, in ear shot of me, “He’s only still alive because of his age, if he were 5 years older, he would’ve never even survived this far.”
Which segues us into the next scary knowledge drop. 17-18 year olds just don’t get this condition, and if they do, it rarely ever gets as bad as that. I felt like I was in an episode of House. They wanted to do an open surgery on me that would keep me in a coma for weeks to clean out my abdomen then they abandoned that. They were genuinely just throwing ideas at the wall to see what stuck, I felt like a little science experiment. I was at Maine Medical Center, a teaching hospital, so I had a steady audience of students just infatuated I even survived this long. After weeks of ideas not working they finally decided to see if draining the cysts would help, so they put in a stint in my stomach to drain it and it worked for the time being and all was happy, I beat the sepsis and went home.
Then in late 2022-mid 2023 I got very sick again, this time during the height of the pandemic. At this point I needed a feeding tube because I was NPO for weeks at the time with no nutrition because of covid delays, so they decided me getting scurvy in the hospital would look bad. But because of covid, I had to wait in Medsurge for this tube to be delivered, not weeks, but 2 months. My teeth started decaying from malnutrition, my hair was falling out, it sucked. Then when it got there, it was the wrong tube, so then I was sent on a field trip to another hospital to get it put in, then sent back. And for those 2 months my pancreas was destroying my abdominal cavity to the point where they eventually decided to perform a Pancreatectomy and Splenectomy, as well as repair parts of my stomach and colon damaged by the Pancreatitis.
Thankfully I haven’t been rehospitalized for Pancreatitis since that surgery, but now Diabetes and pancreatic enzyme medication are my life sentence. I just needed to rant about how unlucky everything went, and also how lucky I got, you know, for not dying. And if anyone out there had similar experiences that’d be cool as well, I’ve never met anyone who got it as young as I did and it’d be cool to see if there is anyone here who had a similar journey.