Why don’t doctors warn patients about hernias?
Since the hernia post is making it’s rounds again, I thought I’d share my most recent hernia adventure. I’m 2 years post op, and had an insanely difficult recovery (2 back to back transplants, 3 major surgeries in 4 days, almost a month on a vent…) I just got back last night from my transplant hospital 5 hours from where I live and while it’s good having a plan I’m also devastated to say the least. I never knew anything like this could happen, and it has me questioning why doctors aren’t educating patients on things like this.
in April I started having severe episodes of pain. I had a lump around my incision, which I assumed was a hernia and proceeded accordingly. Saw my physiotherapist, called my coordinator and was referred to a surgical clinic. The wait list to get in was long, and I was told if I experienced x,y,z to go to my local ER.
in June I ended up in the ER, and they ordered a scan. I live in a rural area, I’m the only transplant patient my hospital ever really sees, and also the closest “big” hospital to me has a reputation for being terrible.
my best guess at what happened next was whoever the on call radiologist was at that hospital was took one look at my scan and said “that’s not a hernia” and cancelled my hernia clinic visit. My coordinator followed up, and I hysterically said on the phone if they’re not sending me to a hernia specialist they need to figure out what this is and send me somewhere because I can’t live like this. So they sent me back to my original transplant surgeon. Apparently they have a you broke it you fix it policy 😂
I spent this past week there, confusing surgeons everywhere. They all scratched their heads trying to figure out my scans. Because there is no way something that massive could be a hernia. It’s too big. It’s not just a gap in my abdominal wall where my intestines are coming out, my abdominal wall is absolutely destroyed. There’s also a ton of scar tissue on the scan from all of my major surgeries, which my local hospital saw, had never seen before, and sounded the alarm on a tumour.
I do not have cancer, but I also don’t have an abdominal wall. So my transplant team put in a referral to the CHARGE unit (complex hernia and abdominal reconstruction) and from what they could tell me we’re looking at a pretty major abdominal reconstruction from synthetic materials.
I have so many feelings, I’m devastated and frustrated. I feel like I was just starting to get healthy and now I’m back again. And I’m curious why I wasn’t even warned about a minor hernia as a complication. Why aren’t hernias post transplant talked about? Has anyone else ever experienced anything like this?