General
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?
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I was told by my excellent Transplant Team that it was not a hernia, but weakened abdominal wall that was being stretched by the intestines. Like a balloon with a soft spot. But since it was not in their wheelhouse, they referred me to others. The hernia specialist looked at my CAT scan and said it was NOT a hernia. The two plastic surgeons I consulted (all off these at the same hospital in NH) both said it WAS an incisonal hernia and even sowed me where on the CAT scan it could be seen. 7mm in size. Due to my recent kidney transplant, they felt that only a minimally invasive surgery would be advisable - thus the robotic surgery that is scheduled. Lesson: Transplant teams know transplant surgery - not hernia stuff.
Transplant Patient
I definitely get that transplant surgeons don't know hernia stuff. Obviously it would be irresponsible for them to give hernia related medical advise when its not their area. but i wasn't even told it was a possibility or to look out for it? That seems odd to me. no one mentioned anything
Transplant Patient
@AliEm14 - 😲 wow, craziness!!
So sorry to hear about your recent challenges. Best of luck to you - I hope they're able to collectively have the best solutions for you. 🍀🤗
So my transplant team did warn about the risk of hernia post transplant. That was part of the patient education process before I was discharged where they go over dietary needs, med schedules and activity limits.
That said, I had my intestine pop through my abdominal wall the first year after transplant. My transplant team identified it immediately and I had emergency surgery that day to fix it.
I still have another herniated area at the top of the scar line on my incision that I’m opting not to have surgery for. It doesn’t hurt, and I asked for a referral to PT to strengthen my core.
Transplant Patient
@michelle thats impressive they got you in so fast!
they honestly might have mentioned it in passing and I don’t remember. I was on so many drugs!
I’ve been in physical therapy since my transplant 2 years ago. I did have one of the most traumatic surgeries/transplant experiences my surgeon had ever seen in his career, which I feel like has a lot to do with me being where I am now. I’ve never done anything the easy way
I have an umbilical hernia and no one will operate while I’m pending transplant. It is VERY uncomfortable and bigger than a golf ball. It’s disgusting (I’m sorry). I don’t know if the two are related. I would love a new liver and fix my belly, but I’m not so lucky. I’m too much for surgeons to want to entertain.
I am so sorry to hear you all have had such a difficult time.
I had hernias after less than a year liver transplant. My transplant surgeon immediately referred me to a plastic surgeon who had to do adnominal reconstruction 1year after liver transplant.
It was a painful surgery, but i am 9 months out, and doing good.
Do you have any underlying medical problems is to why they do not want to proceed w/it.
I hope you get your transplant soon and wish nothing but the best.
I now have an appointment on 10/10 with a plastic surgeon to do robotic minimally invasive surgery to block off with mesh an incisional hernia. Will likely not reduct my "pouch" that much, but every bit helps. Because my kidney transplant was only 6-7 months ago, they do not want to do more major surgery in the same area.
The AWR by my plastic surgeon helped my stomach pouch so much.
Good Luck!
I have no other conditions other than the biggie…cirrhosis. I am waiting on my evaluation (7-10 days at the Mayo) and will ask. I am just praying this can be done as well because it is that uncomfortable. I was put on a water pill and lost a ton of belly swelling. But my hernia and the area around it are obvious.
I can't believe I'm just seeing this Ali. I am SOOOO sorry that you've been going through this. I was warned a TON about hernia after my transplant. They were really freaking out about me because
1-I'm super short (5'1") and have a very short torso
2-I've carried 4 babies
3-I had really weak abs (and always have)
They wouldn't let me carry more than 5lbs for 3 months after my surgery, which was a real challenge since my youngest was a 1-year-old. That being said, I've been able to avoid a hernia, but I'm so sad that happened to you! Please keep us updated on how we can support you virtually.