Incisional hernia?

[mom2three]

Did any of you develop an incisional hernia? Did you have it repaired right away? Or did not have it repaired at all?

I donated 16 months ago and just recnetly noticed a bulge by my large incision (c-section style). Internist and general surgeon both said it was an incisional hernia. Surgeon said it should be repaired even though it's asymptomatic because it won't go away and will likely get bigger.  Bowel is not herniating, only fat, so no worries of strangulating bowel.

When I called my transplant coordinator to let them know, she said I could get it done there under the recipient's insurance (thereby saving me ~$2000 in co-pays). So I went to a general surgeon there (2 hours away) who said I do NOT have an incisional hernia. I happened to have an annual GYN appointment a week later and asked him and he said I defintely DO have an incisional hernia.  I can go back to the Transplant Center and see another general surgeon, but all this hassle makes me wonder if I should just ignore the little bulge (it's about the size of a plum).

[Clark]

What did the transplant coordinator say about the conflicting diagnoses?  Are the practitioners arguing with each other, or are you forced to be your own advocate?  Has the transplant coordinator connected you with their Independent Donor Advocate?  You'll be exploring what some of the professionals who've been pushing back against these living donor advocacy policies have feared, their unacknowledged complications coming home and being laid at their door.  Do let us know what you learn along the way.  Also, if you're contemplating not having it addressed surgically despite your internist and surgical evaluation, do consult with those diagnosticians again about the consequences of inaction.  Take care.

[mom2three]

My transplant coordinator said her first advice is to go back to my local general surgeon, explain what the transplant center surgeon found, take the CT disk/report (that the transplant center surgeon saw but not the local surgeon) and see what he says. I have not done that yet since my GYN confirmed the diagnosis based only on physical exam like the first surgeon. Donor coordinator also said she'd be happy to get me an appointment with another general surgeon at transplant center. Since the first surgeon I saw there was a neighbor and friend of my urologist (which makes me wonder if THAT's why he found no hernia) I think I am going to find a surgeon on my own (based on a recommendation from an OR nurse I know there).  I would hate to think a surgeon would ignore an actual hernia just so that the urologist doesn't appear to have a complication posted against him... but I suppose that's possible.

I have never heard of a Living Donor Advocate. Do all transplant centers have one?  I hate to ask my coordinator to speak to one because a) I really like the donor coordinator and b) doing so might make them think I am unhappy with the Donor Coordinator, which I am not.  I also LOVE my nephrologist at the transplant center and would ask/trust his advice but since I'm two hours away it seems silly to go all the way up there to talk to him.  So I'm going to see another general surgeon up there I guess, for the sheer principle of not wanting that suspicious opinion be the last word on the matter.

[Clark]

Glad to hear that you have a good relationship with the coordinator.  All transplant centers that have living donor programs must now have Independent Donor Advocates (IDAs).  The role of the IDA is defined by each center, within a framework from OPTN policy.  In my view, you're entitled to counsel and advocacy from an IDA even if your surgery predated the requirement for IDAs.  Transplant center administration might disagree, but I hope not.  Why not discuss it with the coordinator?  Let the IDA try to sort out the conflicting diagnoses and find a path for resolution for you.  I hope all the players can share your CT result electronically so you don't have to hand carry it!  Best wishes!

[kali]

I also had a small incisional hernia at one of the lap. sites on my abdomen.  It was a struggle to get everyone on the same page.  I actually had to have a little hissy fit w/Donor Coordinator to have it resolved.  The surgeon said it was not due to his surgery but another doctor (the one that did the surgery) did say that it was an incisional hernia. It was covered under my husband's insurance (recipient).  Mine was so small they could repair it with staples/stitches (forget which) laproscopically.  This happened one year ago and I never heard from a Donor Advocate.  I don't know if they even have one yet.

I had it repaired as soon as I could just so I wouldn't wonder about it getting bigger.  I can't tell it's even there now.  Good luck! 

[Snoopy]

   What are the symptoms of an incisional hernia? 
   For a week or two, I thought I had one, because when I pressed down on my (3 inch, vertical) incision, it felt very hard below the skin, as though I was pressing down on a piece of cord implanted in my abdomen.  I wasn't sure whether that counted as a bulge.
  Since I've never had a hernia, I wasn't sure what to look for.  What should I be checking for?
        Thanks, Snoopy

[sunny50]

I donated my liver 2 years ago.  This past year I developed an incisional hernia.  It showed up as a little bubble.  I went to a local surgeon and he said it was my choice to fix it.  I decided to do so because I didn't want it to get bigger.  He reopened my entire incision and said that I had smaller hernias along the incision.  He also put mesh along the incision.  That was 7 months ago and my incision is still numb in places and I can feel where they sewed down the mesh.  I'm glad that I had the hernia repaired knowing what I know now that there were others developing under the incision.