Hernia help?!

[Angiepkd]

As if I needed something else, I am pretty sure I have a hernia.  I understand this is common with PKD patients.  Anyone have any experience with hernia repair surgery?  Which of my many doctors should I see about this?  Any help greatly appreciated! Thanks!

[tiredandthirsty]

Hi Angie,

I have two, an umbilical and an inguinal.  they cropped up when i was holding too much fluid in my abdomen and was fighting to stave off diaylysis as long as i could. 

however, once they popped up a year ago, they have gradually gotten bigger and bigger to a point where the umbilical sticks my shirt out and i am super self conscious about it.  so i wear a XXL hoodie to hide it even when it is 80 degrees outside. 

i have liver issues in addition to kidney issues but i spoke to the transplant surgeon about it.  and he said that doing a hernia repair right now is not the sharpest idea because i am still making ascites.  biggest chance is recurrence because the fluid in my stomach will put continuous outward pressure and hence recurrence is a HUGE possiblity.  other possibilities are making the liver issues worse, putting anyone under anesthesia with organ issues is always a risk as it may worsen the condition.   

so basically he said, suck it up for now and gave me an abdominal brace to wear underneath my shirt to keep the umbilical hernia pushed in.  he said they will repair it 2-3 months after the transplant once all the extra fluid clears out and i am not retaining any more fluid in my abdomen. 

this is my entire hernia story for you.  i know you are looking for hernia repair experience but i thought i'd share my experience as well since i have been complaining about my hernias to the doctors every time i go see them.   

[Sydnee]

Angie you are on Home hemo right?

Since I haven't started dialysis I can't say how it will affect that but I have had two hernias and their repair. Both of mine were incisional the first was caused by a c-section. It was about the size of a large grapefruit. The surgeon said that he might have to use mesh to repair it. Thank God he didn't have to. After that surgery I went on to have 3 more kids one of which was 10 lbs 10 ozs. That hernia didn't tear again. The second was after my tubal (I couldn't believe it, it was a cut the size of an inch) the hernia was small.
Talk to what ever doc you see next (that's what I did at least) The OB then referred me to a surgeon.

The surgery was easy, I had a spinal with both.  But again this was years ago, the first was 17 years ago and the second was almost 7 years ago.   

[MaryD]

I'm going in for a hernia repair on Monday. 

Mine developed in January from the odd time when I was running around with 3.5+ litres of PD fluid inside.  I kept mentioning that it was somewhat uncomfortable but no-one suggested that maybe a smaller fill would be a good idea.  I noticed a lump next to my navel in the shower one day and my first thought was my lymphoma was back.  I was massaging it gently and doing a bit of deep breathing when it popped back in and I knew it was a hernia.  You will never know anyone who was so happy to have developed a hernia. 

Mine is relatively small and may only need a stitch to repair it.  I'll let you know how it goes.

[Angiepkd]

Thanks everyone!  I go to see the vascular surgeon next week, so I guess I will start with him lol.  I think mine is an umbilical hernia, probably caused by my giant kidneys.  It could also be incisional from my radical hysterectomy.  It has gotten worse lately, and I can push it in, so pretty sure it is a hernia.  I am scared to have anyone poking around in my abdominal area, since there is already a lot going on in there, and everything is crowded.  I do home hemo, so not too worried about it affecting my dialysis.  So glad it was a hernia MaryD!  I know how scary it is to think it is something worse.  I am always worried about my cancer coming back.  Thanks again for the responses!

[Sydnee]

You shouldn't worry about them poking around even with the big kidneys. Both my hernia repairs were done without the docs bothering my kidneys. Mine kidney are also very large (the biggest the doc had seen when I was diagnosed) and they have grown since then.
Hernia is definitely better than cancer.

[geoffcamp]

I went in to fix a single hernia and while fixing that one they found one at the site of my old PD cath too. I'm not sure about fixing while your still on PD. Since it was quite a few years ago it seems to be coming back again, a lump right above my belly button. I heard that some of the mesh used didn't work for long term repair. I had mine done by my transplant doctor team because they lumped in a nephrectomy also. Took out the rejected transplant to try and lower antibidies. It didn't work. Good luck. G.

[MaryD]

Well, I'm home again after my hernia repair.

The hernia was apparently caused by a stitch/stitches from previous surgery giving way.  While the were doing the repair they found that my umbilicus was not in a secure state, either.  So now I have no navel.  Does this mean that I am now immortal?       

The hernia was repaired with a stitch and a spectacular line of staples where my navel once was.  It all felt a little tender in the evening of the surgery, but I didn't need any pain killers then. But by the next afternoon I had a windy stomach ache and then I did have paracetamol that night.  I was in hospital from Monday and came home today (Thursday).  I had a dinky little vacuum drain bag attached and had to wait for it to be removed.  The whole thing was better than I expected - and better than the medical staff expected too, as I was prescribed morphine if required.

Unfortunately they perforated the peritoneum so once more I'm on a diet of white rice, white rice, white rice and more white rice.  I'll tart that all up with little bits of harmless stuff.  Once again I'm hoping to get through the fortnight without having to have emergency haemo.  My eGFR is about 9, so my main concern is potassium.  Still managing to pee at least a litre a day.  Fingers all crossed, please.

[Angiepkd]

Glad you are doing well, Mary!  Thanks for posting how it all went.  I go see the vascular doc tomorrow, so will see what he says.  I hope removing your belly button really does make you immortal!     Sending you healing thoughts!