Umbilical Hernia Repair - HCV docs have said no

[ChrisDDD]

I'm sort of ashamed to even ask this question here, but I've looked all over the internet and can't find an answer specific to my question.  The question is whether my umbilical hernia discovered in December by my HepC doctors can cause me to look like I'm 6 months pregnant, to the point that I can barely fit into my p.j.'s and sweats.  My doctors have advised against surgery to repair the hernia because my liver could decompensate or I could die on the operating table, and have both said that my weight gain is not because of the HepC nor the hernia.  Are they just being kind?  I'm 57, failed all 3 treatments, and am now waiting for the oral-only drugs to get FDA approval.  My rigorous diet and exercise program that have always enabled me to get to or stay at my preferred weight are not working.  I stay right at the 15 pounds overweight I've been at for the last few months.  I'm going to have to go buy a whole new wardrobe.  I mean even my underwear don't fit anymore.  Okay?

[copyman]

Sounds like you and Dr A have a good plan. You are lucky to be near a world renown Dr.

Best of luck to you.

[ChrisDDD]

Dr. Afdhal is my doctor.  I haven't had a FibroScan.  I guess my job at this point is to take the very best care of myself that I can and hope I don't end up having to undergo any abdominal surgery in the next five years or, say, find out that I have breast cancer.  I'm sure I wouldn't live through the treatment for that.

I haven't had a biopsy since 2004.  During those 8 years there was still a possibility I could get some kind of treatment, but I began having other health problems that precluded my participating in any clinical trials.  Dr. Afdhal said this past December that he had nothing to offer me until the oral-only drugs are APPROVED.  He doesn't want to treat me with an unproven drug.  Maybe no liver biopsy because my doctors are afraid I'll bleed to death?

The good news is I found my ultrasound reports for the last 8 years, and my most recent one in December said "No ascites".  Whew.  I'm changing my diet with all of this in mind to give my body, including my liver, the best possible chance to stay healthy and strong until I hopefully can go through treatment.

[copyman]

Sounds like you are in good hands. I consulted with a top specialist at Beth Israel, Dr Afdhal. I drove around 7 hrs from NJ to see him. Did you get a "FibroScan" at the liver center? That was one of the main reasons I traveled so far, they are one of only 5 places with the Fibroscan in the USA.

Sorry not familiar with your history. Do NOT rely only on fibroscan for diagnosis of cirrhosis. Confirm with biopsy.

Best of luck

[ChrisDDD]

I've always had an "innie" belly button and not an "outie".  The hernia's only protruded so that I have to pull back the skin on either side of my belly button to see it, so it barely looks like an "outie" even now, but I keep worrying how big is the hernia really, I mean inside my body.

[ChrisDDD]

My doctor is chief hepatologist at the Liver Center at Beth Israel in Boston (2-hour drive).  He teaches at Harvard, and the entire 4th floor of the Liver Center at Beth Israel is devoted to research, which he also is chief of.  We're doing screening ultrasounds every six months, and they've remained unchanged for at least the last five years.  My other hepatologist lives in the city I do and treats most of the HepC patients in this state.  He does my endoscopies and is adamant I have no ascites.  Doctor in Boston says no ascites also.

Doctor in Boston said my liver is very well compensated, which explains why I feel really good most of the time.  I asked him how could it be that virtually all of my every-6-month blood work comes back completely normal except slight elevations of the liver enzymes and my liver is in such bad shape that I can't get this hernia removed.  Of course you expect the elevations in liver enzymes with HepC.  Doctor said the reason I still feel pretty good is because, in his words, "You are very well compensated."  Then I remembered what Hector said about decompensating during an operation, and that's why I've decided to not have the hernia repair surgery nor any other surgery if it can possibly be avoided.

I don't know.  I really don't know what to think or do.  I have a grandson coming in May, my first grandchild.  I want to be honest with my three adult daughters, including the one having the baby, but I don't want to worry them or frighten them.  They've had a really tough life, through no fault of mine or theirs, and I'm all they have.  My stupid siblings are idiots, so they're useless as far as family goes.

Anyway, I've been eating way less and exercising way more the last few days, and I've lost 3 pounds.  So how could I have ascites when my two doctors insist I don't?  I can't even handle this.  I'm so sick of it.  Now I'm just being a crybaby and whining.  Sorry.  Hector, you have my deepest respect and I wish you well.  I'll be around.  I'll also check out the link one of you who isn't Hector gave me.  You're the best.

[HectorSF]

"But you still have a sense of humor..."

A sense of humor counts for nothing with the ladies here in SF. They want the expense dinners and nights on the town. Then it is "Put out or get lost". I'm soooo tired of just being a sex object and a bank! Boo hoo.  :' (

haha
If I didn't laugh at it I would be cryin'.

Hector

[Ironpony]

I had an umbillical hernia repair in 2008, it was an extremely small one that was a small bulge right above my belly button. I didn't look 6 months pregnant, but I suppose if it had been bigger it could have looked that way because of it's location. I do agree a bulge (even a big one) would appear more localized and shouldn't fill your complete abdomen. I could definitely feel what was spilling out as well. (Not pleasant)
I had my surgery while I uknowingly had hep c, but at that point had only had it a few years and had no damage.
I hope you feel better and can figure out if this is from weight gain, ascites or tge hernia. I wish u the best!
Laura

[CoWriter]

A hernia is an outward bulging of the abdominal  lining in an area that became weak.  But a hernia doesn't involve the whole abdomen like you describe and it doesn't make you gain 15 lbs.  

"My abdomen is swollen from just below my breasts to right above where my underwear are so that pants that fit around my waist are hanging loose and empty below my navel."
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That sounds like ascites.  An accumulation of fluid in the abdominal cavity.  It can happen from cirrhosis and in some cases from heart problems (and in rare cases from low thyroid).  

Salt restriction helps and your doctor may prescribe diuretics (meds that increase urination). You may also need an ultrasound if you haven't had one recently.  

Co

[CoWriter]

"My libido gone. Like I am castrated. Nothing. Nada. Zip. Multiple use no more. I'm happy I can still urinate."
-----

But you still have a sense of humor and that beats libido any day.

Co

[orphanedhawk]

The swelling you describe sounds like ascites, as Hector mentioned.
You can help control your ascites by eating as close to a no salt diet as possible. Diuretics will help too.

You need to be seeing a hepatologist experienced in liver disease.
They should be able to help you.

Good luck.

[pooh55811]

I see that while I was typing my previous post, one of the experts, Hector, did respond!

[pooh55811]

I am sorry you are having so these health problems. Hep C is bad enough but you have a lot more on your plate.

Your first question:
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"The question is whether my umbilical hernia discovered in December by my HepC doctors can cause me to look like I'm 6 months pregnant, to the point that I can barely fit into my p.j.'s and sweats."
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I looked on-line and I found this page of photos. Some of them do make people look they are 6 months pregnant. If you keep scrolling and look at all photos of large abdomens you can see they are all umbilical hernias (hovering over them gives the diagnosis).

http://www.google.com/search?hl=en&safe=active&biw=1243&bih=904&gbv=2&tbm=isch&sa=1&q=umbilical+hernia&aq=f&aqi=g10&aql=&oq=#q=umbilical+hernia&hl=en&safe=active&gbv=2&tbm=isch&bav=on.2,or.r_gc.r_pw.r_qf.,cf.osb&fp=1&biw=1280&bih=657


As to your other question:
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"My doctors have advised against surgery to repair the hernia because my liver could decompensate or I could die on the operating table, and have both said that my weight gain is not because of the HepC nor the hernia.  Are they just being kind?"
---------------------------------------------

I am not an expert, but I am wondering if you have fluid in your abdomen as well as having the umbilical hernia. I looked back at your Dec. post and you said you are at Stage 3 and that , interms of hernia surgery, the doctors are treating you as if you have cirrhsois. If your weight gain is not from the hernia or the Hep C, then it may be either true weight gain from increased fat or it could be fluid build-up. There are other people on this forum with a lot more expertise on liver disease and they may be able to answer this question.

I wish you the best and hope this can be resolved.

[HectorSF]

Sorry Chris. Many of us with End-Stage Liver Disease (ESLD) have umbilical hernias. Some not as bad as yours, others are worse. We get them from having ascites. Fluid build up in our abdomens. One of the most common complications of ESLD. (decompensated cirrhosis).

Your docs are correct. It is risky to repair and pointless to boot, because when as soon as you have extensive ascites again the hernia would develop again. Yes, advanced liver disease is not kind to living things.

The good news is that after transplant it can and will be repaired. So like so many complications of ESLD they all disappear after transplant. If you don't mind, what is your MELD score. How close are you to transplant?

I am glad you are working your diet and exercise that is very, very important. Te healthier you go into transplant the faster you can bounce back my friend. If you can lose weight it may help to some degree but the problem is that the hernia is always going to be extended no matter what you do. I would talk to you doc and see if they have any ideas besides loose clothing. Obviously is is a very common problem.

I don't want to get off topic but it sounds like you were or are decompensated. They are still going to treat you? You know that is risky and should only be done after getting listed for transplant and under very close surveillance. Hep C treatment in decompensated patients is problematic with adverse events such as platelets counts, anemia, and other blood levels and can make your liver worse or cause it to fail in a small number of case. All depending on diseased your liver is.

This is just my opinion but from my experience ESLD causes us to lose one thing after another that we have taken for granted our whole lives as the disease progresses. It comes with the territory. I have found that over time I try to adjust to the changes and live with them knowing that when I get my transplant I will return to something like my old self. Here are a few things I have struggled with. Encephalopathy and foggy thinking. I can't remember what it was like to have a clear mind. Fatigue and lose of energy. Working a full day 5 days a week may as well be climbing Mt. Everest. Impossible. I can't even imagine doing that. My libido gone. Like I am castrated. Nothing. Nada. Zip. Multiple use no more. I'm happy I can still urinate. Whoopee! I am not gonna be any bathing suit model with my ripped belly button, caput medusa (talk about nasty- venous collaterals appearing on abdomen), spider angiomata and the lovely teenybopper gynecomastia.  Yeah, I may need a training bra soon. ;-0  
And these chemo treatments ain't exactly kind to an old man's hair follicles either. What next???
If you aren't familiar with all of these and there are many more "nasties" you are lucky.

Bottom line... I AM STILL ALIVE! And that is everything in my book. Where there is life, there is hope. And all this other stuff is a pain but they are TEMPORARY.

Hang in there. Keep your eyes on the prize!

Hector

[ChrisDDD]

My abdomen is swollen from just below my breasts to right above where my underwear are so that pants that fit around my waist are hanging loose and empty below my navel.