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Abdominal Surgery and Stage 3 Hepatitis C
Hey, all. I've been coming here for years. Today I couldn't think of who I could talk to, when I remembered this group. I've had chronic Hepatitis C genotype 1b for 36 years. I've gone through 3 treatments and failed all of them. Now I'm not eligible for any clinical trials because I had retinal hemorrhaging on Infergen, plus I've had a mild stroke and irregular heartbeat. A "belly button hernia" was confirmed at my semi-annual checkup last month, but I was told all cirrhotic patients are strongly advised not to have any kind of abdominal surgery. When I responded that my biopsy in 2004 showed bridging fibrosis but no cirrhosis, my blood work and ultrasounds have been good, I was told that all patients who have Stage 3 bridging fibrosis, at least to the level I had on biopsy, we're treated as though we do have cirrhosis and that in all likelihood I have developed cirrhosis by now.
I am so furious I can hardly stand it! My first grandchild will be born this May. I'm going on a trip in September to another country. I don't want to wait on removing the hernia until it becomes a crisis because what if it suddenly has to be removed during the birth of my grandchild or when I'm in France? I know I'm just feeling sorry for myself, but I really could use some encouragement right now. I started arguing with both medical assistants (until I can talk to the actual doctors next week) why wait for that disaster to happen? They come back with the cirrhosis crap. I told them I am so tired of this *%@*$%& disease running my life! For almost 40 years now! They said I could die on the operating table if I have the hernia removed now, and I said I didn't care anymore. They said there will be oral-only treatments I can go on in 5 years (which probably means 10), and to not give up hope but to really accept how severely damaged my liver is. Why? Most of the time I feel pretty good (some nausea, fatigue and brain fog maybe twice a month?), and my tests were good! My platelets are high, LFT's between 50-60, all other blood work normal and viral load of 6.4 million, double what it was a year ago.
I'm sorry. I just don't know where else to turn but to people who have lived with this and know what I'm talking about. And, yes, I'm on an anti-depressant, along with a ton of other medication for the high blood pressure, stroke, heartbeat. I'm 57 years old but still feel 18 in my head. I'm happy for those of us who get well and, I do admit, very jealous.
I am so furious I can hardly stand it! My first grandchild will be born this May. I'm going on a trip in September to another country. I don't want to wait on removing the hernia until it becomes a crisis because what if it suddenly has to be removed during the birth of my grandchild or when I'm in France? I know I'm just feeling sorry for myself, but I really could use some encouragement right now. I started arguing with both medical assistants (until I can talk to the actual doctors next week) why wait for that disaster to happen? They come back with the cirrhosis crap. I told them I am so tired of this *%@*$%& disease running my life! For almost 40 years now! They said I could die on the operating table if I have the hernia removed now, and I said I didn't care anymore. They said there will be oral-only treatments I can go on in 5 years (which probably means 10), and to not give up hope but to really accept how severely damaged my liver is. Why? Most of the time I feel pretty good (some nausea, fatigue and brain fog maybe twice a month?), and my tests were good! My platelets are high, LFT's between 50-60, all other blood work normal and viral load of 6.4 million, double what it was a year ago.
I'm sorry. I just don't know where else to turn but to people who have lived with this and know what I'm talking about. And, yes, I'm on an anti-depressant, along with a ton of other medication for the high blood pressure, stroke, heartbeat. I'm 57 years old but still feel 18 in my head. I'm happy for those of us who get well and, I do admit, very jealous.
"You say you are 57. I am 59. I would venture to say we probably are not bathing suit models so having a umbilical hernia is not the end of the world. ;-) "
Speak for yourself! :) Just kidding. You've got to have a sense of humor, you know. Thanks for your help.
Speak for yourself! :) Just kidding. You've got to have a sense of humor, you know. Thanks for your help.
I'll respond just to give it a bump, not for the sake of my knowledge!
"How can I have cirrhosis and/or severe liver damage and have normal ultrasounds and blood work?"
You can easily have normal blood work and have cirrhosis. Usually though, not always, platelets are below range. Stumped on ultrasounds, I *presume* mine weren't normal since something prompted them to give a biopsy.
When was the last biopsy? How current is your blood work? Do you have a MELD score?
Sry it isn't much help.
All the Best.
"How can I have cirrhosis and/or severe liver damage and have normal ultrasounds and blood work?"
You can easily have normal blood work and have cirrhosis. Usually though, not always, platelets are below range. Stumped on ultrasounds, I *presume* mine weren't normal since something prompted them to give a biopsy.
When was the last biopsy? How current is your blood work? Do you have a MELD score?
Sry it isn't much help.
All the Best.
I don't know why I didn't receive e-mail notifications that anyone had responded to my questions, but I'm sure glad I found my question so I could see and feel all of this support! It's so comforting. I don't have all of my info handy as far as PT, creatinine, etc., just my ALT's and AST's, which are basically unchanged since 2007. My VL has doubled since 2004, from 2.9 or 3.2 million or so to 6.7 million. I assumed my doctors were waiting to do another biopsy before they try what will be the fourth treatment attempt.
I first treated in 1999 in a clinical trial with straight Interferon only, had what I thought was a partial response in that I went to zero within the first month, then shot back up past the viral load I started with and ended up getting kicked out of the trial. In 2001 I did Pegylated Interferon with Ribavirin. VL went down from 2.9 million or so to 400,000? Doctor took me off of it because he said it wasn't working. 2005 did Infergen daily for nine weeks until my retinal re-check. The retinal specialist found what he said was the worst retinal hemorrhaging he had ever seen and recommended I not do my shot that night and he would be calling my doctor in the morning. My VL again had gone down by a couple of million, but never cleared to zero. I was beside myself, furious, devastated, especially because in the years since then I have seen other patients post their eye problems during treatment, and when the treatment stops so do the eye symptoms. I know some aren't that lucky and end up blind.
I sought a second opinion on my own from the director of the Liver Center and head of the entire research department at a large teaching hospital, very respected. He said he would have taken me off of the Infergen because it wasn't working, not because of the eye problems.
Anyway, I guess my question has changed from "Is it safe to have hernia surgery if you have HepC" to "How can I have cirrhosis and/or severe liver damage and have normal ultrasounds and blood work?" It will be great to have some input like you guys have given me when they return my phone calls (they better return my phone calls!). :)
I first treated in 1999 in a clinical trial with straight Interferon only, had what I thought was a partial response in that I went to zero within the first month, then shot back up past the viral load I started with and ended up getting kicked out of the trial. In 2001 I did Pegylated Interferon with Ribavirin. VL went down from 2.9 million or so to 400,000? Doctor took me off of it because he said it wasn't working. 2005 did Infergen daily for nine weeks until my retinal re-check. The retinal specialist found what he said was the worst retinal hemorrhaging he had ever seen and recommended I not do my shot that night and he would be calling my doctor in the morning. My VL again had gone down by a couple of million, but never cleared to zero. I was beside myself, furious, devastated, especially because in the years since then I have seen other patients post their eye problems during treatment, and when the treatment stops so do the eye symptoms. I know some aren't that lucky and end up blind.
I sought a second opinion on my own from the director of the Liver Center and head of the entire research department at a large teaching hospital, very respected. He said he would have taken me off of the Infergen because it wasn't working, not because of the eye problems.
Anyway, I guess my question has changed from "Is it safe to have hernia surgery if you have HepC" to "How can I have cirrhosis and/or severe liver damage and have normal ultrasounds and blood work?" It will be great to have some input like you guys have given me when they return my phone calls (they better return my phone calls!). :)
I am not sure exactly what you are asking for but I believe I can put your concerns into perspective which may be food for thought......
Since you had stage 3 liver disease in 2004. A person with stage 3 liver disease should have a biopsy every 3-5 years. Is there a reason you haven't had a more recent biopsy. Have you had an Ultrasound, CT scan or MRI of the abdomen recently? The signs of cirrhosis can usually be seen (nodular growth on the surface of the liver indicating massive scarring) using any of those methods though the gold standard for staging of the liver is a biopsy.
You say your platelet count is "high". How high?
If you are seeing a gastroenterologist or hepatologist they should be able to say whether you have cirrhosis not not. Why not ask?
'I don't want to wait on removing the hernia until it becomes a crisis because what if it suddenly has to be removed during the birth of my grandchild or when I'm in France? '
I believe you are worrying about something that is very unlikely to ever happen. Many of us with advanced cirrhosis how have had ascites have umbilical hernias. I have had mine for over 2 years now and many of us waiting for transplants have them. The fact is that any patient with cirrhosis has a higher risk for surgical complications than a healthy patients. Therefore since it is a cosmetic issue it is not advised for any patient with cirrhosis to have elective surgery. Yes, no nose jobs, butt lifts, lipo. You say you are 57. I am 59. I would venture to say we probably are not bathing suit models so having a umbilical hernia is not the end of the world. ;-)
All medical procedures should be done on the basis of risk vs benefit. So in your case you are many times more likely to suffer from complications during the surgery (you have other health issues which compound the risk too 'stroke and irregular heartbeat') then your hernia becoming twisted.
As Bill mentioned, it appears your cirrhosis is still compensated, which is why you are not feeling ill every day. So you are very lucky.
I am not sure why you can't try treatment with the new antiviral hep C treatments. You don't mention how you responded to previous treatment. Non-responder, Partial, Relasper...You are currently gambling that your cirrhosis will remain stable until the new treatments without interferon are available. Probably in 3-5 years. I hope you realize that if your liver should decompensate, you will no longer be able to treat your hep C and will need a transplant to continue living. Advanced liver disease not managed properly can be fatal. In my view that is a whole lot more important than a trivial hernia. If you do decompensate it is very likely you will get another umbilical hernia anyway.
Oh by the way I have had cirrhosis for 4-5 years. End-Stage Liver Disease for over 2 years. And liver cancer for 6 months now. I am also listed at two transplant centers and am waiting for a life saving transplant as all of my options have run out. If I were you I would take action sooner than later cause you don't want to end up in my position.
Good luck.
Hector
Since you had stage 3 liver disease in 2004. A person with stage 3 liver disease should have a biopsy every 3-5 years. Is there a reason you haven't had a more recent biopsy. Have you had an Ultrasound, CT scan or MRI of the abdomen recently? The signs of cirrhosis can usually be seen (nodular growth on the surface of the liver indicating massive scarring) using any of those methods though the gold standard for staging of the liver is a biopsy.
You say your platelet count is "high". How high?
If you are seeing a gastroenterologist or hepatologist they should be able to say whether you have cirrhosis not not. Why not ask?
'I don't want to wait on removing the hernia until it becomes a crisis because what if it suddenly has to be removed during the birth of my grandchild or when I'm in France? '
I believe you are worrying about something that is very unlikely to ever happen. Many of us with advanced cirrhosis how have had ascites have umbilical hernias. I have had mine for over 2 years now and many of us waiting for transplants have them. The fact is that any patient with cirrhosis has a higher risk for surgical complications than a healthy patients. Therefore since it is a cosmetic issue it is not advised for any patient with cirrhosis to have elective surgery. Yes, no nose jobs, butt lifts, lipo. You say you are 57. I am 59. I would venture to say we probably are not bathing suit models so having a umbilical hernia is not the end of the world. ;-)
All medical procedures should be done on the basis of risk vs benefit. So in your case you are many times more likely to suffer from complications during the surgery (you have other health issues which compound the risk too 'stroke and irregular heartbeat') then your hernia becoming twisted.
As Bill mentioned, it appears your cirrhosis is still compensated, which is why you are not feeling ill every day. So you are very lucky.
I am not sure why you can't try treatment with the new antiviral hep C treatments. You don't mention how you responded to previous treatment. Non-responder, Partial, Relasper...You are currently gambling that your cirrhosis will remain stable until the new treatments without interferon are available. Probably in 3-5 years. I hope you realize that if your liver should decompensate, you will no longer be able to treat your hep C and will need a transplant to continue living. Advanced liver disease not managed properly can be fatal. In my view that is a whole lot more important than a trivial hernia. If you do decompensate it is very likely you will get another umbilical hernia anyway.
Oh by the way I have had cirrhosis for 4-5 years. End-Stage Liver Disease for over 2 years. And liver cancer for 6 months now. I am also listed at two transplant centers and am waiting for a life saving transplant as all of my options have run out. If I were you I would take action sooner than later cause you don't want to end up in my position.
Good luck.
Hector
I had an umbilical hernia sticking out of my stomach about 2" and asked several times to have it repaired and was continuously told that the medicine used in the operation was to dangerous, as I have HCV GT1 w/cirrhosis. The hernia became entangled and I had to be carried to the hospital early one morning and very quickly put in the O. R. after that everything was alright. They didn't remove it they just got the knot out of it, and sewed me back up. Not planning the operation makes it cost about 3X as much and you are worked on by whoever is on call that night. The next time I saw my Dr. was the last time I spoke to him as I told him, ' I had to take all of that medecine anyway didn,t I'. Since then I have had 2 more repaired, lower right abdominal, no big deal.
This is not advise, just understanding and shareing info. So go ahead and vent and I hope it all works out for you.
Griz
This is not advise, just understanding and shareing info. So go ahead and vent and I hope it all works out for you.
Griz
I feel for you, Chris. No problem venting here, of course. I don’t know which doctor is telling you to avoid surgery, but it’s hard to imagine your liver disease by itself would be a barrier.
Coagulopathy can be problematic for cirrhotic patients, and of course low platelets can be concerning. If your INR/protime are okay, and platelets are say, >100,000 I wonder what the issue is? Is there any even evidence you have indeed progressed into cirrhosis? And even if you have I can’t imagine why as compensated, well managed cirrhosis is even an issue.
Talk with the liver doc; perhaps they can intervene on your behalf?
Best of luck with this along with everything else and take good care-
--Bill
Coagulopathy can be problematic for cirrhotic patients, and of course low platelets can be concerning. If your INR/protime are okay, and platelets are say, >100,000 I wonder what the issue is? Is there any even evidence you have indeed progressed into cirrhosis? And even if you have I can’t imagine why as compensated, well managed cirrhosis is even an issue.
Talk with the liver doc; perhaps they can intervene on your behalf?
Best of luck with this along with everything else and take good care-
--Bill
"I'd like to say that I looked up how to delete the monologue I wrote, and I can't find how to do it. Anyway, I hope I'll be forgiven for venting."
Ok you're forgiven and if you need to vent again come on down, that's part of what this forum is all about. Yes, HepC is frustrating and nothing seems to go like you want it to ever but you're alive right now and you have alot to be grateful for. HepC ***** worse than a baby elephant on a baby bottle but we continue onward because we have no choice. We all have families and they want us around no matter what. You really don't want to die on the operating table not after all you've gone thru with this hideous HepC. You're a trooper, I'm sure you will come up with a workable solution. Sometimes all we can do is hurry up and wait, at some point that's what we do. Good Luck and God Bless.
Ok you're forgiven and if you need to vent again come on down, that's part of what this forum is all about. Yes, HepC is frustrating and nothing seems to go like you want it to ever but you're alive right now and you have alot to be grateful for. HepC ***** worse than a baby elephant on a baby bottle but we continue onward because we have no choice. We all have families and they want us around no matter what. You really don't want to die on the operating table not after all you've gone thru with this hideous HepC. You're a trooper, I'm sure you will come up with a workable solution. Sometimes all we can do is hurry up and wait, at some point that's what we do. Good Luck and God Bless.
Don't feel bad about venting. If not here, then where??!! You certainly have a lot of issues to deal with and just because someone else may have worse doesn't mean you don't need advise and understanding.. I can't offer advise for your specific medical problems, but, there are many very well informed folks who have dealt with it all. Hang in, I'm sure someone will be along who can help.
I'd like to say that I looked up how to delete the monologue I wrote, and I can't find how to do it. Anyway, I hope I'll be forgiven for venting. Many people have much worse problems than I do, like children who die of cancer when they're only seven years old, like my sister, or even younger. Meditate. Reality check.
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