Aa
Conflicting Advice from Doctors - Help?
I posted something here recently and it seems to have disappeared. Anyway, I'm 57 years old, genotype 1b infected in '76, failed all three treatments attempted, have been and will continue to be excluded from any clinical trials due to retinal hemorrhaging on Infergen, mild stroke, irregular heartbeat, high blood pressure under control. Okay. Last biopsy in 2004 showed Stage 3 bridging fibrosis but no cirrhosis. Subsequent ultrasounds (every six months) have continued to be normal, I was told. September ALT 52, AST 47, viral load 6.4 million, is usually about half that. All other blood work normal. I was diagnosed a couple of weeks ago at my HepC semi-annual exam with a belly button hernia and was advised to not have surgery to repair it nor any other surgery because I have cirrhosis. When I asked how they knew I had cirrhosis, they said it was highly likely and they wanted to take every precaution.
I have left messages for both HepC doctors, one highly qualified at a large teaching hospital. The woman who cautioned me about not having the hernia repaired is the one who said I likely have cirrhosis and that I need to accept the fact that I am very ill, my liver is severely damaged, and I must not do anything to make it worse while I hold on for oral-only drugs to become available. She's the assistant to the large teaching hospital hepatologist. I'm really confused! I want to get the hernia repaired and also a fracture on my foot, but the HepC doctors said I'm too sick. Then why are my labs and ultrasounds normal? HELP!! While I'm waiting for answers from them, any input would be greatly appreciated and might help me out when they do call me back.
I have left messages for both HepC doctors, one highly qualified at a large teaching hospital. The woman who cautioned me about not having the hernia repaired is the one who said I likely have cirrhosis and that I need to accept the fact that I am very ill, my liver is severely damaged, and I must not do anything to make it worse while I hold on for oral-only drugs to become available. She's the assistant to the large teaching hospital hepatologist. I'm really confused! I want to get the hernia repaired and also a fracture on my foot, but the HepC doctors said I'm too sick. Then why are my labs and ultrasounds normal? HELP!! While I'm waiting for answers from them, any input would be greatly appreciated and might help me out when they do call me back.
Best Answer
Jerialice,
I'm sorry to have brought back bad memories for you. :( This disease really *****.
To Willy50 and Others,
My primary hepatologist is the head of the Liver Center at Beth Israel, which is devoted 100% to liver research. My doctor presides over all of it.
I had the honor of his having left me a voicemail, and when I called back he took my call! :) He basically said the information I had been given was correct, but that I do not have cirrhosis but they are TREATING me as though I do for my own safety. Foot surgery he said I could definitely do, but I've read about so many bad results or the problem being made worse I'm afraid to try it, plus the rampant staph infections in the hospitals these days.
He assured me my hernia is not going to pop out of my stomach during dinner in France, but if I really want it removed, they could do it. I asked him if my swollen belly is because of the hernia or my liver or too much popcorn, and he said too much popcorn! :) Best news of all, he said my liver is very well compensated. Thank you guys again, and I'll be back to check in.
Janis
I'm sorry to have brought back bad memories for you. :( This disease really *****.
To Willy50 and Others,
My primary hepatologist is the head of the Liver Center at Beth Israel, which is devoted 100% to liver research. My doctor presides over all of it.
I had the honor of his having left me a voicemail, and when I called back he took my call! :) He basically said the information I had been given was correct, but that I do not have cirrhosis but they are TREATING me as though I do for my own safety. Foot surgery he said I could definitely do, but I've read about so many bad results or the problem being made worse I'm afraid to try it, plus the rampant staph infections in the hospitals these days.
He assured me my hernia is not going to pop out of my stomach during dinner in France, but if I really want it removed, they could do it. I asked him if my swollen belly is because of the hernia or my liver or too much popcorn, and he said too much popcorn! :) Best news of all, he said my liver is very well compensated. Thank you guys again, and I'll be back to check in.
Janis
Chris, I'm glad you saw my post and equally glad that it may have helped. Since you are familiar with Beth Israel you are aware they have some well renowned doctors. I'm confident you are getting good advice.
I have some friends who use the facility. Actually..... at one time it was one of the few hospitals which had a fibroscan machine and a well respected person who ran it (if I heard and am remembering correctly) : )
Keep up with you walking or exercising and watch your diet and you could even improve. You might also ask about any of these new liver staging techniques and inquire if your staging *were* lower if the hernia repair might be in the works.
Thank you for your response.
willy
I have some friends who use the facility. Actually..... at one time it was one of the few hospitals which had a fibroscan machine and a well respected person who ran it (if I heard and am remembering correctly) : )
Keep up with you walking or exercising and watch your diet and you could even improve. You might also ask about any of these new liver staging techniques and inquire if your staging *were* lower if the hernia repair might be in the works.
Thank you for your response.
willy
chris if you don't need the surgery- DONT. A good friend had the hepC and went in for a hernia repair and it was the thing that pushed him over the edge. your post brought back some sad memories of him wondering why he was not healing from it....
anyway that's my opinion and like others said, if you have a good doc, you'll know what's going on for sure.
hoping you get better soon!
SVR for us all!!
anyway that's my opinion and like others said, if you have a good doc, you'll know what's going on for sure.
hoping you get better soon!
SVR for us all!!
Thanks so much for your help. I must give credit to the NP at the Liver Center at Beth Israel in Boston for making me accept the truth. I've already deleted my message to her and my hepatologist questioning her advice. I don't think she'd seen it yet.
Anyway, yeah. I feel good 80%-90% of the time. I would say my quality of life is good. I'm on disability and therefore can rest and nap when I need to, read, eat what I want, etc. I keep hearing "well-compensated" a lot, so I guess that's good news. My ultrasounds and blood work being good must mean that my other organs are doing well in protecting my liver. Biopsies don't lie, but I'm well aware you can have great blood work and a very damaged liver, or bad news on blood work as far as numbers being way too high, etc., and your liver may be okay.
You guys were really there for me when I needed you these past few days, as you always are, and I try to be for others here. I'm just glad these issues (hernia and foot fracture) came up now and I thought to consult my doctors before scheduling the surgery, because I really had no idea my HepC was that bad. I guess that's because I'm still feeling pretty good. I've been skiing and running to stay in shape. Instead I'm going to walk and give up skiing because I now realize going in and repairing a fracture, if necessary, could be a real problem. I had no idea.
Anyway, yeah. I feel good 80%-90% of the time. I would say my quality of life is good. I'm on disability and therefore can rest and nap when I need to, read, eat what I want, etc. I keep hearing "well-compensated" a lot, so I guess that's good news. My ultrasounds and blood work being good must mean that my other organs are doing well in protecting my liver. Biopsies don't lie, but I'm well aware you can have great blood work and a very damaged liver, or bad news on blood work as far as numbers being way too high, etc., and your liver may be okay.
You guys were really there for me when I needed you these past few days, as you always are, and I try to be for others here. I'm just glad these issues (hernia and foot fracture) came up now and I thought to consult my doctors before scheduling the surgery, because I really had no idea my HepC was that bad. I guess that's because I'm still feeling pretty good. I've been skiing and running to stay in shape. Instead I'm going to walk and give up skiing because I now realize going in and repairing a fracture, if necessary, could be a real problem. I had no idea.
There is not much that I can add but here are a few opinions.
First, no one can second guess the doctor. You are near the edge of cirrhosis. The doctors have your labs, your history, and a far better ability to make the call than anyone on this forum.
but......
You could ask either for a biopsy, get a fibroscan some where (maybe in France), or get a fibrosure test. There are also a few new developments in determining damage, should but up near the top of this forum. The bottom line is that biopsies are not the only way of assessing damage.
....Having said that you must face the possibility that the doctors are correct and that surgery could be dangerous, or quite a bit more complicated. The hernia is not life threatening, surgery for it could be however.
Think about priorities; you can still see your granddaughter and possibly get a fibroscan while you are in France (there are few machines in the USA and they are not FDA approved yet). A fibrosure test would be cheap and easy and is often considered to be about 85% accuracy of a biopsy. Perhaps with another form of testing you can get an equal or better understanding of your staging.
It is still yet a different question at what point the surgery becomes too dangerous. Maybe it was too dangerous given your past biopsy score. I've no clue, myself.
New treatments will be here closer to 3 years; 5 years almost for sure, 10 years? Is it possible you are exaggerating a little? I believe there will be several options in 5 years, possibly numerous.
I have had a double hernia and the operation to repair it. I can understand wanting to get it over with.
I also have an acquaintance in a similar situation. Given their staging the hernia is NOT on the front burner. This person has world class hepatologists and they don't want to operate either. It is possible you are getting solid medical advice.
That's really about all I have and I hope some of it helps.
willy
First, no one can second guess the doctor. You are near the edge of cirrhosis. The doctors have your labs, your history, and a far better ability to make the call than anyone on this forum.
but......
You could ask either for a biopsy, get a fibroscan some where (maybe in France), or get a fibrosure test. There are also a few new developments in determining damage, should but up near the top of this forum. The bottom line is that biopsies are not the only way of assessing damage.
....Having said that you must face the possibility that the doctors are correct and that surgery could be dangerous, or quite a bit more complicated. The hernia is not life threatening, surgery for it could be however.
Think about priorities; you can still see your granddaughter and possibly get a fibroscan while you are in France (there are few machines in the USA and they are not FDA approved yet). A fibrosure test would be cheap and easy and is often considered to be about 85% accuracy of a biopsy. Perhaps with another form of testing you can get an equal or better understanding of your staging.
It is still yet a different question at what point the surgery becomes too dangerous. Maybe it was too dangerous given your past biopsy score. I've no clue, myself.
New treatments will be here closer to 3 years; 5 years almost for sure, 10 years? Is it possible you are exaggerating a little? I believe there will be several options in 5 years, possibly numerous.
I have had a double hernia and the operation to repair it. I can understand wanting to get it over with.
I also have an acquaintance in a similar situation. Given their staging the hernia is NOT on the front burner. This person has world class hepatologists and they don't want to operate either. It is possible you are getting solid medical advice.
That's really about all I have and I hope some of it helps.
willy
Have an Answer?
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
http://www.medhelp.org/posts/Hepatitis-C/Abdominal-Surgery-and-Stage-3-Hepatitis-C/show/1668536#post_7609179