Aa
brand new and confused
During hernia surgery in November, the surgeon noticed my liver didn't look so good, so he performed a biopsy. I went in after three weeks to get a "permission to return to work note." Instead, he presented me with the biopsy report, and several pictures of my damaged liver. "Cirrhosis!" screamed at me from the diagnosis. Of course I had heard of it, but knew very little about it. I booked it straight to my primary care physician, and presented him with the unpleasant news. He ordered blood tests, and made an appointment with a gastroenterologist, who I saw the next day. When I asked him what I could do, he said nothing other than a transplant. Very bleak. In a few days, the blood test indicated I had hep c! What? Last week I thought I was healthy, now I' m dying, and have hep c? Wait, this isn't my life, this is a mistake, how could I have hepatitis c for 30-40 years and not be aware? Never detected? Went home and was advised by family member s to get my final papers in order. The doctor wouldn't let me go back to work because of the hep. More blood results, genotype 2. Now I'm awaiting my treatment s in the mail, and my doctor says I can't go back to work for at least three months! Keep in mind, all this has happened in two weeks time. Is this par for the course? Thanks much, and best wishes for a long and happy life.
All of these people who have posted have helped me in my new journey and they know what they are talking about. I was diagnosed on December 2 and immediately made an appointment with a hepatologist, thanks to their advice. My results are just now coming in, so I am only a little further along than you. I can't give the great advice the others can, but I can echo what they say about your reaction. I, too, was completely shocked when I was told I tested positive for the antibodies (a routine screen showed that). I think I went through my meltdown that day. But, thanks in large part to this forum, the fighter in me emerged and I am determined to beat this disease.
I agree with everyone regarding finding a Hepa. It sounds like you have been given some really inaccurate information and you need to talk to an experienced, trained HCV provider. And educate yourself. In the very beginning, I had brain overload and had to take a couple breaks from the internet because there is so much to learn. But these folks, OMG, they are your biggest advocates. Listen and learn and follow their advice.
Best of luck to you....and BREATHE!
I agree with everyone regarding finding a Hepa. It sounds like you have been given some really inaccurate information and you need to talk to an experienced, trained HCV provider. And educate yourself. In the very beginning, I had brain overload and had to take a couple breaks from the internet because there is so much to learn. But these folks, OMG, they are your biggest advocates. Listen and learn and follow their advice.
Best of luck to you....and BREATHE!
I have only read your post so if I repeat here I apologize.
I am sorry to say that having it for 30 years before finding out is pretty common. At least in my experience.
I did not find out I had HCV until 30 years after exposure. Evidently I was one of those who did not get sick when exposed. My doc said that people who get sick have a better chance of their body fighting it off. I had no symptoms until the last few years. I started noticing red spots on my legs and my platelets were very low.
I do think you need a new doctor. I also have cirrhosis, finished treating 8 months ago and and clear of the virus. The only thing I was told was that if I did not treat and get rid of the HCV I would need a transplant in 5 to 10 years. In hindsight I think that was said to scare me in to the trial. I was very ignorant, still am, just know more.
I wish you the best. the best thing you can do is read the posts on here, google hcv and learn as much as you can.
In many experiences we have found we have to be our own advocate to make sure we receive the tx we need.
Dee
I am sorry to say that having it for 30 years before finding out is pretty common. At least in my experience.
I did not find out I had HCV until 30 years after exposure. Evidently I was one of those who did not get sick when exposed. My doc said that people who get sick have a better chance of their body fighting it off. I had no symptoms until the last few years. I started noticing red spots on my legs and my platelets were very low.
I do think you need a new doctor. I also have cirrhosis, finished treating 8 months ago and and clear of the virus. The only thing I was told was that if I did not treat and get rid of the HCV I would need a transplant in 5 to 10 years. In hindsight I think that was said to scare me in to the trial. I was very ignorant, still am, just know more.
I wish you the best. the best thing you can do is read the posts on here, google hcv and learn as much as you can.
In many experiences we have found we have to be our own advocate to make sure we receive the tx we need.
Dee
I agree with what the others wrote. If you are cirrhotic you will need an even better doctor. I agree that a hepatologist is the way to go.
No one here can definitively say the doctor is wrong, but I would want a specialist to confirm or elaborate on the diagnosis and prognosis. I have heard plenty of people who were told to get their affairs in order that were still kicking around 10 years later. I have one acquaintance who has been cirrhotic for 15 years+.
Get a referral and see if it can be expedited. Be seen soon. A gastro should know, but it sure couldn't hurt to do a final check. It would be a shame to have a window of opportunity and not use it. You can also bring or have the hepatologist check your slides from the biopsy for a second opinion.
An experienced hepatologist will be able to council you about treatment, diet and other extra-hepatic issues you may also have.
They should be well versed in whether you can treat, whether you can wait, and what you should do.
willy
No one here can definitively say the doctor is wrong, but I would want a specialist to confirm or elaborate on the diagnosis and prognosis. I have heard plenty of people who were told to get their affairs in order that were still kicking around 10 years later. I have one acquaintance who has been cirrhotic for 15 years+.
Get a referral and see if it can be expedited. Be seen soon. A gastro should know, but it sure couldn't hurt to do a final check. It would be a shame to have a window of opportunity and not use it. You can also bring or have the hepatologist check your slides from the biopsy for a second opinion.
An experienced hepatologist will be able to council you about treatment, diet and other extra-hepatic issues you may also have.
They should be well versed in whether you can treat, whether you can wait, and what you should do.
willy
Wow your doctor performed a biopsy during an unrelated surgical procedure due to how your liver appeared!? That is nothing short of a miracle and very lucky indeed since you are asymptomatic. As other suggest there are positive implications for this. Unfortunately I agree with the others about your doctor.
I know you are in shock right now so this might not be easy to hear but very few people in medicine know how to treat Hepatitis C. Indeed, from now on you will be the one who has to educate people. It is a huge body of knowledge but it will be easy for you to pick up since it directly applies to you. I am sorry you were given misleading and patently inaccurate information.
I guess I always thought doctors had a God-like status and prior to being diagnosed I would never have questioned a doctor's advice. Do not let this happen to you. I would never tell someone to tell their doctor to hit the road but I agree with the others you deserve the expertise of someone trained to treat Hepatitis C. Your PCP might be able to help coordinate care in some small respect if there is a travel or distance impairment but other than that I strongly encourage you to see a liver specialist.
I know you are in shock right now so this might not be easy to hear but very few people in medicine know how to treat Hepatitis C. Indeed, from now on you will be the one who has to educate people. It is a huge body of knowledge but it will be easy for you to pick up since it directly applies to you. I am sorry you were given misleading and patently inaccurate information.
I guess I always thought doctors had a God-like status and prior to being diagnosed I would never have questioned a doctor's advice. Do not let this happen to you. I would never tell someone to tell their doctor to hit the road but I agree with the others you deserve the expertise of someone trained to treat Hepatitis C. Your PCP might be able to help coordinate care in some small respect if there is a travel or distance impairment but other than that I strongly encourage you to see a liver specialist.
Kudos to your surgeon for noticing your cirrhotic liver and bringing this to your attention. It does take a while to wrap your head around this new information. I had a similar experience while in for surgery. They ran the typical blood tests and my LFT's came back elevated. This led to further blood test and I received the news of being HCV positive while in the recovery room. As much as we don't want to admit, we were done a huge favor to give us the opportunity to deal with and rid ourselves of this silent killer. Now its time to get the best treatment available from the best qualified doctors. As recommended above, don't see a Gastro, go to a well qualified Hepatologist.
You didn't mention the stage of cirrhosis so its difficult to tell the level of current damage. You've received some wonderful advice above, so not much to add. As you see this forum has some very knowledgeable and caring members willing to provide guidance and support. Don't hesitate to ask questions here. Best to you.
You didn't mention the stage of cirrhosis so its difficult to tell the level of current damage. You've received some wonderful advice above, so not much to add. As you see this forum has some very knowledgeable and caring members willing to provide guidance and support. Don't hesitate to ask questions here. Best to you.
Please try to be calm. I am sorry for your diagnoses but as you said you are new to this so let me assure you the chances of things being that bleak is small.
First hepatitis C and cirrhosis is not a death sentence. I have had cirrhosis for over 5 years now and I and many other are still alive.
The issue is the doctors you have spoken to are not experts in liver disease and even the gastro doesn't seem to know much about hepatitis C.
So the most important thing you need to do is see a hepatologist (liver specialist) at a large teaching hospital. You need to be evaluated by a doctor who is knowledgeable and experienced in managing the health of people with cirrhosis on a daily basis. If I were you I would go to the Mayo Clinic in Phoenix. It is one of the best hospitals anywhere for treating hep C and liver disease. Arizona 800-446-2279 (toll-free)
8 a.m. to 5 p.m. Mountain Standard Time, Monday through Friday
Mayo Clinic doesn't require a physician referral. Some insurers require referrals, or may have additional requirements for certain medical care. All appointments are prioritized on the basis of medical need.
Why choose Mayo Clinic for hepatitis C
Testing expertise. Mayo has sophisticated testing to identify which genetic type of virus you have and your genetic predisposition to respond to therapy — so that therapy can be tailored to your needs. Mayo has also developed a new test, magnetic resonance elastography, which can noninvasively detect early changes in your liver tissue.
Team approach. Mayo Clinic doctors trained in liver disease (hepatologists) work with specialists in infectious disease, transplantation and other specialties to care for people who have hepatitis C. Children with advanced liver disease are treated by a team of specialists, including pediatric hepatologists, at the Eugenio Litta Children's Hospital in Rochester, Minn.
Experience. Mayo Clinic specialists are experienced in managing the complex drug treatments for hepatitis C. If you need a liver transplant, Mayo Clinic's liver transplant program is one of the largest in the world.
New approaches. You have access to experimental treatments continually being studied by Mayo clinician researchers.
Good news - You have the easiest genotype of hep C to cure!!! You are very lucky.
"Last week I thought I was healthy, now I' m dying, and have hep c? "
- As I have said. You are NOT dying. If you were dying you would be deathly ill and hospitalized. It appears you don't have signs of advanced cirrhosis as you would have notice other problems. This is why I believe if you get proper medical help now you have a very good chance of curing your hep C and stopping further injury to your liver. Only very ill patients that have complications of cirrhosis can't treat their hep C. I assume you haven't vomited blood? Your abdomen does look like you are pregnant? Your skin hasn't turned yellow? Many people with cirrhosis treat their hepatitis C.
"this isn't my life, this is a mistake, how could I have hepatitis c for 30-40 years and not be aware? "
- This is what happens when we receive what we think is bad news. We can’t believe it. This happens to others not ME!
Unfortunately this happens because hepatitis C does not cause any outward signs of illness in most infected people.
"my doctor says I can't go back to work for at least three months! "
Treatment is for 6 months if you are treating with peg-interferon and ribavirin.
"made an appointment with a gastroenterologist, who I saw the next day. When I asked him what I could do, he said nothing other than a transplant." WHAT TREATMENT? WHO IS GOING TO TREAT YOU? You having cirrhosis should never treat with a primary care physician or even a gasto since you are so close to Mayo. You are risking treatment failure or worst. If you are worried about your life you with drive 50 miles to Mayo to get world class heath care rather than treating with a unqualified doctor. Remember without proper treatment cirrhosis can be fatal! Would you go to your primary doctor for surgery? Of course not. Neither should you have a primary doctor who knows little to nothing about cirrhosis and treating hepatitis C in a person with cirrhosis.
When a person has cirrhosis they realize this may be their last chance to stop the virus or they will need a liver transplant if they fail. There may be no second chance to cure your hepatitis C. Beside who want to be ill for 6 months and then fail treatment? Treatment in cirrhotics is not usually easy. You are likely to have anemia and other side effect that you will be dependent of your doctor to manage properly. Primary care and gastros are not trained and experienced in doing this.
Don't set yourself up for failure. Call Mayo on Monday and tell your doctor you want Mayo to treat you. You can use the drugs that are on order.
Good luck!
hector
First hepatitis C and cirrhosis is not a death sentence. I have had cirrhosis for over 5 years now and I and many other are still alive.
The issue is the doctors you have spoken to are not experts in liver disease and even the gastro doesn't seem to know much about hepatitis C.
So the most important thing you need to do is see a hepatologist (liver specialist) at a large teaching hospital. You need to be evaluated by a doctor who is knowledgeable and experienced in managing the health of people with cirrhosis on a daily basis. If I were you I would go to the Mayo Clinic in Phoenix. It is one of the best hospitals anywhere for treating hep C and liver disease. Arizona 800-446-2279 (toll-free)
8 a.m. to 5 p.m. Mountain Standard Time, Monday through Friday
Mayo Clinic doesn't require a physician referral. Some insurers require referrals, or may have additional requirements for certain medical care. All appointments are prioritized on the basis of medical need.
Why choose Mayo Clinic for hepatitis C
Testing expertise. Mayo has sophisticated testing to identify which genetic type of virus you have and your genetic predisposition to respond to therapy — so that therapy can be tailored to your needs. Mayo has also developed a new test, magnetic resonance elastography, which can noninvasively detect early changes in your liver tissue.
Team approach. Mayo Clinic doctors trained in liver disease (hepatologists) work with specialists in infectious disease, transplantation and other specialties to care for people who have hepatitis C. Children with advanced liver disease are treated by a team of specialists, including pediatric hepatologists, at the Eugenio Litta Children's Hospital in Rochester, Minn.
Experience. Mayo Clinic specialists are experienced in managing the complex drug treatments for hepatitis C. If you need a liver transplant, Mayo Clinic's liver transplant program is one of the largest in the world.
New approaches. You have access to experimental treatments continually being studied by Mayo clinician researchers.
Good news - You have the easiest genotype of hep C to cure!!! You are very lucky.
"Last week I thought I was healthy, now I' m dying, and have hep c? "
- As I have said. You are NOT dying. If you were dying you would be deathly ill and hospitalized. It appears you don't have signs of advanced cirrhosis as you would have notice other problems. This is why I believe if you get proper medical help now you have a very good chance of curing your hep C and stopping further injury to your liver. Only very ill patients that have complications of cirrhosis can't treat their hep C. I assume you haven't vomited blood? Your abdomen does look like you are pregnant? Your skin hasn't turned yellow? Many people with cirrhosis treat their hepatitis C.
"this isn't my life, this is a mistake, how could I have hepatitis c for 30-40 years and not be aware? "
- This is what happens when we receive what we think is bad news. We can’t believe it. This happens to others not ME!
Unfortunately this happens because hepatitis C does not cause any outward signs of illness in most infected people.
"my doctor says I can't go back to work for at least three months! "
Treatment is for 6 months if you are treating with peg-interferon and ribavirin.
"made an appointment with a gastroenterologist, who I saw the next day. When I asked him what I could do, he said nothing other than a transplant." WHAT TREATMENT? WHO IS GOING TO TREAT YOU? You having cirrhosis should never treat with a primary care physician or even a gasto since you are so close to Mayo. You are risking treatment failure or worst. If you are worried about your life you with drive 50 miles to Mayo to get world class heath care rather than treating with a unqualified doctor. Remember without proper treatment cirrhosis can be fatal! Would you go to your primary doctor for surgery? Of course not. Neither should you have a primary doctor who knows little to nothing about cirrhosis and treating hepatitis C in a person with cirrhosis.
When a person has cirrhosis they realize this may be their last chance to stop the virus or they will need a liver transplant if they fail. There may be no second chance to cure your hepatitis C. Beside who want to be ill for 6 months and then fail treatment? Treatment in cirrhotics is not usually easy. You are likely to have anemia and other side effect that you will be dependent of your doctor to manage properly. Primary care and gastros are not trained and experienced in doing this.
Don't set yourself up for failure. Call Mayo on Monday and tell your doctor you want Mayo to treat you. You can use the drugs that are on order.
Good luck!
hector
Welcome to the forum.
Your reaction is normal. We were all shocked to discover we had Hep C.
Just because you have cirrhosis does not mean you cannot treat. There are many cirrhotics on this forum and many are treating currently or have already treated and been cured. Whether you can treat depends on how advanced your cirrhosis is.
Since you have cirrhosis you should be under the care of a Hepatologist (as the others have already pointed out). They are the doctors who will have the experience and knowledge needed to manage your care.
You live a long way from anywhere. You will probably have to go to Phoenix to see a Hepatologist. That may seem like a long distance, but this is your life and you want to get the best care possible and have the best treatment possible.
Here are three sites that list Hepatologists in the Phoenix area. It would be best if the Hepatologist that you see is affiliated with a treansplant center.
http://www.healthgrades.com/transplant-hepatology-directory/az-arizona/phoenix
http://www.vitals.com/specialists/hepatologists/arizona/phoenix
http://www.ucomparehealthcare.com/drs/arizona/hepatology/Phoenix.html
Best of luck.
Your reaction is normal. We were all shocked to discover we had Hep C.
Just because you have cirrhosis does not mean you cannot treat. There are many cirrhotics on this forum and many are treating currently or have already treated and been cured. Whether you can treat depends on how advanced your cirrhosis is.
Since you have cirrhosis you should be under the care of a Hepatologist (as the others have already pointed out). They are the doctors who will have the experience and knowledge needed to manage your care.
You live a long way from anywhere. You will probably have to go to Phoenix to see a Hepatologist. That may seem like a long distance, but this is your life and you want to get the best care possible and have the best treatment possible.
Here are three sites that list Hepatologists in the Phoenix area. It would be best if the Hepatologist that you see is affiliated with a treansplant center.
http://www.healthgrades.com/transplant-hepatology-directory/az-arizona/phoenix
http://www.vitals.com/specialists/hepatologists/arizona/phoenix
http://www.ucomparehealthcare.com/drs/arizona/hepatology/Phoenix.html
Best of luck.
Sadly your story is not so uncommon. Many of us with hep C haven't found out until the virus is very advanced.
There is no reason you cannot work with hep C.
There is a reason if you have advanced, actually called, decompensated cirrhosis.
You need to see an experienced hepatologist ( liver specialist). Your primary care physician doesn't have the training to help you with liver disease. A GI is better but still not does not have the extent of training as a hepatologist.
You should request the results of your biopsy sent to the hepatologist.
If you have beginning cirrhosis, you may be able to do hep C treatment. If it is decompensated, then yes, you may need a transplant. This is not a death sentence, shocking as it is.
For now, do not drink any alcohol. Eat organic and freshly prepared food as possible. Avoid red meat and keep your salt content low.
Continue to do whatever exercise you can. And continue to educate yourself about both hep C and cirrhosis.
I was diagnosed with decompensated cirrhosis, ESLD ( end stage liver disease) and like you, had thought I was healthy. My symptoms, I attributed to going through menopause.
In my case, the cirrhosis was severe.
I've had a transplant, got rid of the hep C and am doing fine but like you, I was so shocked.
I really and truly believed I was healthy for all those years.
Hang in there. You are far from alone.
There is no reason you cannot work with hep C.
There is a reason if you have advanced, actually called, decompensated cirrhosis.
You need to see an experienced hepatologist ( liver specialist). Your primary care physician doesn't have the training to help you with liver disease. A GI is better but still not does not have the extent of training as a hepatologist.
You should request the results of your biopsy sent to the hepatologist.
If you have beginning cirrhosis, you may be able to do hep C treatment. If it is decompensated, then yes, you may need a transplant. This is not a death sentence, shocking as it is.
For now, do not drink any alcohol. Eat organic and freshly prepared food as possible. Avoid red meat and keep your salt content low.
Continue to do whatever exercise you can. And continue to educate yourself about both hep C and cirrhosis.
I was diagnosed with decompensated cirrhosis, ESLD ( end stage liver disease) and like you, had thought I was healthy. My symptoms, I attributed to going through menopause.
In my case, the cirrhosis was severe.
I've had a transplant, got rid of the hep C and am doing fine but like you, I was so shocked.
I really and truly believed I was healthy for all those years.
Hang in there. You are far from alone.
Sounds like you need to find a new doctor. Being you were able to just have surgery and there was no concern by blood work done prior, plus no other signs tells me your liver is still well compensated. People can live along time with cirrhosis. I was DX back in early 2005 with cirrhosis. To be told you need to get your affairs in order is way jumping the gun. I also had Hep-C and treated twice and now I'm cured, still cirrhotic but doing fine... Was never told I could not work do to Hep-C or cirrhosis.
You are genotype 2, if one must have it thats the type to have as its the easiest to treat and have the best cure rates...... Please get a second opinion... Best to you and welcome to the forum.
You are genotype 2, if one must have it thats the type to have as its the easiest to treat and have the best cure rates...... Please get a second opinion... Best to you and welcome to the forum.
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