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Biopsy Results Need Help With Cirrhosis Patients
Hello I was hoping I could get some answers from the great people on this forum.. I went for a endoscopy and my Dr. said that aside from the hep c he didnt see anything that concerned him. I continued to have pain so he sent me for a cat scan of my upper and lower abdomen. Again. he said that he didnt see anything and that all looked well with the exception of the hep c.. I complained and he sent me for a biopsy. The results now are cirrhosis. This all happened in 30 days. My Question is this. Was it proffesional or possible to not see the cirrhosis during the endoscopy or in the ct scan films ? How could he have missed it ? I have 2 children ages 9 and 4. Is it possible for a person to fight and make it several years with this disease ? I am a single Dad and so worried about my precious kids. Please help.....
Floyd,
I am very sorry to hear about you having cirrhosis. I know it is a shock. I don’t ever think I will forget when I heard those words from my doc. I was stunned. It felt unreal. I remember thinking I was going to die soon. What you are feeling is normal. There are a number of us here in different phases of cirrhosis, so don’t feel alone. We try to help each other and we will gladly offer any help based on our experience living with cirrhosis that we can.
Your story again proves the point of the importance of a biopsy. A biopsy is the only way to know the status of one's liver disease. Not blood tests, scans or anything else.
If your doc didn't see signs of cirrhosis when he did the endoscopy this is good.
This means you don’t have esophageal varices. The varices appear when your liver becomes so scared that the blood is unable to flow the liver and has to find another path to flow back to your heart. So it appears that your cirrhosis hasn't advanced to far along. So what I can tell from the information you provided you most likely are at the beginning stage of cirrhosis. Compensated cirrhosis. This is good news. Most people with cirrhosis can stay compensated for many years. Of course you will want to take care not to do anything that would stress or injure your liver. No alcohol, limit yourself to Tylenol if you need a pain killer, get protected from Hep A & B, get flu shots etc. You doc should tell you all of this. Plus you will want to have an AFP blood level and liver scan every 6 months to monitor for HHC liver cancer.
Please post any results and we will help you understand what they mean.
Also I agree with the other posters, since you have HCV and cirrhrosis you need an experinced hepatologist. Many if not mmost gastroenterologists don't have the experience to treat you. I would recommend getting a referral by your doc to one of the big hospitals that do liver transplants in Nashville. They have the most experienced hepatologist who work daily with people with cirrhosis. Vanderbuilt looks like the best. It is where Steve Jobs had his liver transplant. If it is good enough for Steve, a billionaire, it should be pretty good.
http://www.vanderbilthealth.com/transplant/28189
You and your doc will want to think about what you can do to stop your liver disease from advancing. Treatment. I think you may know that current treatment success rates for cirrhotics is quite low. But it may be worth a shot. When the new STAT-C drugs come out the odds will greatly improve. From what I’ve seen in the latest trials for Telaprevir maybe 40%. This is a very personal choice. There are pros and cons either way. But you need time come to terms with your diagnosis first.
Try to stay as calm as you can. Easy for me to say. It is not the end of the world. Not by a long shot. You still have a number of options for treatment and if all else fails a liver transplant.
Hold on and keep posting. You are not alone in this.
There are a lot of great people hear willing to help.
Hectorsf
I am very sorry to hear about you having cirrhosis. I know it is a shock. I don’t ever think I will forget when I heard those words from my doc. I was stunned. It felt unreal. I remember thinking I was going to die soon. What you are feeling is normal. There are a number of us here in different phases of cirrhosis, so don’t feel alone. We try to help each other and we will gladly offer any help based on our experience living with cirrhosis that we can.
Your story again proves the point of the importance of a biopsy. A biopsy is the only way to know the status of one's liver disease. Not blood tests, scans or anything else.
If your doc didn't see signs of cirrhosis when he did the endoscopy this is good.
This means you don’t have esophageal varices. The varices appear when your liver becomes so scared that the blood is unable to flow the liver and has to find another path to flow back to your heart. So it appears that your cirrhosis hasn't advanced to far along. So what I can tell from the information you provided you most likely are at the beginning stage of cirrhosis. Compensated cirrhosis. This is good news. Most people with cirrhosis can stay compensated for many years. Of course you will want to take care not to do anything that would stress or injure your liver. No alcohol, limit yourself to Tylenol if you need a pain killer, get protected from Hep A & B, get flu shots etc. You doc should tell you all of this. Plus you will want to have an AFP blood level and liver scan every 6 months to monitor for HHC liver cancer.
Please post any results and we will help you understand what they mean.
Also I agree with the other posters, since you have HCV and cirrhrosis you need an experinced hepatologist. Many if not mmost gastroenterologists don't have the experience to treat you. I would recommend getting a referral by your doc to one of the big hospitals that do liver transplants in Nashville. They have the most experienced hepatologist who work daily with people with cirrhosis. Vanderbuilt looks like the best. It is where Steve Jobs had his liver transplant. If it is good enough for Steve, a billionaire, it should be pretty good.
http://www.vanderbilthealth.com/transplant/28189
You and your doc will want to think about what you can do to stop your liver disease from advancing. Treatment. I think you may know that current treatment success rates for cirrhotics is quite low. But it may be worth a shot. When the new STAT-C drugs come out the odds will greatly improve. From what I’ve seen in the latest trials for Telaprevir maybe 40%. This is a very personal choice. There are pros and cons either way. But you need time come to terms with your diagnosis first.
Try to stay as calm as you can. Easy for me to say. It is not the end of the world. Not by a long shot. You still have a number of options for treatment and if all else fails a liver transplant.
Hold on and keep posting. You are not alone in this.
There are a lot of great people hear willing to help.
Hectorsf
Hi,
As mentioned above, neither the EGD nor the CT scan are definitive for cirrhosis, although sometimes it can be apparent with those procedures. If you are in early stages of cirrhosis, and haven’t developed regenerative nodularity of the liver or esophageal varices, then it really might not have been evident to the clinician.
I agree with others that more info is required; when will you discuss the pathology results with your GI doc? He should be able to develop a game plan shortly. Hopefully, you’ll be eligible for HCV therapy, and can begin to manage all of this soon.
He will also guide you in terms of diet and medications; he might suggest something to manage blood pressure, possible sodium restriction, etc.
Be sure to request copies of your labs and procedures from here on out, and begin a medical file; this helps you communicate effectively not only in here, but with other specialists as well down the road.
Good luck, and keep in touch—
--Bill
As mentioned above, neither the EGD nor the CT scan are definitive for cirrhosis, although sometimes it can be apparent with those procedures. If you are in early stages of cirrhosis, and haven’t developed regenerative nodularity of the liver or esophageal varices, then it really might not have been evident to the clinician.
I agree with others that more info is required; when will you discuss the pathology results with your GI doc? He should be able to develop a game plan shortly. Hopefully, you’ll be eligible for HCV therapy, and can begin to manage all of this soon.
He will also guide you in terms of diet and medications; he might suggest something to manage blood pressure, possible sodium restriction, etc.
Be sure to request copies of your labs and procedures from here on out, and begin a medical file; this helps you communicate effectively not only in here, but with other specialists as well down the road.
Good luck, and keep in touch—
--Bill
Call that doctor and get a copy of your biopsy results. Post them here so we can see them, then we can help you better. There are all different stages and grades that need to be considered when making decisions about what to do next, and how you will survive this. I understand your concern about your children, I shared those fears too. You have to take charge of your care and don't just sit back and wait on the doctor to take care of you, being passive now is VERY detrimental to your future.
I had to find a new doctor because I didn't feel that the one I had would be there for me when I needed him while on treatment, and I am SO GLAD that I did. You need to do some research to find a doctor who treats hep c patients specifically. I found mine by Googling hepatology and gastroenterology, and then I checked out all the doctors that came up till I liked what I read... like the fact that they are involved with drug trials... that was a great hint as to how well educated they are on the newest advances. You will probably have to travel a ways, depending on where you live, but traveling for an hour to a doctor who takes good care of you is much better than traveling 15 minutes to someone who could care less about what you are going through and only wants the all mighty dollar.
Do a lot of reading, learn as much as you can about this disease. Ask any questions here you want. We are all here for each other, to get through this battle to save our health.
Diane
I had to find a new doctor because I didn't feel that the one I had would be there for me when I needed him while on treatment, and I am SO GLAD that I did. You need to do some research to find a doctor who treats hep c patients specifically. I found mine by Googling hepatology and gastroenterology, and then I checked out all the doctors that came up till I liked what I read... like the fact that they are involved with drug trials... that was a great hint as to how well educated they are on the newest advances. You will probably have to travel a ways, depending on where you live, but traveling for an hour to a doctor who takes good care of you is much better than traveling 15 minutes to someone who could care less about what you are going through and only wants the all mighty dollar.
Do a lot of reading, learn as much as you can about this disease. Ask any questions here you want. We are all here for each other, to get through this battle to save our health.
Diane
Hi Floyd,
Hang in there. It's always a shock at first, but as the other posters have mentioned, even with liver damage, there are many who live full lives. The key at this point is education, and followup.
In the meantime, ask lots of questions. Most of us here have Hep C, and there are many, many folks who HAVE BEATEN IT, including those with cirroh.
Good luck, keep us posted bro.
Robert
Hang in there. It's always a shock at first, but as the other posters have mentioned, even with liver damage, there are many who live full lives. The key at this point is education, and followup.
In the meantime, ask lots of questions. Most of us here have Hep C, and there are many, many folks who HAVE BEATEN IT, including those with cirroh.
Good luck, keep us posted bro.
Robert
Personally I think a good hepatologist would only stage your liver disease with a biopsy unless they suspected your disease was too advanced to safely have a biopsy. I think your doc should have done a biopsy to begin with. I would find one that has more experience with HCV. Is your doctor a Hepatologist or a GI who is truly and expert in diagnosing and treating HCV?
You have need to have the blood work and that FLGuy suggested if you have not had it already to determine the next step. If your doctor has not yet Genotyped you or determined your viral load, I would truly consider finding another Doc.
Many have beaten this disease even with advanced liver damage. You can get a lot of help here.
Take Care - Dave
You have need to have the blood work and that FLGuy suggested if you have not had it already to determine the next step. If your doctor has not yet Genotyped you or determined your viral load, I would truly consider finding another Doc.
Many have beaten this disease even with advanced liver damage. You can get a lot of help here.
Take Care - Dave
The biopsy was the eventual test to determine liver condition; not the scope or scan. But, additional blood tests might have been hints that all was not right with the liver. The point where you are is where you need to be if you know the gentotype, viral load, biopsy result, other blood results and have an understaning of your universe (work, kid care, insurance etc.). Just requires thought and some decisions now.
Many people have successfully treated with cirrhosis. It's possible that remnents of cirrhosis and fibrosis can be repaired, over time, as the result of successful treatment.
Many people have successfully treated with cirrhosis. It's possible that remnents of cirrhosis and fibrosis can be repaired, over time, as the result of successful treatment.
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