Aa
Just a little scared...
I am a thirty-eight year old Caucasian male. I was diagnosed with HCV genotype 1a 10 years ago. When I had a biopsy performed about seven years ago, the Gastro said that I would die from something, but not HCV. About three years ago I started having neck problems - two surgeries later - I am feeling a lot better. However during this time I spent a lot of time lying around and taking a WHOLE BUNCH of Vicodin (obviously not good for the liver). Last year my doc checked my levels and I was at 6 million and was told I had a fatty liver. I went to another Gastro that said there was really nothing he could do at this time with current treatments and to check back in a couple of years to see if there were any new treatments. About a month ago I started having pain in my right-side stomach, rib cage (right side), and right shoulder. It is mostly concentrated under the rib cage. I had sinus surgery two weeks ago and even Oxycontin 5mg did not ease the pain very much. I went to a new Gastro last week - he has done a blood panel and ultra sound and I am currently waiting for the results. I am just worried - the pain is very freighting. I have (of course) been surfing all the HCV sites and with the right shoulder pain I keep seeing liver cancer. I was just wondering if anyone else experiences this same pain and if it usually means that something serious is going on? Also, around the same time I noticed that my eyes have become extremely bloodshot. This might be due to the sinuses - however - I find it odd that it began the same time as the pain. I have also been wondering just what constitutes a clay stool? I have looked for pictures on the Web (gross, I know, but when you need to know...) but have not found anything that is helpful. I apologize that my first post here is lengthy and full of questions, but I am just trying to find some peace of mind. Thank you.
Talked to my Gatro's Tech. Said the CT was 'unremarkable'. Did not even show the fatty liver from last year. Not all blood work is back - but what they do have is 'normal'. However, pain is still there...
Thanks for the reply and I am truly sorry about your struggles. I am still waiting to hear back from the doc. It is nerve wracking but taking steps (posting here - talking to people - I bought a couple of books on HCV) seem to help a little. I am (as the post says) a little scared. I am getting married next month to a lady ten years younger than me who would like children of here own one day. I also have a five year old son from a previous marriage that means the world to me. I am just scared that I will not be around for a long time for them. I know I should have more faith, but I do not wish to put them through any hardships. As for now, I will pray and cross my fingers - let us all hope that the powers that be will find a suitable cure - and soon...
In answer to your questions - this is what I've learned or been told by my dr's. But remember, each person is different. Copyman is right - clay stools have to do with the bile ducts. Bile is what gives your stools it's color. When it is clay color there isn't enough bile in it when it goes into the intestines. It is not a good sign. It does not just happen during an early acute stage. I never had it until my liver became cirrhotic. I find that it isn't that color every day. Some days it is darker, but never what it used to be.
I've had Hep C - to the best of my knowledge from my young druggie days - for 35 years. I was actually diagnosed about 15 years ago and tried the treatment 11 years ago. I have seen a dr every 3 months since then, did blood work as needed etc. The past 5 years I have actually felt really good. But the walls were getting ready to tumbel down. I had a check up this past Nov 2 and I was okay. The dr did his tapping on me everywhere - said I was doing good and made my next 3 month office visit. One week later I started to blow up. Cirrhosis never even dawned on me. In two weeks I gained 20 pound of fluid and looked 9 months pregnant. Something pushed me over the top really fast. I now have 2 drs. The 2nd one said that on the average, cirrhosis will start setting in at about the 25 year mark and it takes about 10 years to reach ascites. That is the final stage and things don't look so hot after that unless I can get a transplant. If someone has a more recent infection they might not make it that many years unless they naturally have another 35 years or so.. Really old infections like mine are more apt to become cirrhotic - and old infections are harder to treat. Not impossible, but harder. Old infections usually have more illnesses that are be caused by Hep C because it does affect the immune system. Also we have had many more years of not knowing we are infected because nobody knew anything about it back then, so maybe we partied for more years or drank more. People with 1a and 1b are more apt to be in the 50 - 60 year age range and our bodies are in the starting to crap out stage anyway. We tend to be sicker than those that are younger and who have a higher number genotype.
Although there are many variables - and one of those is how well we take care of ourselves, those with stage 4 and a totally useless liver have a 50-50 2 yr prognosis. And a 20% chance of surviving 5-6 years. I wouldn't write this without having done a mountain of research. The possibility of liver cancer has to be monitered, and there are tumer marker tests - a blood test that lets you know how your alphofetoprotein numbers are that monitor that likelihood. Fortunately, only about 25% of people progress to that - if you can call 25% fortunate. The pain in your shoulder does not mean it is cancer. pluerisy (sp) is also a possibility with this disease.
It's best to keep a positive attitude and not to worry. I'm not saying that it isn't serious, but worrying won't change anything. Staying positive and being determined to do the best you can, and helping others through their hardship will make a difference. Making good causes will bring good effects - I guess that why it's called it karma. Have a wonderful day.
Sonni
I've had Hep C - to the best of my knowledge from my young druggie days - for 35 years. I was actually diagnosed about 15 years ago and tried the treatment 11 years ago. I have seen a dr every 3 months since then, did blood work as needed etc. The past 5 years I have actually felt really good. But the walls were getting ready to tumbel down. I had a check up this past Nov 2 and I was okay. The dr did his tapping on me everywhere - said I was doing good and made my next 3 month office visit. One week later I started to blow up. Cirrhosis never even dawned on me. In two weeks I gained 20 pound of fluid and looked 9 months pregnant. Something pushed me over the top really fast. I now have 2 drs. The 2nd one said that on the average, cirrhosis will start setting in at about the 25 year mark and it takes about 10 years to reach ascites. That is the final stage and things don't look so hot after that unless I can get a transplant. If someone has a more recent infection they might not make it that many years unless they naturally have another 35 years or so.. Really old infections like mine are more apt to become cirrhotic - and old infections are harder to treat. Not impossible, but harder. Old infections usually have more illnesses that are be caused by Hep C because it does affect the immune system. Also we have had many more years of not knowing we are infected because nobody knew anything about it back then, so maybe we partied for more years or drank more. People with 1a and 1b are more apt to be in the 50 - 60 year age range and our bodies are in the starting to crap out stage anyway. We tend to be sicker than those that are younger and who have a higher number genotype.
Although there are many variables - and one of those is how well we take care of ourselves, those with stage 4 and a totally useless liver have a 50-50 2 yr prognosis. And a 20% chance of surviving 5-6 years. I wouldn't write this without having done a mountain of research. The possibility of liver cancer has to be monitered, and there are tumer marker tests - a blood test that lets you know how your alphofetoprotein numbers are that monitor that likelihood. Fortunately, only about 25% of people progress to that - if you can call 25% fortunate. The pain in your shoulder does not mean it is cancer. pluerisy (sp) is also a possibility with this disease.
It's best to keep a positive attitude and not to worry. I'm not saying that it isn't serious, but worrying won't change anything. Staying positive and being determined to do the best you can, and helping others through their hardship will make a difference. Making good causes will bring good effects - I guess that why it's called it karma. Have a wonderful day.
Sonni
Before u can understand how negative ions affect the body you need to study this.
An ion is an atom or molecule where the total number of electrons is not equal to the total number of protons, giving it a net positive or negative electrical charge. An anion (pronounced /ˈænaɪən/; an-eye-on), from the Greek word ἀνά (ana), meaning 'up', is an ion with more electrons than protons, giving it a net negative charge (since electrons are negatively charged and protons are positively charged). Conversely, a cation (pronounced /ˈkætaɪən/; cat-eye-on), from the Greek word κατά (kata), meaning 'down', is an ion with more protons than electrons.
maybe u have to be smarter than the average mortal to understand science?
http://en.wikipedia.org/wiki/Ion
An ion is an atom or molecule where the total number of electrons is not equal to the total number of protons, giving it a net positive or negative electrical charge. An anion (pronounced /ˈænaɪən/; an-eye-on), from the Greek word ἀνά (ana), meaning 'up', is an ion with more electrons than protons, giving it a net negative charge (since electrons are negatively charged and protons are positively charged). Conversely, a cation (pronounced /ˈkætaɪən/; cat-eye-on), from the Greek word κατά (kata), meaning 'down', is an ion with more protons than electrons.
maybe u have to be smarter than the average mortal to understand science?
http://en.wikipedia.org/wiki/Ion
Always wondered what this word really meant
Word Origin & History
Caucasian
1807, from Caucasus Mountains, between the Black and Caspian seas; applied to the "white" race 1795 (in Ger.) by Ger. anthropologist Johann Blumenbach, because their supposed ancestral homeland lay there; since abandoned as a historical/anthropological term. Lit. meaning "resident or native of the Caucasus" is from 1843. The mountain range name is from Gk. kaukhasis, from Scythian kroy-khasis, lit. "(the mountain) ice-shining."
Word Origin & History
Caucasian
1807, from Caucasus Mountains, between the Black and Caspian seas; applied to the "white" race 1795 (in Ger.) by Ger. anthropologist Johann Blumenbach, because their supposed ancestral homeland lay there; since abandoned as a historical/anthropological term. Lit. meaning "resident or native of the Caucasus" is from 1843. The mountain range name is from Gk. kaukhasis, from Scythian kroy-khasis, lit. "(the mountain) ice-shining."
"Almost flipping out" or as you said a full blown panic attack is usually associated with anxiety and not HCV.
Many people experience anxiety or depression while undergoing treatment for hepatitis c but those who are not treating do not unless they have a previous history of anxiety disorder or depression.
An antidepressant or benzodiazepine can help control the anxiety which is probably due to the unknowns regarding your HCV prognosis.
Diamond_Lil
Many people experience anxiety or depression while undergoing treatment for hepatitis c but those who are not treating do not unless they have a previous history of anxiety disorder or depression.
An antidepressant or benzodiazepine can help control the anxiety which is probably due to the unknowns regarding your HCV prognosis.
Diamond_Lil
Thanks to everyone for the prompt and helpful replies! As of yet I have not heard back from the doc (I am guessing this is good news). But last night I had a full-blown panic attack. If my fiance had not been with me I think I would have completely flipped-out. I even spent the night at her house (in my career it was a bad idea) because I was so scared. Has anyone else experienced this? Is this a symptom of HCV or am I just worked up? I am hoping for a good report, but the waiting is torture...
I post more information than really needed because I'm new and have little idea what is most relevant (the good people here are teaching me.)
I'm American, though it never occurred to me to mention I'm a proud Simian.
I'm American, though it never occurred to me to mention I'm a proud Simian.
agree with NYG & FL. i think posting about being Caucasian is relavent when it comes to HCV. Sorry us americans upset you :-)
Have you ever had a biopsy at all? Maybe I read it wrong - I didn't see one but certainly that would be the way to tell, as James said the scan would show tumors and such growths but you'd need the biopsy to tell about inflammation and fibrosis.
Why are you not treating if the disease is becoming a problem on your life?
Why are you not treating if the disease is becoming a problem on your life?
if during your us scan anything terrible showed up you would have been told, the result is instant!
i suspect your liver is fatty / inflammed still which is not unusual it may be painfull because it is swollen and causing pain to other organs , i dont understand why you dont tx ?
i suspect your liver is fatty / inflammed still which is not unusual it may be painfull because it is swollen and causing pain to other organs , i dont understand why you dont tx ?
yes i know , but i meant in general too really you guys love to say it , lol.
36 yr old caucasian male!
36 yr old caucasian male!
slightly of topic but why do Americans feel the need to include the fact they are Caucasian,"
James I think it was because African Americans can have a harder time clearing perhaps - not quite sure. I don't usually say I'm Caucasian but it's because honestly I'm such a mutt I'm not ONLY Caucasian but it is one of the things I could put. I could probably check a whole lotta boxes if I knew more history than I arleady do!
;)
MW - get the biopsy done and you will know where you stand. Liver disease and it's damage is NOT a progressive thing. Meaning it can take 20 years to get to stage 3 but then only a year or two to get to stage 4 (cirrhosis). So definitely it needs to be watched.
Perhas the pain is something to do with the bypass procedure itself a lot of people with hep report IBS like complaints and that could be the area you describe easily enough.
James I think it was because African Americans can have a harder time clearing perhaps - not quite sure. I don't usually say I'm Caucasian but it's because honestly I'm such a mutt I'm not ONLY Caucasian but it is one of the things I could put. I could probably check a whole lotta boxes if I knew more history than I arleady do!
;)
MW - get the biopsy done and you will know where you stand. Liver disease and it's damage is NOT a progressive thing. Meaning it can take 20 years to get to stage 3 but then only a year or two to get to stage 4 (cirrhosis). So definitely it needs to be watched.
Perhas the pain is something to do with the bypass procedure itself a lot of people with hep report IBS like complaints and that could be the area you describe easily enough.
Hey Cracker...(:+)
Get another biopsy asap to ease your mind and get yourself to a meeting.
I suffered mentally for many years while continuing to "use" and had many of your same worries. Respect your body, have faith and be positive about treatment and God help you it works and you live a long healthy life.
Take Care,
N
Get another biopsy asap to ease your mind and get yourself to a meeting.
I suffered mentally for many years while continuing to "use" and had many of your same worries. Respect your body, have faith and be positive about treatment and God help you it works and you live a long healthy life.
Take Care,
N
I'm geno 1a also and have the same issues you described as far as pain. First diagnosed in the mid 80's before there even was a hep C. They called it non-A/B at the time. Been through three 48 week treatments over the years. First in a blind study at university of Miami when interferon was first tried....then with rib, then peg. Responded well then relapsed each time. I've had four biopsies and amazingly the last wasn't much different from the first. My point is.... live clean (no drinking etc) and you should indeed out live the beast. Maybe they will come up with something soon to help us with type 1a.
49 yo caucasian male!
49 yo caucasian male!
When it comes to treatment decisions and approaches things like race, gender, age, size, other conditions come into play. Comments to posters (like mw) and medical evaluations can be moderated by those aspects.
That pain you describe isn’t very well understood. We’re told the liver doesn’t have sensory nerves and that it can’t ‘feel’ pain; but many other HCV patients report it. It could be that the capsule of Glisson, the fibrous capsule that surrounds the liver is stretching or somehow being disturbed.
Thing is, too many patients who report this sort of pain or discomfort go on to discover they have little to no additional fibrosis; so isn’t necessarily predictive of further damage.
None of the other issues your report are necessarily suggestive of additional damage or worsening of condition either; you really need to continue to follow up with the new liver doc, and try not to worry so much.
Clay colored stool is stool that is lacking in bile salts; it is more likely to appear in HCV patients during the acute phase of the disease; this occurs during the initial six months of infection. Mention this to the GI doc, but I imagine he’ll wave it off.
The Oxycontin is an opioid, and while it comes with its own risks, doesn’t do much organic damage to organs; be sure to discuss this with the doc as well.
Best to you,
Bill
55 yo caucasian male :)
Thing is, too many patients who report this sort of pain or discomfort go on to discover they have little to no additional fibrosis; so isn’t necessarily predictive of further damage.
None of the other issues your report are necessarily suggestive of additional damage or worsening of condition either; you really need to continue to follow up with the new liver doc, and try not to worry so much.
Clay colored stool is stool that is lacking in bile salts; it is more likely to appear in HCV patients during the acute phase of the disease; this occurs during the initial six months of infection. Mention this to the GI doc, but I imagine he’ll wave it off.
The Oxycontin is an opioid, and while it comes with its own risks, doesn’t do much organic damage to organs; be sure to discuss this with the doc as well.
Best to you,
Bill
55 yo caucasian male :)
It is really scary not knowing what is going on and we always assume the worst. Although the web does have a lot of helpful information it also causes alot of anxiety with all the scenarios.
You are right in going to your Dr. There are current treatments available to treat your particular type of Hep c. And within the next year or two there are new drugs that are being added that greatly improve your chances of beating it, even if you are advanced.
I have the same Genotype as you (1a) and are still in treatment.
Try to take it one step at a time. A biopsy for you is probably a good idea, it's the best determination as to the condition of your liver and we all start there. Don't worry too much about viral load, although that is high, it fluctuates. Mine was around 5 million too.
Be persistent with your Dr. and ask a lot of questions. Try to find someone who specializes in this or a Hepatologist. It is a great relief to trust your Dr with the current knowledge.
This forum can be a tremendous help to you offering excellent advice, encouragement and support from people going through the same thing as you. Some better and some worse!
Best of luck to you. Keep asking questions.
V
42 year old caucasian female! (well actually pretty mixed, a little hispanic, native american, white.....:)
You are right in going to your Dr. There are current treatments available to treat your particular type of Hep c. And within the next year or two there are new drugs that are being added that greatly improve your chances of beating it, even if you are advanced.
I have the same Genotype as you (1a) and are still in treatment.
Try to take it one step at a time. A biopsy for you is probably a good idea, it's the best determination as to the condition of your liver and we all start there. Don't worry too much about viral load, although that is high, it fluctuates. Mine was around 5 million too.
Be persistent with your Dr. and ask a lot of questions. Try to find someone who specializes in this or a Hepatologist. It is a great relief to trust your Dr with the current knowledge.
This forum can be a tremendous help to you offering excellent advice, encouragement and support from people going through the same thing as you. Some better and some worse!
Best of luck to you. Keep asking questions.
V
42 year old caucasian female! (well actually pretty mixed, a little hispanic, native american, white.....:)
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