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How long do i have to live?
I was diagnosed 2 years with HepC. At that point i had been infected with it for 23 years. Although my (since retired) doctor tried to rush me into treatment, i hesitated. They discovered the HepC through a finding of low blood platelets on a CBC, which i had been having approximately every 2 years with no previously problems. A cat scan showed fatty liver. Except for exhaustion - which was attributed to Fibromyalgia - i had no symptoms. My most recent CBC showed a dramatic drop in platelets, to 30,000. I do have a history of alcohol abuse, and i cannot say i completely quit drinking after the initial diagnosis, but i have dramatically cut back to only a few drinks on rare occasions, mostly family reunions. I was told that 30,000 blood platelets means that i have progressed to cirrhosis, from fibrosis. My new doctor is not very good, but i made my own appt. with a hematologist. I want to know how long i have to live. P.S. I had a cat scan with dye 2 years ago and it showed a fatty liver with mild fibrosis. At that time my platelets were in the 60,000 to 70,000 range. Please, any information would be appreciated!
I think the confusion here is you can not get a "Liver Transplant" if you have not abstained from alcohol for 6 months. By law we can not be denied Tx if it will sustain life. The exception is transplant, as livers are so scarce and should not be given to someone that's going to abuse the gift of life.
The Drs still have to abide by the "Standard of Care", and will treat those with the Hep C virus even if they drink. The choice is really up to the individual.
MarieLyn none of us have answers as to how long we have to live. Should we care to live a long life we need to address any issues that shorten our life span. In your situation, yes liver disease can progress with remarkable speed if we don't eat healthy, continue to drink, not exercise, ect. On the other hand we can to a certain degree determine our destiny. I think you have been given a wake-up call and yes, its very scary. I say this with understanding and compassion as it happened to me. The most important step is how to proceed.
You need to find a good hepatologist and as Pooh stated one who is involved in a teaching hospital or University Medical Center. There they will perform various tests to determine your level of liver disease. At this time it's quite clear that you need to treat your Hep C, and not drink alcohol. It is very possible if you do those two things you may be able to reverse the damage done. This is not the end of the road for you. It's time tho to become proactive in regards to your health before further damage is done. Should you decide to start Tx and clear you may live to be 100, who knows. If it were me I would not delay, as everyday the virus (and alcohol) are creating more damage.
Please know that we are here to help you as many of us came on this site also not sure what our future would hold. It's up to you to get started and we can then guide you thru the process.
Take care
....Kim.
The Drs still have to abide by the "Standard of Care", and will treat those with the Hep C virus even if they drink. The choice is really up to the individual.
MarieLyn none of us have answers as to how long we have to live. Should we care to live a long life we need to address any issues that shorten our life span. In your situation, yes liver disease can progress with remarkable speed if we don't eat healthy, continue to drink, not exercise, ect. On the other hand we can to a certain degree determine our destiny. I think you have been given a wake-up call and yes, its very scary. I say this with understanding and compassion as it happened to me. The most important step is how to proceed.
You need to find a good hepatologist and as Pooh stated one who is involved in a teaching hospital or University Medical Center. There they will perform various tests to determine your level of liver disease. At this time it's quite clear that you need to treat your Hep C, and not drink alcohol. It is very possible if you do those two things you may be able to reverse the damage done. This is not the end of the road for you. It's time tho to become proactive in regards to your health before further damage is done. Should you decide to start Tx and clear you may live to be 100, who knows. If it were me I would not delay, as everyday the virus (and alcohol) are creating more damage.
Please know that we are here to help you as many of us came on this site also not sure what our future would hold. It's up to you to get started and we can then guide you thru the process.
Take care
....Kim.
"This is the final criteria they came up with."
Why? Prior studies have shown moderate drinking while treating has no outcome when it came to SVR rates. Are you saying it is different with S/O? I sure haven't read where it does.
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"I would have been declined for tx if I were an active drinker for sure."
I would have found a new doctor then.
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It seems pretty clear the OP Might be cirrhotic and it is also well known drinking and Hep C is not a good ideal but to say you must wait 6 months could be dangerous. It would serve her best to get into a Hepatologist ASAP.
I can understand why they wouldn't do a TP on an active drinker for obvious reasons. But to refuse treatment just isn't right.
Why? Prior studies have shown moderate drinking while treating has no outcome when it came to SVR rates. Are you saying it is different with S/O? I sure haven't read where it does.
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"I would have been declined for tx if I were an active drinker for sure."
I would have found a new doctor then.
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It seems pretty clear the OP Might be cirrhotic and it is also well known drinking and Hep C is not a good ideal but to say you must wait 6 months could be dangerous. It would serve her best to get into a Hepatologist ASAP.
I can understand why they wouldn't do a TP on an active drinker for obvious reasons. But to refuse treatment just isn't right.
I went to all day meetings for the new S/O tx with the 'powers that be' to figure out the current for criteria in the medical field. All the pharmacists and doctors as well as Ins company people were in the "standing room only" meeting. I'm am part of a group that advocates for treatment and testing awareness. This is the final criteria they came up with. It's a long story but that's it in a nutshell. I don't just use forums. I attend meetings with lobbyists. Bear in mind this is an Insurance criteria as well as Gastro and Hepatologist docs who spoke to the panel. And most docs don't want to have patients who drink. That's the first thing they tell you as a new patient. I am an active advocate. It IS true. I didn't read it on the web or in a book. I am trying to give her a heads up so she can prepare the best outcome.
I would have been declined for tx if I were an active drinker for sure.
I don't advocate coffee and lots of people here do. Where that info comes from is very questionable. But I don't say anything about that because I don't really know. I only speak about what I know.
Have you treated with S/O?
I would have been declined for tx if I were an active drinker for sure.
I don't advocate coffee and lots of people here do. Where that info comes from is very questionable. But I don't say anything about that because I don't really know. I only speak about what I know.
Have you treated with S/O?
Look, do the treatment asap! I was absolutely fine and in months developed cirrhosis and portal hypertension while I debated the treatment! Huge mistake! Had i done sovaldi & olyssio sooner I would not be frantically trying to figure out how to take care of a new disease! Cirrhosis! I went from inflamed with a tiny bit of fibrosis to full out trouble, horrific symptoms everthing, just in months!
I did the treatment and a day ago I am now hep c free...however, now I have to deal with diet and all kinds of symptoms I had thought were the virus only! Nope. So the best plan is get rid of the virus ASAP, before you inherent a whole new disease with the same deadly consequences!
Check out the toolkit on what you do NOT want!
Best, dbz
www.med.umich.edu/1libr/hepatology/CirrhosisToolkit.pdf
Ps. Go see a liver doctor who can get you funded to do the experimental drugs! Even if it means another city! Please?
I did the treatment and a day ago I am now hep c free...however, now I have to deal with diet and all kinds of symptoms I had thought were the virus only! Nope. So the best plan is get rid of the virus ASAP, before you inherent a whole new disease with the same deadly consequences!
Check out the toolkit on what you do NOT want!
Best, dbz
www.med.umich.edu/1libr/hepatology/CirrhosisToolkit.pdf
Ps. Go see a liver doctor who can get you funded to do the experimental drugs! Even if it means another city! Please?
"PS-in order to get tx you have be off of drinking for at least 6 months. "
"PPSS-docs won't give you the attention you need if they discover you are drinking-they don't have time to fool with patients who don't care for themselves. They'll just shine you on and treat you like you are a pest."
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Where did you hear that? It is not true.
Yes, obviously it is better if a person is not drinking when they have Hepatitis C. Yes, it is best if a person is not drinking when they are on treatment. However, there is no hard and fast rule that a person has to have abstained from alcohol for 6 months prior to starting treatment.
There may be a few doctors out there who do not want to treat actively drinking patients, but there is no hard and fast rule, and most doctors will treat patients whether they have had a recent drink or have abstained from alcohol for 6 months.
"PPSS-docs won't give you the attention you need if they discover you are drinking-they don't have time to fool with patients who don't care for themselves. They'll just shine you on and treat you like you are a pest."
------------------------------------------
Where did you hear that? It is not true.
Yes, obviously it is better if a person is not drinking when they have Hepatitis C. Yes, it is best if a person is not drinking when they are on treatment. However, there is no hard and fast rule that a person has to have abstained from alcohol for 6 months prior to starting treatment.
There may be a few doctors out there who do not want to treat actively drinking patients, but there is no hard and fast rule, and most doctors will treat patients whether they have had a recent drink or have abstained from alcohol for 6 months.
PPSS-docs won't give you the attention you need if they discover you are drinking-they don't have time to fool with patients who don't care for themselves. They'll just shine you on and treat you like you are a pest. The tests will show the progression and not give you an accurate lab read-out while drinking.
Docs want patients who are pro-active in their own care i.e. diet etc.
One day at a time. This is nothing to fool with. It's time to put the bottle away for good.
When I say bleed-out, I mean bleeding profusely from the rear-end, nose, and throwing up buckets of blood. Blood everywhere. It only takes minutes to die with that amount of blood loss. Just a FYI.
Docs want patients who are pro-active in their own care i.e. diet etc.
One day at a time. This is nothing to fool with. It's time to put the bottle away for good.
When I say bleed-out, I mean bleeding profusely from the rear-end, nose, and throwing up buckets of blood. Blood everywhere. It only takes minutes to die with that amount of blood loss. Just a FYI.
PS-in order to get tx you have be off of drinking for at least 6 months. So get your labs, ultrasound, endoscopies, and fibroscan to get answers to what stage your are, your MELD and what Genotype you are while you abstain from drinking. In 6 months of no drinking you may be able to get tx. You don't need biopsies or cat scans. The above tests will reveal it all.
I agree the incompetence is rampant and applaud you in abstaining from all alcohol from here on out. Patients anymore have to be pro-active in their health treatment. Ask lots of questions. If they don't know the answer tell them to call you back with it. Get labs and ultrasound ordered. Be pro-active in requesting these. You've got to put up a fight or you will end up waiting for them to do something of which they will not. Seek out a second opinion. There must be other gastroenterologists in your area.
Yes alcohoI can speed up cirrhosis. I have low platelets and am doing tx (S/O). It doesn't affect it. I've had several bleed-outs and landed in ICU but it doesn't affect anything. I figure it's what my liver can handle now-low platelets. The last time I had a bleed out I almost didn't make it (last July-6 days in ICU)
Remember this: The squeaky wheel gets the grease.
So take the lead and let the docs know what you need. Order labs etc.
Yes alcohoI can speed up cirrhosis. I have low platelets and am doing tx (S/O). It doesn't affect it. I've had several bleed-outs and landed in ICU but it doesn't affect anything. I figure it's what my liver can handle now-low platelets. The last time I had a bleed out I almost didn't make it (last July-6 days in ICU)
Remember this: The squeaky wheel gets the grease.
So take the lead and let the docs know what you need. Order labs etc.
Sorry to see you so stressed and afraid. You truly need more facts at your disposal. I agree with Pooh and Jack. Knowing what stage of fibrosis you are will allay many of your fears and enable you to plan. There are noninvasive measures such as FibroSure and FibroScan and then there is the trusty old liver biopsy. I had a biopsy and the FibroSure and the results were consistent with one another.
A Gastro might be able to help you but if it is possible I strongly encourage you to see a Hepatologist. The virus is getting easier to treat with shorter treatment durations and less harsh side effects which means it less likely a Gastro who does not routinely treat HCV to mess things up.
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Hopefully the forum members who used to drink too much will post. I am a recovering alcoholic and it took a long time (months and months) for my labs to look like a normal person. This is before I was diagnosed with HCV (which was 2003).
In other words there is no telling whether you see a rebound in your platelets. It could be due to drinking to excess for an extended period or from fibrosis or a combination of the two.
(From : The Hematological Complications of Alcoholism)
http://pubs.niaaa.nih.gov/publications/arh21-1/42.pdf
As has been said on here drinking while you have Hepatitis C is like throwing fuel on to a fire. I hope and pray you can abstain while the virus is active. It is the one of the best things you can do for yourself right now
A Gastro might be able to help you but if it is possible I strongly encourage you to see a Hepatologist. The virus is getting easier to treat with shorter treatment durations and less harsh side effects which means it less likely a Gastro who does not routinely treat HCV to mess things up.
__________________________________
Hopefully the forum members who used to drink too much will post. I am a recovering alcoholic and it took a long time (months and months) for my labs to look like a normal person. This is before I was diagnosed with HCV (which was 2003).
In other words there is no telling whether you see a rebound in your platelets. It could be due to drinking to excess for an extended period or from fibrosis or a combination of the two.
(From : The Hematological Complications of Alcoholism)
http://pubs.niaaa.nih.gov/publications/arh21-1/42.pdf
As has been said on here drinking while you have Hepatitis C is like throwing fuel on to a fire. I hope and pray you can abstain while the virus is active. It is the one of the best things you can do for yourself right now
Thank you very much for the responses. i feel more hopeful now. So when my doctor said he saw mild fibrosis, I now know he actually saw cirrhosis. I will make an appt. with the blood specialist as soon as possible this week as a first step. I was going to see a gastroentologist who works in my PCD's clinic, but will make an appt. to see a Hepatologist instead. With a few lapses, i actually had stopped drinking, and will continue to abstain.
Thanks again very much for this information. I feel so much less anxiety now.
Thanks again very much for this information. I feel so much less anxiety now.
You need to make an appointment with a Hepatologist (liver doctor), preferably one who is affiliated with a large teaching or university medical center. A Hepatologist will be knowledgeable concerning Hepatitis C, Cirrhosis, and treatment for both and will be competent to manage your care.
A CAT scan will show the nodules from Cirrhosis but it cannot determine the stage of fibrosis until it reaches the Cirrhosis stage. So, a CAT scan cannot tell you if you have no fibrosis, mild fibrosis, or moderate fibrosis. It can only tell you whether you have Cirrhosis or not, and that is only if it picks up the nodules caused by the scar tissue of the Cirrhosis.
No one can tell you how long you have to live. You need to see a Hepatologist and get treated and cured of Hep C. Getting cured may cause some of your symptoms to disappear or, at least, improve.Plus, your liver will not be further damaged.
Many people on this forum have Cirrhosis and many of them are doing very well. Others have had complications, but with good care, they are doing fairly well too. Still others have had liver transplants and they are now doing well after their transplants.
Best of luck.
A CAT scan will show the nodules from Cirrhosis but it cannot determine the stage of fibrosis until it reaches the Cirrhosis stage. So, a CAT scan cannot tell you if you have no fibrosis, mild fibrosis, or moderate fibrosis. It can only tell you whether you have Cirrhosis or not, and that is only if it picks up the nodules caused by the scar tissue of the Cirrhosis.
No one can tell you how long you have to live. You need to see a Hepatologist and get treated and cured of Hep C. Getting cured may cause some of your symptoms to disappear or, at least, improve.Plus, your liver will not be further damaged.
Many people on this forum have Cirrhosis and many of them are doing very well. Others have had complications, but with good care, they are doing fairly well too. Still others have had liver transplants and they are now doing well after their transplants.
Best of luck.
Low platelets can be caused by drinking too much. I've had Hep C for around 40 years and cirrhosis for at least two years, probably more, and I am just fine. I have read that you can live for 20 years with cirrhosis, but the problem is not so much how long you will live but, for me anyway, more about what will my quality of life be. Keep drinking with Hep C and you will probably get cirrhosis. Maybe not, but I would not want to risk it to tell you the truth. Hep C is a lousy way to die.
I'm sorry if that came off a bit snotty. I'm just very afraid. I've been going thru hell with a new doctor who seems to fit the "out of sight, out of mind" mentality, which is so different from my retired doctor who i saw for 20 years and would be right on top of things re: giving me a reference for the hematologist. It will probably be 3 weeks at least until i see her, and i guess i am wondering if such low platelets always mean cirrhosis. I last drank in April, and had 3 glasses of wine at a family members funeral celebration 3 weeks ago. I am bewildered as to how the HepC virus could have progressed so quickly.
My current doctor is more like a doctor-in-training, even thought she's not a resident. I had to make the appt. with the hematologist, and since she "forgot" to give me a reference after telling me the results were "concerning" and i HAD to see one. WHEN she gets her incompetent secretary to actually send the records over, which is signed releases for, i hope to see one in a week or two. I read on this forum that extremely low platelets are a sign of cirrhosis. Of course i don't want to put my liver through drinking only rarely and i have made a commitment to stop with the help of the SMART recovery program. I'm just really afraid that with such low platelets there's really no hope for me. They can't even start treatment or do a biopsy because of bleeding concerns.
Try asking your doctor this question. No one knows when their time is up.
And do you really want to put your liver through hell with drinking even rarely? A good diet is key.
And do you really want to put your liver through hell with drinking even rarely? A good diet is key.
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