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Newly Diagnosed, Help!
Hi everyone. I was just diagnosed with Hep C about 3 weeks ago, and while I have found a ton of info online, I still have a lot of questions. First of all, I know I probably contracted this back when I was an intraveinous drug user for about a year. I've been clean for 5 years now, so I've probably had this infection for 5-6 years. I am very scared because I have had 2 children since then so I am afraid I could have passed it on to one or both of them. I know the chances of that are very slim, but it's still scary. And for some reason it's taking the lab FOREVER to send the results to our doctor. I recently received a copy of my bloodwork in the mail. My viral load is 13,890 which is apparently extremely low from what I have learned, however, I'm not sure if I should get my hopes up over it. The gastroenterologist I just started seeing didn't even bring it up, even though she was looking at the same info. She actually seemed to rush right through the appt so I'm thinking about going to someone new who will go over everything with me. I'm waiting to hear back about the other tests she ordered (I don't know my genotype yet). They did an ultrasound too, and I'm waiting for that result as well, although the US technician said everything looked pretty good. Anyways, here are my questions:
-If viral load doesn't directly correlate with liver damage, then what is the point of treatment to get the viral load down? Do undetectable levels NOT cause liver damage? (I'm thinking there's more to this that I don't know yet).
-What were your reactions to treatment? I'm starting Nursing school in September, and was planning on starting treatment after this semester ends in May. Do you think treatment will effect my abilities to do well in school and clinicals?
-Speaking of nursing, what do you think about someone with Hep C becoming a nurse? I have read mixed messages online, but my regular doctor said it's confidential and I don't need to tell anyone about it because the chances of me infecting someone are slim to none. However, the gastroenterologist told me that I need to tell people about it before starting the nursing program. I don't know who to listen to. What do YOU think? Usually people seem to instantly label Hep C patients as drug users, and although that IS how I contracted it, I am so beyond that now and I really don't want people to get the wrong idea about me. Most people I know now, especially those I go to school with, would be SHOCKED to find out I have Hep C/ever used drugs.
-My tests also indicated that my TIBC (iron binding capacity?) was high. I'm not really sure what that means. Can someone help me out? Is this normal for someone with Hep C?
-Also, does having Hep C affect your life expectancy? I know that's an awful question, but I am tired of hearing people sugarcoat this virus as though nothing bad will happen to me at all. I want to hear the truth. And by the way, I am very healthy, eat healthy, etc and was planning on living to be at LEAST 95! :) I'm 27 now.
Anyways, thanks in advance.
-If viral load doesn't directly correlate with liver damage, then what is the point of treatment to get the viral load down? Do undetectable levels NOT cause liver damage? (I'm thinking there's more to this that I don't know yet).
-What were your reactions to treatment? I'm starting Nursing school in September, and was planning on starting treatment after this semester ends in May. Do you think treatment will effect my abilities to do well in school and clinicals?
-Speaking of nursing, what do you think about someone with Hep C becoming a nurse? I have read mixed messages online, but my regular doctor said it's confidential and I don't need to tell anyone about it because the chances of me infecting someone are slim to none. However, the gastroenterologist told me that I need to tell people about it before starting the nursing program. I don't know who to listen to. What do YOU think? Usually people seem to instantly label Hep C patients as drug users, and although that IS how I contracted it, I am so beyond that now and I really don't want people to get the wrong idea about me. Most people I know now, especially those I go to school with, would be SHOCKED to find out I have Hep C/ever used drugs.
-My tests also indicated that my TIBC (iron binding capacity?) was high. I'm not really sure what that means. Can someone help me out? Is this normal for someone with Hep C?
-Also, does having Hep C affect your life expectancy? I know that's an awful question, but I am tired of hearing people sugarcoat this virus as though nothing bad will happen to me at all. I want to hear the truth. And by the way, I am very healthy, eat healthy, etc and was planning on living to be at LEAST 95! :) I'm 27 now.
Anyways, thanks in advance.
Thank you! I didn't even think to see a hepatologist. I just made an appointment with one. I'm hoping this person will be better than the lady who just rushed through the appointment.
Thank you for your response. You explained the purpose of treatment very well and now I know that this is definitely something I should do. And that website does have a lot of great info. I already did a lot of exploring on it already. Thank you.
You've found the right place to seek answers to all your questions.(bookmark or favorite this site,you'll love it).Believe me,you will have tons of questions as this is not a simple disease.
I'm sorry you have been diagnosed with HepC. The really important discussion comes after you get your test results.Share you're test results here if you want and there are people on here that can tell you what they mean.
You asked what the point of treatment is if it's just to get the viral load down..the real point of treatment is to kill the virus and be cured. HepC progresses slowly.You have age on your side and if you've only had it a few years you have that on your side too. It can affect life expectancy but that depends on a lot of things like liver damage but that usually takes many many years to happen. Most people with HepC will not die from it.
Everyone has different side effects from treatment...some mild to none,some moderate and some severe. Genotypes 1 & 4 are the harder ones to treat and usually treat for at least 48 months. Genotypes 2 & 3 are easier to cure and treat usually 24 weeks. Those weeks all vary depending how well you respond to treatment.
I don't see any problem with having this in the nursing field at all so I wouldn't worry about that.The only factor with that is how well you tolerate treatment IF and I repeat IF you need to treat now or choose to is because of the uncertanty of how you will feel during treatment. Many people are waiting for the new drugs that will be coming out in 2011 or 2012. Treating will depend on your test results and what you and the Dr decide.
It is also best to make sure you see a Dr who specializes in HepC like a Hepatologist.
Yes I bet you will live to see 95! The treatment & drugs are improving every day and like I said,you are young and have time & age on your side.
I'm sorry you have been diagnosed with HepC. The really important discussion comes after you get your test results.Share you're test results here if you want and there are people on here that can tell you what they mean.
You asked what the point of treatment is if it's just to get the viral load down..the real point of treatment is to kill the virus and be cured. HepC progresses slowly.You have age on your side and if you've only had it a few years you have that on your side too. It can affect life expectancy but that depends on a lot of things like liver damage but that usually takes many many years to happen. Most people with HepC will not die from it.
Everyone has different side effects from treatment...some mild to none,some moderate and some severe. Genotypes 1 & 4 are the harder ones to treat and usually treat for at least 48 months. Genotypes 2 & 3 are easier to cure and treat usually 24 weeks. Those weeks all vary depending how well you respond to treatment.
I don't see any problem with having this in the nursing field at all so I wouldn't worry about that.The only factor with that is how well you tolerate treatment IF and I repeat IF you need to treat now or choose to is because of the uncertanty of how you will feel during treatment. Many people are waiting for the new drugs that will be coming out in 2011 or 2012. Treating will depend on your test results and what you and the Dr decide.
It is also best to make sure you see a Dr who specializes in HepC like a Hepatologist.
Yes I bet you will live to see 95! The treatment & drugs are improving every day and like I said,you are young and have time & age on your side.
HI there, and welcome to the discussion group. You’re asking very good questions, and it sounds like you’ve done quite a bit of studying about the disease so far.
“-If viral load doesn't directly correlate with liver damage, then what is the point of treatment to get the viral load down? Do undetectable levels NOT cause liver damage? (I'm thinking there's more to this that I don't know yet).”
Agreed that viral load doesn’t *necessarily* correlate with disease severity, unlike Hep B and HIV, where management is all about viral load. Viral load isn’t important with HCV *until* treatment begins; at that time, it’s used as a barometer to response; we measure it periodically during treatment to see how efficacious the meds are, and to gauge response. If a person can become undetectable for virus during their treatment, and maintain that status after treatment for six months, then they are deemed ‘cured’; the term we use for that is ‘SVR’, or ‘Sustained Viral Response’. This means that the virus is gone, and will not return in over 99.5% of patients; this is synonymous with clinical cure.
Reactions to treatment vary widely, and it’s impossible to predict in advance as o how you might react. Anecdotal reports in here suggest that approximately 70% or so will continue to work throughout treatment, although some will require reduced schedules, etc. I was fortunate to become overly ill, however, fatigue was overpowering sometimes. Also, some mid-level depression showed itself from time to time. I didn’t work, but was able to walk/jog 4miles daily through much of treatment, and took classes at the local community college. Some do become quite ill, even to the point of not completing their assigned treatment.
We have doctors, even surgeons that are HCV positive in here that continue to practice; you are protected by federal law in terms of employment, although this might not apply in the real world. I myself wouldn’t disclose my HCV status to anyone at work unless absolutely necessary; perhaps someone with experience in the nursing field will comment with their own perspectives on this.
Many patients with HCV also experience iron storage problems; an iron studies panel should be performed prior to treatment to offer you your best chances of success. I’m unfamiliar with the intricacies of this subject; but you’re right, it can and should be addressed. To my knowledge, often phlebotomy can help with lowering serum iron levels; check with your doctor to see if something like this is indicated.
If you haven’t already, check out Janis and Friends:
http://janis7hepc.com/have_you_been_just_diagnosed.htm
And be sure to follow the links in the right-hand side of the page under ‘other HCV information’; there’s a wealth of data here. Bookmark this site for future reference.
Yes; HCV can affect your longevity; around 5% of patients will eventually succumb to the disease; it’s also the number one reason for liver transplants in the U.S. Not all will develop life-threatening conditions, but to date, we can’t tell in advance who will progress to this point.
Good luck, and take care—
Bill
“-If viral load doesn't directly correlate with liver damage, then what is the point of treatment to get the viral load down? Do undetectable levels NOT cause liver damage? (I'm thinking there's more to this that I don't know yet).”
Agreed that viral load doesn’t *necessarily* correlate with disease severity, unlike Hep B and HIV, where management is all about viral load. Viral load isn’t important with HCV *until* treatment begins; at that time, it’s used as a barometer to response; we measure it periodically during treatment to see how efficacious the meds are, and to gauge response. If a person can become undetectable for virus during their treatment, and maintain that status after treatment for six months, then they are deemed ‘cured’; the term we use for that is ‘SVR’, or ‘Sustained Viral Response’. This means that the virus is gone, and will not return in over 99.5% of patients; this is synonymous with clinical cure.
Reactions to treatment vary widely, and it’s impossible to predict in advance as o how you might react. Anecdotal reports in here suggest that approximately 70% or so will continue to work throughout treatment, although some will require reduced schedules, etc. I was fortunate to become overly ill, however, fatigue was overpowering sometimes. Also, some mid-level depression showed itself from time to time. I didn’t work, but was able to walk/jog 4miles daily through much of treatment, and took classes at the local community college. Some do become quite ill, even to the point of not completing their assigned treatment.
We have doctors, even surgeons that are HCV positive in here that continue to practice; you are protected by federal law in terms of employment, although this might not apply in the real world. I myself wouldn’t disclose my HCV status to anyone at work unless absolutely necessary; perhaps someone with experience in the nursing field will comment with their own perspectives on this.
Many patients with HCV also experience iron storage problems; an iron studies panel should be performed prior to treatment to offer you your best chances of success. I’m unfamiliar with the intricacies of this subject; but you’re right, it can and should be addressed. To my knowledge, often phlebotomy can help with lowering serum iron levels; check with your doctor to see if something like this is indicated.
If you haven’t already, check out Janis and Friends:
http://janis7hepc.com/have_you_been_just_diagnosed.htm
And be sure to follow the links in the right-hand side of the page under ‘other HCV information’; there’s a wealth of data here. Bookmark this site for future reference.
Yes; HCV can affect your longevity; around 5% of patients will eventually succumb to the disease; it’s also the number one reason for liver transplants in the U.S. Not all will develop life-threatening conditions, but to date, we can’t tell in advance who will progress to this point.
Good luck, and take care—
Bill
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