Hepatitis C diagnosis, how to help?
July 17, 2009 5:50 AM Subscribe
A friend has been diagnosed with Hepatitis C. How can I help?
My friend N. had an STD screen and blood panel done, and the results came back positive for Hepatitis C. I'm not sure which test it was - the antibody test, I think; she's got to schedule another one, I assume to figure out whether the virus is active or not.
N. is, as mentioned, female. Late twenties. American. Social drinker, nonsmoker, not a drug user. She did have surgery done (gallbladder removal) about three years ago, and there were blood tests done before that, but I'm not sure what they tested for. Finding the results there are on the to-do list. N. also has two tattoos; the most recent one was seven or eight years ago.
Her doctor told her the test result over the phone (which - I thought they had to tell you in person?) and then gave her the name of a.. gastroenterologist, I think, to take over from here for all the other tests and things. The MD who did the test isn't particularly helpful; no explanations or even a pamphlet, just gave her the result and a name of someone else to see. N. doesn't feel comfortable talking to that doctor about anything, even for advice, so that's not a way to learn more.
N. is pretty freaked out at this point, and I am trying not to be. N. doesn't have much support around either; she's got me and one elderly relative in this state, and the rest of her family is a 16-hour drive away.
I want to be helpful, but I don't know how. I've hit up Google, Wikipedia, WebMD, etc, and while facts are useful, I don't have a living-with-it knowledge of this disease, as I've never (until now) known anyone who has it.
So - those of you who have this, or know someone who has it - please deluge me with advice. What sort of things should be looked into, or looked out for, or made note of? What's the stuff you wish everyone knew about Hepatitis C? Pointers for explaining this sort of thing to previous sexual partners? Are there support groups or other methods of help available? N. is home-help for the aforementioned elderly relative, who isn't in the best health; is that something to worry about?
And for me, what are the things that friends/support-type people ought to do for people who have this?
(I realize that Metafilter is not her doctor -- N. will be consulting one ASAP. I'm just hoping the hivemind can help me get a handle on this. And I apologize for how scattered this question is - I don't have anyone to ask about this. She's asked me to keep quiet about it for now, although she's okay with me posting here as long as I do it anonymously.)
I've made a throwaway email address, too: anon.hepc@gmail.com
Thanks, Metafilter.
My friend N. had an STD screen and blood panel done, and the results came back positive for Hepatitis C. I'm not sure which test it was - the antibody test, I think; she's got to schedule another one, I assume to figure out whether the virus is active or not.
N. is, as mentioned, female. Late twenties. American. Social drinker, nonsmoker, not a drug user. She did have surgery done (gallbladder removal) about three years ago, and there were blood tests done before that, but I'm not sure what they tested for. Finding the results there are on the to-do list. N. also has two tattoos; the most recent one was seven or eight years ago.
Her doctor told her the test result over the phone (which - I thought they had to tell you in person?) and then gave her the name of a.. gastroenterologist, I think, to take over from here for all the other tests and things. The MD who did the test isn't particularly helpful; no explanations or even a pamphlet, just gave her the result and a name of someone else to see. N. doesn't feel comfortable talking to that doctor about anything, even for advice, so that's not a way to learn more.
N. is pretty freaked out at this point, and I am trying not to be. N. doesn't have much support around either; she's got me and one elderly relative in this state, and the rest of her family is a 16-hour drive away.
I want to be helpful, but I don't know how. I've hit up Google, Wikipedia, WebMD, etc, and while facts are useful, I don't have a living-with-it knowledge of this disease, as I've never (until now) known anyone who has it.
So - those of you who have this, or know someone who has it - please deluge me with advice. What sort of things should be looked into, or looked out for, or made note of? What's the stuff you wish everyone knew about Hepatitis C? Pointers for explaining this sort of thing to previous sexual partners? Are there support groups or other methods of help available? N. is home-help for the aforementioned elderly relative, who isn't in the best health; is that something to worry about?
And for me, what are the things that friends/support-type people ought to do for people who have this?
(I realize that Metafilter is not her doctor -- N. will be consulting one ASAP. I'm just hoping the hivemind can help me get a handle on this. And I apologize for how scattered this question is - I don't have anyone to ask about this. She's asked me to keep quiet about it for now, although she's okay with me posting here as long as I do it anonymously.)
I've made a throwaway email address, too: anon.hepc@gmail.com
Thanks, Metafilter.
I've never had Hep C, but developed toxic hepatitis as a teenager from being on massive doses of antibiotics for months at a time. Before we figured out that it wasn't viral, everyone--with beloved and well-meaning family members leading the charge--treated me like I was a leper.
If I can give you just one piece of advice, it's to treat her like she's the same person who can give you a hug and touch items in your house, not like some disease vector. When you're already scared and upset, having people refusing to touch you at all makes it worse.
Your friend is very fortunate to have someone who is so concerned.
posted by corey flood at 6:41 AM on July 17, 2009
If I can give you just one piece of advice, it's to treat her like she's the same person who can give you a hug and touch items in your house, not like some disease vector. When you're already scared and upset, having people refusing to touch you at all makes it worse.
Your friend is very fortunate to have someone who is so concerned.
posted by corey flood at 6:41 AM on July 17, 2009
I also know a couple of people with Hep C and have a friend who works as a Hep C awareness educator. The first thing I would say is: don't freak out! It is by no means a death sentence or even a severe illness sentence.
This is totally off the top of my head, but here are a few things I like to point out to people when the subject comes up:
- There is absolutely no need to treat your friend differently as Hep C is pretty difficult to pass on.
- It requires blood to blood contact, so sexual transmission rates are very low. It does however live for a longer time outside the body than, say HIV, so sharing toothbrushes and razors should be avoided.
- She is unlikely to pass the virus onto her children, should she have any.
- She needs to be more careful about her liver from now on. Drink less alcohol, eat well, etc.
- The main medical treatment, interferon, frequently has unpleasant side effects and does not always succeed. As she is young and healthy though she may be considered a good candidate. If your friend undertakes this treatment she may well be tired and depressed for quite some time, so be prepared to provide some support.
- Intravenous drug use is by far the most common way of contracting hep C (at least since blood transfusion screening was introduced). Consider the possibility that your friend has used i/v drugs in the past and doesn't want to tell you; unless you're sure that's not the case, it's probably best not to press her too much on how she may have contracted it - at the end of the day, anyway, knowing how she got it probably won't help her much.
- I do not think your friend should feel the need to contact any former sexual partners or flatmates unless she feels there was a high likelihood of blood-to-blood contact. Some people will leap to the conclusion (for reasons above) that she has been a drug user. If she does wish to tell people, perhaps she should come up with a story about how she contracted it, as it *sounds* unlikely to have come from surgery. There is some good research around about transmission which may help her make up her mind about whether to tell people.
Hep C transmission is a sensitive issue. This may be why the doctors have been so unhelpful - they may be assuming that she contracted it through drug use.
I very much hope there is a Hep C support group or council in your/her area. Find it!
posted by 8k at 7:44 AM on July 17, 2009
This is totally off the top of my head, but here are a few things I like to point out to people when the subject comes up:
- There is absolutely no need to treat your friend differently as Hep C is pretty difficult to pass on.
- It requires blood to blood contact, so sexual transmission rates are very low. It does however live for a longer time outside the body than, say HIV, so sharing toothbrushes and razors should be avoided.
- She is unlikely to pass the virus onto her children, should she have any.
- She needs to be more careful about her liver from now on. Drink less alcohol, eat well, etc.
- The main medical treatment, interferon, frequently has unpleasant side effects and does not always succeed. As she is young and healthy though she may be considered a good candidate. If your friend undertakes this treatment she may well be tired and depressed for quite some time, so be prepared to provide some support.
- Intravenous drug use is by far the most common way of contracting hep C (at least since blood transfusion screening was introduced). Consider the possibility that your friend has used i/v drugs in the past and doesn't want to tell you; unless you're sure that's not the case, it's probably best not to press her too much on how she may have contracted it - at the end of the day, anyway, knowing how she got it probably won't help her much.
- I do not think your friend should feel the need to contact any former sexual partners or flatmates unless she feels there was a high likelihood of blood-to-blood contact. Some people will leap to the conclusion (for reasons above) that she has been a drug user. If she does wish to tell people, perhaps she should come up with a story about how she contracted it, as it *sounds* unlikely to have come from surgery. There is some good research around about transmission which may help her make up her mind about whether to tell people.
Hep C transmission is a sensitive issue. This may be why the doctors have been so unhelpful - they may be assuming that she contracted it through drug use.
I very much hope there is a Hep C support group or council in your/her area. Find it!
posted by 8k at 7:44 AM on July 17, 2009
It is unlikely to have come from surgery, but not unheard of.
posted by nat at 7:57 AM on July 17, 2009
posted by nat at 7:57 AM on July 17, 2009
Hep C is very slow moving and, as stenoboy notes, it is possible to be asymptomatic for years. Because of this, some conservative doctors may prefer to wait until until they see some actual symptoms before they begin treatment. I think most doctors will advocate not waiting, however.
The current treatment consists of weekly injections of interferon combined with ribavarin tablets taken daily. Depending on the genotype, this treatment will last for either 24 or 48 weeks. The most likely side effect of the treatment is a flu-like feeling. Imagine having the flu for 24 or 48 weeks and you have an idea of what your friend might go through in treatment. She might have to scale back her activity level quite a bit during that time period just to cope.
Hep C is not spread through casual contact, so N. shouldn't have to worry about her elderly relative being exposed.
posted by tdismukes at 8:10 AM on July 17, 2009
The current treatment consists of weekly injections of interferon combined with ribavarin tablets taken daily. Depending on the genotype, this treatment will last for either 24 or 48 weeks. The most likely side effect of the treatment is a flu-like feeling. Imagine having the flu for 24 or 48 weeks and you have an idea of what your friend might go through in treatment. She might have to scale back her activity level quite a bit during that time period just to cope.
Hep C is not spread through casual contact, so N. shouldn't have to worry about her elderly relative being exposed.
posted by tdismukes at 8:10 AM on July 17, 2009
My stepfather died of Hep C in March.
He was diagnosed in the mid-90s and was on a liver transplant list for a long time. However, because he could not stay off drugs/alcohol consistently, he never got the transplant.
The person who sits next to me at work has a husband living with Hep C. He did all the Interferon treatments and abstained from anything that would cause liver damage (your friend needs to watch out for things like Ibuprofen, even) and now he is considered clear (note: NOT cured, there is no cure, but it can be reduced to amounts so small as to be rendered insignificant to the person's overall health).
Interferon is not fun. I had six months of Interferon injections myself, and within an hour of a treatment your friend can expect:
- dizziness
- nausea
- vomiting (jello and pudding cups, instant brothy soups are good to eat after treatment)
- lethargy
- pain at the injection site
- depression
- low-grade fever, possibly chills
But really, it's like having a very mild bout of the flu for 2-3 days. I just wanted to say I've had the treatments myself and the one thing I'd recommend is that she get a comfy, deluxe dog bed (for a large breed) to keep on the days when/if she'll be puking. Lying on the floor and being cold and sickly gets excruciatingly tiresome after weeks and weeks of it.
You should get your friend a year's subscription to Netflix if she doesn't already have it and make sure she can use the on-demand option.
I'd also recommend that she ask if she can work from home or start telecommuting if she does a job that's amenable to such a setup. I worked things out with my boss years ago when I was sick (with something different, but required Interferon nonetheless) and they were very understanding about it.
If her job gives her grief about the convalescing period, she should go to HR and discuss it with them directly. Most places offer short- and long-term disability and she may be able to request time off through the Americans with Disabilities Act; not an expert on this, nor do you talk about her job, but she has options.
She should try to eat well and sleep well and as Douglas Adams would say... DON'T PANIC.
Feel free to MeMail me if you want more info or if your friend would like to contact me. I've seen all sides of this firsthand and there are happy endings.
posted by Unicorn on the cob at 3:04 PM on July 17, 2009
He was diagnosed in the mid-90s and was on a liver transplant list for a long time. However, because he could not stay off drugs/alcohol consistently, he never got the transplant.
The person who sits next to me at work has a husband living with Hep C. He did all the Interferon treatments and abstained from anything that would cause liver damage (your friend needs to watch out for things like Ibuprofen, even) and now he is considered clear (note: NOT cured, there is no cure, but it can be reduced to amounts so small as to be rendered insignificant to the person's overall health).
Interferon is not fun. I had six months of Interferon injections myself, and within an hour of a treatment your friend can expect:
- dizziness
- nausea
- vomiting (jello and pudding cups, instant brothy soups are good to eat after treatment)
- lethargy
- pain at the injection site
- depression
- low-grade fever, possibly chills
But really, it's like having a very mild bout of the flu for 2-3 days. I just wanted to say I've had the treatments myself and the one thing I'd recommend is that she get a comfy, deluxe dog bed (for a large breed) to keep on the days when/if she'll be puking. Lying on the floor and being cold and sickly gets excruciatingly tiresome after weeks and weeks of it.
You should get your friend a year's subscription to Netflix if she doesn't already have it and make sure she can use the on-demand option.
I'd also recommend that she ask if she can work from home or start telecommuting if she does a job that's amenable to such a setup. I worked things out with my boss years ago when I was sick (with something different, but required Interferon nonetheless) and they were very understanding about it.
If her job gives her grief about the convalescing period, she should go to HR and discuss it with them directly. Most places offer short- and long-term disability and she may be able to request time off through the Americans with Disabilities Act; not an expert on this, nor do you talk about her job, but she has options.
She should try to eat well and sleep well and as Douglas Adams would say... DON'T PANIC.
Feel free to MeMail me if you want more info or if your friend would like to contact me. I've seen all sides of this firsthand and there are happy endings.
posted by Unicorn on the cob at 3:04 PM on July 17, 2009
I had Hep-C, went through the now standard 48 week interferon/ribavirin treatment, have been virus free for a few years now and am considered cured (most current literature does consider 0 viral load for more than two years as cured - new viral load detected after that is considered a new infection). I most likely got the virus from gammaglobulin injections/infusions I regularly received for an immunodeficiency disorder from the 70s through the early 90s (they didn't test the blood supply for Hep C until 1992). Blood and blood product transfusions/infusions before 1992 along with sharing needles, coke spoons/straws or toothbrushes with other infected persons are the leading causes of infection. But given what you've described in your post, the tattoos seem the most likely source of the virus for your friend (much larger odds than the surgery or sex).
You can live with the Hep-C virus for decades without it causing any liver damage or other health concerns. At the time I found out I had the virus, it had most likely been living in me for over a decade, probably two, and maybe even more. A liver biopsy showed 0 stage liver disease (no damage at all), and my doctor said there was no rush at all to start treatments. I probably could have gone another decade without treatment with no ill effect (though with annual viral load test obviously).
So, there is definitely no reason for anyone to panic. However, your friend does need to take the next step and see the specialist sooner rather than later. The specialist will first do additional blood tests to determine the genotype and precise viral load. Then, most likely, they'll order a liver biopsy to see if there is any damage to the liver yet. A liver biopsy is a weird experience. They literally take a core sample from your liver with a big needle. It's an out-patient procedure with local anesthetic. The procedure itself doesn't really hurt (it's uncomfortable, but not painful). However you do get a very sharp and sore pain in your neck and shoulder after. It goes away after a day or two, and, yes, percocet helps.
Treatment depends on the genotype of the virus. For types 2 and 3 the success rate for current treatments is very high (70-80%). For the most common (type 1, which I had) the success rate is 50/50. While a coin flip is not something anyone facing a chronic illness wants to face, those odds represent a dramatic improvement in just past decade. Current studies (and I was actually part of one) are showing markedly continued improvement in treatment efficacy.
For most of us (those with no or minimal liver damage), the worst thing about Hep C is the treatment. It sucks. How bad it sucks differs greatly from person to person, but even in the best cases, it sucks. I had comparatively few issues with the treatment, and I wouldn't wish what I went through on my worst enemy. While I did get mild flu-like symptoms from the interferon (and basically slept for three days after the shots), the worst part for me was how the interferon affected me mentally. It turned a happy-go-lucky guy who was friends with everyone into a bitter angry bastard that wished everyone would just mind their own fucking business and die. Yeah, it was that dramatic.
I guess the good news in respect to side effects is that it's pretty apparent early on if the treatment is working. There's either a dramatic drop in viral load in a few weeks or not. You only need to go through the worst if it's working.
I do some speaking and fund raising for the American Liver Foundation, and recommend them highly as a great resource for both you and your friend. Your local chapter will be able to provide you information about local support groups.
Finally, the best thing that you can do for your friend is, when she goes through treatment, stay her friend. Don't take it personally when she tries to bite your head off for the smallest (real or imaginary) slight - it's the interferon talking, not her.
posted by dchase at 10:56 AM on July 19, 2009 [1 favorite]
You can live with the Hep-C virus for decades without it causing any liver damage or other health concerns. At the time I found out I had the virus, it had most likely been living in me for over a decade, probably two, and maybe even more. A liver biopsy showed 0 stage liver disease (no damage at all), and my doctor said there was no rush at all to start treatments. I probably could have gone another decade without treatment with no ill effect (though with annual viral load test obviously).
So, there is definitely no reason for anyone to panic. However, your friend does need to take the next step and see the specialist sooner rather than later. The specialist will first do additional blood tests to determine the genotype and precise viral load. Then, most likely, they'll order a liver biopsy to see if there is any damage to the liver yet. A liver biopsy is a weird experience. They literally take a core sample from your liver with a big needle. It's an out-patient procedure with local anesthetic. The procedure itself doesn't really hurt (it's uncomfortable, but not painful). However you do get a very sharp and sore pain in your neck and shoulder after. It goes away after a day or two, and, yes, percocet helps.
Treatment depends on the genotype of the virus. For types 2 and 3 the success rate for current treatments is very high (70-80%). For the most common (type 1, which I had) the success rate is 50/50. While a coin flip is not something anyone facing a chronic illness wants to face, those odds represent a dramatic improvement in just past decade. Current studies (and I was actually part of one) are showing markedly continued improvement in treatment efficacy.
For most of us (those with no or minimal liver damage), the worst thing about Hep C is the treatment. It sucks. How bad it sucks differs greatly from person to person, but even in the best cases, it sucks. I had comparatively few issues with the treatment, and I wouldn't wish what I went through on my worst enemy. While I did get mild flu-like symptoms from the interferon (and basically slept for three days after the shots), the worst part for me was how the interferon affected me mentally. It turned a happy-go-lucky guy who was friends with everyone into a bitter angry bastard that wished everyone would just mind their own fucking business and die. Yeah, it was that dramatic.
I guess the good news in respect to side effects is that it's pretty apparent early on if the treatment is working. There's either a dramatic drop in viral load in a few weeks or not. You only need to go through the worst if it's working.
I do some speaking and fund raising for the American Liver Foundation, and recommend them highly as a great resource for both you and your friend. Your local chapter will be able to provide you information about local support groups.
Finally, the best thing that you can do for your friend is, when she goes through treatment, stay her friend. Don't take it personally when she tries to bite your head off for the smallest (real or imaginary) slight - it's the interferon talking, not her.
posted by dchase at 10:56 AM on July 19, 2009 [1 favorite]
This thread is closed to new comments.
Best of luck to the both of you.
posted by stenoboy at 6:07 AM on July 17, 2009