Aa
can you demand to take treatment?
i have genotype 1b hep c and i was wondering if i can demand/request to take treatment and if so will they let me? how would someone go about doing that?
Hey glad you managed an appointment so fast.
Lots of what has been said still stands.
You can make it clear that you are interested in treating and get rid of the virus. the thing is knowing what stage of fibrosis you are is very important. I saw where you stated you could have what might be Hepatitis C related conditions. This is where a good physical and pre-treatment exams and baseline labs establish your overall health and whether you can withstand treatment as well as things to look out for while you are treating. Some doctors perform pre-treatment assessments such as cardio, thyroid, ophthalmological (eyes), thyroid, mental status for example.
In other words even if your doctor is on board with treating right away there are a few other things (which are to your benefit) prior to treatment.
1. Be sure to ask about getting vaccinated for Hepatitis A & B
2. Be sure to ask about pre-treatment assessments as well as (and most important) a biopsy.
--> There are noninvasive ways to assess your fibrosis with varying degrees of accuracy. I have this image that a great university such as Duke would want the gold standard (which is a biopsy) but in reality I do not know much about their program.
This is the part where you ask about that.So when it comes to demands maybe you can be insistent about a biopsy.
Lastly and most important sometimes university affiliated hospitals have resources or ideas where you can go or how you afford to pay for your meds. The drug companies might help with your meds but hopefully there is a program or some type of funding that will help with doctor visits, labs and maybe even rescue meds.
This may be going to far but the meds to treat Hep C Geno 1 (a & b) can be very harsh. There are what is called "rescue meds" to treat the side effects.
If your visit gets this far Be sure to ask about "rescue meds" to treat side effects. That way you might not have to dose reduce early in treatment. I realize this is a lot and maybe too far in advance but these are things to ask about (rather than demanding) since lots of doctors do not know how to manage side effects very well.
As gung-ho as many of are when we first start treatment and we say we will do anything as long as we have the meds to treat the disease. The side effects can be extremely severe and in some cases make it difficult to function. This is another reason to ask how side effects are managed (as well as being sure your body can handle treatment).
Lots of what has been said still stands.
You can make it clear that you are interested in treating and get rid of the virus. the thing is knowing what stage of fibrosis you are is very important. I saw where you stated you could have what might be Hepatitis C related conditions. This is where a good physical and pre-treatment exams and baseline labs establish your overall health and whether you can withstand treatment as well as things to look out for while you are treating. Some doctors perform pre-treatment assessments such as cardio, thyroid, ophthalmological (eyes), thyroid, mental status for example.
In other words even if your doctor is on board with treating right away there are a few other things (which are to your benefit) prior to treatment.
1. Be sure to ask about getting vaccinated for Hepatitis A & B
2. Be sure to ask about pre-treatment assessments as well as (and most important) a biopsy.
--> There are noninvasive ways to assess your fibrosis with varying degrees of accuracy. I have this image that a great university such as Duke would want the gold standard (which is a biopsy) but in reality I do not know much about their program.
This is the part where you ask about that.So when it comes to demands maybe you can be insistent about a biopsy.
Lastly and most important sometimes university affiliated hospitals have resources or ideas where you can go or how you afford to pay for your meds. The drug companies might help with your meds but hopefully there is a program or some type of funding that will help with doctor visits, labs and maybe even rescue meds.
This may be going to far but the meds to treat Hep C Geno 1 (a & b) can be very harsh. There are what is called "rescue meds" to treat the side effects.
If your visit gets this far Be sure to ask about "rescue meds" to treat side effects. That way you might not have to dose reduce early in treatment. I realize this is a lot and maybe too far in advance but these are things to ask about (rather than demanding) since lots of doctors do not know how to manage side effects very well.
As gung-ho as many of are when we first start treatment and we say we will do anything as long as we have the meds to treat the disease. The side effects can be extremely severe and in some cases make it difficult to function. This is another reason to ask how side effects are managed (as well as being sure your body can handle treatment).
Bravo! This is great news that you've gotten an appointment so quickly and that you are taking a very strong stance on yourself. Between now and Friday do try to educate yourself as much as possible about the virus and the treatments. You can learn a lot by browsing around on this forum, or you can also get the info in a more organized format at numerous other websites, including:
http://hcvadvocate.org/ (my favorite )
http://www.hepatitis-central.com/
http://www.hepmag.com/index.shtml
If you arm yourself with all this information you might find it easier to educate your family members and gain more support from them too. I'm so hoping you can find someone who can help advocate for you. Get the info first and then take a chance trying to persuade at least one family member. They might surprise you. I'm thinking of an experience I had with a sister-in-law who I had never liked very well and didn't respect very much until after she went through a long and difficult illness while being divorced and trying to raise three children. She got up her courage to ask me (the only family member she could have asked) for help in advocating for her. I went out of a sense of duty only, but after I got there and learned about her illness and saw firsthand how her medical clinic was treating her (pretending it was a mental problem when a quick review of their own medical records on her showed clearly that there were serious medical issues that had been noted but never treated), I soon changed my mind about everything and became a strong advocate for her. I mediated an agreement that resulted in her medical problems finally being addressed after an entire year of them refusing to do anything, even though she was seriously ill. I only wish she had asked me earlier, as by the time they started treating her she had deteriorated so badly that she only lived another 8 months in spite of treatment.
I also have had the firsthand experience of having my husband accompany me to all medical appointments involving any serious illness, and being amazed time after time at how much I forget that he remembers. For me it is impossible to keep my feelings from confusing my memory when involved in such serious business as a life-threatening illness. I think everyone should make a strong effort to have an advocate when they are dealing with a serious health problem. Okay, off my soapbox now!
http://hcvadvocate.org/ (my favorite )
http://www.hepatitis-central.com/
http://www.hepmag.com/index.shtml
If you arm yourself with all this information you might find it easier to educate your family members and gain more support from them too. I'm so hoping you can find someone who can help advocate for you. Get the info first and then take a chance trying to persuade at least one family member. They might surprise you. I'm thinking of an experience I had with a sister-in-law who I had never liked very well and didn't respect very much until after she went through a long and difficult illness while being divorced and trying to raise three children. She got up her courage to ask me (the only family member she could have asked) for help in advocating for her. I went out of a sense of duty only, but after I got there and learned about her illness and saw firsthand how her medical clinic was treating her (pretending it was a mental problem when a quick review of their own medical records on her showed clearly that there were serious medical issues that had been noted but never treated), I soon changed my mind about everything and became a strong advocate for her. I mediated an agreement that resulted in her medical problems finally being addressed after an entire year of them refusing to do anything, even though she was seriously ill. I only wish she had asked me earlier, as by the time they started treating her she had deteriorated so badly that she only lived another 8 months in spite of treatment.
I also have had the firsthand experience of having my husband accompany me to all medical appointments involving any serious illness, and being amazed time after time at how much I forget that he remembers. For me it is impossible to keep my feelings from confusing my memory when involved in such serious business as a life-threatening illness. I think everyone should make a strong effort to have an advocate when they are dealing with a serious health problem. Okay, off my soapbox now!
thank you both for the advice. i do have an appointment friday @ duke. i just want to go to this appointment pro me if you know what i mean.
Just too add to the great advice already given, once you get a hepa doc you can get the treatment meds for free if you qualify.
You need to find a Hepatologist and make an appointment to see him/her first. Hopefully you can find a good Hepatologist at Duke University Medical Center or another place. I believe there were several good suggestions in your other thread concerning finding a Hepatologist and getting insurance. If you find a good Hepatologist, I am sure that Hepatologist will offer treatment to you unless there is some medical reason that you cannot treat.
The Hepatologist will examine you and run several tests on you. If you are medically healthy enough, then you should be able to do treatment. Yes, you can tell the Hepatologist that you definitely want to get treatment and get rid of the Hepatitis C. If you are healthy enough, then you should be able to get treatment for the Hepatitis C. When I say "healthy enough" I mean that if you do not have any medical problems which would prevent you from treating, then you should be able to request and get Hep C treatment so you can get rid of Hep C.
Generally speaking, examples of medical conditions which may preclude one from treating are some autoimmune disorders, severe and uncontrolled depression, decompensated liver disease, and some others.
But first you need to make an appointment to see a good Hepatologist. Please follow the suggestions in your other thread to get insurance and to get an appointment with a good Hepatologist. If you qualify, Duke University Medical Center will treat you free. They also have the sliding scale fee schedule in case you make too much money for the free care.
Best of luck.
The Hepatologist will examine you and run several tests on you. If you are medically healthy enough, then you should be able to do treatment. Yes, you can tell the Hepatologist that you definitely want to get treatment and get rid of the Hepatitis C. If you are healthy enough, then you should be able to get treatment for the Hepatitis C. When I say "healthy enough" I mean that if you do not have any medical problems which would prevent you from treating, then you should be able to request and get Hep C treatment so you can get rid of Hep C.
Generally speaking, examples of medical conditions which may preclude one from treating are some autoimmune disorders, severe and uncontrolled depression, decompensated liver disease, and some others.
But first you need to make an appointment to see a good Hepatologist. Please follow the suggestions in your other thread to get insurance and to get an appointment with a good Hepatologist. If you qualify, Duke University Medical Center will treat you free. They also have the sliding scale fee schedule in case you make too much money for the free care.
Best of luck.
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