Aa
Overwhelmed
I am going to see hepatologist today. He has given me 3 options: treatment, participate in trial or wait until study drugs with even better results are approved. I have done some research on the current drugs and read what others are saying about the disease and treatment. the result...I am overwhelmed, scared and a few hours from my appt still don't know what to decide. My biopsy showed that I don't have cirrhosis of the liver, that's good, but there was some liver damage. Let me here from you Hep c sommunity. At least let me know some of your questions and suggestions.
Dont want to sound negative, but the treatment is often "sugar coated", The best education I have received was from this site, and talking to others at different stages of the game, I will offer my best wishes for you as it sounds you have been through a tough time already. I am in week 11 now and almost done with the Incivek, and it is getting tolerable, but I am still not able to function but in small fractions of what my daily life used to be like, YET, I have been tested UND since week 4, and my Dr. says that I am what she would call a text book perfect case, the meds have worked in many ways, I have gone over a month without insulin for diabetes, at first they said it was the meds but it is looking like I never had diabetes, it was brought on by the hep c , and if you have any questions about what I did to get past the rash, the flu, best way to take the shot, foods to eat, do not hesitate to leave me a note , I usually get on here once every day or two and would be glad to share my journey with you. good luck
Everything I wanted to know about to treat or not to treat ( I had decided to treat but have had 2nd thoughts - thanks mpowered ! ) , but at least after reading Hectors info ( and printing it out ) I will be informed. I thought I knew everything ( about everything lol ) but realise I don't know stuff about whats going on in my liver that I should absolutely know - I am on to it ! Just rang up my Hep C nurse for further conversation pre meds and treatment. Thanks
Thank you so much, Hector. I went to my appt. My genotype is 1 and I am Stage 3. I have decided to do treament due to my stage. I have a great doc through University of Cincinnati Med Ctr. I have access to my medical reords including test results thru an online communication system (UC Heath). I can keep track of appts, communicate w/doc/nurse. I was tested the other day and have abnormal liver enzymes. I am HAV negative so I guess I'll be getting a vaccination. My nexr step is a consult w/my nurse ro discuss the meds, how to take, side effects,ets. Got lots of literature about Hep C and the meds. Already know to stop Lipitor due to contraindications when I start treatment. About side effects...I may or may not have them. I don't fear them I know I can do this. As I told the nurse, years ago, I was burned..had 2nd and 3rd degree burns and I learned to debride those burns two times a day for 10 weeks. I can do this.
Hector thanks for the links and thank you.
Hector thanks for the links and thank you.
I am in wk 8 of treatment, I only have one question for you, is your life in order ? if you decide to do treatment, get ready for what is to come, it is not easy, not trying to scare you, I chose to do it, but I am not going to sugar coat it either, listen to what hector is telling you he has a lot of great information, I am just telling you, if you are going to do the treatment, be ready to put your life on hold. there is one thing "take your time", be really well informed, if you dont know ask someone, when I say take your time, I dont mean forever, but take a week to learn and be informed, know what you are going to embark upon if you start treatment, learn the side effects, be prepared, so many just jump the gun and learn the hard way, and never finish the treatment, knowledge is power...... Trolleater
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The decision of what is the best plan of action for someone is based on multiple factors. One of the most important is the stage of liver disease. It is important to know quantities not just qualities. For example "there was some liver damage". Some damage could mean stages 1, 2 or 3. I proper decision cannot be made until you know the stage number. This would also apply to blood tests. Knowing the exact numbers is vital. So we recommend folks get copies of all test results then they can post them verbatim. We can then offer much more appropriate advice.
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Here are some questions you may want to ask your doctor. (More examples can be found in the guides below).
What genotype do I have?
What stage is my liver disease?
Based on the stage of my liver disease what do you recommend for patients to do?
If I choose not to treat now could this affect my chances of successful treatment in the future?
How will I know whether I should start taking hepatitis C drugs?
Are there certain daily habits I should change in order to help me stay healthy?
Can I drink any alcohol at all?
What drugs can I use for pain treatment?
Should I be checked for other infections?
Do I need to get vaccinations for other types of hepatitis?
How can I protect others from getting infected with hepatitis C?
What tests will you perform to find out more about my health and how hepatitis C is affecting me?
Are there any current clinical trials I could participate in?
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Maximizing Your Medical Appointments
Here are some tips on how to maximize the time spent with your care provider.
1. Be prepared. Take the time before your appointment to write down all of your medications, any pertinent allergies, a brief medical history, and your chief health concerns. Include the names, addresses, and phone numbers of your primary care provider and any specialists that might be linked to your current medical issue.
2. Before your medical appointment, write down your questions and prioritize them.
3. Maintain your own health records. It can really help expedite matters if you bring copies of your most recent pertinent medical reports.
4. Make eye contact before speaking to your medical provider. Once you
begin speaking, your provider may take notes. This does not mean s/he is not listening.
5. Before you start with your list, ask how much time the provider has for
questions. Respect these limits and you will benefit in the long run.
6. Prioritize your health issues. Be brief but clear. Start with the most important details and if there is time, you can add the less important information at the end. If you have any fears or feelings, discuss them. It can be reassuring to learn that your symptoms have nothing to do with some disease you have been dreading.
7. When describing your symptoms, begin with the general picture and end
with the specifics. Example: My stomach hurts. I feel nauseous in the morning.
8. Ask for clarification. If your doctor uses words or explanations you do not
understand, ask her to clarify or simplify her words.
9. Take notes. If the doctor makes suggestions, write them down. Ask him to spell any words you might want to refer to later, such as a diagnosis, medication or procedure. If during the appointment you don’t have time to write everything down, write your notes immediately after while sitting in the lobby or your car.
10. Take a friend, loved one or advocate. This is especially important for appointments that may be long, complicated, or not routine. Ask your
companion to take notes for you. If it’s alright with your provider, you can also audiotape the appointment.
11. If medication is prescribed, ask what the common side effects are and how the medication should be taken.
12. Express your reservations. If your doctor suggests a treatment plan that you have some concerns about, let her know. Sometimes these
concerns can be easily addressed.
13. Ask if there are any alternatives. If your doctor makes a treatment suggestion and it is not one that you are prepared to follow, ask about other options.
14. Keep an open mind. This can be your strongest ally. It is amazing how many people will avoid a medication because of their fear of side effects, only to find out later that the reality was not anywhere near what they imagined.
15. Ask the physician if there are resources or support groups she would recommend.
16. Discuss the follow-up plan. If you are scheduled to have diagnostic tests, ask the doctor when you can expect the results and how these results are conveyed to you. When does your provider want to see you
next? Ask if there are any signs or symptoms that could be urgent and should be reported immediately.
If the results are going to be disclosed at your next appointment and if there is going to be a long interval between appointments, ask how you can obtain earlier results. Additionally, ask the physician what is the
best way to contact his office should a need arise that may not require an office visit.
17. If this is a follow-up appointment, ask for copies of diagnostic test results and surgical reports. This sets a standard that you are the manager of your health care. It also makes it easier to give copies to
other health practitioners.
18. If you run out of time and still have more questions on your list, ask how you might be able to get the answers to your questions without disrupting the physician’s schedule. Ask if you can leave a copy
of the questions along with the request that they call you back within a specified time frame.
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Here is a link the a guide that will discuss in detail some of the things you should know. Including...
3. Getting Organized
4. Choosing a Medical Provider
5. Medical Provider Information
6. Maximizing Your Medical Appointments
7. New Appointment Checklist
"First Steps with hepatitis C for the newly diagnosed"
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Newly%20Diagnosed%20PI.pdf
There is a very good and detailed guide that covers the topic more than we can in one post. You may want to look at it.
"A Guide to: Hepatitis C Making Treatment Decisions"
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Treatment_Decision_Guide.pdf
Here is another guide on preparing for hepatitis C treatment.
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Preparing%20for%20Treatment.pdf
Here is a guide about possible treatment side effects and how you can manage them.
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Treatment%20Side%20Effect%20Guide.pdf
I hope this helps to get you started.
Best of luck to you!
Hector