Author Topic: Me vs. hep C (Read 23201 times)

Mike67 · « **on:** January 04, 2015, 09:53:10 am »

Hello all, this is my story with hep C.
I am a male and 47 years old. I've spent my career working as a respiratory/cardiac therapist. I've always been athletic, my dad started me in sports as far back as I can remember. I found a love for martial arts in my teens and have trained consistently in karate and jiu-jitsu ever since. I mention these because either may have been the source which I contacted and was infected with hep C.
I've always been considered a "health nut". Exercise/training is part of my daily life, I eat a "whole foods" diet, avoiding processed / junk food and mainly drink filtered pure water. I go so far as to use natural deodorant and fluoride free toothpaste, needless to say I don't smoke and drank alcohol at a minimum. About 10 years ago I started noticing an unnatural slow down in me which developed into ever worsening muscle and joint aches, I fought it hard but over the years I kept loosing ground. Once the severe, crippling leg cramps started I got my butt to a doctor. This was 2.5 years ago, the MD did blood work and when my liver enzymes came back elevated he ordered a Hep C screen which was, of course, positive. I was diagnosed with HepC genotype 1a.
After the diagnosis(and getting over the initial shock) I was referred to a GI doc and also did my own research. I did not like what I was told by the MDs or found based on available treatment and outcomes. Also, after 20+ years working in a medical profession, I was none to anxious to jump in as a patient. At this point I opted to seek out natural and alternative therapies. I tried several methods, but was unable to cure the disease. My symptoms and viral load/liver counts did stabilize to an extent over this time but I was unable to make any improvements or feel all that much better. I did stay in contact with my medical docs through the processes and back in Sept.(9/2014) I was sent for a liver fibroscan which showed moderate cirrhosis. Okay, time to get serious.
Medical treatments for hep C had come a long way in the short 2.5 years since my DX and I knew it was time. My docs felt that Harvoni was about to get FDA approval and they were excited about its preliminary results, I also liked what I had read on this latest treatment. We decided I would wait and start on the med as soon as Harvoni became available.
The process took longer than I expected but I finally started my first dose on 12/24/14. The initial 3 days were bad. A few hours after the 1st dose, I felt a heat sensation building up behind my eyes, which progressed to what felt like a severe flu, but with no fever. By Christmas night I had a crushing headache to go along with the aching. Friday morning was a killer, I had to go back to work for 7am, I was in a fog of misery, I'm still not sure how I made it through that morning. Somehow I had the clear thought to call the nurse handing my case(though the pharmacy providing the Harvoni), he consulted with the pharmacist who recommended I take two 800mg doses of ibuprofen 4 hours apart. I really was not expecting much, but sure enough within an hour of taking the first 800mg I felt immensely better. When I got home from work that afternoon I took the second 800mg and was back to feeling normal shortly after. As of this morning I took my 12th dose, I have to say after that rough start the treatment has been going well. I take Harvoni first thing in the AM on an empty stomach, the only side effects I've noticed since day 4 are occasional dizzy spells, a little head pressure(that's not developed into a headache) and some minor fatigue later in the day. On the plus side I'm already starting to feel some of strength and energy returning to my body this damn disease as sapped from me over last 13 years.
I'm feeling very positive about this course, I am looking forward to getting back on track and living life with some zing again

Thank you for reading and I wish you all the best in your battle against and cure of hepatitis.

BattleTheBeast · « **Reply #1 on:** January 04, 2015, 06:08:17 pm »

Hi Mike,

Welcome! Thanks so much for sharing your story with us. It's so great that you have been so in tune with your body that you not only took great care of yourself but you also noticed pretty quickly something was wrong and get a fast diagnosis.

You are on your way to SVR, Harvoni is pretty amazing, the magic orange pill. I personally felt while I have been in treatment that any bad days are the ones where the medication tracked down the virus and is busy eradicating it! I didn't feel great when I started so honestly any good days are welcome and I am super grateful!

How many weeks are you scheduled for treatment? Do you know what you starting numbers are? VL, AST, ALT, Bili....

Continue to drink lots of water and eating healthy, they are really important if we want our livers to start to regenerate after we kick out the HCV!

Mel

Mike67 · « **Reply #2 on:** January 05, 2015, 06:43:52 am »

Quote from: BattleTheBeast on January 04, 2015, 06:08:17 pm

Hi Mike,

Welcome! Thanks so much for sharing your story with us. It's so great that you have been so in tune with your body that you not only took great care of yourself but you also noticed pretty quickly something was wrong and get a fast diagnosis.

You are on your way to SVR, Harvoni is pretty amazing, the magic orange pill. I personally felt while I have been in treatment that any bad days are the ones where the medication tracked down the virus and is busy eradicating it! I didn't feel great when I started so honestly any good days are welcome and I am super grateful!

How many weeks are you scheduled for treatment? Do you know what you starting numbers are? VL, AST, ALT, Bili....

Continue to drink lots of water and eating healthy, they are really important if we want our livers to start to regenerate after we kick out the HCV!

Mel

Thanks Mel, I don't have liver counts off the top of my head but my latest VL taken on Dec 10th for starting Harvoni was 249,000. I had a liver ultrasound done and tumor markers drawn at the same time and both were normal.
At the moment I'm approved for an 8week course but that's because my doc's office didn't get the fibroscan results to my my ins. co.

That is in process now and I should have the 12week approval shortly.

BattleTheBeast · « **Reply #3 on:** January 05, 2015, 07:32:28 am »

Hey Mike,

Sounds like you have a good doctor and are on your way to getting those 12 precious weeks of Harvoni, that's excellent news! By the summer time you will be SVR12 and walking around with a big smile!

Please keep in touch,

Mel

Mike67 · « **Reply #4 on:** January 23, 2015, 10:23:06 pm »

Incredible as it might read....I had blood work done earlier this week, after the first 4 weeks of Harvoni and not only is my viral load "undetectable" but ALL my liver function tests have normalized. This is very good news

Side effects have been minimal to boot, some fatigue and a rare dizzy spell.

I can only hope these new treatments work as well for everyone on them.

BattleTheBeast · « **Reply #5 on:** January 24, 2015, 09:45:32 am »

Hi Mike!

So happy to see your post with the great news. You are well on your way to those magic SVR results,

Hope the sides stay minimal and you feel better with each passing day!

Mel

mrjloc · « **Reply #6 on:** February 11, 2015, 01:42:16 pm »

im really freaking out i had an CT of my abdomen for liver cancer and it showed no cancer cells but now my Fibrosure show advance activity and F4 Cirrhosis my alt 146 im tring to get on treatment .....any advice?

BattleTheBeast · « **Reply #7 on:** February 11, 2015, 02:21:08 pm »

Quote from: mrjloc on February 11, 2015, 01:42:16 pm

im really freaking out i had an CT of my abdomen for liver cancer and it showed no cancer cells but now my Fibrosure show advance activity and F4 Cirrhosis my alt 146 im tring to get on treatment .....any advice?

My Fibrosure showed the same F4 and my CT was clear, my ALT was not that high. With F4 from the Fibrosure you should be easily able to get on treatment ASAP without much headache from the insurance company. You said you are trying to get on treatment, when is your next Dr. Appointment and what kind of doctor is treating you?

Don't freak out, just focus your energy on getting into the doctor and getting the prescription going

Mel

mrjloc · « **Reply #8 on:** February 11, 2015, 02:30:45 pm »

BattleTheBeast
Mel- Im seeing a GI Dr. and my next appt. is Monday im tring not to freak out but i cant stop thinking of it meaning does it = die

BattleTheBeast · « **Reply #9 on:** February 11, 2015, 02:35:43 pm »

Mrjloc,

I sure do hope not!!! It means we have cirrhosis and we need to get rid of the Hep C and take good care of ourselves. It means we need to eat healthy, exercise when we can and not do anything that will tax our livers.

Right now I am on TX with Harvoni and just focusing on that, I have a great Infectious Disease doctor I am working with. Once the infection is gone I will start to see a Liver Specialist so we can continue to monitor my liver and any issues that may arise. It's not a death sentence yet and we don't have cancer!

Mel

mrjloc · « **Reply #10 on:** February 11, 2015, 02:51:54 pm »

thanks mel i try to be positive but im very sresed about it all

BattleTheBeast · « **Reply #11 on:** February 11, 2015, 02:58:16 pm »

I understand Mrj but we can only make the best of the situation and stressing out doesn't help.

What you can control and be proactive about is to make sure you eat healthy, don't drink alcohol, follow your doctors advice, drink lots of water and exercise if you feel up to it.

What Genotype are you? Have you been treated before? Any symptoms? Did you just find out about the Hep C?

There is a ton of information you can learn so much if you are new to this. Take that nervous energy and focus it on learning what you can do to help yourself today, tomorrow and the years to come. Between this forum and HepMag you will be really busy reading and learning between now and Monday!!

Mel

mrjloc · « **Reply #12 on:** February 11, 2015, 03:02:22 pm »

Ive had hep c for about 20 yrs now with no complications
im not sure geno typy its the one thats more hard to get rid of its just the thought of the new findings that scar me

BattleTheBeast · « **Reply #13 on:** February 11, 2015, 04:14:22 pm »

Well for me knowledge is power and brings a sense of calm. I learn what I am dealing with, read about my options and things I can do myself and then I make decisions accordingly taking everything I have learned along with my doctor's advice into consideration. You have to figure out what works for you

Mel

morning_glory · « **Reply #14 on:** February 11, 2015, 11:25:42 pm »

Quote from: BattleTheBeast on February 11, 2015, 04:14:22 pm

Well for me knowledge is power and brings a sense of calm. I learn what I am dealing with, read about my options and things I can do myself and then I make decisions accordingly taking everything I have learned along with my doctor's advice into consideration. You have to figure out what works for you

Mel

Mel, Great advice!

mrjloc - Allow yourself some "freak out" time, then get to work..reading & learning! There are many wonderful people here. The more we read & learn from their life experiences, the better prepared we are.

Mike67, thank you for sharing, also.

Blessings,
MG

Lynn K · « **Reply #15 on:** February 12, 2015, 02:50:05 am »

Hi mrjloc

Just want to share I have had hep c since 1978 and found out in 1990. I was diagnosed with cirrhosis F4 in January 2008 so 7 years ago and I am still here.

What we need to do is get rid of hepatitis c and give our livers a chance to heal so no worries cirrhosis does not = death

Get treated, get cured, and hopefully our livers will get better

mrjloc · « **Reply #16 on:** February 12, 2015, 09:08:45 pm »

Does anyone have issues with memory with hep c and what can help with it?

mrjloc · « **Reply #17 on:** February 12, 2015, 09:12:16 pm »

Does anyone have issues with memory / confusion hep c? Is it normal, and what can help with it?

Lynn K · « **Reply #18 on:** February 13, 2015, 02:54:30 am »

Hi mrjloc

That could be a symptom of cirrhosis depending on how far advanced you are best to ask your doctor about that. If it is from cirrhosis they can treat that with medications.

Good luck at your appointment Monday and ask your doctor about this issues. Write down your questions and bring a friend partner spouse if possible they can help you remember the visit.

You will want to know genotype most likely 1a or 1b but could be something else. How advanced is my cirrhosis. What tests will I need? What medication will you be prescribing for my hepatitis c or any other medicines needed.

That would be good for a start

morning_glory · « **Reply #19 on:** February 13, 2015, 11:43:47 am »

mrjloc,
I agree w/ Lynn, definitely write down your questions! Also, take notes while you're @ the appointment. Bringing someone w/ you, will be a big help, as well.

Lynn or anyone else,
I remember someone posting a list of questions to ask when seeing the doc. I just can't seem to locate it. If anyone knows where it is, could you post a link or copy & post the questions here, for mrjloc & others?

Thank you!
MG

Lynn K · « **Reply #20 on:** February 14, 2015, 03:23:09 am »

Here are some suggestions

"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. For information on this, see HCSP’s Factsheet Being an Effective Health Care Consumer: Your Medical History.

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.

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/max_appoint.pdf

---------------------------------------------------------------------------------
Some questions to ask your doctor...

Do I need to be vaccinated for hepatitis A and hepatitis B?

What is my genotype? What does my genotype mean?

Do I have liver damage? If so, how much liver damage is there?

What are my treatment options?

Is there one treatment you think is best for me?

Are there any clinical trials?

What are the benefits of each treatment option?

What are the potential risks of each treatment option?

How can I protect the people around me from hepatitis C?

Do I need to start treatment for hepatitis C now?

How will this treatment interact with my other medications?

How will you assess whether the treatment is working for me?

What should I do if I have side effects? How can I manage the side effects?

What are symptoms to pay attention to and look out for?

How likely is it that I will develop cirrhosis or liver cancer?

If I do not start treatment now, how often should my liver be monitored for liver damage?

How often should I see a liver specialist? Primary care physician?

mrjloc · « **Reply #21 on:** February 16, 2015, 10:05:20 am »

Im off to see mu GI Dr. Ill find out today my fate with this cirrosis and hep c....god bless

Mike · « **Reply #22 on:** February 16, 2015, 03:17:45 pm »

Hi Mr. Jloc,

I hope everything works out at the appointment.

Best wishes, Mike

mrjloc · « **Reply #23 on:** February 16, 2015, 03:22:01 pm »

So heres my Dr. APPT.
I HAVE TYPE 1 A , FIRST STAGES OF CIRRHOSIS MY SPLEEN IS INFLAMED SO THE DR HAS ORDERED FOR ME TO GO ON Harvoni 12 week course ...lets hope my insurance will cover treatment and some of this inflamation goes down on treatment

Lynn K · « **Reply #24 on:** February 16, 2015, 04:14:51 pm »

Did they say you are F1 fibrosis? Did you have a fibro scan? How did they determine you have the first stages of cirrhosis?

Did you ask about the memory / confusion issues?

http://www.hcvadvocate.org/hepatitis%5Cfactsheets_pdf/non-invasive_markers.pdf

The stage score represents the amount of fibrosis:

• Stage F0 = no fibrosis
• Stage F1 = mild fibrosis
• Stage F2 = moderate fibrosis
• Stage F3 = bridging fibrosis
• Stage F4 = cirrhosis

I have had hep c for likely 36 years and was diagnosed with cirrhosis 7 years ago on my 4th or 5th liver biopsy. So it took me about 29 years to progress to full cirrhosis of course different patients will have different progression if any at all over that same amount of time.

Best of luck glad you finally got to see a doctor

mrjloc · « **Reply #25 on:** February 16, 2015, 04:19:42 pm »

A fibrosure test was done and i was F4 , on my CT it did not show lumps or nothing but my spleen was swelling and liver so i do have some scaring on my liver so she determined 12 weeks on Harvoni hope my insurance wil cover it

Lynn K · « **Reply #26 on:** February 16, 2015, 04:30:27 pm »

Thanks for the info hopefully your insurance won't give you any problems. Do you know who provides your prescription drug coverage?

Express Scripts is difficult to deal with they are my drug provider with by medical insurance through BCBS.

Is your doctor going to get you setup to have an upper endoscopy and get the pneumonia vaccine along with hep a and hep b vaccines if you haven't already had those?

My ultrasound shows similar enlarged spleen and liver. I also have swelling in my lower legs called pitting edema which I have had for several years now. I take a diuretic Spironolactone to help reduce the swelling.

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Author Topic: Me vs. hep C (Read 23201 times)