Author Topic: Hello and have some questions. (Read 29344 times)

JuliaG · « **on:** August 15, 2019, 01:19:57 pm »

Hello everyone and thank you for a lot of information I found here.

Doctor called yesterday to confirm that my viral load is there so I have Hep C for sure. I kind of hoped I might be in 25% but nope

((( My story started in March when I had my well woman exam. My blood pressure was elevated so Doctor did a regular blood test before giving me meds. My enzymes were elevated so he sent me to draw blood for Hep C testing. In June I found out it was reactive. The whole month went by before I found courage to call them just to find out my blood was "rejected" and no one bothered to call me and let me know I need have my blood redrawn. Finally I had it done again on July 31 and yesterday all was confirmed.

I am 45 yo female. Never did any drugs in my life, no tattoos, never smoked. Never had unprotected or other then usual sex . Doctor asked me if I have any idea how I could get it. The only plausible explanation I could find that when I gave birth to my son way back in Eastern Europe ( I am originally from there) I was given a big blood transfusion in the hospital. Could it be from manicures and pedicures?Probably not...

I am so very worried because though my lifestyle is very healthy I did drink wine for the last 4 or 5 years which I loved. I had no idea that I was not supposed to be drinking that wine!

My health issue is high blood pressure ( runs in my family) and I am taking hydrochlorothiazide and lizinopril for that, and it works just fine so it is under control. Very active and maybe 5-10 pounds overweight. I have a tenderness to the right and up from my belly button from time to time. I have read that liver has no nerves so how come we still feel discomfort in that area?

I do not know what type of Hep C I have or how bog my viral load is yet ...My doctor put a referral to gastroenterologyst so have no idea how long it might take...All I know for now from my online chart is that my enzymes are elevated ( ALT - 175. AST - 110 and Platelets - 119)... I already know that Lynne mentioned that low platelets is a bad sign so I am freaking out...
Anyway - thank you so much for listening...This disease has such a stigma - I cant tell nobody about it other than my family...My husband is fine and he will get tested next time he will see his physician ... Still have to talk to my son who is 25 hoping that I did not give it to him...

Lynn K · « **Reply #1 on:** August 15, 2019, 08:07:02 pm »

Hi Julia and welcome

I’m betting it was the blood transfusion. Prior to 1990 there was no test available to screen for hep c virus and I believe it may have taken longer for this testing to be used everywhere.

As far as testing your family, for long term monogamous couples transmission of hep c is very rare the US CDC does not suggest the use of barrier protection (ie condoms) would need to be used for these couples. Household transmission is also very rare. If somehow you did have hep c when your son was born the risk of transmission during birth is only about 5 percent. So it is unlikely anyone in your family is detected.

Mildly elevated liver enzymes are very common in hep c infection. It only means that something is irritating your liver it does not relate to how much liver damage has occurred. Viral load also does not relate to liver damage or to difficulty of treatment. Knowing your genotype is mostly important to know which treatment is best for you but the new meds are great at treating most genotypes. For those who have not previously been treated with no liver damage the odds of cure are higher than 98% in most cases.

It takes decades of infection for hep c to cause liver damage and not everyone with hep c will develop liver disease. I’ve read only about 20% of people infected for 20 years will develop liver disease. However, as you noted a below normal platelet count can be associated with the beginnings of portal hypertension caused by liver disease. Yours is only slightly below normal and it is possible to turn liver damage around with cure of hep c.

Liver disease is not the only cause of low platelet counts. Causes of low platelet production include:

aplastic anemia
vitamin B-12 deficiency
folate deficiency
iron deficiency
viral infections, including HIV, Epstein-Barr, and chickenpox
exposure to chemotherapy, radiation, or toxic chemicals
consuming too much alcohol
cirrhosis
leukemia
myelodysplasia

So you could simply need some b-12 so don’t jump there just yet. Even if you do have liver damage or early cirrhosis just know I was diagnosed with liver cirrhosis in Jan 2008 and I’m still here. As I said with cure of hep c we have a chance our liver scores may begin to improve with time. Several people here were diagnosed F4 fibrosis score (meaning cirrhosis) but after cure have seen their fibrosis scores decrease to F3 or even F2

Fibrosis is best diagnosed with either liver biopsy, fibroscan a test similar to an ultrasound but the machine produces a sort of thump to estimate liver stiffness, or a blood test called fibrosure. You will likely be having one of those tests along with abdominal ultrasound to evaluate your liver to see where you stand.

But just know your family is likely fine and not infected, you can and will be cured.

Let me know if you have any other questions and best of luck

Lynn

JuliaG · « **Reply #2 on:** August 16, 2019, 09:05:09 am »

Thank you so much Lynn for your response and your kind words! Every word is much important and appreciated.

Yes, my blood transfusion took place in 1994 in Russia and soon after I saw an article in local paper that a person who donated blood in my city in 1994 had HIV and nobody tested him and his blood was given to people. I went myself and tested for HIV, thanks God it was negative but I will not be surprised that Hep C was there as well... Horrible.

Anyway, The registered nurse called me on Wednesday to find out if I need counselling because I was just diagnosed. I was at work and said thanks but I am ok because I did a lot of reading myself. Thanks to this forum and online materials. Is it common for people with Hep C to get counselling?

Waiting for appointment is long from what I gathered reading this forum. My doctor said if I do not see a referral status online by next Wednesday I should call them. So far nothing. We have Tricare and getting all treatments at the hospital on military base and in many cases they are very rigid to send people to other clinics or doctors.

Will keep writing here with anything new. Thanks again and you guys have a good day

Lynn K · « **Reply #3 on:** August 16, 2019, 01:21:15 pm »

As far as counseling that was very nice of them to offer. It seems a lot of people when first diagnosed especially as they had no idea something was wrong can get understandable very upset facing a potentially serious medical condition that they don’t know when or how they contracted, how it has effected their health and if they have put their loved ones at any risk so it can be quite an emotional roller coaster. But you are the first one I had heard being offered counseling. I think that is great they would even suggest that.

Yeah specialists have longer wait times for an appointment especially for a first appointment could be a month or possibly two. I see my hepatologist once a year and try to make my appointment two months beforehand.

Best of luck

JuliaG · « **Reply #4 on:** August 18, 2019, 11:00:58 am »

Thanks a lot Lynn

I agree it was very nice. Not everyone goes online and does a research.

Nothing to report so far. Referral from my doctor did not come trough yet and I will contact them on Tuesday again.

Have a good Sunday everyone

Lynn K · « **Reply #5 on:** August 18, 2019, 12:12:13 pm »

Really a lot of people do research online but the go to web sites with misinformation and get themselves freaked out. Also some folks have anxiety issues. But really anyone could become shaken on the news they have an illness they had no idea they had.

I remember getting a letter from the blood bank on a Friday telling me I could no longer donate blood because I had hep c. Because it was Friday I had all weekend to wonder what that was all about couldn't call my doctor to make an appointment until Monday. I guess maybe it was a blessing there was no internet back then so I couldn’t learn anything about hep c until much later. I didn’t know it could attack my liver or that at that time there was basically no treatment. I got the letter from the blood bank in November 1990.

Hope you hear back from your doctor soon seems like waiting is one of the hardest parts.

JuliaG · « **Reply #6 on:** August 19, 2019, 09:21:21 am »

I can totally see it Lynn, Getting a letter from a blood bank out of the blue would be super unexpected and tough...In my case I had to gradually prepare myself - first elevated enzymes, then Dr telling he wants me tested for Hep C, then being reactive and it took almost 2 months ( in my case because of my rejected blood) to confirm..

JuliaG · « **Reply #7 on:** August 29, 2019, 10:34:36 am »

Finally got my Dr. appointment on September 24 after battling for weeks with multiply departments.

KimInTheForest · « **Reply #8 on:** August 30, 2019, 01:44:58 pm »

Quote from: JuliaG on August 29, 2019, 10:34:36 am

Finally got my Dr. appointment on September 24 after battling for weeks with multiply departments.

Good luck to you Julia. Yes, it is a shock when you first get the news. But do know, as Lynn said, that you will be cured. Thank goodness there is a real cure these days - 12 weeks of pills, and that should be it. Hoping your first appointment with the specialist goes well.

kim

JuliaG · « **Reply #9 on:** September 01, 2019, 10:23:06 am »

Kim, thank you so much for your support. I wish seeing a specialist would be sooner but it is how it works do I just have to wait and see. Have a good week everyone

JuliaG · « **Reply #10 on:** September 24, 2019, 11:45:59 am »

Good morning everyone

Had my Dr. appointment today. Hoped to have ultrasound done but no such luck - only got a date for it - October 9. I was seeing by nurse practitioner. She explained about 6 different types of Hep C and depending on winch one I have and my insurance approval, hopefully I will be put on medication. She said she is not sure about my insurance . My husband asked how much would be to get it out of pocket and the nurse said $ 100.000 Later she checked and said that Tricare is ok and I am sure hope so:) So they had my blood work done today and that's all.

KimInTheForest · « **Reply #11 on:** September 24, 2019, 11:50:02 am »

It sounds like you are on your way to getting set up for treatment, Julia. I know it's stressful waiting to get started. But it will be over before you know it and then you will be free of this virus.

kim

Lynn K · « **Reply #12 on:** September 24, 2019, 01:23:39 pm »

Hi Julia

Just wanted to let you know that several of the makers of the medications used for hep c treatment have copay coverage coupons so you may only need to pay $5 per refill even if you have a high copay. Once you know which medicine you could google for Evan please Harvoni copay coupon

Best of luck with treatment

JuliaG · « **Reply #13 on:** September 24, 2019, 04:42:00 pm »

Thank you so much Kim and Lynn

I forgot to mention that my husband got tested and he does not have Hep C, what was great news. My son donated a blood ( he does regularly) just before I told him so he is pretty sure he does not have it either. It does not hurt to test for it though.

You guys have a nice week and I will keep you posted.

Lynn, thanks a lot for your advise about a coupon!

Lynn K · « **Reply #14 on:** September 24, 2019, 05:08:05 pm »

Hep c is not considered to be an STD by the US CDC although sexual transmission is a small risk. The risk is greatest for those with multiple sex partners, those who engage in rough sexual practices and in the presence of HIV infection. For people in long term monogamous relationships the risk is much smaller and the CDC does not recommend the use of barrier protection ie condoms as the risk for such couples is very low. We have has many here where one partner has hep c and the other does not.

Blood donations are routinely screened for hep c since a blood test was developed in 1990 and the blood supply secured. In fact that was how I and many others learned we have hep c is when we donated blood. But sure never hurts to test everyone but know the risk of household transmission is very low

https://www.cdc.gov/hepatitis/hcv/cfaq.htm

JuliaG · « **Reply #15 on:** September 30, 2019, 04:35:23 pm »

Ok, I am confused...
Just got a call from hospital. First, I need a vaccination from Hep A, its fine.

Second, she says they need to check the viral load of Hep B so they need to draw my blood again. ?? I am in shock. In June they tested me for Hep B and HIV as well as Hep C and HIV and B was negative. To answer my question she says that during Hep C treatment , Hep B might flare up" and they need to monitor it. How do I have Hep B now??

PS My mother actually has Hep B but during last couple of years she tested undetected. I do not live with her and do not share household stuff with her but she came to visit in the beginning of September and staying with us. Could I get it from her just few weeks ago?? I am freaking out. Thank you.

Lynn K · « **Reply #16 on:** September 30, 2019, 05:26:15 pm »

Here is a link about hep b from the cdc. It explains risk factors for hep b transmission

They are probably just being cautious to make sure. There is a small risk of reactivation of hep b for those who were are infected and have dormant hep b in their blood stream. Did you ever have hep b in the past? If not you don’t have anything to worry about

JuliaG · « **Reply #17 on:** October 01, 2019, 10:21:15 am »

Thank you very much for response Lynn. I never had Hep B but my mom had it and as I understand it is not curable, and though it is undetected in her system for now, its always be there. I never knew about Hep B in my system before same as for Hep C.

I did ask that nurse yesterday one more time after she called about appointment, and she said that first time around they run the blood work test and for Hep B included but it was one kind of test. In the hospital now they run tree more different tests for Hep B for me. One of them shows antibodies ( what means at some point I had it and it cleared the system) and viral load in undetected but it could change....Tomorrow I go there for that test and first shop of Hep A vaccination.
Thanks again and have a good day everyone

KimInTheForest · « **Reply #18 on:** October 01, 2019, 10:28:36 am »

Good luck to you Julia! I hope it turns out that you don't in fact have Hep B.

kim

JuliaG · « **Reply #19 on:** October 02, 2019, 02:44:53 pm »

Thank you Kim:)

JuliaG · « **Reply #20 on:** October 17, 2019, 01:42:22 pm »

Good afternoon everyone, I did not post because since my last visit for an ultrasound on Oct 9 I did not hear from the hospital. Finally I called yesterday and today received a phone call from a nurse. News are bad. She said I have a coarse structure of a liver what points out to a cirrhosis. She said that my lab results are very good so it might mean that it is very compensated since I do not have symptoms or liquid in my belly...
They will still continue with a treatment so now I should have expect a phone call from a nurse ( I hope it is about my prescription of a drug that they will choose for me)...
I am so upset...Have to call and cancel dinner plans with friends...

She also said that they will continue do ultrasound every six months to see if it is any worse and that people with cirrhosis are in increased state to have a liver cancer...

JuliaG · « **Reply #21 on:** October 17, 2019, 01:44:04 pm »

Also during my next hospital visit I hope to find out my genotype (spell) and viral load and lab results...

JuliaG · « **Reply #22 on:** October 17, 2019, 01:56:33 pm »

While waiting for my results I came across for that fibrosis calculator on foreign Hep C forum that supposedly predicts cirrhosis using a blood panel test without any ultrasound or any other tests...Never heard about you guys discussing it here so I was just curious.

https://www.mdcalc.com/fibrosis-4-fib-4-index-liver-fibrosis#use-cases

Lynn K · « **Reply #23 on:** October 17, 2019, 03:03:11 pm »

Hi Julia

Sorry for your recent bad news but just know cirrhosis is not a death sentence especially when caught early. I learned I had hep c in 1990 when I donated blood. This was when antibody testing was first approved. I was tracked closely over the years having liver biopsies every five years. I progressed with each subsequent biopsy going from minimal scarring of a fibrosis score of F1 to finally in Jan 2008 F4 which is cirrhosis. So I have been living with cirrhosis for almost 12 years and I’m doing fine.

The important thing to remember is with curing hep c your liver will no longer be under attack by the hep c virus and if you have no other cause of liver damage like drinking or being over weight you liver will have a chance to heal.

While ultrasound can “see” indications of cirrhosis like coarsened echo texture to really diagnose cirrhosis you should have either a liver biopsy or if available as an option a machine test called a Fibroscan which is sort of similar to an ultrasound and can be done in your doctors office if they have that equipment or the blood test you were asking about the Fibrosure. Those tests can confirm liver cirrhosis.

Also, one of the first tests other than liver enzymes I had that went out of normal range indicating I have cirrhosis is my platelet count. Normal is above 150 and before I treated my hep c it was around 85. Now four years post treatment my platelet count has improved to 125 still low but much improved.

Yes those of us with cirrhosis will need to be followed every six months with abdominal ultrasound to monitor for early signs of liver cancer (HCC) as because we have cirrhosis we are at an increased risk. But with cure of hep c even that risk is greatly reduced but still higher than the general population so we will need to be monitored.

Basically if you can stop the cause of your liver scarring early cirrhosis is a chronic condition that will need monitoring but your odds of living a normal life span are very good with curing your hep c.

JuliaG · « **Reply #24 on:** October 17, 2019, 05:18:03 pm »

Thanks Lynn

I was surprised that a nurse did not offer fibroscan either or other tests to confirm diagnosis. But she sounded like she was sure. My platelets count was low - 119 back in May. I will try to find out new lab results next time I see a nurse. She said that my new labs were good. Maybe it is because I stopped having wine since May.
Yes, I also need to lose 20 pounds to help my liver out a little. Is it safe to exercise ( moderately of course) without fear to hurt liver any more?
I am so glad to hear and I have read here that you are doing well

Would be great if some users with a similar diagnosis ( like Kim77) would give an update about their health. Oh well...Hope she is doing very well.
I should see a nurse again on Monday or Tuesday to get more info and get more labs done.
Have safe rest of the week and weekend everyone.

Lynn K · « **Reply #25 on:** October 17, 2019, 08:20:04 pm »

Well with the coarse echotexture along with the low platelet count and history of hep c for a long period of time it does seem likely you have cirrhosis.

Most of my doctors use MyChart a web page where I can access my lab reports any time. Many of us here either have physical copies of our results or have some sort of online access to our data so we can better discuss and try to understand what is going on. I have copies of many of my abdominal ultrasound results for my own records.

Yeah, absolutely no drinking and losing those extra pounds is great for your liver. Exercise is fine as long as your doctor says it’s ok regarding any other health conditions you may have but if your otherwise healthy getting some exercise will not harm your liver.

Here is a link from a long time blogger who had hep c about exercise

https://www.ihelpc.com/exercise-workouts-with-hepatitis-c/

Have a great day, week, and weekend.

JuliaG · « **Reply #26 on:** October 18, 2019, 11:34:42 am »

Good morning and thanks Lynn.

Few other questions. Did you ever had any symptoms? Pain or swelling or anything else? If you did, did they develop gradually or you only had them when cirrhosis was diagnosed? My only but pretty annoying symptom - is discomfort to right from my belly button, not a pain but like a feeling of something there...I hope it will go away after treatment...

Lynn K · « **Reply #27 on:** October 18, 2019, 07:50:34 pm »

Before I was diagnosed with cirrhosis I had the common hep c symptom of feeling tired.

After I was diagnosed with cirrhosis about 1.5 years later I was camping in the mountains and I suddenly noticed that I had some ankle swelling. I initially thought it was because I had slightly turned my ankle but later noticed both feet and ankles and lower legs were swollen. This was later diagnosed as pitting edema. I was prescribed a durietic, Spironolactone which I took for several years.

When I was prepping for my last Ultrasound guided liver biopsy it was noted I had gall stones which a couple of years later I started having gall bladder attacks so I had my gall bladder removed in 2012. Developing gall stones is sometimes associated with liver disease.

Other symptoms I developed I was not aware of as they were only noticeable with testing. I had some ascities only observable with ultrasound, esophageal varicies found with upper endoscopy and low platelet count found with blood testing.

Lynn K · « **Reply #28 on:** October 18, 2019, 07:55:44 pm »

Is it possible you have a umbilical hernia? I developed on as a result of my gall bladder surgery. If you are lying down and do a partial sit-up do you feel a lump form from this straining if the abdominal muscles?

JuliaG · « **Reply #29 on:** October 19, 2019, 10:24:03 am »

Tried to lay down and sit up but did not feel any lump...Thanks Lynn.
I also thought it might be gall bladder. Maybe it is liver pushing on it...

Now I am thinking that my elevated blood pressure might be a result of my disease. Read it was quite common. It also runs in my family...

Anyway I am very ready to see a nurse on Monday and do whatever they will tell me to do.

Lynn K · « **Reply #30 on:** October 19, 2019, 04:29:55 pm »

Carrying extra weight is the most common reason for high BP. That is the reason for mine anyway my BMI is 31
5’3” 175 lbs

While advanced liver disease can cause high blood pressure in the portal vein the main blood vessel in the liver this is unrelated to regular blood pressure measurements taken at the arm.

Portal hypertension caused by cirrhosis is the cause of spleen enlargement which in turn causes low platelet counts and esophageal varicies.

JuliaG · « **Reply #31 on:** October 20, 2019, 12:14:25 pm »

Thanks Lynn
It is good to know about blood pressure. At least the one I am taking medicine for is unrelated to my liver...Loosing weight would be great. Harder when you are pre menopausal but oh well...I am 5'5 and my weight stubbornly is at 163 lbs...Making myself drink more water. I just not a big fan of water and admire people who drink a lot during the day. Luckily the temperatures here in TX are going down a bit what makes it possible taking walks...

JuliaG · « **Reply #32 on:** October 22, 2019, 09:38:45 am »

Good morning

So I have gen B1, load is 1.3 bill, they put me on Mavyret, but it takes 4-6 weeks to be approved by my insurance

Got a copy of ultrasound. Liver texture is coarsened and the margins are nodular consistent with cirrhosis.

( There are no focal liver lesions. Liver size is normal. There is no intrahepatic biliary dilation.Main portal vein is potent and normal in flow directionality. Rest of organs seem normal.

I wonder why I was not eligible for Epclusa or Harvoni? ...

Lynn K · « **Reply #33 on:** October 22, 2019, 10:27:17 am »

This is a link to the AASLD (American Association for the Treatment of Liver Disease) treatment guidelines for initial treatment of genotype 1B hepatitis c in patients with compensated cirrhosis

Have a look

https://www.hcvguidelines.org/treatment-naive/gt1b/compensated-cirrhosis

JuliaG · « **Reply #34 on:** October 23, 2019, 09:21:42 am »

Thank you Lynn

Got it. It is another name for Mavyret that they use in table you provided.

All I have to do is wait for medicine to be approved.

Lynn K · « **Reply #35 on:** October 23, 2019, 10:22:18 am »

Yeah on the table they use the generic drug names not the brand names ie Harvoni, Mavyret etc..

Like Tylenol vs acetaminophen

JuliaG · « **Reply #36 on:** October 25, 2019, 10:14:14 am »

Too bad that other people do not write about their progress, hope everyone is doing just fine with their therapy...

My other nurse ( Miss Catherine, she is sweet lady) called yesterday to let me know that medicine will be delivered straight to my house instead of original plan ( hospital) and I will need to sign for it. But! Do not start taking it! Call the hospital and make an appointment with her first. Have no idea why. She already told me everything about taking it and side effects...

Lynn K · « **Reply #37 on:** October 25, 2019, 11:24:05 am »

People used to post a lot when the DAA treatments were all new. There were a lot more active folks here when hep c was essentially incurable for most people. We would detail our struggles with interferon shots and ribavirin as well as our worsening liver tests as some of us headed towards cirrhosis.

I think today with hep c now being very curable most of these types of forums have grown quiet.

Pretty standard practice to have that one visit probably to set up your on treatment lab test schedule

Best of luck

JuliaG · « **Reply #38 on:** October 25, 2019, 11:28:37 am »

Hi Lynn, ok. that is probably why people do not post. Good point:)

Good and safe weekend everyone.

KimInTheForest · « **Reply #39 on:** October 31, 2019, 12:24:37 pm »

Quote from: JuliaG on October 25, 2019, 11:28:37 am

Hi Lynn, ok. that is probably why people do not post. Good point:)

Good and safe weekend everyone.

Glad to hear you will be starting treatment soon Julia. It will be over before you know it - honestly, the time seems to fly by for those 12 weeks of treatment. And then such a good feeling after, when you get your final results, and know you are free of this virus. Whatever damage your liver has incurred can begin to improve once the virus is gone. And yes, as Lynn says, the forum was more active in the past when the DAAs were new, and lots of us were having trouble getting access because they were so new and so costly that health care systems were not making them uniformly available to Hep C patients. Hard to believe that was just a few short years ago. Things have come a long way, thank goodness.

Good luck to you on your treatment journey.

kim

JuliaG · « **Reply #40 on:** October 31, 2019, 03:01:08 pm »

Hi Kim and thank you very much!

I sure hope so

Yes, it is pretty awesome how science makes it so much easier.

I did receive my first box of Mavyret ( it is very big!) yesterday and after seeing a nurse tomorrow, hopefully will start treatment on Saturday

KimInTheForest · « **Reply #41 on:** October 31, 2019, 03:53:45 pm »

Wonderful that you are all set to start after nurse visit!

kim

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Author Topic: Hello and have some questions. (Read 29344 times)