It is a good idea to start collecting copies of your labs and reports from now on. Cal & ask for your HCV PCR (has your viral load and confirms you have Hepatitis C), Your Genotyping too (may as well while you are at it) and other recent labs you may have had such as CBC (Complete blood count), CMB (complete metabolic panel), TSH (thyroid stimulating hormone), PT & INT.
It is a good idea to have a basis of comparison from one set of labs to the next just for your own reference. Elevated liver enzymes can indicate a lot of things. There is a ratio done with ALT that is supposed to show sort of a 'ballpark' of the state of your liver but I rarely see it used in any meaningful way on here. Further and most important your liver enzymes do not really reflect the damage to your liver.
I can't speculate the cause of making errors lately but there are little things you can do to get an idea of the kind of shape you are in. Others will share how things changed for them and what they did when they were diagnosed so be sure to check back.
I am not sure where you are with all this or if you have made contact with a Hepatologist or Gastro in your area but I encourage you to get vaccinated for Hepatitis A and Hepatitis B. If you have not had a complete physical lately you might want to do that.
I can't see what I am typing so this might be a huge ramble. Others will contribute if they have not already. I just wanted to say this might be more manageable than it seems once you learn more.
Best of luck
I might be missing something since I can't read your other posts right now so forgive me advance. Do you have another medical condition or perhaps extrahepatic manifestations that prevent you from being able to function at whatever your normal level of capacity might be?
Are you stage 1 or stage 2 Have you had a biopsy? Many of us function like normal until we treat. Indeed many people do not even know they have HCV. Hepatitis C is not that much of a degenerative condition. In fact I would not even use that term in reference to Hepatitis C. It seems you are under the impression HCV is far more grave than it actually is (and can be for some folks).
Sorry in advance if your other posts indicate factors you have not mentioned in this one. Other than perhaps not drinking I am not seeing why your lifestyle would have to change in such a drastic manner.
It is one thing if you are ready to retire and move on to a different phase of your life. On the other hand, if your work performance is not impaired then off hand I am not seeing necessarily why you would have to tell employer about your HCV. I know in some smaller companies or those with a certain corporate culture it might not be easy to have privacy with personal medical history. As some people might have access to how an employee is using his or her insurance.
Many newly diagnosed have misconceptions about Hepatitis C. Over the summer an acquaintance who discovered she is stage 3 fibrosis actually started putting her affairs in order and giving her things away. Can you believe that? This was back in June and she is currently undetectable and treating with Boceprevir. I just thought I would share that. Perhaps in the mean time you can elaborate a little more about your circumstances.
There is tons of knowledge, experience and insight on this forum and you are not alone.
Dear Idyllic, thank you for posting. This was my first post. What's concerning me is that the ALT and AST levels are rising in bloods quickly. I've also been under alot of stress in my personal life as well as in the workplace. I am not sure but I think I told them of my condition because I've been making some minor errors in my work and have been feeling very tired on some days.
I am just hoping that the oral meds are out soon, or I need to decide to treat with the current treatments against my doctor's suggestion as I can't stand feeling this way - just waiting and not knowing.... Also, have the hopes that my employer will put me in a less stressful position !
Maybe a bit of a ramble - my first post says my genotype and viral load and hep c has been confirmed. Thanks for bringing up the vacinnes for Hep A and B - I've also undergone these. Just need liver biopsy I guess. I just don't want to be one of those 'unlucky' ones whose fibrosis spreads quickly !
Oh wow ~ sorry I just realized I did not welcome you to the forum since that was your first post. So.. welcome to Medhelp.
As I said there is lots of good information on here. I would not have known how to proceed without this web site. I may has well as tell you this right now so you do not have to find out on your own but: Many in the medical profession do not know all that much about Hepatitis C. Even those who specialize in HCV might be a little behind the eight ball, as it were when it comes to certain things.
For the most part Hepatitis C is the kind of disease where you have to learn a lot of things on your own so you know you are getting the right advise and doing the right things. I am not saying this is the case with you but it can happen a lot so it helps to know what is what.
Your doctor is right to assess you being a viable candidate for Interferon therapy and I am sorry it worked out that way. I went on an AD (antidepressant) prior to starting treatment since my own experience told me it was something I had to watch out for.
Anyway, there are indeed newer treatments in trials that are very efficacious with a considerably less harsh side effect profile. I fact there are many threads here on the forum that discuss them since people in the trials post. Maybe somewhere along the line you could see if you are interested in a trial. I do not want to dump all this on you at once but I thought I would throw that out there.
Best of luck
I agree with Idyllic. hep C and stage 1 or 2 of liver disease usually causes no symptoms it the vast majority of patients. That is why there are millions of Americans that are infected and don't know it.
What symptoms are you having that you think are related to hepatitis C that you find are making you think of retiring?
Do you really want to retire when you can can use FMLA to care for yourself? If you work for a large company you can take up to 12 weeks of unpaid time off to care for your health.
'The FMLA entitles eligible employees of covered employers to take unpaid, job-protected leave for specified family and medical reasons with continuation of group health insurance coverage under the same terms and conditions as if the employee had not taken leave. Company with at least 50 employees. Eligible employees are entitled to:
* Twelve workweeks of leave in a 12-month period for:
the birth of a child and to care for the newborn child within one year of birth;
the placement with the employee of a child for adoption or foster care and to care for the newly placed child within one year of placement;
to care for the employee’s spouse, child, or parent who has a serious health condition;
* a serious health condition that makes the employee unable to perform the essential functions of his or her job;
any qualifying exigency arising out of the fact that the employee’s spouse, son, daughter, or parent is a covered military member on “covered active duty.'
12 weeks is the duration of the future all oral treatments. But these new treatment have minimal side effect compared to current treatments s so you may not even need time off except for doctor visits.
All oral treatment for hep C with be available in 2-3 years. And with you mild liver disease you have many years to treat your hepatitis.
Or you can treat with peg-interferon, ribavirin and Sofosbuvir about a year from now for only 12 weeks, NOT 24 or 48 weeks.
You say your AST and ALT are high, how high?
What are the numbers?
'Serum aminotransferase levels—ALT and AST—are two of the most useful measures of liver cell injury, although the AST is less liver specific than the ALT level. Elevations of the AST level may also be seen in acute muscle injury, cardiac or skeletal muscle. Lesser degrees of ALT level elevation may occasionally be seen in skeletal muscle injury or even after vigorous exercise. Diseases that primarily affect hepatocytes, such as viral hepatitis, will cause disproportionate elevations of the AST and ALT levels compared with the alkaline phosphatase level.'
High blood level only indicate something is injuring our liver it has nothing to do with how damaged your liver is. Viral load also has no effect on how much damage has been done. It is only used during treatment to indicate how you are responding to treatment.
Good luck to you!
You don't state which symptoms you are having but I do know that many people do have extrahepatic manifestions of Hep C.
"Several studies have found that between 70-74% of HCV patients experience extrahepatic manifestations. "
I had several extrahepatic manifestations of Hep C and they are the reason I retired from my job early.
In 2011 my liver biopsy showed Grade 2, Stage 2 liver fibrosis. Yet, I had Systemic Vasculitis in 1993-94, multiple joint and muscle aches, increasing back pain, unexplained gradually rising blood glucose, unexplained weight gain, unexplained onset of asthma at age 35, dry eyes, peripheral neuropathy. I have had all of those symptoms for 20 years (asthma much longer), probably long before I had much liver fibrosis. In 2011 and 2012 I treated for 48 weeks with Interferon, Ribavirin, and Incivek (Incivek 12 weeks only) and am now cured. All of those extrahepatic manifestations have now disappeared. I feel better than I have in 20 years.
Hepatitis C can cause a myriad of extrahepatic manifestations. This link will take you to HCV Advocate's article, "An Overview of Extrahepatic
Manifestations of Hepatitis C." You will see that there is a very long list of medical problems and manifestations that Hep C can cause (besides those problems directly related to the liver).
Hypertrophic Cardiomyopathy (HCM)
Immune Thrombocytopenic Purpura (ITP)
Insulin Resistance (IR)
Lichen Myxoedematosus (LM)
Idiopathic Pulmonary Fibrosis
Chronic Obstructive Pulmonary Disease (COPD)
Membranoproliferative Glomerulonephritis (MPGN)
Mooren Corneal Ulceration
Non-Hodgkin’s Lymphomas (NHL)
Peripheral Neuropathy (PN)
Porphyria Cutanea Tarda (PCT)
Sjogren’s Syndrome (SS)
Systemic Lupus Erythematosus (SLE)
After you have your liver biopsy you will have a better idea of how urgent it is to treat. Keep in mind, no one knows when the new drug treatments will be available.
As a side note, I have a history of Endogenous Depression and I was on Wellbutrin when I started treatment. I had no problems whatsoever with Depression or mood changes while on treatment. I have been off the Hep C drugs since late August and off the Wellbutrin since January and I feel great.
DO NOT QUIT your job...best advice my hepatologist ever gave me. For one, this is expensive..you will need your insurance. Do the FMLA...are you already signed up for short or long term disability? Some people are before they were diagnoised. You can use these too after you have used your FMLA up.
Oddly, they took me off of the prozac...started treating me...and then I went on Interferon therapy and they put me back on the prozac...hmmmm.
I am 65, female, diagnosed in '96 but had symptoms in early '90's but was incorrectly treated for depression because all I wanted to do was sleep...I am now after having tried many different trials and not being able to withstand the side effects finding myself today at ESLD, stage 4 with a decompensated liver.
The whole thing is depressing as hell BUT since I am also single, have to work to take care of myself. At the time I was diagnoised I was working a fulltime job and a parttime job...have always worked 60-80 or more hour work weeks, sometimes 6-7 days...and always in high stress environments usually managing large numbers of people. But I had no choice, so I worked with my employers and doctors and went part-time, worked from home, etc. There are solutions. Did this for years and the last company I worked for for 8 years eliminated our divison to a national facility out of state and I found myself without a job at 64. COBRA is very expensive...
And I was just a few months away from Medicare...and you still will need supplemental insurance to pay for drugs...I pay over $300 a month for my insurance plus anywhere from $150 - $200 in co-pays...my ex-husband had passed away I could collect on his social security but that barely makes ends meet...I still could get a job but at that time I was waiting to start on the Invicek program, I did and then was taken off due to my liver being so decompensated and it being dangerous. And now I am doing the pre-transplant list thing. If I was employed, they would just have to deal with it but a it is hard to start a new job, as tight as the job market is, and say, well I will have to be off here,...and there...etc. So I am just trying to deal with it. You exchange one type of stress for another...expenses.
You don't need to know my whole story but there are millions of us with Hep C out here in the working forces every day struggling to get by. So here is my advice:
. Don't quit your job.You will need your insurance.
. Start the CYA process...get your doc to okay FMLA for you.
. Work gave me something to focus on besides myself.
. Get a GOOD HEPATOLOGIST
. Do the tests, follow their recommended treatments
. Keep posting on here...the people listed above and many others
have learned advice and facts for you.
. Educate yourself on the disease. Facts...the truth...is your best
ally. Go here, read posts even if the title doesn't apply there
might be info in it that will help you.
. The educated posters here will give you websites to go to.
. If you drink alcohol or smoke, STOP.
. Stop eating red meat, drink water, water, water.
. Avoid using a lot of salt (sodium) or sugars
To do something is to try....to do nothing is to fail.....there are those who say I can and those who say I can not. ///// "I can not" can not be your mantra...if you want to get past all of this or even try to get better you have to try, and try again and agian and believe in yourself that "yes, I can".
My family knows that if I do not make it, it will not be lack of effort to get past it. If I don't, they know what to put on my headstone....."She didn't go gently into that goodnight....she rocked, rocked, rocked against that dying light." A play on that Dillon Thomas song. .... Good luck in your quest for help and the truth.
heart_in_the_keyes has some good advice.
I mentioned that I retired early due to the extrahepatic manifestations of Hep C that I was having, but I would have had to figure something else out if I had not had insurance with that retirement. I was lucky and did have insurance with my retirement. As heart_in_the_keyes said, you need insurance. This disease is expensive. You mentioned reducing hours and that may be a good option if you can no longer do full time work. But I will echo heart_in_the_keyes, you need to be insured and also, try to avoid losing your retirement benefits. You will need every penny you can get when you do retire.
Thank you so much for your input. I appreciate it. The ALT levels have gone from 138 to 189 in 3-4 months time. The AST levels have gone from 95 to 156 in 3-4 months time. They have been out of range since 2009 but not by this much. The reference range goes up to 33 I believe.
Pooh - thanks sooo much for your information ! I really appreciate it :)
Thanks for your insight and sharing. I hope you get treated with a transplant soon !
Good luck to you in your quest Packedsand....my best to you too.....