HELP..am I nuts?

Newly diagnosed hep c...I do have Kaiser insurance,very expensive! Dr says I have had this for decades! Could have been....blood given at an operation, snorting cocaine, tattoo?? Have had 7 weeks now to stop wondering where it came from & move forward. 7 weeks ALT was 356 AST 120...honestly all else appears to be ok? Stopped Red yeast rice supplement & ALT now 210 AST 100...Dr. Monitoring blood & suggested waiting for new med next year. I am just so freaking tired! 3 weeks ago got a cold that wont go away & in my lungs! Going to Dr today. She is the DO. & she seems afraid to give me any med!? How can I be a Pilates person full of energy 7 weeks ago to this?? Is it in my head?? I was ok till I got news? I am afraid!! Good news is i have not had ANY alcohol in 25 years!!

Okay, Spitfire you are READY now to hear the news.

Hep C is AWFUL. Sorry. But glad you have found this forum. Welcome aboard. We are patients and loved ones of those affected with liver diseases of all kinds.

Some have alcoholic cirrhosis, fatty liver, Hep B or C and its many combinations, hemochromatosis (too much iron), various poisonings, and auto immune hepatitis (where for no apparent reason a body attacks the liver).

My partner of 30 years has had Hep C for 40 years...IV drug experimentation gone horribly wrong, but as you noted, there are lots of ways to get it. One of our posters acquired it at birth, another from a transfusion before the blood was tested, yet another from those inoculation guns the army used to use down a line of soldiers, medics got it in war zones...lots of blood all around, medical sticks, sharing cocaine straws, old tattoos practices...I guess you could even get it from home done piercing if just the right circumstances happened!

You seem to be having an active Hepatitis episode. My Mike had two bad ones. His Epstein Barr was up both times too and there are meds for that. Get it checked out.


Your DO seems a good place to start, but don't STOP there. Get a referral to a major medical center with a hepatology department. These are the docs who know Hep C best. Chronic Hep C can spend years and years slowly but surely destroying a liver.

Once a liver is fully decompensated (not working) that's it....bar transplant. There is no dialysis for a failed liver.

You need to slow down the progression of the disease if possible and cure it with a treatment if they find one that works for you. Next year may be fine as they are suggesting.

The Hepatologist will likely take lots of blood tests, do an Ultrasound or MRI of your abdomen. Generally they do a liver biopsy as well to see the actual state of your liver right now....how far has this gone? They will find out your genotype which will influence which treatment protocol works best.

They will likely do an endoscopy (through your mouth and down to the stomach). Many folks with long time Hep C get varicose type veins in their esophagus that can bleed. If you have any bleeding that does not resolve quickly, that is a 911 emergency. They band the affected veins. These veins are caused by Hepatic Portal Hypertension. The blood coning out of the liver can have its own hypertention. They generally prescribe a beta blocker for that.

As the disease progresses, if the liver is not working well, it is less able to process wastes from digestion and those wastes can cause fog like confusion and some folks also get grumpy (like my partner, grumpy and negative). Again, there are meds for that.

If you have specific questions there are some ways we can help.

At the top of this forum, the top posts have Resources for your review....good sites for lots of information.

On the blue bar above the posts one of them says SEARCH. You can put in a word or phrase -- like hepatic encephalopathy (it is the confusion I mentioned) and a bunch of older posts will pop up on that one topic. You can also put in a screen name and that persons posts over time come up...so you can track a story that is like your own.

My Mike had alcoholic cirrhosis, Hep C, a tumor until May 1, 2011. He is over 2 years post transplant and is doing pretty well. He too needs to have a Hep C treatment, because the new liver is getting damaged by the Hep C which is still in his blood after transplant.

Ask away...we are here.

Mama Lama

Sorry you are feeling punk. Just want to welcome you. Your doctor likely will order a biopsy. You do want to know your genotype, and if you are cirrhotic. There is much good news in the Hep C treatment world, and each genotype has it's own protocol. My husband treated twice, eradicated it the 2nd time. He is geno 3a, treated 24 weeks with riba/interferon each time. Sadly, his damage was done, and he just made the transplant list two days ago.

It is a good thing to get yourself educated on the disease, but live your life everyday. Fatigue is the first symptom my husband had. He went to the doctor for routine physical due to fatigue (never was one to do that much) and was DX with Hep C.

Where or how you got it does not matter. Likely, decades ago. It is a virus. Nothing different today than last year, except you know you have it ; ) Do all you can to take care of yourself today.

Hugs, themiz

hi, i also have kaiser ins, senior advantage. i just completed my hep c treatment successfully. this was my third attempt. as Themiz said, your gi dr will order a biopsy,ultrasound, and gobs of bloodwork. only after all tests are complete can you and your dr make informed choices. my biopsy came back 3-4f, which is early stage cirrhosis. my dr did not want me doing tx with today's txs because of harsh side effects. i got a 2nd opinion and started tx because i could not wait. kaiser monitored me and prescribed something for each side effect i reported. and i finished 48 weeks, and i am hep c free, dare i say cured. you have been diagnosed at a very exciting time in hep c treatment. since you have never treated your hep c, you will be eligible for one of 3 new treatments which should be available after the 1st of the year. as mamalama said, they will match your genotype with the appropriate tx. 70% of hep c patients carry the genotype 1,and the balance spread among geno 2&3.
genos 2 and 3 will start using an all oral tx combining sofosbuvir + ribavirin for 12 or 16 weeks(very exciting). geno 1 uses these two drugs also ,but adds interferon to the mix, because its harder to treat.
kaiser does a good job and everything is handled at one location. good luck going forward and please let us know how things go. you can be the first one here on the new txs
barry

Post Edited By Moderator (hep93) : 7/12/2013 5:41:01 PM (GMT-6)

Connie, the sofosbuvir literature is saying Genotype 1 still has to use the Interferon.

But yesterday at Mike's post TP appointment, they said just the opposite...sofosbuvir and ribavirin for a short cycle.

Right now I'm not going to think any particular thing is correct as the drugs are in and out of favor and nothing is set in stone. 

By the time all the static clears up around whether Mike can have treatment at all, we will continue to assume they will have this worked out...somehow.

The site has been really busy...hi everybody!!!

Carol

         connie,    there is no all oral for geno1 that has been submitted to the fda.  2015 for geno 1.   the short course of sofosbuvir + riba is 12 weeks for geno 2 and 3.

         the geno 1 tx from gilead is still 7 or 8 months away.  this tx is 12 weeks sofosbuvir+rib+int.  this tx is quite mild from a side effect standpoint.  12 weeks doesnt give the interferon enough time to cause blood disorders.  and the flu like sx are easily treated with tylenol.  sofosbuvir has minimal sides.  if your team wont use interferon, maybe they can rx you the triple tx with sofo+rib+int, and throw away the int.  the only other thing i can think of would be for your dr to contact gilead and ask for the all oral.  they have a compassionate program that gets drs the new drugs before release date for patients that cant wait.  i will try to find that site.  best of everything connie

SF

Keep posting. There are so many here anxious for treatment they will want to follow your journey. So we help you now and you can help us later!

You should be feeling less out of control this weekend!!!

Hugs


MamaLama

Well thought I just had a cold & coughed for 3 weeks. Came home yesterday with antibiotics & cough medicine with codine. Learning I am not the same person I was before 5/24/13! I have always been able to "push" myself...until now! Was in banking for 30 years & pushed hard. There is no pushing myself with this hep c. I have been social butterfly...until now! No interest in food but trying to remember to drink enough water & eat when & what I can. Thanks to every one of you for understanding! Hope the meds don't raise ALT!

Thanks again! Feels like Twilight Zone?? I know more today what one day at a time means to me. Today is a good day. Trying not to be a whining drama queen & do what I can today..so glad you are all here. We really are one tough lot! Easy for me to say cuz I am so new to this. Just feel safe bumbling my way through this here :) Peace :)

Post Edited By Moderator (hep93) : 7/14/2013 12:24:07 PM (GMT-6)

Hi Spitfire,
Welcome to HW. Lots of good people here, offering their experience. Hope to continue hearing from you.
Emma

Spitfire, so glad the antibiotics are working and you are feeling better. You might find that you need more sleep than you used to. It's just part of the hep C. Make sure you get plenty of sleep.

With this disease, it is very important to be your own advocate. Most people who post here say they've learned more here than from their doctors, especially if they're not hepatologists.

Hugs,
Connie

Howdy! GI doc emailed & said she found the trial closed. Will keep trying to do what I can! Hep93..you are so right! I don't feel so sleepy but exhausted. This has all happened SO fast, I feel like it is all in my head? Thank God for support like you folks & people that laugh when I tell them I need to lay down after I blow dry my hair:)

Hello Spitfire. I am pretty new around here as well and can totally relate to the things you are saying. I was diagnosed about 11 weeks ago and feel like I have been a bad roller coaster ride ever since.

One thing I can tell you is that these things are not your imagination, they are very real, and they didn't happen suddenly it is just that you now have a recognition of what you are feeling. I have had hep c for 34 years (assuming I got it from a transfusion when my daughter was born) and by the time I found out I learned that my liver is at stage 4 grade a cirrhosis. The truth is I am pretty darn sick and have been for some time. I did not have health insurance for 18 years and my contact with doctors was always limited to urgent care for colds, female problems etc. All of my symptoms were vague and explained away by excuses such as poor diet, not enough water, drinking alcohol, depression or family problems. Over the past couple of years I noticed that when I got a cold or flu it seemed like it took forever to get over it. This past winter I got the flu in mid December and by the end of April I was still complaining that I never got over it and wondered if I had some type of auto-immune disease. My primary care doctor thought it was depression but ran some labs just to be sure. It came back with low platelets, elevated enzymes and hep c anti-bodies.

I live in a fairly small town in IL and it took a month to get in to see a GI and we do not have any hepatologists here. My GI refuses to treat for hep c if you have cirrhosis because he says the interferon is too dangerous. I have had two upper endoscopy procedures to band severely enlarged esophageal varices. Yesterday he told me that they were close to rupturing and there was a 30 percent chance I would have died if that happened.

For now I am just trying to get my lifestyle in order, quit drinking alcohol, change my diet and take good care of myself. I am waiting to see a hepatologist in St. Louis in October to see if I can be considered for treatment of the hep c.

My goal is to never make it onto a transplant list. I know that may sound unrealistic given my situation but I am trying to be positive and believe that I can live well and stay compensated enough to live for many years. Most days it is still a real struggle to feel positive and I have to fight to keep from wanting to sit in a corner and stare into space. Some days I start strong and stay strong, others I lose my fight halfway through. Right now I am in some pain from the banding procedure yesterday so I feel like everything is falling apart again. Probably going to start an anti-depressant this week, and I made an appointment to see a therapist next week just to have someone to talk to about stuff I don't want to burden my family with. This site helps a lot too. Talk, laugh, be happy, sad or whine here. Whatever it takes to get through.