Son starting Hep C treatment soon

Hi, my son is in an institution and has been there about 5 years. We have known about his hep c for quite some time. He is 36 yrs old. His ammonia levels started to rise about 2 yrs ago and he was put on lactalos and has been on it regularly since he started.
Where he's at they give him quite a cocktail of meds with depicote being the one that causes him the most problems They have now taken him off that completely now as his ammonia levels are getting worse and more difficult to manage. I have been trying to get his medical records so that I can see just how bad his liver is.


His symptoms are ….high ammonia levels ..confusion … tiredness … and memory problems.

He doesn't seem to be jaundice and hasn't complained about itching. His appetite is ok and he doesn't mention bruising. He has put on some weight.

Can fibrosis cause these symptoms? Would he be showing these symptoms with stage 3-4 fibrosis?

My wife went through hepC treatment 10 yrs ago with riboviron/interferon and has had SVR since.
She had stage 3 fibrosis and fatty liver...not cirrhosis as far as I know. She had hep C unkown for 25yrs getting it from a blood transfusion.
Her geno type was 3a. My son has 1a. They are recommending 12 weeks mavyret and another drug. Would that possibly be ribavirin?


I'm just kind of freaking as his ultra sound showed cirrhosis. Any comments would be appreciated.

I also post on the PC thread.

The 2nd drug is not ribavitin

your sons treatment combo is Glecaprevir, a protease inhibitor, and Pibentasvir, a ns5a inhitor. there is no ribavirin.
is your son being followed by a hepatologist? hepatologists are the most knowledgeable about cirrhosis and the complications that can be caused by cirrhosis. The only way to stage his fibrosis level is with a biopsy. An ultrasound will only show the size, surface, or a possible mass. my hepatologist told me that fibrosis can possibly regenerate, and that scarring is not likely reversible. I would question the institution, about who is overseeing his liver disease..

glad your son is undetectable. I believe your next step should be to find a hepatologist to evaluate your son. you now know he has cirrhosis, and only a liver specialist should be following him.. A ultrasound is not an acceptable test to diagnose cirrhosis. A liver specialist will perform a number of tests, to alert you if there are any further complications from his cirrhosis at this time. also, a specialist can monitor his meld score(used to measure his need for transplant) and get you to the proper transplant center, if necessary..please don't accept anything less..

The diet restrictions will help with symptoms, but not likely to stop progression..
Now that his hep c is likely gone, the inflammation that caused the cirrhosis will be gone, and that may slow any progression. Having only one symptom, HE(High ammonia level) is definitely a plus factor.
Has his dr put him on lactulose? Its a laxative, that will push food which contains ammonia through your GI tract quickly. It can really improve memory loss and further complications from excess ammonia.

PLEASE INSIST THAT YOUR SON GETS SPECIALTY CARE. Getting second hand updates from his institution is unacceptable.

stay in touch

:

A hepatologist WOULD do a biopsy, and endoscopy.He would also do a full abdominal ultrasound, or CT to look for additional signs of complications. And all cirrhotic patients should be screened for liver cancer.The dr has most likely calculated his MELD score..My guess is; that all these things have been done already..I would do whats necessary to get access to his hep dr., whether that is permission to talk to dr., or medical power of attorney. I would ask for a consultation with hep dr., to get the info on what has been done, their prognoses on the info they have compiled, and their treatment plan going forward...

The drug that the hep dr. is putting him on for ammonia is xifaxan. It is an antibiotic.. It is combined with lactulose, for a better response to HE.. The xifaxan kills bacteria, and lactulose pushes toxins(ammonia) out thru the bowel.. He needs both..

Mark,

Being an advocate for your son is sooo helpful. Most with Hep C or cirrhosis from other causes are not quite in the right frame of mind to advocate for themselves.

My partner of 37 years has been through the mill with Hep C and Alcoholic Cirrhosis...he never knew for over 30 years and then lived with the diagnosis for years more. In 2003 he did a year of the Interferon and Ribaviran...which was hell on earth for Mike, and tough on the family too. But he was not cured.

By 2010 Mike was at death's door. No one who knew him then would believe he would be alive and playing golf today, 8 years later. He qualified for a liver transplant once they got him patched up with the Lactulose and Xifaxan (big fight with insurance company as Xifaxan is EXPENSIVE and not on their formulary). As his advocate I wrote and called and fussed and threatened. At one point I wrote a letter that said something like...you won't need to cover it for long as he will die any day now unless he gets to the top of a transplant list...then he will be cured. He got the meds. I said he was just dying...did they leave wounded soldiers in the field with no morphine while they just died of their injuries from IEDs????? That must have gotten them.

Before his transplant, they found cancer in the liver. That was good/bad news. No one wants live cancer, but in transplant land, you get extra MELD points and go up the list faster. But if the tumor gets larger than 5cm, you drop off the list...

His came through May 1st, 2011.

But...big but. He still had Hep C after transplant and OF COURSE, the Hep C started right in on the new liver. UGH. Would this ever end. The new drugs were just coming on the market.

It wasn't until 2014 that he was prescribed a cocktail different from your sons...for 1a. It worked, the sides were NOTHING to deal with, and he was undetected in very few weeks. And remains so today. The docs consider him CURED. He still takes meds for rejection and has to be aware that with a suppressed immune system his is vulnerable to various diseases...markedly skin cancers and lymphoma.

Since all that excitement he has had 2 hernia repairs in the Transplant incision (it goes from mid chest to navel and off to the side...they call it a Lexus incision... He has had an aortic valve replacement with another giant scar (neck to top of Lexus scar). And struggles with Stage 3 kidney disease. So, as a 69 year old retiree, with a bunch of stuff he has dealt with, he is doing pretty darn well. His nephrologist says she will put him on a kidney transplant list at Stage 4 and he can do dialysis while waiting...He will be 70 this next birthday, but they still say he would not age out of that program.

I hope your son is treated sooner than later and that every cell not cirrhotic can do some reproducing...as I do for Mike, hoping the 2011-2014 damage from lingering Hep C, doesn't do him in again. No drugs, no alcohol, but fattly liver can do the same thing...and he has not been watching his weight lately...ooops.

Let us hear from you,

Mama Lama

Mark,
The 3.13 m/sec liver stiffness score, is considered cirrhosis.. It is a scan used to stage liver damage by SWE

The ultrasound shows coarse texture (liver damage)
16.6 cm is enlarged liver (12cm is average).. typical for hepatitis
blood flow: hepatopetal is normal flow into the liver,and hepatofugal is abnormal flow away from the liver

The bloodtests you should be looking for are: platelets (found on the CBC), bilirubin,INR/PT, creatinine, albumin, and enzymes (AST/ALT/ALP), and sodium found in electrolytes..
These tests will help in the DX of cirrhosis, an are necessary to calculate his meld score..you can post them here if you are comfortable with that..

Hope you have been successful in getting contact with his hep dr..

PPM. you stated that if I could post my sons CBC results that it would be of some help. I was able to access his most current test results.

WBC
15.32 K/uL
4.00 - 11.00 K/uL
H
RBC
5.41 10*6/mm3
4.60 - 6.00 10*6/mm3

Hgb
16.8 g/dL
14.1 - 18.1 g/dL

Hct
46.9 %
43.0 - 54.0 %

MCV
86.7 fL
80.0 - 98.0 fL

MCH
31.1 pg
27.0 - 33.0 pg

MCHC
35.8 g/dL
32.0 - 36.0 g/dL

RDW
13.5 %
11.0 - 15.0 %

Plt
188 K/uL
140 - 425 K/uL

MPV
10.6 fL
7.0 - 11.5 fL
I'm not sure if these are helpful but I hope they are.
Thanks
Mark
Also here are his basic metabolic test scores
Na
140 mmol/L
135 - 148 mmol/L

K
4.2 mmol/L
3.5 - 5.1 mmol/L

Cl
108 mmol/L
98 - 111 mmol/L

CO2
23 mmol/L
22 - 32 mmol/L

BUN
15 mg/dL
8 - 24 mg/dL

Creatinine
1.47 mg/dL
0.60 - 1.50 mg/dL

Glucose
101 mg/dL
65 - 100 mg/dL
H
Calcium
10.9 mg/dL
8.6 - 10.6 mg/dL
H
GFR
54.1 mL/min/1.73 m\S\2
>60.0 mL/min/1.73 m\S\2
L
For African-Americans, multiply the calculated GFR by 1.21.
Anion gap
14 mmol/L
5 - 16 mmol/L

Post Edited (Artist Mark) : 3/10/2019 1:50:56 PM (GMT-6)

ppm guy,
Thank you again for your response.
I just got off the phone with my son and he had just returned from seeing his dr.
I was able to glean some more info as his condition becomes more clear. He has stage 3-4 cirrhosis. His MELD score went down from 17 to 12. The dr told him the MELD score can go up and down. He has been Dx with encephalopathy but I dont know to what level. He is being scheduled for an EGD and will be seen again in 6 months. They will also be doing ultra sound and blood work before his next apt. He shows no ascites at this time but does have edema in his legs and feet. The dr. put him on lasix for that. His billirubin was normal. Ryan told me that his amonia level has been going back up recently. He is taking rifaXIMIN and lactalose and is pushing liquids. He is on a strict low sodum,low protein,low fat diet.
All this info is very discouraging to me. My son is only 36 yrs old. When he was admitted to the hospital 5 yrs ago we knew he had HepC. We have had to fight for those 6 years to try and get him treated. In fact back at that time he saw this dr and was prescibed Harvoni. He did not have cirrhosis at that time. The hospital,(a state run facility) would not ok treatment and it wasn't until this last Nov that they finally treated him. I can't help but think that if they had treated him back in the beginning that we would be in a vastly better position then we find ourselves now. I don't know how he could have gotten so much worse so fast. My wife was diagnosed with Hep C 25 yrs after having a blood transfusion.... after the birth of our daughter. She didn't even know she had it,but she lived with it for those 25 yrs. She was dx with fatty liver and fibrosis and has been undetectable since treatment. My son is only 36. He's been incarcerated for much of the last 15 years, and he has cirrhosis. It doesn't make sense to me that he has progressed at a much faster rate than my wife did.

I appreciate the info and support that you have provided us. I will continue to reasearch as much as I can and to educate myself more so that I can be a better advocate for my son.


Mark