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Just diagnosed HCV and cirrhosis

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Posted 5/15/2013 2:26 AM (GMT 0)
Hi. I'll try to be brief here, but here is a little about me. I have have had very limited access to health care for the past 15 years due to no insurance. We finally were able to get insurance this year and I went for an initial visit to find out about the insurance sponsored smoking cessation plan and I have an incarcerated hernia that I wanted to have repaired. I mentioned being very depressed about weight gain this past year and frequent fatigue. The NP referred me to a general surgeon, prescribed wellbutrin and recommended counseling. She said she would run a blood panel just to check for anything else that might be causing fatigue. I got a call that my liver enzymes were high and platelets are low. She wanted me to go for liver function test. Next call, I tested positive for HCV antibodies and they wanted me to go for HCV confirmation, ultrasound, hematologist and GI. Quit drinking and no asprin etc. I am in shock. My mind flashes to June 5, 1979, the day after my daughter was born and I had a transfusion. 34 years later, and all of a sudden this sneaks up and knocks my world off axis? I just seems unreal.

I just received my test results today and it is positive, which didn't surprise me but I guess I was holding on to some hope that this was all just a mistake. I had a follow up with the hematologist today for more blood and CT results and all he could tell me is that I do have cirrhosis and enlarged spleen which is causing the low platelet count. My first appointment with GI on the 31st.

Here is what I know. Don't understand all this, so any help would be appreciated:
AST: 126
ALT: 99
Platelets: 92
Total Bilirubin: 2.0

US shows fatty liver, mild ascites

Results I got today say "Your HC Genotype: see below" but there is no indication below of what it is is.
Hepatitis C, Quant/RNA (Viral Load):
HCV,RNA, PCR 554,509
HCV, RNA, QN, PCR 5.74

From what I am reading the cirrhosis is decompensated as I have many symptoms of late stage such as ascites, spider veins, pain in abdomen, severe itching, mottled palms. I am very fatigued, but no loss of appetite or weight loss. So does this mean that treatment for HCV is out now? I know there is no answer to how long I have to live, but is there any treatment at all or just wait for the end? 2 1/2 weeks seems a long ways to wait to get some answers and I am barely able to function at this point. Dealing with family and work when all I can do is fight back tears is very difficult. Any advice would be welcome. Thanks!
Posted 5/15/2013 2:54 AM (GMT 0)
Dear Doni,

All is not lost...though you have been diagnosed with a very serious disease.

And liver disease is not for wimps!

The folks on this forum are patients and loved ones of those affected by various liver diseases.

My partner, Mike, has had Hep C since 1969 or 1970. There are many ways to get the virus in your system...transfusion before the blood was tested for it, needle stick or iv drug use, tattoos before the parlors were better regulated, folks during the Vietnam war were inoculated with guns used down the line...so they got one HCV GI and they got them all! And there a lots of other liver diseases too!

What is done is done. The disease has been running its course and just now become symptomatic....

Mike made the mistake of continuing to drink alcohol after his diagnosis and made himself sicker, sooner.

But it took from 1969 - 2009 to make him sick enough to get to a doctor. He did try a Hep C treatment in 2003, but that didn't work for him and made him quite sick with the side effects. And by the fall he was so sick we thought he would die....every bad side effect in full bloom. But he didn't die. He got into a transplant program at U Miami/Jackson in Miami FL and was transplanted in May 2011. He is doing pretty well now....not perfect, but pretty well.

And of course a new liver only buys you time...cause you still have Hep C. Folks with other kids of liver disease that are transplanted are more out of the woods as their disease process is GONE. Mike's cirrhosis is gone, but not the evil Hep C.

The appointments you have set up are the right ones.

The labs you have show damage to your liver. You will need to have a liver biopsy and an MRI before they can tell you for sure how bad it is. Your AST/ALT are high, but not through the roof. Even after transplant, my Mike's HCV Viral Load is over 5 million like yours! And he is WELL. His AST and ALTs are about the same also. Your billi is elevated also...which can be a problem. But one of the members wives report her hubby's Billi is over 30 this week! Now that is HIGH.

The "good news" is that for the last 20 years they have been doing research like crazy to find effective treatments for Hep C. In the early days, the patients were as sick as if they were on the worst chemo and it only worked SOME of the time. The new treatments, are shorter and more effective. They are looking for ones less toxic to the patient. I would think your doc will want you to get into one of those programs.

Right now, Mike can't do another treatment because he isn't strong enough after transplant and his kidneys are not so great either....he waits. It takes a long time for Hep C to do in a liver....so he has time I think.

I don't think it is time to call the undertaker. It is time to take stock, eat healthy, stay off ANY alcohol...Mike won't even use mouthwash with alcohol at this point!

There are some good links in the Resources folder at the top of this forum and we have a lot of members. Ask us anything...Tell us how you are feeling...we are here..and will try to help.

I usually helps to know you are not alone in this. Read the other posts...we are a good bunch!

Best,

MamaLama from Florida
Posted 5/15/2013 3:11 AM (GMT 0)
Let me welcome you, denverdoni, I am themiz.
My husband, themister, found out he had cirrhosis through a routine physical. That was 2005. He since went through treatment for Hep C twice with similar numbers as yours. The 2nd time worked, but he is dealing with end stage liver disease. Basically, your doc's will advise treatment if they feel it is appropriate. It is brutal, but doable.

A transplant evaluation is where we are...some 8 years after he was where you are today. Don't give up denverdoni. There is much life left in you. IF you can treat and obtain SVR, your chance post transplant is better, in my opinion. However, several good people on this site have been through transplant and still had Hep C. Some had liver cancers they had to treat first. More folks will come along to welcome you. Let me just tell you not think you are done, or disposable.


I am the "caregiver" and my husband is at the "pretty darned sick" stage. His MELD score was 14, he has had some hairy scares and hospitalizations. We have changed a lot of our life to accomodate his disease. We are closer than ever, but we are fighting for him to be the survivor. Just don't give up on yourself.

You had this for probably...decades. The only diff' now vs. two months ago.... you know now.

Hugs...oh hell, BIG hugs. I will watch for your posts. themiz
Posted 5/15/2013 3:34 AM (GMT 0)
Thanks MamaLama. I am reading everything I can, which may or may not be good, but I want to be as well informed as possible. Right now I feel like my head is going to split wide open from stress of waiting to hear exactly what I am facing.

Then there is guilt. I feel stupid that I never found out about this because I never went to the doctor because I didn't have insurance. If I had known about this a long time ago I never would have drank alcohol and would have taken better care of my diet etc.

I am scheduled for the hernia surgery and gall bladder removal on the 22nd. The hematologist said it is more risky due to my diagnoses and my platelet count so now I wonder if I should reconsider or postpone until after the GI appointment. The hernia is incarcerated and causing some significant discomfort, I go for pre-op appt. tomorrow and guess I will decide then.

I think the hardest thing is dealing with family members who keep telling me that they are sure the doctor will fix me right up in a couple weeks and then things will get back to normal. I know this is not true but what good is it to yell at them and tell them they are just in denial. My husband is aware and understands what we are facing. He is depressed but promises to be supportive and help me through whatever I decide I need to do. We have been together 36 years and I know this is going to be almost as hard on him as it is on me. I'll be around here a lot I am sure because I am just at the beginning of this long road. Look forward to getting to know some of you who have experienced this.
Posted 5/15/2013 3:37 AM (GMT 0)
Hello to you too themiz! Thanks for the words of encouragement.
Posted 5/15/2013 3:42 AM (GMT 0)
Hi dd,
If your liver isn't cirrhotic and you live properly (see above - ML) you are likely to get to take one of the new treatments for Hep C. I went through ESLD, then a transplant and twice did the interferon/ribavirin treatment. I am 16 months undetectable now. In the next year or two it appears there will be at least one treatment that knocks out the virus for most patients.
Posted 5/15/2013 6:58 PM (GMT 0)
         hi DD,    i think you are doing great.  my family members reaponded the same way.  i ended up moving in with a long time friend, who like your man only wants to help.  it makes tx more bearable to have that person who feels your pain and anxiety. 

        good luck at your next dr appt.  hoping for a favorable bx for you.  get back to us with your bx results

                                   barry

Posted 5/15/2013 7:53 PM (GMT 0)
         one more thing to share with your doc.. i ran across a study going on for cirrhotics that is recruiting in aurora colorado.  it is for cirrhotics with portal hypertension with or without decompensation.  its all oral(no interferon).

           contact;  jonathon kong

           e mail;   [email protected]

           trial#;    nct01687257

              hope this is allowed             barry

Posted 5/15/2013 8:49 PM (GMT 0)
I love it Barry you're always pushing the boundaries..
DD ok stop thinking about the what ifs.... take a deep breath.. thank goodness you caught it now. Yes there are treatments.. stay focused on work and life.. Find out the true pic through doc etc.. read all you can.. on the tabs up above is a lot of information. Read the old threads. Tomorrow is your focus. Yes your partner will have a tough road but hey you have a partner. That good news. Take a deep breath and take it one step at a time. You can get your head on tilt if you keep going back and blaming yourself. Center yourself then move forward.
Welcome to the Forum.. yes, we do care.
Sandia
Posted 5/17/2013 1:25 AM (GMT 0)
Welcome, Doni. I was diagnosed with hep C in '93. There was no specific test for it prior to that. I know I contracted it in the late 60s. I tried the only treatment available at the time and it caused my white count to drop so low that I was taken off by the doctor.

After your GI referral, depending on the results of the biopsy, I think you should request a referral to a hepatologist (liver specialist.) I lived okay with hep C until 2005 (except for such exhaustion I could no longer work full time.) Then an annual ultrasound showed a huge cancerous tumor (filling the entire rt. lobe and metastasized to the inferior vena cava.) I went to Mayo, was treated, had that right lobe removed. I was okay for 4 yrs., then developed a tumor in the left lobe, requiring transplant. I was on the "list" for only 3 mos. before I received my transplant in Oct. '11. I still have hep C and treatment has been placed on hold for now. I've had some problems since transplant, but I'm still here. I've had 8 more years than I should have had.

I can't add more to what others have said regarding your labs.

If you're doing research, please check out Hepatitis Resources on this forum, pinned at the top. Lots of good info in there. Otherwise, don't troll the Internet except perhaps for the American Liver Foundation.

Hugs,
Connie
Posted 5/17/2013 10:40 AM (GMT 0)
Hey DD
I hope all is well with you today.I agree with the reply above about trolling the net for info. It just makes me even more depressed and dreading treatment that much more after reading people's horror stories. It sounds like we're pretty close at this point in time with our diagnosis so I know how your feeling right now. Like I've been told "it's not an immediate death sentence" and as you probably gathered by now you can live with this disease for many years to come. Good luck bro and let me know if you need to chat or anything.
Posted 5/17/2013 5:54 PM (GMT 0)
Thanks for all the good advice. It does help to hear from those who really understand what I am feeling right now.

My surgery was canceled after the surgeon saw the CT and most recent labs. He just said it is too risky and would have to refer me to someone else. I decided that getting to a hepatologist and getting some of my questions answered are more important right now and I can deal with the hernia and gallbladder when I have more info.

Barry I am not in Denver anymore. Sure wish I was. My husband was laid off almost 2 years ago so we moved to IL because I had a job offer here with family. My 3 kids and 6 grands are all back in Denver and I will eventually go back there. Of course Mr. DD is working now and has the insurance so we are stuck here for a while anyway. :(

I have an apt with GI doc here on the 31st. This is a small town and there are no hepatologists here so I called to see if I can get in to Barnes Jewish/Washington U in St. Louis. They are waiting on my medical records and will let me know how soon they will see me based on what they find. I know that might be a longer wait but I think I will have more options and better care. Just waiting now, and that is the hardest part.
Posted 5/17/2013 8:08 PM (GMT 0)
Hi! I'm sorry you are having to deal with this right now. My dad was just diagnosed with ESLD in March-not a smoker/drinker-took us all by surprise! But there wasn't much time to dwell on it, we had to be proactive. Get a *GREAT* GI. My dad's was terrible. Awful advice. He was seen for a Transplant Evaluation last week and met with a wonderful liver dr. His MELD score is a 20, same as it was when he was diagnosed though his ascites and pleural effusions have gotten worse. He hates his medicine, he hates his diet, he doesn't understand why this happened; but he's fighting it and determined to fight it until there's nothing to fight. We're currently waiting for The Letter (the Board's decision whether or not to take my dad on as a liver transplant patient). It's scary.

Everything seems scary about this. My dad has varices, but like you, surgery isn't an option right now-even just going in to band them, because it opens the door to infections. He also has an enlarged spleen, fatty liver, cirrhosis, Hep C (best guess is he got it in the military because they didn't used to sterilize needles) and low platelets. I discovered this whole thing because he was falling a lot and seemed confused-I thought he was having neuro problems and took him to ER. It was HE-the ammonia was so high in his system he appeared drunk (and again, he never touched the stuff) and caused dizziness. His medication helps him immensely now.

My best advice would be to use this board as a resource...I've spent hours going through threads...and often times crying. But education is important. Research. It's good to know what your talking about to the doctors. I didn't even know what UNOS was at first! The resources pinned at the top of this page helped me immensely. Again, find a great medical team-Wash U is good; that is one of the hospitals I looked at for my dad but he needs a liver and the waiting time is much quicker where I live now. My dad has many days when he feels crappy and snaps at me-I assume it's a combination of not feeling well/anxiety/some depression. I would use these boards as a tool too because people have been there and get it.

I am so sorry you have to deal with this. And you're right-so far, waiting has been the hardest part after the diagnosis. Waiting for a diagnosis, waiting for lab results, waiting for doctor appointments, waiting for evaluations, waiting for a liver...but it's out of our hands. You are in my prayers, please let me know if you ever need to email. I hope you get into Barnes soon!
Posted 5/17/2013 9:36 PM (GMT 0)
Jmom,
Not to nit pick, but the military didn't use unsterilized needles, they used guns that literally blew the meds through one's skin. There is speculation that people did become infected that way, but I have yet to hear of proof of that. There is a higher percentage of people with Hep C who served in the military, but it could have been from haircuts or other means.
Posted 5/18/2013 2:16 AM (GMT 0)
David,

I stand corrected. My dad did say they lined them up and immunized them as you said. I am far from an expert at any of this, I just know that's how his doctor said he likely ended up with this. But it doesn't really matter how at this point in time, just trying to move forward and get support/support others :).
Posted 5/18/2013 2:02 PM (GMT 0)
Jmom,
You're correct - it doesn't matter how any of us got Hep C. What counts is trying to conquer the disease.
Posted 5/18/2013 5:48 PM (GMT 0)
Doni, you made a smart move in applying for acceptance to a hospital with hepatologists. You want the very best care you can get. Is it a transplant hospital? (Not that you are anywhere near that right now.)

Hugs,
Connie
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