Hep C and Cirrhosis - No treatment?

Hi I am 37 years old and found out in april that I have Hep c.
In July we did a biopsy and found out I also have cirrhosis. I had not started the interferon treatment because there was a study coming up in sept that my doc said would be great for me and that i had plenty of time to wait. In sept. we did an MRI. They said I have liver cancer and sent me to a surgeon to discuss my options. The only option discussed was a resection. pretty simple. My surgery was scheduled for three weeks later, I had surgery, when I woke up I had not had a resection. Instead, they did an RFA. I'm thinking what's that! I looked under the gown and saw a 13 inch insicion. OH MY GOD! I was devastated! What happened to this simple procedure? I now am suffering from ascities do to the surgery and cirrhosis. Well the team came in and explained to me that all of my liver tests showed no concern, BUT, when they opened me and saw how damaged my liver was they had no choice but to do the ablation. My surgeon said that I would start the interferon treatment two weeks following my discharge. Well, 7 weeks later my hepatologist said, sorry we can not do the interferon treatment. We must do a liver transplant and then hopefully do treatment after the transplant. My surgeon wants to put me on the waiting list but doesn't want to except a liver until my liver is close to failing.I am freaking out! Does anyone have any wisdom to share, experiences advice on 2nd opinions? ANYTHING AT ALL! I'm still trying to cope with the fact that i have hep c. Oh also, my biopsy came back, it wasn't cancer! ~~~Sincerely

[Bekka~]

I forgot to mention that i have geno type 1, viral load of 1,700,000. I have never been more than a social drinker of wine coolers or coconut rum and pineapple juice at best. No alcohol at all now! I don't do drugs. I quit smoking 8 weeks ago (yeah!) I am on a low sodium diet of no more than 2000 milligrams and taking diuretics. If there is any other info needed for someone to respond, please let me know. Thank you!

[cuteus]

if you have good insurance, I would get a second opinion. For a dr to tell a patient with cirrhosis that they have plenty of time to wait for tx, is troubling to me.

[new-sojourn]

Get another opinion.  those docs butchered you, are short on info and current treatment options.

I didn't have any insurance and believed them when the docs said it was hopeless and just go home and die.  I had a bleed that lead to icu, coma, NDE-near death experience-in Sept 12, 2001.

In Jan 2002 I traveled cross state, over a mt range, to see a specialist in liver disease.  By Apr I was in a trail so meds were free.  By May I was cl.  2 1/2 yrs ago.

If I had listened to the first doc, I would be dead.

[Bekka~]

Thank you both! I have felt so alone and not knowing what to do has really exhausted me. I changed hepatologists after surgery and he agrees to not doing treatment until after a transplant. Every time I go to the doctor or surgeon they say something different! Has anyone else had any experiences like this? Or have had to change doctors? Thanks again! I am glad to know that you both are doing well!  :o)

[mikesimon]

I have been thinking about your post since yesterday and I have trouble making sense out of it. If I understand you correctly you did not have liver cancer. Assuming that you didn't have liver cancer what was the reason for the RFA. I also believe that the majority of RFAs are done laparoscopically and less frequently through open surgery. My understanding is that RFA is a technique to ablate tumors so I wonder what they removed. I guess you could have had a benign tumor but that sounds unlikely to me especially if you have advanced cirrhosis as they have indicated. Then the suggestion ,if I am reading your post correctly, that you need a transplant but he wants you to wait makes absolutely no sense to me. If you live in the USA liver transplants don't work like that. If you qualify to get listed for transplantation you get listed at a center near you and you wait. The center scores you according to a formula which factors in clotting time, creatinine and bilirubin. That is called a MELD score and it is that score that dictates if and when you will get a liver. I've never heard of anything like this - "you need a transplant and interferon isn't appropriate but I want you to wait until you really need a liver". That doesn't make any sense to me and if I were you I would try to get another opinion as soon as I could. I'm thinking that you do not live in the USA. It just doesn't sound right. Ablation is used to treat tumors and yet you didn't have cancer. Generally RFA is done laparoscopically (remember they didn't think your liver was so bad when they opened you for resection) but decided to ablate when they opened you. I haven't heard of ablating cirrhotic tissue so I am left to wonder what they were trying to ablate. Then the transplantation advice seems strange to say the least. I'm no doctor but I would definitely try to get a better understanding of 1)what was done durring surgery 2)what they were tryng to accomplish since your biopsy was negative for malignancy and 3)what is the procedure for transplantation at the center where you are being seen. And, of course, I would get another opinion. Good luck. Mike

[Bekka~]

Thank you for your comments mike, you are as confused as I am. I do live in the US. Not sure if it is appropriate to say where since I am new to the forum or any forum for that matter. The reason for surgery was the resection due to an MRI that said: due to the reaction of the nodule during the MRI, it shows that the nodule is hepatocellular carcinoma and because it is in the left lobe and at the surface a resection is the only way to go. ( there were no other options given and the surgeon was so confident) They said it would be a very simple procedure. The nodule was 1.5 centimeters. It was after the surgery that the biopsy said it wasn't cancer and that the ablation was done do to the fact that my liver was so cirrhotic that the concern of bleeding made them do the RF ablation. I just came back from a visit with my family doctor who is setting me up for a second opinion. I don't understand what has happened to me or what is happening to me.  The waiting list situation is this: I am going on the list but my MELD # is under 10.(go figure) They said that if a liver came next month or next year and I was not in dire need They would turn it away. They thought I would be doing the hep treatment in the meantime. It was this past wed. that the hepatologist said they decided not to do hep treatment. I am waiting to hear from my transplant nurse cordinator as i write this. Thank you in advance for your kindness and concerns, i really do appreciate it! I wish I would have found this forum earlier!

[mikesimon]

Unfortunately I can believe it. These guys often act like our time isn't worth a cent. When I practiced law I had the "good" fortune to be involved in some divorce cases and believe me the doctors were the most impatient and demanding clients I ever had. I sort of enjoyed letting them wait - I hate to admit that. Mike

[mikesimon]

Hey Jim, how have you been? I stopped treatment June 27th and was clear at 4 months. I might test again next week or wait until next month when it will be 6 months post tx. I've been feeling a whole lot better lately. Thanks for asking. Have a great holiday season. Mike

[mikesimon]

I can understand your reluctance to name your center and risk disparaging that institution. It really doesn't matter anyway. Your post cleared up some of my confusion. Without knowing more I would probably break it down like this: If you are too sick for interferon/ribavirin then why not get the first good liver available? I don't know of any reason why your condition would improve without treatment so if a transplant is inevitable I would want to get it done while you are still relatively healthy. I'd like to assume that your physicians are absolutely up to date on treating hepatitis but I have known more than a few patients who were told they were too sick for treatment and went on to find another doctor willing to treat and they did quite well. Of course there are patients who definitely are not able to tolerate interferon but from your posts and the doctors statements I question whether this applies to you. It used to be thought that interferon was contrindicated in any patient with cirrhosis. I was told this in 1995 and I listened to the advice. I was transplanted in 2000. I wonder now whether treatment might have made a difference. I can assure you that had I known then what I know now I would have really pushed them to try it. My hepatitis was diagnosed following a massive esophageal bleed and a transplant was the only option presented to me. At that time I wasn't even listed because it was felt that I wasn't sick enough. Later during a routine scan a lesion was observed that they suspected was malignant. Bang - I got my liver. Like you it was shown not to be cancer per pathology. I would push the issue of treatment if only to see how they address the question. I'll post a site that deals with the issue of treatment for cirrhotic patients with hep c. Good luck to you. Mike
http://www.medreviews.com/pdfs/articles/RIGD_4Suppl1_S31.pdf

[Jim55]

That's GREAT news. I'm glad to hear that another dragon bit the dust.

As for me. Been doing great so far. Since getting off Tx I gained back the fourty pounds that I lost. I went by my GI's office to get copies of my 1yr post-Tx labs that was taken around June or July. The nurse was supposed to call and remind me of the appt. Never got the call and I ended up missing it. So, I called them and told the receptionist to just mail me a copy. Well due to the new Gvmt. privacy regulations I had to drive 40 miles oneway to sign the papers. Due to my business going into peak season I hadn't had a chance to go. I finally got (a round toit). Drove all the way up there and signed the release form. After I signed it, I told her that I might as well get them now that would save them the postage. And I'll just be damned! BAM!!!! They said I'd have to wait a couple of days to get them. That I could pick them up then if I wanted to. Can you believe that? I told her just mail-em to me!!

May you and yours have a Happy Holiday Season as well.

God Bless

[Jim55]

Good response Mike. Hows it been going for you? I'm glad to hear that you have finally beat the dragon.

Bekka~, you might want to find a lawyer that is medicaly inclined as well. This situation as Mike pointed out, sounds real fishy.

God Bless

[Bekka~]

Thank you both! I would have responded earlier but I am to emotional right now. Thank you for being straight and honest! I really appreciate it! Mike I hope I can talk to you again about your transplant experience.   Thanks again!

[mikesimon]

I'll be happy to talk to you any time - I would be honored to be of help in any way. Just post and we can hook up some way. Mike