YIPPEE! Just got a call from Dr...

[Kathy73]

My biopsy just came back and I have slight liver damage!!! I know I'm in for a long, difficult haul because I'm 1a, have low platelets and a VL of 11,000,000, but at least I don't have to worry about cirrosis at this point! Thank God! And thank you everyone here. Even though you don't know me, you have been a God send.

[nygirl7]

Also Kathy you should find out what exactly the doctor means by "slight" liver damage.  Not having cirrhosis is one thing - slight liver damage is another.  For example my first doctor (not a hep doc) said that I had slight liver damage and didn't need to treat right away. When I finally went up to the GI he informed me I was already at stage 3 and really DID need to treat right away.

I would call the doctor right now and ask specifically and exactly what grade and stage you are.  You really need to know the specifics on this before you can make a good honest decision as to 'treat or not to treat'.

And someone should be able to read that to you right off of your chart - you don't need the doctor for that but I would call right NOW.

[R Glass]

To back up what Jim is saying (feel free to correct me if I am wrong). Now that you know that time is on your side, don’t jump in to anything.
Ask yourself, am I prepared for the worst if sx goes south? If not, you now have the time to prepare.
Ask your Dr. for his honest opinion on when he thinks the new meds will be released. It may be to your advantage to wait if it will cut your treatment time in half. Remember that tx can cause major and (for some) permanent damage. The way I see it is the less amount of time you take the poison, the less damage it causes.
It is a very debatable (sometime heated) issue about people fortunate to be in your condition. Both sides bring up good points.
I am not advising you not to treat. I am advising you to slow down and weigh out the options before jumping in.
In closing I am (was) 2b, Grade1/ Stage2, treated, was RVR, 3-Month Post-Undetected, and I am not sure if I made the right decision.
Whatever YOU DECIDE, we will be here for you. R. Glass

[Kathy73]

Thank you all for your sound advice. I'm in a holding pattern. I have an appt 10/2 to talk with the hep dr. I will express (in no uncertain terms) what I require in a relationship with a doctor if I am to go on treatment. If he is incapable of providing that quality of care, then he isn't the one for me.

[sunqueen]

You know, at first I wasn't so wild about all aspects of the care I was getting with a GI. I really listened to the sound advice some good people here gave me, and went to a teaching hospital for a Hepa consult. Now I know you say that you already have a Hepa, but having confidence, faith in, and a rapport with your doc is imperative. Having that other consult had such a positive impact on how I feel about my tx and on my relationship w/my treating GI. It's working out much better now, knowing that they have a co-operative relationship and are actively managing my care.

[jmjm530]

Not to sound like a broken record but if you're going to treat, you're crazy to start with a doc you can't talk to, esp if you have time on our side. Not all docs are like that even though you might have to go through a few to find the right one. I saw at least three different liver specialists before I started treating and I don't think that is excessive. Not only do you get a sense of how well you can communicate with the doc, but you also get an idea of their treatment approach. Personally, I'd limit my search only to hepatologists unless logistically they are too hard to find in your area. As to your husband "pushing" you on starting tx. Just how much does he know about HCV  and treatment? Is he going to take the shots for you?

-- Jim.

[Bobby1952]

   Are you sure the Liver damage is slight. Why do you have low platelets. I guess there are other things besides Liver damage that could cause low platelets, but I would find out what is causing it.

Bobby

[Kathy73]

Thank you all! My doctor is a hepatologist and, yes, he is uncommunicative. I've been working on getting an appt. with another specialist and will see if they are any better. I'm unsure as to whether to start treatment now or wait. My husband is pushing on starting treatment but now that I know there is no rush I'd kinda like to see what else is coming out. What with the genotype, platelet, etc.

[Kathy73]

I have an appt. with my hepatologist on 10/2. I'm going to try treatment, but with the platelet problem I don't know if I'll be able to stay on it long.

[jmjm530]

jac:  My wife has begged me not to let anyone know, even the immediate family and extended family. Go figure.
--------------
She's probably aware of the HCV stigma even within the medical community. Many have seen it   when seeing some doctors, other than their liver specialist -- and no doubt with some, even with their treatment doctor. And yes, I'd say even many newcombers here know more about HCV than your average doctor who is not a liver specialist or GI.

[Jacob43]

Depending on what is meant by 'slight liver' damage, the dr may suggest you wait. I was told there's no valid reason to be in a hurry.  I guess there's new stuff around the corner.  When.. I don't know.  Is the doc a liver specialist?  If not, wow, I'd fine one.  My wife's a nurse, and she knows very little about HCV.  She had to look up to see how it was most likely contracted.  Amazing, huh?  She doesn't have it.  We've been together 10 yrs. A lot of ignorance, even in the medical field.  Unless there's significant liver damage, it is not a life threatening illness.  Just look in archives here and other forums on effects of treatment and weigh the factors.  The more informed the less scared I've become.  Just wish there was not so much stigma.  My wife has begged me not to let anyone know, even the immediate family and extended family. Go figure.

[jmjm530]

You do understand that as a geno 1 with slight liver damage that one very reasonable option is to wait for the newer drugs showing so much promise in trial. Personally, that is what I would advise a friend or someone in my family. That said, if you do decide to treat,  you mentioned in a previous post that your doc was uncommunicative. Things tend to get worse with docs, not better. If this is the case, definitely take some time and find a doc who you can really work with and preferably a hepatologist (liver specialist).

All the best moving forward,

-- Jim

[Marcia2202]

I'm good, thanks. Wow... that must have been tough.  But worth the great result and worth having enough platelets now! So what's the next step, if I may ask.

Marcia

[Kathy73]

Thanks Marcia! I'm running on a natural high right now. I had to go through a week of gamma globulin infusions 5 days at 5 hours per day to get my platelets up just to take the biopsy. Hope you are well.

[Marcia2202]

Congratulations, that is very good news! I hope they will be able to bring up your platelets. Don't worry about VL, it is only used as a reference while doing treatment.

Marcia