Hi all, I posted Friday and didn't get back to the board till yesterday. I answered everyone but it's so far down the board now, I didn't know if anybody would even know I'd responded. Anyway, thanks for all your welcomes and posts. I have a couple questions. Do most of you have hepatologists or GI docs. My husband was diagnosed with hep C last April, 2B. His GI doc gave him his BX results but never made mention of stage or grade of inflamation. Until I was diagnosed just this month, I didn't even know what grading meant. I'm still not crystal clear on what it means or how it impacts the stage of liver disease. My husband was supposed to start treatment April 1 but decided to put it off until May 1st. His treatment meds are in the frig waiting to go. His doc doesn't even know that he's doing this. He hasn't gotten a baseline viral count since he was initially tested last April. I would have thought his doc would have requested more recent blood work before starting treatment. I noticed nygirl asked someone if they were getting regular CBC's. I don't even know what a cbc is & I'm quite sure my husband's doc hasn't mentioned getting them and he thinks my husband is currently undergoing treatment. Anyway, I chose to go to a different GI doc in the practice. My doc isn't going to report bx results in grade or stage either. I can tell by preliminary conversations. Is this to be expected or should I be looking for a hepatologist? BTW, hubby is perfectly fine with his GI doc so that's his choice.........Thanks everyone. Char
Pretty says: My doc isn't going to report bx results in grade or stage either.
Since it sounds like you're going to have to change doctors, why not go to a liver specialist (hepatologist). In general, they have more experience treating hep c and will serve you better.
HI! I go to a GI who is doing just fine for me. He's willing to talk about different options and prescribes rescue drugs and stuff so I am very happy with him (and I used to think he was a moron LOL)
You have the right to ALL of your medical records - they are YOURS. I get a paper copy faxed to me ASAP - like immediately as possible of every single test I get done and put it in a binder. It's essential for YOU to understand what is going on inside you because NOBODY CARES MORE ABOUT YOU IN THE WORLD THAN YOU!
I advise for you to call the nurse and ask them to fax over your biopsy report. THE BIOPSY RESULTS ARE THE MOST IMPORTANT PIECES OF INFORMATION YOU CAN USE TO DETERMINE IF YOU SHOULD TREAT AND EXACTLY WHERE YOU STAND IN THIS DISEASE!
I would not consider treating if I didn't know. For example I am a 2/2-3 (just turning on to 3 so technically a stage 3 but I wont give in) so I dont have any time to wait for new drugs to come out in the future. If I were a 0-1 or something I might have time to see what comes up and postpone treatment if I wanted to. But as a "3", genotype 1A and 1B I cannot wait - and I only know that cause of the results.
CBC: It's pretty much a regular old blood test - every time you've gone to a regular doc and given blood that is what it is, it's just the fancy name for blood test. It's CRUCIAL for you to have them done all of the time to see what's up.
your viral load isn't REALLY all that important as these other things.
The liver enzyme tests (ALT and AST) along with your genotype and biopsy results are what will determine for you if you need to treat immediately or not.
It's like putting together a jigsaw puzzle - you can't see the whole picture by just looking at the outside frame. They are the inside pieces.
Like you know it's a puzzle...but you need to see the picture inside to say of what.
Let me know if you have any questions - the guys in here are SO GREAT and never have ANYproblem trying to help out someone who is confused.
We ALL were at one time - the more you learn the better!
Your biggest concern should be competence. Get references. My doctor is a hemotologist who specializes in Hep C. You have to be comfortable with whoever it is and what they are telling you. Sorry I missed your tread before. Good luck to you and hubby. Dale
When a bx is done, the pathologist will put a grading on the report. So, get a copy of that.
Viral load- I think it is important to know a beginning vl if, for nothing else, to determine if you achieve a two log drop by the appropriate time.
It is also important to find out who will prescribe the rescue drugs ahead of time. IN my case, once the doc agreed I needed them, it was another referral that took another five weeks. You want to be able to start right away.
as suggested by all the wise ones, get copies of ALL your blood work and tests results. The pathologist does grade and stage the tissue sample, so it is in the copy of the biopsy report. Secure a copy from your dr or the facility who did the procedure. You read it, research the results in janis7hepc.com and after learning what everything means and how it might impact you, decide on tx or waiting. Do not go into tx not knowing what things mean. Tx is tough and doable but you need to know what to expect.
Thanks everyone for all your replies. I'm going to look into another doc, if possible, a hepatologist.
nygirl, so you're almost a stage 3. Do you know your grade? How does the grade factor into the bx results? I noticed you were undetected by week 24, (if I read your earlier post correctly) Is this the first time you've treated? It seems to me that I've read numerous places where the stage can be reversed or regrssed through treatment and taking care of ourselves, right?
ALT and AST - is normal 40 - 50 or below? I was panicked when I learned my vc was over 5m - Now, I'm getting it that that's not a sign of damage, just of probability of svr at 12 or 24 weeks. Correct?
missmiss, thanks for your welcome and for the heads up about the rescue drugs. That seems really important to me. When I've heard you all talk about rescue drugs, I've seen Procrit mentioned. Is that the main one that you were referring to?
Well hello everybody. Hope all of you are doing well.
I just got off the phone with my boss, told him I would be back in next Monday morning. I have got to give this procrit time to work. I know I will not be 100% or anything like that, but I will probably be better. If I had a job that was not running all day, lifting, pushing, moving, non-stop. maybe I would get through it, but it is just so physical, that I am making myself sick, and then throw into that mix, I am feeling guilty about it, and Im still not doing myself any favors. Just talked to my hubby as well, who really went nutz telling me to "Stop worrying about that f$$#@#g job!!!! If it falls apart, it falls apart!!!
I get myself real stressed sometimes, Im a worry-wort, want everything to be just right, ya know?
You and everyone else have mentioned getting copies of everything. That's exactly what I'm going to do for myself and my husband, who, I might add, continues to drink like a fish. His doc told him he had very little liver damage - nothing specific, no info about grading or staging. In hinesight, his translation of the bx seems very vague. I do want to know exactly what I'm dealing with. I'm 1a, hubby's 2b, which is why I think he's not taking it as seriously as I am.
Well first off don't worry about your ALT and AST too much - mine were in the 200s before I started treatment and then in a few weeks only they went zipping down to like 16 & 20.
You see what happens is when your liver is being damaged and the cells are being killed (from hep or alcohol or something) when the cell dies it releases this enzyme. So that is what the number is reflecting - how much of that you have in you. So the lower the number the better. However 40 is not dreadfully high at all!
I am Grade 2 - Stage 3. I have two different genotypes of the disease (lucky me I was always a great partier the "more the merrier" type girl so I guess I carried that straight in to getting disease too! ;) so it was hard for me to get to the Undetectible - and after failure and failure I was so SURE I wouldn't get it that I did LOL.
I really think at some point, we've done all we can and just have to let it GO and let our bodies do it on their own. But me...Miss Stubborn well I was going to will it away :)
Did you ever go to this website? http://janis7hepc.com I am not so great at explainning things and the Janis site has the answer to EVERY question you might have pretty much and is on the money. It helped me understand so MUCH better and I was glad to learn all I could. I printed it all out and studied it when I first started out LOL (sort of anal I guess!)
This link http://janis7hepc.com/learning_about_liver_fibrosis2.htm
has info on fibrosis being "reversible". I've always figured worse case scenario if I could get that stage down from a 2/3 to a 1/2 then it would be worth doing treatment you know?
This link has all the info on Grade and Stage.
I hope that they help you understand stuff better. KNowing what you have to deal with with all of this...really DOES help.
PS Viral load isn't really as much of a predictor of SVR as your GENOTYPE - ie: 2s supposedly have an 80% chance and 1s a 50%. I've seen people like me with VERY LOW starting vl's (only 568,000) who had a TOUGH time getting to UND while others with VERY HIGH did it in 4 weeks.
Yes, get copies of all tests. My insurance co. wouldn't pay for meds b/c they had no RNA test, and neither did the Dr, lab somehow misplaced the results. Thankfully, they faxed one to me as soon as they had the results, so I had to fax it to my Dr. and insurance co.
Do you think it stange that my GI has not ordered a BX? I had an ultrasound and he said I have a fatty liver. Said to lose 15lbs, and that may be the problem. Does TX help fatty liver?
my personal recommendation would be to find a hepatologist. find someone who specializes in your ailment, and someone you can be comfortable with and converse with freely. make sure that this doc will share all of the test results with you also, and keep you educated on your condition. if you walk in there and he acts like he only has 7 minutes to work with you, then it's time to find someone else.
I don't want to offend you with this comment but, if your husband is still drinking he shouldn't be allowed to go on TX. There's enough of us out here that don't drink or use drugs and have trouble paying for the drugs we get.
Now we have someone whose going to waste the drugs they get by continuing to drink during tx. I'm not even sure you can get SVR if your still drinking. At the very least he'll continue to kill his liver. And guess what I bet taxpayers will pay for the liver transplant.
There are a few dr's that will say after you are SVR you can indulge occasionally. I would like to see ONE dr that says "oh that's fine. Continue to drink alcohol on TX".
Mrs O said: "I'm not even sure you can get SVR if your still drinking. At the very least he'll continue to kill his liver."
You're really right - if someone is still actively destroying the liver what is the sense anyway...to buy more drinking time? I quit and am glad I did. I don't think it makes any sense at all and really DO BELIEVE that drinking can completely cancel out the effects of Interferon an hour an ounce for each that you drink.........so during that time the virus can replicate so why even BOTHER to.
It's something that needs to be explainned to but right now she probably doesn't have a clue about it.
I'm not talking only "morally" here because certainly it's not my place to jump on a table but really why bother if the chances of it working are slim and the liver is not going to magically "get better" or "reverse in fibrosis" if someone is actively drinking it ain't gonna happen.
My doctor told me NOT TO DRINK AT ALL ON TX - THAT the virus could replicate during that time as the alcohol would cancel out the Interferon. He said later on after tx I could have a glass or two of wine a YEAR but that I still would have LIVER DAMAGE and it wasn't the wisest thing.
Treatment is hard - if it ain't gonna work or help the liver it really doesn't make sense. I've never heard a doctor say it was ok to drink at all either.
LOL fudigcles don't COUNT as water and they don't make you pee like crazy - gosh everybody knows that! :)
You're right I remember knowing a friend (my friend who ended up transplanted who never "really" quit and he ended up with liver cancer how sad for him but what a WASTE of a liver that someone could have used) and he had to be pee tested for a certain amount of time before they would let him do any tx of any type.
I just don't understand why you'd want to bother really if you are still drinking actively. Not talking about one drink a year or something - which while not great I guess can't kill you or anything but......why bother treatment is too DAYUM HARD to bother if you aren't going to get better.
Make sure your husband knows - lately we have had quite a few Geno 1s who HAVE completed with UND/SVR and a whole bunch of 2s and 3s who have NOT achieved the goal or relapsed.
It's not REALLY about what geno you have - he needs to realize he has to take it just as seriously as you are! Just because his treatment would be shorter does NOT mean REALLY it's guaranteed by ANY STRETCH OF THE IMAGINATION!
Otherwise my friends in here who relapsed or stopped responding would all be cured right now - and now they are looking at retreating instead.
It's a serious thing treatment, you have to go into it with a real determination.
At least YOU get it that is one out of two and maybe eventually he will see and follow YOUR example! I hope!
The Doc I am going to on the 16th of May is listed at this link. His last name is Patel
He has FRACP listed after his MD. Do you have any idea what that means?
Mr. Sockert, where did you get the idea that my husband was drinking while on treatment? I'm not offended. A little confused maybe. Perhaps I wasn't clear. My hubby has NO intention of drinking while on treatment. He hasn't yet started. He won't start treatment until 2nd weekend in May. That being said, I have read numerous articles and studies that indicate a person should ideally be drink free for 6 months before starting treatment. We have gone round and round about this. He is an alcoholic and no matter what study I produce, there is some reason why it's ok to drink or he's doing to only drink on weekends, yada yada yada. I've heard it all. My purpose in sharing that wasn't necessarily to talk about him. It was to ask about using a GI doc as opposed to a hepatologist. I'm not particularly impressed with his GI doctor so far and was simply asking questions about things his doctor is doing and/or not doing because I have just learned that I have hep c as well.
Can't add anything that isn't here already, but just wanted to say hello, and good luck in your voyage of Hep C discovery, it is amazing how quickly you become extremely knowledgable, mostly thanks to the forum members in my case.
Lots of luck to you and your husband.
I posted a message to you somewhere down the board, then realised that you may never actually read it!! It is here;
"Here is a list of some of the terms we use / open post for all - Mister Beagle Bailey 04/25/2006"
It is regarding thyroid, which I believe you have been having probs with too, if you get chance to respond that would be great
Hes a hepatologist from duke. Looks like you in good hands. Id give him a go and see what you think. But id feel good about starting out with him. Next just get your questions in order, but first the bx. Good luck going forward, you'll be fine.
If it were me, which actually it was, I'd go for the hepatologist. That's a GI, who specializes in liver disease.
In my case, I ended up (by good fortune more than common sense) with a clinic consisting of about 8 hepatologists. Hep C is far and away the bulk of their practice. This has worked out great for me.
There are many, many aspects to this that are out of your control, and we have to accept that. Choosing the right doctor is one of those things that not only is within your control, but you owe it to yourself to do your due dilligence, IMHO.
I would also see what type of access I would have to the Docs and Nurses. You wll most likely have a lot of issues at the beginning. Being able to converse by email was a godsend to me.
I caught your post/question on the earlier thread, and I am Genotype 1A, starting viral load 180,000, clear at 12 and 24 weeks. I am week 36/48 right now. I use a GI and I am fine with him. He prescribes the meds and all rescue drugs so no waiting for a referral. I am on procrit for the anemia. I primarily see a nurse practiotioner in his clinic who handles nothing but the hepatitis c patients. The NP credentials vary from state to state, but where I live they have a PhD in Nursing. SHE IS GREAT! She attends every liver conference offered. I have a major teaching hospital right down the road, but length of time for a referral was much longer, and access to the hospital and parking is a nightmare Not something you really want to do huffing and puffing with the anemia and fatigue! The main thing is go to a doctor you like, who respects your wishes, and will sit and talk to you.
Our GI doc is with Henry Ford, and they specialize in the treatment of HepC patients. Feel pretty confident with them. I think finding a doc who is very familiar with cutting edge treatments is more important than hepatologist vs. GI doc.
On the drinking issue; he must stop. My husband was a heavy drinker, but never touched a drop again after finding out what he had and the ramifications of continuing to drink. It's fairly ominous that your husband continues to drink and is looking for excuses to continue to drink sometimes. It does not bode well for the future. He should have stopped, like yesterday.
So glad you took some time off. I've been back on Procrit for about 11 days and still can't feel the effect. I've been on it before and when it worked, it seemed to work all of a sudden. Boom: I felt great. I don't know how long you've been on it--but it does take a little while to kick in. Take care of yourself (remember, you're sick with ANEMIA). I think it started helping me at around 2 weeks after the first shot.
I agree with you about taking care of one's self, regardless of what a spouse does to themselves. I have been in similar situtations, where it is impossible to control another's addiction. You need to take care of your self first. That doesn't mean you give up on your spouse, think about what you need too! Alanon is a great group. There are great people who deal with loved ones that can't stop whatever... it also helps with ones own issues dealing with dependency and loving people who are.. Hard to explain, but worth going to a meeting. Don''t get caught up with blame or worry. You need to take care of yourself. first!
Kalio i think you said it best. I think Strator would be proud.
PDS. Please don't get discourage and quit coming here, Like i said before i think your a very loving caring wife Who has a lot on their plate right now. Maybe some things that were said didn't come out right but i've been here long enough to know sometimes things don't come out like we mean for them to. I'll be the first to admit to that.
But after going through the thread i can a sure you the posts to you was from people that are really caring people that would never intend to be mean or hurtful. I don't always agree with everything i read here but one thing i will agree on is this board has the most nicest, caring, good hearted people. Plus theres alot of knowledge here. Wishing you both the best and hope to see you more often.
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