Going to Hepatologist on Monday - advice needed

[LindyK]

Monday I will be going to the Hepatologist for the first time.  I am very nervous about it.  Can someone tell me what to expect and questions I need to ask?

Also, I just wanted to mention (I've posted this a few times before) that I have been sick for coming up on 2 years (dx w/Fibromyalgiain March 2004) but many of the symptoms I have sound like the same ones many of you have during tx.  I am out of work on medical disability leave right now because the symptoms do not allow me to work at my full capacity which is necessary for me or I place myself in danger of losing my job.  Will this mean symptoms will be worse for me if I choose tx? It's really weird because everytime anyone talks about the side effects of treatment I'm just saying to myself - Gosh, I've been feeling that way for almost 2 years!  I am scared to find out what's going on since I have been sick for so long if all of my symptoms may be attributed to Hep C.  

[LindyK]

Thanks for the tips.  Actually, the hepatologist I am going to requires the primary provider to send them a copy of all of the medical records before they even decide to accept you as a patient.  Then the Hepatologist's office calls and makes the appt with the patient.  So I guess they thought there was enough information to see me.

The first information about having Hep C came from the Red Cross when I donated blood in August.  Got a letter from them saying I was most likely infected with Hep C.  Then I went to the local Health Department and had them test me - same result.  But I'm not sure if either just test for the antibody.

I just want to get well.  I feel like I've lost most of my life for the past 2 years.  I am someone who has never been ill, broken a bone, had surgery, etc so I am NOT a very happy camper!

[jmjm530]

Certainly not necessary, but just wanted to add that you might consider bringing a trusted friend or relative with you both for support and to take notes during your doctor's visit. Sometimes they tend to talk very fast using terms many of us are not familiar with.

I brought my brother with me to one visit -- not to take notes but because I needed someone to drive me as I was quite anemic at the time. Interestingly enough, the doctor seemed to spend a little extra time with us. I guess it's sort of like a business meeting, sometimes presenting as a team has its advantages :)

-- Jim

[jmjm530]

Hi Lindy,

Sorry you aren't feeling well. I'm sure the problems at work aren't helping things any!

Assuming your visit to the hepatologist (liver specialist) is Hep C related...

First, you want to bring with you any relevant previous blood tests or procedure reports. It might also be helpful to write down all your symptons in advance so you won't forget.

Depending on what tests already have been done...your doctor may want to confirm that you indeed have Hepatitis C. To do this he will run a viral load test as opposed to an antibody test. A postive viral load test will confirm the diagnosis of Hep C.

Another test he may run is called a "genotype" test. This will tell you what strain of Hep C you have. Sometimes this is run at the same time as the Viral Load test. Sometimes the doctor may wait until the viral load test comes in positive before ordering it.

In addition the doctor will probably order a number of other tests including liver function, CBC, thyroid and whatever else he feels necessary to make an accurate diagnosis.

At this point, I wouldn't think too far beyond getting whatever tests your doctor feels necessary and seeing what they say. No sense putting too many carts before the horse.

It may indeed turn out you have Hep C and need treatment, or it may turn out to be something else. Same with the symptons you mention. They may or may not be Hep C, or even liver related.

Try and relax and take things as they come in smaller, bite size pieces. Lots of advances in the past few years and I'm sure you will be well taken care of. Seeing a liver specialist was a very smart first step.

All the best.

-- Jim

[bobbyullc]

biopsy...biopsy....biopsy...biopsy...it may or may not be hep c alone.
bobby

[LindyK]

I had to go out on disability last year for 12 weeks because I was too sick to work then went back 1/2 days, then 3/4 days until I was back full time in November 2005. (sorry - said I was dx w/Fibromyalgia in March 2005 not 2004 but I got sick suddenly in November 2004.)  I hold a high level management position and although I never had problems at work before my performance suddenly came under great scruting (I just wasn't the same when I came back - used to be a high producer).  Came very close to getting terminated but somehow pulled everything together at a great cost to my health which is why I am back on medical leave now because I was beginning to slip away again and I couldn't risk losing my job - plus I really like me job.  I just didn't want the same scenario that happened this past March to bite me in the rear again (it was horrible).  For 3 consecutive years I've had stellar evaluations but then my boss tells me I am no longer "suited for my position".  I got HR involved which really ticked off my boss and she drafted a memo about all my shortcomings that were either boldfaced lies, exagerations, or incidents taken out of context.  When I talked to the HR director her response was "She can be the biggest liar in the world but she is still the director."  So wadda ya do.  Protect myself as best as possible.  But after my FMLA is up Jan 2 and If I can't go back to work I probably will lose my job.  Technically I will stll have short term disability until the end of March and if there "happens" to be a job open in the organization prior to March that meets my qualifications then I can apply for it.  Also if I can manage going back part time on disability I put myself at risk because my long term disability says I have to be out for 26 consecutive weeks for it to kick in.  I understand the organization's point of view but my health and financial future is at risk.  Arrgghhh!

[Pdilly]

I am working full time which is about 10 hours a day 5 days a week.  I am noticing I don't have as much energy but am making it so far.  There may be a day that I can't come in but until then, I will do it.

[Kalio1]

That sounds a lot like me. I figured might as well be helping to get better and feel bad as feel bad and not be doing anything about it. I was sick like you and had a lot of symptoms. In a month of treatment my blood work was great,except I till had low platelets but enzymes normalized and all the physical issues I was having went away. I do feel crappy from the meds, but I don't feel as sick like I did before if that makes any sense.

[Pdilly]

Ask him what tests you are going to need done, biopsy etc.  What treatment will he do?  Will he issue rescue drugs? If you relapse will he retreat?  Anyway if he is like my doctor he did all the talking and I did not have to many to ask.