Visit with Specialist

[doglover28]

Hi All,

I am getting a little nervous.  I meet again with the specialist on Thursday.  The first meeting, he had several vials of blood drawn and did an ultrasound.  I guess the appointment on Thursday, he will go over my bloodwork and schedule the biopsy.  Before I went to the specialist, my primary care had already determined that I was a HCV anitibody positive along with being positive for actually having the virus.  The test the primary care ran did not give an exact viral load though.  It did say that I was 1A.  I am just wondering what I am going to find out on Thursday.

[cuteus]

I guess you will find out Thursday!

seriously, it looks like you answered your own question already, you will find out your tests results and then tx might be discussed(most likely). So, be prepared to give him an idea of what you want to do.  If advanced damage, tx will be most likely, with close monitoring for mental health issues. If mild damage, it is ultimately your decission whether to wait or tx, not the insurance or your drs. If you want to close the hcv chapter early, treat, if you are able to coexist with the virus for a few yrs, wait. No guarantees that the newer drugs will be kinder or more effective, not enough data yet.
Be ready to give him an idea of what you can live with/.
good luck

[doglover28]

Don't you think I should wait until after the biopsy to make start treatment?  My ultrasound was fine, but I know that can't tell what stage and grade the liver is in.  I guess I could start treatment before the biopsy, but that might not be to wise because they probably can't do one during treatment.  At the first appointment, they took like five vials of blood.
Pam

[cuteus]

oops, reading comprehension problem! mixed ultrasound with biopsy.  Yes! you should wait for the biopsy. I never had an ultrasound, most hepatologists experienced in hep c, go straight for the jug...biopsy. It is the gold standard still.  How annoying that you now have to wait to schedule a bx and wait for its results and wait...and wait.  You still can discuss the tx or wait possibilities. I hate that you have to wait some more.

[jmjm530]

I very much agree that this is your decision, not your doctor's, not the insurance companies. Sounds simple, but sometimes in the heat/panic of the moment we forget and defer to those in white coats. And if you already know what to do, then this is a good time to put that on the table and here what the doc has to say.

However, if you don't know what to do -- if unsure -- don't believe you have to make that decision (treat or wait) on Thursday. Unless you've already researched out your options and are very comfortable with a decision -- a reasonable approach is to tell the doctor that you have a lot to think about, and then to go home and think about it. Research it. Talk to others about it, etc.That's the approach I took. Took me quite awhile until I finally decided what to do.

Generally, Hep C is a slow moving disease, and delaying a decision by a few weeks or even a few months probably won't make any difference other than giving you a better chance of making a decision you can live with.

-- Jim

[jmjm530]

Based on no biopsy yet, I'll ammend my post to say, first you wait for the biopsy results, then you have another talk with your doctor and discuss treatment options, then you take all the time you need to make your decision. The process may seem slow but the positive side it gives you time to think.

[doglover28]

Tell me about it!  My first visit was May 14th. After the visit I called and spoke with the PA and asked about getting the biopsy done before the next appointment since they were doing an ultasound before.  She told me that they wait until all the bloodwork is back to even determine if I am a candidate for a biopsy.  Maybe she didn't see my labs from my primary care that states that I am a 1A.  I don't know.  Can-Do-Man had told me being a 1A is pretty automatic for a biopsy.

[doglover28]

Thank you for your responses.
As far as the biospy goes, do you think that I will need to request a tranquilizer if I want one?  Also, how much pain will there be after the procedure and the local wears off.

[cuteus]

weird! they usually do ultrasound guided biopsies, so it would have made sense to do a bx if the freaking ultrasound was already there! Some GIS wait for the liver panel results to decide if you are a 'candidate' for a biopsy. I had that happen with my first GI who stated that if my enzymes were normal, he saw no reason for a biopsy. Second GI, a hepatologist, saw the dx, and all the bloodwork, and scheduled a bx, regardless. I don't want to guess how my liver is, I wanted them to look at the tissue and see what damage there was, not guess base on bloodwork. I know biopsies are not perfect, but if they are not and you are looking at actual tissue, can you imagine how imperfect the other tests are?
Try to be a bit more assertive, don't show they can step on you easily. Hide all nervous shaking from them, if possible. They can be so intimidating, especially when you depend on them for medical testing and treatment.

[cuteus]

btw, I had no discomfort during the procedure or afterwards, unless I touched the area by mistake, then I would remember the bx. I could have done my cardiokick class if they would have let me.

[doglover28]

Have you been able to do your cardio kick class while treating?

[doglover28]

I agree...I want to know what condition my liver is in.  Especially being the darn worry wart that I am.  The place I am going to is suppose to be the best around the area I live.  It's actually a transplant center at Duke University Medical Center.
I better start working on some questions now and go in there as assertive as I can be.  If they give me the run around, I can always go elsewhere.

[cuteus]

as a matter of fact, I was able to continue two times a wk during the whole tx, slowed down when anemic and almost stopped(I did not know I was anemic), but went back to 'normal' after Procrit. Many times the thought of exercise almost made me ill, but I KNEW that I loved the class and how I felt afterwards, so I pushed myself to go and never regretted pushing it. The class was fun, the instructor was great. One of these days I am going to tell her that she was a lifeline while I was treating for hep c.
I also did the State Summer run series that yr when I started tx, also my yrly trip to Great Adventure. The next yr, I did not do the run series but continued the Y. Did Great Adventure again, but asked for a pass to avoid the lines. The roller coaster rides served as the best analgesic, but is not for everybody. No one here thought it would be fun to do Kingda Ka or Medusa, or the Robin and Batman ride(this was the best analgesic).
It is important to try and keep some type of muscle conditioning, you don't want atrophy or is it distrophy? But if the dr does not intervene with Procrit, it can be extremely hard to keep the body conditioned. Drs don't think much about QOL when on tx, sadly.

[doglover28]

I'm big in to mountain biking.  I live right near a State Forest. I like to ride a 20 mile loop through the park everyday. I hope I can do it when i treat.  It is like therapy to me.  I also do rebounding (trampoline jumping).  I've read that it's suppose to be good for the lymph system and liver.  I am just praying that I don't end up bedridden.  I will add the question about rescue drugs to my list.

[doglover28]

Exactly....that's what scares me because they said if they didn't know that I had Hep, they wouldn't be able to tell from the ultrasound.  I will demand a biopsy.  Thanks for the info

[NYgirl]

You know, the ultrasound just shows if you have abnormalities like tumors and such - it doesn't show the level of fibrosis.  They give you the test to make sure you don't have any physical problem like that with your liver. a LOT of people have it and then think they are just FINE and don't need to do treatment. They totally MISS the fact that it has nothing to do with the biopsy at all. ONLY the biopsy can tell you how much damage has been done.

I was shocked when I found out how advanced mine was. Considering I didn't even know I had it! But I got used to the news and moved on with treatment. I would have treated anyway to tell you the truth because I just hate having this virus in me.  But as a Grade 2 Stage 3 I really had to.

I would NOT start treatment if I was you until I had the results. If you have LITTLE/NO damage you CAN wait for the newer drugs or something if you want to right?

They won't have your viral load until you have a PCR test done. It takes about a week to get the results back from that one. Docs don't do them standard like they do CBC, hep panels. They only do them once in a while. I had to ask to get one at 4 weeks after treatment but they have to have a baseline for you BEFORE you start treatment so ask the doctor if they DID already do it.

You can't start treatment without a baseline viral load - your entire course of treatment protocol relies on it.

[madseason]

Can I jump in here?-Is it allowed; I seem to be scrolling down forever for my thread on 6/16.  

To jmjm: Re: Recut biopsy slides vs original slides. I called Dr. Jacobson's office they directed me to the Pathology dept at Cornell where they will be read. Cornell's secretary said it really doesn't make a difference - that some hospitals don't want to chance losing their originals.  If it's all the same, and as long as it's the complete set, I won't go into kamakazi mode (yet).
P.S. Can you believe I am still waiting for Dr. Brown's office to schedule me for an appointment.  I thought it would be much more difficult to get appointment with Dr. Jacobson.


To whoaisme: With the daily infergen/ribe tx, what were the sx like?  What is the Hep C center doing for your husband now?

Hoping all is well, and thank you for taking time to answer.

[doglover28]

How's it going girl?  I hope you are doing well today.

I agree, I need the biopsy.  Everything I read about this disease says that is the way to go.

I think one of the vials of blood the specialist took was for my pcr.  See when I went to the specialist, I had in hand from my primary, the labs stating that I had the Hep C anitbody, and another lab that said I had the actual virus (but it didn't list the viral load.) The primary requested it, but it didn't come back with the exact load.  The labs also had my geno type 1a.  My liver panels and CBC.  

Therefore,  since the specialist has that info, I think the additional bloodwork must be PCR and who knows what else.  

I am going to insist on the biopsy if he says I don't need one. Darn...I'm a 1A.  I need one.  

NYgirl, I'm like you, I don't like the thought of this virus in me.  Even if I am just a stage 1, I am leaning toward treating now before I start perimenopause.

[NYgirl]

To quote David Lee Roth "might as well JUMP, go ahead and Jump" ;)

We are all big time "jumpers" in here :)

[jmjm530]

I'm glad you got some answers. So what exactly do they do? Reslice the liver and prepare new slides? I wasn't aware they have that much "extra" when they do a biopsy.

Sounds like an awful lot of work to do twice, when they could loan out the orignals but keep the "extra" just in case. But hey.

It seems that Jacobson has a more efficient office. A couple of months ago I called my cardiologist's office complaining of chest pains. He still hasn't called back. Needless to say I switched cardiologists. LOL.

Please let us know how your appointment goes and don't forget to bring copies of all recent blood tests, procedures like ultrasound, etc.

-- Jim

[doglover28]

I would not be the least bit surprised if I am a stage 3. That's why I will demand a biopsy or go someplace else. I partied pretty hardy during my teens, my twentys and early 30s. Since then, I've been an exercise fanatic and a health food nut, but that does not undo all those years of abuse.

[prettydamscared]

Hi,  just wait and see & try not to speculate until you have the bx and get results.  I was so sure I was stage 3 or something because I also have done some major partying, teens, 20's and sometimes girls weekends right up to now.  I wasn't sleeping....I was making myself crazy. Got results last week, my stage is between 0 and 1.  And, stressing yourself out is supposed to be really hard on liver.  My hubby and & have our own business for 19 years now and talk about stressing and controlling and pushing the boulder up the hill.....that's what I call it when i was always trying to implement new systems and guidelines in our business, and no one would listen to me.  lol  Anyway, in spite of everything, I have minimal damage so you just never know.  Try not to worry.

Best of luck to you too! Char

[NYgirl]

Don't speculate that is so true!  I partied all the way through my teens, 20s and 30s too - but I had the virus during most of that time apparently (like 25 years) so it really did compound the damage big time.  You might be lucky and have only gotten it more recently...maybe like 10 years ago or something and have less damage!

Don't beat yourself up before you find out - but you are 100% right...you DO need to find out for sure.

[doglover28]

Hi Char,
That is great about your results!! Congratulations. I know that must have been a relieve. If you don't mind my asking, are you going to treat or give it some thought?  

I hope when I go on Thursday, that I don't have to wait another month for the biopsy.  Hopefully that can be done next week.  The PA told me that there was a month between appointments because all the blood that they drew takes 4 weeks to come back.  She said they send it to LA.  


Pam

[doglover28]

by the way....has anyone heard from OhGreat?  I haven't seen him post in a while.   I thought he was suppose to get his biopsy last week.