1st Visit to Hepatologist

[jules2551]

Good morning everyone!  I finally had my first visit with my Hepatologist last Friday.  We spent a couple of hours talking about my history and current usage of drugs and alcohol.  He seems to think that I have had Hep C for 30+ years which really shocked me.  (Boy the late 70's and early 80"s were the good ole days weren't they......NOT...lol)!  So then he just did a general physical exam, tapping onto my liver repeatedly and listening.  He also looked at the back of my hands and saw all of the scarring from blistering in the past.  He immediately came to the conclusion that I was "Post Necrotic Cirrhosis" and had "PCT".  He order several tests and I was wondering if you thought he was on the right track for diagnosis?    Here are the following tests he ordered;

1) Liver Biopsy- percutaneous, strain for Iron also
2) MRI of the abdomen (liver, gallbladder, and spleen)
3) #10231-Comp Meta Pnl
4) #19647- Liver Fibrosis Panel
5) #7573 Iron, Total, and IB
6) #457 Ferritin
7) #6399 CBC (Diff/Plt)
8) #8847 Pro Time with INR
9) #237 AFP, Tumor
10) #978 CEA
11) #36504 Hep A AB, w/refl IGM
12) # 38318 ANA IFA w/refl
13) # 263 Smooth Muscle w/refl
14) 24 hour Urinary secretion for Porphyrins

     He also stated that since I had to travel over 2 1/2 hours to his office that I might want to consider treatment closer to my home.  He said he knew of a specialist in my area and that he was extremely knowledgable...something I might want to consider.  I felt very comfortable with the specialist I saw so I don't know. Any thoughts on switching doctors also would be appreciated.  (the only thing i am really concerned about traveling that distance is the upcoming weather in the North East).  

      I hope everyone has a great weekend and thanks for reading my post!

Jules

[jules2551]

oh...and he also said he did not feel any fluid build-up but he could tell the liver was "somewhat" inflamed.

jules

[jules2551]

Hi Eureka....I was originally tested for Hep B with my GP.  That came back non reactive. And for the life of me I don't know why he didn't test me for Hep A?  So the Hepa is testing for that, this bloodwork, and if it is negative he will vaccinate me for both.  I don't know how my GP missed that one.  So we will find out shortly.

Have a great Thanksgiving!

Jules

[jules2551]

Hi Hector, thanks for the info.  I googled most of the bloodwork and was able to figure out which direction he was going.  To me he seemed very thorough in our discussions which I was pleased with.

Also, just wanted you to know that I was never an IV user.  He asked me that repeatedly and also about tattoos.  I don't have any tattoos.  I think it must have been my cocaine use back 30 some odd yrs ago.  Oh well, doesn't matter...I have Hep C.  

Went into the hospital this morning and did all of the bloodwork he requested.  Picked up my urine jug (I hope they don't expect me to fill the thing up...laughing) and will return it Wednesday when I am scheduled for an MRI of the abdomen.  Waiting for them to schedule the Cat Scan Liver Biopsy...said the hospital would call me sometime today.

If I don't chat with you have a great Turkey Day!

Jules

[eureka254]

Sounds like you found a competent hepatologist who communicated things well, and thumbs up on your proactive attitude and staying sober!  As a New Englander, I completely understand your hesitancy about winter transport issues; I think if this hepa is willing to oversee the physician closer to you, that might offer the best of both worlds, as long as the hepa will make himself available to you as well if you should need it.

If your intent is to treat, the IL28B test may not be much utility; however, I did notice the doc didn't order hep b screening, which he should; if you have no prior exposure you should be vaccinated for hbv, as you want to avoid hbv at all costs with active hcv.  Best of luck to you! ~eureka

[HectorSF]

It sounds like this hepatologist is really on the ball. Unfortunately not all doctors including even some hepatologist are so aware of hepatitis C and the indicators of cirrhosis of the liver. It is very good to catch your liver disease now rather then later when things may be more advanced.

BTW: "Postnecrotic Cirrhosis" - means cirrhosis caused by hepatitis when the liver has large nodules over its surface caused the scaring of the liver.
"PCT" - Porphyria Cutanea Tarda  is the most common form of porphyria, characterized by skin photosensitivity that causes scarring bullae, discoloration, growth of facial hair, and sometimes sclerodermatous thickenings and hair lose. it is associated with alcohol abuse, liver disease, or hepatic siderosis. Urinary levels of uroporphyrin and coproporphyrin are increased. Which is why the doc order test #14.

With your history you have high odds of being infected by hepatitis C due to IV use. By palpitating your abdomen a good doctor can feel a hardened shrunken liver and an enlarge spleen which are two indicators of cirrhosis. He may have also detected some fluid build up which is a complication of cirrhosis called "ascites".

If you do have advanced liver disease your doctor is correct that you will need to treat for 48 weeks to have the best chance of cure.

Seeing this hepatologist 2X month for the first 3 months makes a lot of sense especially if you do have cirrhosis. There are a number of issues that could arise while doing treatment if you have cirrhosis.

The tests that he ordered will determine a diagnosis (cause of your liver disease, prognosis, etc) and the extent of your liver disease. All this information is needed before deciding on possible treatment.

Once you have a diagnosis and if it turns out that you will be able to treatment the virus he can hope coordinate your care with a local doctor. So it is not an either/or situation. Many of with liver disease have local resources that we can use while at the same time have an expert further away that over seeing our care. This is not unusual and is really the best of both worlds.

I hope your results give you some good options to recover your health.
Best of luck to you!

Hector

[jules2551]

Yes he said the test was irrelevant.  I would have to do the 48 week treatment regardless.  I am doing all the lab tests here locally but he said I would have to see him 2X month for the first 3 months.  I think I will see what he has to say after he reviews the lab reports and go from there.  After that I may change to a local Dr.  

[can-do-man]

Looks like you have a good doctor thats on top of things, feeling comfortable with a doctor is very important, once you start tx most of your labs should be able to be done local so there would be fewer times at the office.

I would guess his thinking about the IL28B test is no matter what it is your going to need to tx so it doesn't change anything............ Congrats and best of luck going forward.

[suezeeque]

Aren't we all asked about our current and historical use of drugs and alcohol at our first visit with the hepatologist?  I know I was and I haven't had even a single drink in almost 20 years!

So I didn't automatically assume that you are currently using either and believed the opposite to be true from your original post.  :D

[flcyclist]

Sorry, misunderstood the current usage.  Congrats on being clean and sober.  Well done!

[indy531]

Maintain copies of all labs/tests for your own records while going thru this; it helps.

[jules2551]

I forgot to mention a couple of things on my original post.  First of all I have been sober for about 7 months and haven't done drugs in about 30 yrs.  I think the Coca-cola is what did me in in the 80's....sorry should have been more specific.

Also spoke with Dr about the IL28B test and he said it was "unnecessary" but would run it if I wanted him to.  I said yes i would like to know.  I did not see it on the lab report...but it could be there under a crazy name which i do not know.  

I also asked if there was a "sense of urgency for treatment" and he said....I should start immediately rather than waiting until spring.  That caught me off guard a little bit.  He said I could be in serious trouble in a couple of years if i didn't do treatment.

[indy531]

I would also second getting clean/sober before tx. Otherwise tx will be futile. I believe that my non-use of drugs/alcohol (teetotaler/absolutely clean sober in my lifestyle) has helped keep my bx results as low as they are-stage0, gr.3. My latest liver functions are now all in normal range and tomorrow I go for 8 wk. vl -I was not und at 4 wks, so am nervous.Get your 'ducks in a row'.

[indy531]

Many of the tests sound similar to what I had when 1st dx and are necessary as protocol, esp. for ins. coverage for tx and rx. I would treat close to home if possible. Tx can be exhausting, is labor intensive w/labs being taken or contacting hep office. I had options of tx away from home, but realized that travel would be too much for me and caregiver. Try to keep it simple. Good luck.

[flcyclist]

First, I noticed you mention "current usage of drugs and alcohol".  If you haven't already, getting into a rehab to rid yourself of these bad habits should be your first priority.  If this usage continues, any efforts made to salvage your liver may be futile.  I'm sure you're aware of this.

Once you determine the current health of your liver via the biopsy, you can discuss with your Hepa your course of action.  Although 2.5 hrs may sound long to travel, it might not be an issue if you don't see your Hepa very often.  I've read on the forum that others travel much further.  I've been referred to a Hematologist to monitor the cbc's and they can also draw blood for the PCR's.  I only see my GI about once every 3 months, but your needs might be different if you are having issues.  Since your Hepa highly recommended someone local, you can go for a consult and have a discussion and go from there.

I'm not familiar with your Hepa's diagnosis or all the tests ordered, but it does sound like you're in good hands.  Again, I hope the drugs and alcohol are in your past, since these medications will need your full focus and determination to get through it.   Best of luck to you.

[suezeeque]

I don't have anything to offer about the tests, etc...  But I hear you on the travel and winter weather...

Why not check out the doctor he suggests?  Couldn't you go back to the current one if you didn't feel as comfortable?