Can anyone put me at ease here?

[kenneltech]

I just got a call from my pcp telling me that my liver enzymes have tripled since January.  I have type 1A, and it has been dormant for years.

I have to make an appointment with the hepatology lab, but I am jumping to conclusions like I always do.  There is no reason for the enzymes to jump like that, I mean, I haven't changed my lifestyle any, so naturally I am worried.

My ALT has gone from 84 to 196, and the other one tripled but I can't get the numbers as it was on my voicemail.

I do know that they were watching me very closely a few months back as I had positive cancer tracers in my blood work that went directly to my liver, and I had "spots" on my liver that they were watching, but they went away.

I am NOT a good candidate for the treatments as I have PTSD, with depression, and I live alone, and they are reluctant to treat it as it can make you feel suicidal (a side effect?).Does it mean everytime that your enzymes skyrocket, that the Hep C is active?

[kenneltech]

Whatever was at the bottom is all that it said, I don't know either.  I was kind of hoping someone would tell ME! What exactly is "staged?"

The reason I was told about doing this transjugular is because they had found those 'spots" on my liver and they wanted to get the liver biopsy at any angle, not just one sample.

I don't know if that is true or not, but it sounded reasonable.

[SusieS2010]

I am wondering why they would do a transjugular biopsy if you do not have cirrhosis. I'm so glad you don't, but it just seems odd. You have some things in your labwork that make it look like cirrhosis and some things that definitely don't. Your AST to ALT ratio is greater than 1 and we often see that in cirrhotics. Plus your albumin is a bit low. However, your platelets are great and they are one of the first things to drop in patients with cirrhosis. I also don't see where they staged yoou. I only see an explanation of the staging. It is hard to decipher the bottom of your post. What are alll those A's and the word liver, etc?

You are  being cared for by one of the best hep docs. What is he saying about all of this?

[kenneltech]

I don' t know what the plan will be now.  We were just going to "sit on it" since it wasn't doing much, but now it's a different story!

Do you see anything of interest!

[James10500]

KT

I certainly couldn't add anything to their care. Seeing as Doc E is the chairman of the entity in this country that decides who gets donated livers, it seems you are in good hands. No one in the forum knows more about HCV than him, obviously.  

If you can't treat you HCV than what's the plan ?

[kenneltech]

I see doctor Everson and Dr. Forman, I have two doctors that are a team because when they found those positive cancer tracers and those spots all over my liver, they worked as a team.  I had to have an MRI done every 2 months.  So, do you see anything that looks strange that I should know about?

[James10500]

O.k. Just checking because on April 12 you said you see Dr. Forman.  

Good luck.....fwiw

[kenneltech]

I got my biopsy from last year, you can get them online from the hospital in Denver, here it is and thank you:

Patient Name:kenneltech  KMedical Record Number: 580019Accession Number: S09-006907692689:Microscopic Diagnosis: Liver, needle biopsy:- Chronic hepatitis, HCV, mildly active (Batts Ludwig activity grade 2/4)- Negative for significant iron deposition (see comment)- Mixed microvesicular and macrovesicular steatosis involving 20% of hepatocytes - Portal fibrous expansion with periportal fibrosis and focal early bridging (Batts Ludwig fibrosis stage 1-2/4)    Comments: Histochemical stains for iron show no significant iron deposition within the liver tissue. However, tissue was submitted to the Mayo Medical Laboratories for iron analysis. An addendum will be reported with the tissue iron analysis results.   Clinical History:56-year-old female with a history of Hepatitis-C, genotype 1A. Rule out hemochromatosis. Please do iron quant and grade and stage. Pre-op dx: Not provided. AST = 58, ALT = 50, ALP = 122, total bili = 0.5, total protein = 5.7, albumin = 3.2, platelets = 218, AFP = 23, TIBC = 518, U. IBC = 418, ferratin = normal.   Gross Description:Received in formalin are two specimens.Specimen A, labeled with the patient's name (Debra Dahl), medical record number, and not otherwise designated, is three core fragments ranging in size from 1.4 x 0.1 x 0.1 cm to 0.3 x 0.1 x 0.1 cm. The fragments are filtered through a tea bag and submitted in toto in cassette (A1). Submitted with the specimen and sent on to the Mayo Clinic were two specimens received fresh for iron quant. Gross description performed by Adrienne Ray.     Microscopic Description: Sections show multiple fragmented needle core biopsies of liver which have sampled 17 portal tracts for evaluation. Overall the lobular architecture of the liver is in tact with alternating portal tracts and central veins with normal spacing. However, there is fibrous portal expansion with periportal fibrosis and focal areas of bridging fibrosis. Examination of the portal tracts reveals nodular aggregates of lymphocytes and rare histiocytes. The infiltrate spares the bile ducts which show an unremarkable biliary epithelium. Terminal branches the portal veins and hepatic arteries are unremarkable.Examination of the interface zone reveals focal interface necroinflammatory activity characterized by lymphocytes traversing the limiting plate and surrounding zone one hepatocytes. There is no significant ductular reaction.Examination of the lobule reveals a mild degree of lobular disarray with scattered areas of lymphocytes and rare single necrotic hepatocytes. There is mild mid microvesicular and macrovesicular steatosis involving 20% of the hepatocytes. No significant viral cytopathic effect or pigment deposition is recognized. Central veins show no significant pericentral vein fibrosis or inflammation.A trichrome stain highlights the portal fibrous expansion and focal areas of bridging fibrosis periportal fibrosis. An iron stain is negative. PAS with diastase stain is negative for hepatocyte globules but does highlight ceroid laden macrophages within the portal tracts. However, it is slightly over digested.BATTS-LUDWIG GRADING AND STAGING OF CHRONIC HEPATITISGRADINGSemi-quantitative Portal/Periportal Activity Lobular Activity 0 None/Minimal None  None      1 Minimal Portal inflammation only Inflammation only, no necrosis 2 X Mild Mild, focal interface hepatitis Occasional spotty necrosis3 Moderate Moderate, involving most tracts Moderate necrosis without bridging    4 Severe Severe, involving all tracts Bridging necrosis STAGINGSemi-quantitative-Descriptive (Criteria)0 No fibrosis - (normal connective tissue)1 X Portal fibrosis - (fibrous portal expansion)2 X Periportal fibrosis - (periportal or rare portal-portal septa)3 Septal fibrosis - (fibrous septa with architectural distortion; no obvious cirrhosis)4 Cirrhosis - (cirrhosis)  Interpreted by:      ELECTRONICALLY SIGNED      Maxwell L. Smith, MD   Pathologist - 5882     Date: 05/07/2009    "I certify that (1) all services on this form were rendered and are hereby approved for billing, (2) all specimens/slides have been examined/reviewed, (3) the medical record has been documented for these services, and (4) the rendering of the services and the documentation in the medical record are in accordance with UPI guidelines."    The following special evaluations were performed on this specimen.  Please refer to the Microscopic Description or Comment section(s).StainSpecimenBlockLevelTissueTrichrome          A   1   3   Liver           PAS/Diastase        A   1   4   Liver           Iron            A   1   5   Liver           Trichrome          A   1   11  Liver           PAS/Diastase        A   1   12  Liver           Iron            A   1   13  Liver           PAS/Diastase        A   1   17  Liver           Iron            A   1   18  Liver        

[kenneltech]

I called today for an appointment at the hep center at the hospital.  One thing I do know is that it is one of the best in the states for hepatology, they do more liver transplants than anyone else.  NO, I don't want a transplant! I'm just saying that they really know what they are doing.

One thing that I wanted to mention is the antidepressant.  They don't work on me.  I have also had three series of 6 shock treatments, and they didn't work, either.  I am normally not depressed as the depression comes as a result of the PTSD, but when it comes, it comes HARD!  They have had me on just about everything, and they gave me other meds to boost the antidepressants, and they did nothing.

I am taking everything that you guys on here very seriously.  A friend of mine recently just about died as he DID have a liver transplant, but because this is not a CURE-ALL (as the virus is still there) the hep attacked his new liver!!!  I don't think I would have a transplant because you go through hell and there are no guarantee's, so why do it?  As a matter of fact, I told them NOT to put me on the list.  THANK YOU.  I will absolutely let everyone know what happens.

[kenneltech]

But that's who I see!  I AM going to Anschutz and I DO see doctor Everson!!  He's my doctor!  The only thing that my PCP does is monitor my liver enzymes because they were steady for a long time and it wasn't necessary for me to go in to University if I didn't need to.  Dr. Everson is well aware of this.  But, now my PCP DID find something, so I am making an appointment today.

As of 1 year ago, I was at stage 1, that's all I know. I do have an MRI of my liver and I can post that, if it will help. I don't understand a word of it.

Everyone, THANKS!!  I didn't know I had this ten years ago, so I don't have records from that far back.  Like I said, I do have the MRI report if that would help. And you are so right, I need to get familiar with the terms.

[Diane12855]

I forgot one thing.... antidepressants .... they put people with a history of depression on them for a few weeks before starting treatment, and then they do the treatment. That's what I did. It wasn't a picnic, but I got through and they still can't find any virus in my blood.

Diane

[Diane12855]

I had HCV for over 25 years, but my liver enzymes didn't go up until a year ago this past January... that they know of. The enzymes are released into the blood stream after liver cells are destroyed. This can happen because the virus itself has to be inside of a cell to replicate, and when it replicates to the point of more than the cell can hold, the cell bursts. They just happened to check your blood right after this happened.

PLEASE listen to the above posters!!!!!!!!!!!! We have been dealing with this disease for a long time, done lots of research, besides just this forum, and we know that lots of doctors don't know any more than they learned in medical school about HCV. There have been lots of discoveries since then, but they don't know it, because they don't even know how prevalent it is. I started with a GI, but realized that he wasn't going to support me like I needed through treatment, so I found a wonderful hepatologist 35 minutes from my house. Even though he was a specialist with lots of HCV patients, he was very open to what I was learning, and I did come up with some things that he didn't know yet, which he thanked me for. HCV can't be ignored. The number of people who die of it isn't real high, true, but the ones who do die because of HCV suffer greatly for quite a while before they do die. Either that or lots of people have to get a liver transplant... which isn't much of a party either. The best choice is to take care of things before it gets too bad, and get rid of it once and for all.

Diane

[SusieS2010]

Hi there. Try to stay calm because stress is no good for any of us. It sounds to me like you have cirrhosis (so do I). I get that from the fact that they did a transjugular biopsy, and the reason for that is usually fear that the patient will bleed. Low clotting factors are common in cirrhotic livers. If your biopsy showed cirrhosis there really is no need to take the risk of any more biopsies. Someone recommended Dr. Eversen to you and I think that would be a great ideas.

The cancer marker you are talking about is probably your AFP (alfa pheto protein). This is commonly elevated in cirrhotic patients and even in some from just having HCV. They should  be monitoring you every 6 months with imaging and every time you see the specialist with an AFP test. Your liver enzymes aren't very worrisome. In fact people with late stage cirrhosis often have normal liver enzymes because there is no  healthy tissue to leak out those enzymes. And HCV is always active even when your enzymes are normal or close to normal.

If you aren't  already being monitored by a specialist please make an appointment.  While cirrhosis can be very serious, if you take good care of yourself, you can live with it for decades. I am going on 20 years with mine and I am still doing great.

[paen53]

I agree with the comments above. It sounds like you will be making an appointment with a hepatologist from your OP and that is good. Gathering your prior records is ultra important, not only for your new Dr. to look over, but also, for yourself to read and become familiar with. Circle and make note of anything that you don't understand or question and ask the Dr. to explain in terms that you can understand.

Tx options have changed so much in the past few years (months even) and the future is looking brighter for those of us with HCV. Another bx may be in order to see what the right approach would be for you, if indeed you need to treat right now at all.

Good luck with your upcoming appointment, Pam

[James10500]

Why are you seeing a PCP when you know you have HCV.  

As I told you last time go see Dr. Everson at Anshults liver and Hep clinic it's so close to you !

C'mon KT do what you need to do. Call Michelle Miller and get an appointment, look in your last thread for the phone number I gave you in that thread.

[nygirl7]

If someone told me I had spots on my liver and were monitoring me for liver cancer tracers in my blood and not to worry about it - I'd run fast as lightning out of there and find a doctor that would explain to me what exactly that meant.

Liver enzymes are not always an indicator of how much damage the virus is doing, it's a gauge we use losely but it not always indicative of what is really happening.  But basically yes the numbers tripling would imply that there is very active liver cell death going on at this time.

Please find a heptologist or at least a GI with a thriving HCV practice. It's obvious that your doctors aren't keeping you informed or you would be monitored much more closely than you have been.

And definitely schedule a new biopsy this is crucial.   Depression or not that perhaps could be managed with a good Antidepressent but end stage liver disease cannot. If it comes down to one or the other and you have to treat - you'd be wise to treat. With the new meds coming out and shorter treatment times it would be ideal for you.

Good luck K nice to see you again.

[EyesofBlue55]

I would get a copy of your biopsy report if you cant remember the results(either through the dr that ordered it or the facility that you had it at. Just to see where you are at as far as damage to your liver-cindy

[copyman]

I also think you should seek out a Hepatologist at this point. I would personally pick up copies of all my records from any doctor you have seen over the last 10 years. After I compiled all these records I would take them to a good hepatologist.
Best of luck

[Boobert]

Normally they take a Biopsy every 3-5 years. The word dormant should not even come up in the discussion. Try to atleast get a copy of your last biopsy results. It sounds like the Doctor may have been trying to say your liver is not very damaged yet and you still have time, but get a copy or have another biopsy and if possible a Hepatologist.Good luck.

[kenneltech]

I did have a biopsy, but it was a couple of years ago.  They went through my neck to get to my liver.lt was so long ago that I can't remember what all it said, but I do remember that they told me not to worry about the spots on my liver, they were going to monitor them.

I don't understand what they mean, then, by dormant? Does that mean it wasn't "active?"  This is a mystery to me.  I will get more detail when I go in, I'm sure they will want to do another biopsy, I don't know how often they need one.  Thanks

[EyesofBlue55]

Hepatitis does not go dormant.Either you have it or you dont.There is no such thing as going dormant.I think a Hepatologist should be in order for you since many PCP drs are not up to speed on liver diseases.Have you had a biopsy and what were the results?If you havent had one-maybe its time that you do.It will tell you the grade and stage of your disease and then you can go from there-good luck and keep us posted- cindy