Went to Gastro Specialist today

Hi Mitzi,
Sorry that the appt didn't go as you had hoped. I don't have any experience with hep C. My husband has cirrhosis due to alcohol. When he was first sick, his blood tests were once a week, two weeks, month, etc. Now it is every 6 months. Also visit to GI doctor every 6 months. He has all the tests you described. GI doc says cirrhosis makes the patient more prone to liver cancer. My husband will have an abdominal ultrasound and the blood test for cancer markers every 6 months. Sounds like what your doctor is ordering is protocol.

When will you have your bloodwork done? Will the doctor communicate the results to you prior to the one month follow up?

Hugs back to you.

Emma

Mitzi,

I do not have hep c or alcoholic hep, mine is a rare hepatitis of the giant cells of my liver of unknown cause.

I have cirhossis confirmed by biopsy. I have an enlarged spleen. Have been told by my docs that the spleen chomps my platelets. Latest platelet count for me is 56,000. People undergoing chemotherapy can have lower platelets than I.

I have either a MRI or CT scan every three months. I have a lesion on my liver they are monitoring. It grew last fall and then, shrank in January, and has been stable since. In the Fall they did a ct of my thorax, abdomen, and pelvis and a nuclear bone study to rule out cancer. Every 6 months, I have the Alphafetaprotein blood test which can point to cancer tumors. MY AFP was in the normal range.

I have blood labs every two weeks because I am on the list. My nurse told me today that these are the best labs I have had in a year. So what I guess I am saying is this disease has it's ups and downs like a roller coaster. You have to try to stay calm because I believe it has a lot to do with your ability to heal.

Hang in there.

Susie

Wow!! your gastro has taken a big step to diagnosis you with cirrhosis and chronic hep c without a biopsy.  Hep C with no viral load is called Occult hep c and most in the medical community believe it does not exsist. 

There are other reasons for low platelets and red palms other than cirrhosis.  I had low platelets (at around your level)when I had a Vitamin B12 deficiency due to a peptic ulcer.  Other blood levels fall as well as platelets with cirrhosis, what is your Albumin levels? have they fallen?

I would be asking for a biopsy for a definate diagnosis.  It is the gold standard in diagnosing cirrhosis, a biopsy will also tell you if you do have cirrhosis what it is caused by.  

Yes, you can have cirrhosis with a normal ultrasound.  Why has he ordered another ultrasound? Is it to check on the gallstones? 

Mitzi, I agree that a biopsy would give you a definitive diagnosis.  I'm surprised that hasn't been mentioned.

Cirrhosis is not treatable (except maybe with diet and not drinking, to keep it from progressing) and not curable.  It is irreversible damage.  A transplant would be the only real treatment and "cure."

People with Hep C do have a high risk of liver cancer.  Maybe it's because they develop cirrhosis.  As you may know, I overcame HCC once and now have it again, with chemoembolization and transplant being the treatment that is planned.

Take a deep breath.  Your hep C, if chronic, could mean that you were exposed to it but your immune system knocked it out.  If you are infected with it, you would be considered "chronic active."

HCTZ is a mild diuretic that works to control blood pressure.  I was on it for a number of years for BP...until I developed ascites and edema and was switched (by my Mayo doctors) to Lasix and Aldactone.

Hugs,

Connie

Mitzi, your albumin is in the normal range, which is 3.5-5.0 g/dL (grams per deciliter.)

Hugs,

Connie

Mitzi, I just don't dwell on what the results are.  I know I won't get them until I see my hepatologist or they arrive in the mail (which is generally AFTER I see the hepatologist.)

I have the pain you describe if I bend over too far...say sitting on a high seat trying to get a sock on my left foot.  The pain is only in the left side, just below my ribs, but feels like my intestine is pulling or cramping and the pain is BAD.  I have to just breath and relax until it goes away.  This has only been a problem since my midline incisional hernia repairs in '07.  So maybe the intestines have been pushed down by the mesh they used.  I don't know.  I just try not to move in that way.  All the scans I've had don't show anything.

Hugs,

Connie

Hepmom, so if the HCV-RNA test comes back "positive," then it means she was exposed to the virus and possibly contracted it, but her immune system fought it off? And "virus detected" would mean that it's chronic active and in her blood stream?

I'm fairly certain that this particular doctor did not do the original HCV test and diagnosis. Mitzi is having to get whatever medical care she can through the county. I certainly don't think it's very good quality, based on what she has posted. But sometimes one has no choice.

Hugs,
Connie

Good morning Sue and Connie,

Maybe I can clear this up. The doctor I saw a month ago at the Friendship Center ordered a test for Viral load and HCV RNA. It was quantitative, not qualitative. I posted the results in one of my prior post but will post again. The Gastro Specialist I went to yesterday is said to be one of the best. The county paid for it. The doctor at the Friendship center referred me to him. This Gastro Dr does not do any volunteer, free consults. My case manager mentioned that when she gave me the voucher. The office was up scale and I felt at the time I was in good hands. However, the doctor did not order a qualitative test. He ordered genotype. And you are correct, Connie, I am having to take what I can get for now. Do you think I would be better off applying for Medicaid than going through the county. Remember, this county does not have a Health Management Plan so getting vouchers is the only way I can go. Here are my results done5/13/2011. I will list them all to the left margin. I tried once before to format them as they were on the paper but when I submitted post, it was all jumbled up.

HEPATITIS C ANTIBODY SUPPLEMENTAL TESTING
HCV AB, RIBA Positive

Band Pattern
5-1-1 (p)/c100 (p) Reactive
c33c Reactive
c22p Reactive
NS5 Reactive
hSOD Nonreactive

As for the viral load:
HCV, RNA, QUANTITATIVE REAL TIME PCR <43

HCV RNA, QUANTITATIVE REAL TIME PCR <1.63

The reference range for the second one was <1.63 Log IU/mL

I don't know if this helps to figure it out. I don't understand about the Band Patterns. I do remember the doctor stating that he rarely saw this low of a viral load without treatment which I have never had.

To me, it is a moot point. What difference does it make with a non detectable viral load if I have cirrhosis? Evidently the virus still damaged my liver. Because of my ignorance it could possibly be too late to stop the progression. I thought if you had normal ALT and AST, that you were okay. But that goes to show you correctional institution's medical care is non existent. In the past ten years The Doctor continuously told me that I was not a candidate for treatment according to DOC protocol because my LFT's had to be elevated three times the norm. I had a viral load done three times during this ten year period. The first time 10 IU; the second time 200 IU; the third time 30 IU. Heres what tells me the institutional doctor was blowing smoke up my ---, I kept asking him why my platelet count had decreased from 303 to 159 through the years. He said, "Because you are gettting older." Are you believing that statement? I bruised very easily and told him you see this type of thing on people that are 80 or 90....not 50. I was grateful that I survived the journey. My top priority is to restore my life and hopefully have 20 years left to do it in. I know all about substandard health care....10 years of it so the medical care I am receiving now is welcomed. Sorry girls, I had to vent there. One of the most daunting punishments was not having access to current information, on anything. Now, ten years later, I am techno challenged(but catching up), don't have a clue on some things....You should have seen me the first time I went into a Super Walmart....I asked for a floor plan. I'm sharing this with you so that you have a better understanding of where I am coming from. This is why I feel fortunate to have found this forum.
Hugs,
Mitzi

The band patterns are just to do with the antibodies. You really need to get a qualitative test done. The results you have posted are normally what people get when they are no longer detected on treatment. I think you will find that you do not have chronic hep c which is why you had normal lft's. For years. You could have elevated liver enzymes now for a number of reasons other than hep c. I have had hep c for over 20 years and was a heavy drinker. I have had normal lft's for years. I was told by my specialist that people with consistently normal lft's are likely to have little or no liver damage. I have fibrosis stage 1 which is amazing considering what I did to my liver.

I am confused, as usual. My LFT"S have been normal for years now. Back in October, they elevated when I went to ER with gall bladder attack. I had quick bloodwork done in the dr's office a month ago on myBilirubin; AST; ALT; ALP; GGT;Amlase; Albumin;and protein. The albumin, protein, ALP were in normal range. The AST, ALT, GGT were still elevated but coming down since October's bloodwork. I don't know what happened to elevate my LFT's...but now that they are elevated:(1) will they continue to go back and forth or get higher? I have been diagnosed since 1998. My LFT's elevated in 2002 and came back down to normal after I quit taking medication prescribed. they didn't elevate again until this past October. (2) Have I had cirrhosis all this time? If so, that means I could be in ESLD? (3) Also, how do I find out where I can get a fibroscan done instead of a biopsy? The Gastro Specialist said it isn't available in the Naples area.
Still confused
Mitzi