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Author Topic: I don't understand what's going on  (Read 9008 times)

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Offline Rodders

  • Newbie
  • Posts: 2
I don't understand what's going on
« on: July 28, 2018, 05:11:41 am »
Hi I was recently diagnosed following a referral for opinion, tested, going for an ultra sound, showing massive scarring on my liver to be told I had cirrhosis, would need further bloods and an appointment in 4 weeks with the hepatitis nurse specialist,
I became alarmed on reading a letter to my gp( courtesy copy) which says I have
Hepatitis  C Genotype3a
Liver function normal following a blood test April 2018 but there was no viral level repeated so it will need to be done on next appointment
Fibroscan showed median of 22.9kpa
an IQR of 3.6 koala
And an IQR our engagement of 16
Showing F4 compensated cirrhosis
It goes on to say the nurse will see me next Friday to make a decision about whether or not we can make a decision to Apply for treatment
Ref feral to a consultant gastroenterology the rest scarring to liver and cirrhosis
Another ultrasound
Further bloods including viral level for liver cirrhosis!
Please can someone make sense of all this for me especially regarding my options for now and in the future! I suffer from depression and this worry is making me ill

Please help me!!!!!!!!!!!

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: I don't understand what's going on
« Reply #1 on: July 28, 2018, 11:24:36 am »
Hi and welcome.

First take a breath and exhale I know this is all difficult to take in.

I had hep c for 37 years before the new generations of meds were approved and I was finally cured. During that time I treated 3 times with variations of the old treatment interferon injections for 6 months each time but had no effect on my infection. Atfter being infected for 30 years I was diagnosed with liver cirrhosis.

Thanks to the new treatments I have been cured of hep c for 3 years now but I have had liver cirrhosis for over 10.5 years. You can live for many years with liver cirrhosis the important thing is to stop any alcohol consumption and follow your doctors advice. Getting some exercise and eating a healthy diet is also important.

Not sure what you mean here with “Further bloods including viral level for liver cirrhosis” There is a blood test called fibrosure that can estimate level of liver damage and there is a blood test to determine the viral load for hepatitis c so I think maybe the viral load test for the amount of Hepatitis c circulating in your blood is likely what that is about.

Now that I am cured of hep c I still have cirrhosis and Will need to be followed by my liver specialist for the rest of my life. I get a liver ultrasound and blood testing every 6 months and an annual office visit.

With cure depending on the amount of damage liver cirrhosis may begin to improve about 50% of the time. But even if your liver doesn’t improve you won’t have ongoing damage from the hep c virus so you should not progress to further liver damage.we are also at risk to develop liver cancer (HCC) the reason we need follow on monitoring, but with cure that risk is also greatly reduced.

Let me know if you have any more questions as they arise I will try my best to help.
« Last Edit: July 28, 2018, 11:26:38 am by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Rodders

  • Newbie
  • Posts: 2
Re: I don't understand what's going on
« Reply #2 on: July 28, 2018, 12:35:37 pm »
Thank you!

 


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