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Author Topic: Petrified!  (Read 691 times)

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Offline shepsy77

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  • Posts: 3
Petrified!
« on: May 19, 2019, 01:51:45 pm »
Hello there,

My mum (63) has just told me that she has tested positive for hep c following queries of liver function after blood tests. It has completely floored us all, she believes she contracted it during a blood transfusion after a tonsillectomy in 1975. She has had no symptoms although her liver is mildly cirrhotic. She started treatment last week.

I am so scared for her and for myself, my brother and my children. If she did transmit it to me then I have been living with it for 41 years. I’m terrified of the damage it may have done during this time and the journey ahead.

I am booked in for a blood test next week. My GP was quite blase about it and bluntly said “just because your mum has it, doesn’t mean you do”. I know this is the case but my anxiety is through the roof.

My mum is incredibly strong and feels really reassured by the positive attitudes of all the health professionals. She is absolutely stacked with guilt that she may have infected myself and my brother though. My brother is completely cool, thinks I am being really negative by focusing on the worst case scenario.

Myself and my mum are both nurses and have looked after people with end stage liver failure and I am so scared that it is going to be us one day.

I can’t even think about my children having it, it’s just too horrendous although I am aware that if they do have it they are young enough to be cured and have no liver damage THANK GOD!

I am sorry this is so negative, I have awful health anxiety anyway so you can imagine...
Any reassurance or words of wisdom would really really help right now....

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,314
  • Get tested, get treated, get cured, fight Hep c!
Re: Petrified!
« Reply #1 on: May 20, 2019, 12:45:47 am »
Hep c is a blood borne virus. Hep c infected blood must enter the blood stream of an uninfected person. Household transmission is rare. People with hep c are advised to avoid sharing personal hygiene items like razors, fingernail clippers and tooth brushes as there is a small risk of blood being on those items risking transmission but the risk is still relatively low. Even if a health care worker should experience an accidental needle stick involving a patient with known hep c the odds of transmission is only about 1.8%.  For long term  monogamous couples the CDC does not recommend the need to use barrier protection as there are many people here wher one partner has hep c and the other does not.

Hep c is not easily transmitted most common methods of transmission is either by sharing IV drug needles and receiving a blood transfusion prior to 1990 when testing for hep c was developed and the blood supply secured.

Withall that said this is why your doctors are not that concerned about your odds of being infected. While it is prudent to be tested it is very unlikely you or anyone else in your family is infected.

Just to add hep c is a very slowly acting virus it takes decades of infection if ever for hep c to cause liver damage. Only about 20% of people infected with hep c for 20 years will develop liver damage. So that means that 80% won’t.

I was diagnosed with cirrhosis over 11 years ago. With cure of hep c there is the opportunity for the liver to begin to heal. Or at least curing hep c if there is no other cause of liver damage the liver should not continue to develop any additional liver damage.

I hope some of this helps to ease your mind until you can be tested but I believe that you will learn neither you or your loved ones are infected with hep c

Best of luck
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 shepsy77

  • Member
  • Posts: 3
Re: Petrified!
« Reply #2 on: May 20, 2019, 01:33:04 am »
Thank you for your reply. SorryI didn’t make this clear but my mum would have been infected when she had me, her blood transfusion was at age 15 so I believe this increases my risk?

Your reply has given me some comfort though x

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,314
  • Get tested, get treated, get cured, fight Hep c!
Re: Petrified!
« Reply #3 on: May 20, 2019, 01:45:37 am »
The risk of vertical transmission (mother to baby)is about 5%
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 lporterrn

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  • Posts: 1,984
  • LucindaPorterRN
    • LucindaPorterRN
Re: Petrified!
« Reply #4 on: May 20, 2019, 02:34:44 pm »
Hi,
I am a nurse who is now hep C-free. In my years of working with people with hep C and liver disease, I found that generally, people's fears and anxieties seemed to hurt them more than hep C did. This is especially true in cases such as yours where your risk is quite small.

Now, before you think I am being judgmental and about to give you some unsympathetic advice, I'll get to the point. Of course your scared. It doesn't matter if the risk is low, you are having a human response. So until you know the facts, see if you can find ways to contain your fear. For instance, I try to make my car and my bed worry-free zones. I can worry all I want in other places of my life. Perhaps your work needs to be worry-free, as does time with loved ones.

You are free to let your imagination run wild all you want here. I will be surprised if you find out you have hep C, but we are here to help you hold up until you know for sure.

Please let us know when you have your test results. And of course, your siblings need to be checked.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline shepsy77

  • Member
  • Posts: 3
Re: Petrified!
« Reply #5 on: May 20, 2019, 03:09:33 pm »
Thank you for your replies. They have helped, as has  speaking to a wonderful lady at hepctrust (I’m in the UK).

I am going to try and keep busy over the next few days and stop focusing on the what ifs. I am currently sat in bed with a cup of tea and a big bar of chocolate watching GoT and I feel okayish!

I really appreciate your replies, thank you.

Offline lporterrn

  • Member
  • Posts: 1,984
  • LucindaPorterRN
    • LucindaPorterRN
Re: Petrified!
« Reply #6 on: May 21, 2019, 11:15:52 pm »
That sounds like a wonderful plan.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

 


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