Welcome, Guest. Please login or register.
February 03, 2023, 09:09:19 pm

Login with username, password and session length


Members
  • Total Members: 6292
  • Latest: DianeM1
Stats
  • Total Posts: 55094
  • Total Topics: 4846
  • Online Today: 69
  • Online Ever: 1314
  • (June 22, 2016, 05:23:42 am)
Users Online
Users: 0
Guests: 33
Total: 33

Welcome

Welcome to the Hep Forums, a round-the-clock discussion area for people who have Fatty Liver Disease, Hepatitis B, C or a co-infection, their friends and family and others with questions about hepatitis and liver health. Check in frequently to read what others have to say, post your comments, and hopefully learn more about how you can reach your own health goals.

Privacy Warning: Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.
  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.
  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.
  • Product advertisement (including links); banners; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from the Hep Forum Moderators.
Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: Recently diagnosed  (Read 10320 times)

0 Members and 1 Guest are viewing this topic.

Offline Ladybug2013

  • Member
  • Posts: 9
Recently diagnosed
« on: November 25, 2014, 11:30:42 pm »
Hello, I am new to the forum, I found this website while doing some research. I was diagnosed last week with Hep C genotype 1a. My AST is 55, ALT is 88, viral load is 6.161
I'm so glad I found this website, its very informative and is really helping me cope with this really bad news. I'm still very much in shock but have stopped crying for the most part :( I am 25 years old, will be 26 in February. I was born in 1989 with a birth defect that required a blood transfusion to save my life, but up until 3 weeks ago I was unaware I have most likely had the virus all my life ever since the blood transfusion. I applied for life insurance with my husband 3 weeks ago and they found the antibodies in my body, thank God they did and I was able to catch it now rather than later. My husband tested negative and now we are waiting for the results for our 22 month old daughter, we are praying for good news! It will truly devastate me if I gave this virus to my baby girl...
I am waiting for approval from my insurance company for Harvoni. Can anyone advise how long it usually takes for the approval? I have a good GI who assures me he will fight for me until I get approved for treatment, I'm just curious to know what happens if I do get denied. I know I can appeal  but would I need to do more testing to show the severity of my case? My GI says I won't need a liver biopsy right now. After everything I've read so far I am horrified at the thought of what's to come but I also have hope I can be cured. I'm not the healthiest person ever, i am a bit overweight and decided to change my diet completely so I don't cause any more damage to my liver. During college I did pick up some bad habits like smoking cigarettes and drinking alcohol, I noticed after doing this frequently I developed random hives, they would come and go whenever. I thought I had developed allergies to something but didn't care to investigate, I would just take a Zyrtec or Claritin to clear up the hives. Once I did quit smoking and consuming alchohol the hives disappeared! I'm sure now the hives were linked to the damage I was doing to my liver, along with the damage the virus is doing, I'm not sure based on my lab results how much damage has been done so far. When the doctor confirmed the diagnosis I was so out of it and in disbelief that I didn't even ask about how much liver damage I have if any...
Well that is my story, I will keep you all posted if I do get approved for harvoni and will post my progress. Looking forward to sharing good news with everyone!

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Recently diagnosed
« Reply #1 on: November 26, 2014, 02:20:17 pm »
Welcome Ladybug. How amazing that you could make those changes such as quitting smoking and alcohol. Your daughter has a good role model.

It may take awhile before you are approved. You will probably be denied the first time around. Don't panic. The HCV guidelines were just changed to give women of child-bearing years a higher priority. http://www.hcvguidelines.org/full-report/when-and-whom-initiate-hcv-therapy You might tell your doc that you were thinking about having another kid (all you have to do is be thinking about it - you don't have to lie - just think about it) - this may raise the stakes.

If denied a second time, then contact http://www.mysupportpath.com/
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Ladybug2013

  • Member
  • Posts: 9
Re: Recently diagnosed
« Reply #2 on: November 27, 2014, 10:25:28 am »
Hi Lucinda, thank you for this information! I truly appreciate it.

Sadly yesterday my husband received a call from the pediatrician advising my daughter tested positive for the antibodies. It was very hard to hear this news, I'm doing my best to stay strong... I'll be calling on Friday to schedule an appt. to do the viral load test on her. Is there anyone here with a similar case? What will happen to my daughter?


Offline Mike

  • Member
  • Posts: 999
Re: Recently diagnosed
« Reply #3 on: November 27, 2014, 12:57:15 pm »
Hi Ladybug,

Being diagnosed with Hep-C can be a very emotional experience, which is a normal reaction. Obviously, these feelings are magnified when an infant has a potential infection.

Lots of "whys" and"hows" and "what ifs." Take a deep breath - you and your family will get through this.

A positive HVC antibody test is by no means conclusive that your daughter has an active infection. It simply means she was exposed to the virus and developed the antibodies (the body's natural defense/response when exposure occurs).

Here's some information regarding toddlers:


"How do you diagnose HCV in children?

In children over 2 years of age, HCV is diagnosed by testing similar to that used in adults. If a child or adolescent is suspected of having HCV, initial testing is to screen with an protein in the blood that is made by the body to fight germs such as viruses or bacteria. Antibodies can be a result of receiving a vaccine or coming into contact with a virus. They protect the body against future infections.

In infants born to mothers with HCV, the antibody test is not useful and can give false positive results. The mother’s HCV antibody crosses the placenta like all antibodies and can stay in the blood of an infant for up to 18 months. Thus you cannot use the anti-HCV antibody test to screen for HCV in infants less than 18 months of age. The American Academy of Pediatrics (AAP) recommends testing with the antibody test at 18 months or later since treatment of HCV is not recommended for infants less than 3 years of age. Many families are anxious about the risk of infection to their child. In that circumstance, we recommend testing with the HCV viral test like the HCV-PCR. This should not be done until at least 3 months of age due to a high rate of temporarily positive tests in infants under 3 months of age.

What happens to children who are infected with HCV?

The outcome of HCV infection depends somewhat on how the child acquired HCV. For children who acquire the infection by vertical transmission, up to 40% will clear the virus on their own (spontaneous clearance), without treatment by 2 years of age. There are reports of children clearing the virus on their own as late as 7 years of age. This is different than adults who can have spontaneous clearance, but virtually never after 6 months after their infection. Those children who do not clear the virus by 2 years of age are considered chronically infected with HCV. In children who acquired the virus by vertical transmission, most have mild liver disease with upwards of 80% with minimal to no scarring of the liver (fibrosis) by 18 years of age..."


I know this is a difficult time for you and your husband, and both of you will have a lot of questions. Please feel free to post any question in this forum.

Also note that there is a lot of outdated information on the Web regrading Hep-C treatments. This is because of advancements made in the past 2 years. I would encourage you to avoid information issued prior to 2012, as it would be considered dated.

Please understand that there are very effective treatments currently available and this infection can be cured.

Best wishes and your and your family are in my thoughts and prayers, Mike

« Last Edit: November 27, 2014, 12:58:47 pm by Mike »
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Ladybug2013

  • Member
  • Posts: 9
Re: Recently diagnosed
« Reply #4 on: November 28, 2014, 06:28:12 pm »
Hi Mike:

Thank you so much! You are right, I'm still hoping and praying my daughter that my daughter only has the antibodies and that the virus is not active. I'll keep you all posted on her results! I'll def. keep trying to stay positive and focus on the pros over the cons.

I have been contemplating everything and making connections with prior symptoms I've exhibited since I was a child. I've always suffered from chronic nosebleeds and still do (even had my nose cauterized). I read somewhere that chronic nosebleeds is linked to hep c. Has anyone else experienced this? If I am cured after treatment will the nosebleeds stop?

Many thanks for all this helpful information and for keeping my family and I in your prayers!

Offline Ladybug2013

  • Member
  • Posts: 9
Re: Recently diagnosed
« Reply #5 on: December 19, 2014, 01:00:49 pm »
Hi all, wanted to give an update. My daughter has the antibodies for hep c but a zero viral load. Her pediatrician told me I don't have to worry but if I want it reconfirmed for reassurance I can take her to a pediatric GI (which I will, but what a relief it was to hear that news this week, I cried from the joy!! God is good and I know he is listening to my prayers!). In regards to myself, I got a call from my insurance company today, Affinity, telling me they denied the request for Harvoni because I do not have stage 3-4 fibrosis (I'm borderline stage 1), it's dissapointing and frustrating but my doctor is appealing the denial. He is also going to request olysio+sovaldi. I should have an answer by next week hopefully. Wishing you all happy holidays and a prosperous new year!

Offline Mike

  • Member
  • Posts: 999
Re: Recently diagnosed
« Reply #6 on: December 19, 2014, 03:04:53 pm »
Hi Ladybug2013,

First, I'm so glad your daughter is negative for the virus! That is great, great news and I'm sure it lifted a heavy weight off your heart!

Unfortunately, being denied treatment seems to be the norm; but you don't have significant liver damage which is also great news. Since Hep-C progresses slowly, you have a lot of time to wait.

The good news is that you will  most likely be approved in the near future. So take comfort in that fact.

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

 


© 2023 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.