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Author Topic: Just diagnosed  (Read 10455 times)

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Offline Lauren1026

  • Member
  • Posts: 16
Just diagnosed
« on: January 18, 2017, 06:17:28 pm »
I was just diagnosed with hep c. I went to my primary care Dr because I am struggling to lose my baby weight 9 months later and during blood work it was found. I have an appointment in a month with a local gastroenteroligist. I am so shocked and scared of this recent diagnosis! I have a son and it seems he has a very low chance of also having it but of course I still worry every time I look at him. I live in maryland and am on state insurance... after extensive searches on Google it looks like a lot of people get denied treatment at first which is giving me terrible anxiety! I saw on my providers website they have forms and all the treatments listed are the new drugs I have heard about so that makes me feel a little better. My liver enzymes are only slightly elevated... one is a 29 and one is a 38 and my # is 800,000. After seeing other posts mine doesn't seem so high. I guess I am just stressed about the unknown of what's ahead for me and my son. I am 32 he's my first baby and I want more eventually! It also seems like there are so many advances in treatment and there is a light at the end of the tunnel but I'm driving myself crazy waiting around for this appointment which seems lIke ages away
January 2017 found out I am positive
Feb 15th 2017 genotype 1a VL850000 F0
MARCH 20th entered in a study 50/50 chance of getting  either harvoni or zepatier for treatment
May 1st begin treatment of zepatier VL450000

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Just diagnosed
« Reply #1 on: January 18, 2017, 06:41:52 pm »
Lauren, it is natural to be scared by a hep C diagnosis, and to be stressed waiting for an appointment with a gastroenterologist (a month or more wait is typical). Your low enzyme numbers are a good indication that your liver is still in excellent shape (just look below at my pre-treatment ALT, AST, and viral load numbers to feel very relieved about yours!) HCV works very slowly, so you will be fine waiting that month. Getting insurance approval for treatment is easier than it used to be, many gastroenterologists know the steps to take to get you approved, and if you run into difficulties, people on these forums can give you step-by-step advice or recommend an excellent patient advocacy organization. The odds are very good that your son doesn't have it, but if he does, he can get cured just like you can. Then you will feel free to have more children.

Wishing you peace,

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Lauren1026

  • Member
  • Posts: 16
Re: Just diagnosed
« Reply #2 on: January 18, 2017, 07:01:14 pm »
Thank you very much for your words of encouragement Gnatty!!
January 2017 found out I am positive
Feb 15th 2017 genotype 1a VL850000 F0
MARCH 20th entered in a study 50/50 chance of getting  either harvoni or zepatier for treatment
May 1st begin treatment of zepatier VL450000

Offline Mugwump

  • Member
  • Posts: 778
  • My number of posts means nothing, piscor ergo sum!
Re: Just diagnosed
« Reply #3 on: January 22, 2017, 05:43:13 am »
I was diagnosed at the age of 41 in 1993. At the time my daughter had just turned ten. She had been scared by our doctor with a needle as a toddler and we could not get her tested for antibodies. So until she was almost 18 years of age and overcame her fear of needles, I had no idea whether or not she had accidentally been infected somehow. My wife is antibody free and has never had a positive antibody test since I was diagnosed.

I fully understand your fears and the struggle of getting to grips with the emotional part of this diagnosis and confirmation of an active infection.

It is hard to be kind to yourself after diagnosis, but you cannot feel shame or blame. If your child does test positive then I can fully understand how you could feel because for years I could not know whether or not I had passed on this disease somehow.

My thoughts and very best wishes are for you and your child. Given the current pathetic state of the US health care system I know you have a fight ahead to get treatment.

My advice is that if cannot get treatment soon and your infection has slow progress to a chronic state then take great comfort in the fact that the greater majority progress only very slowly to severe liver damage. I was most likely infected in 1969-70 and it took over 40 years to progress to cirrhosis. So this disease if managed by your immune system is not a death sentence for everyone infected.

I did drink moderately during my infection before it progressed to cirrhosis. But knowing what I now know about this disease, the doctors recommendation to avoid alcohol consumption completely is the best advice. The reality is it does not ease the stresses of life or help one to forget the fact that they have HCV.

Above all be kind to yourself dealing with this disease, it helps you to be kind to the ones you love and is in no way a selfish act.

Eric
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Just diagnosed
« Reply #4 on: January 22, 2017, 09:26:46 pm »
Lauren, in most states, the fact that you want more children usually increases your chances of getting treatment. Be sure to emphasize this.
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 Lauren1026

  • Member
  • Posts: 16
Re: Just diagnosed
« Reply #5 on: January 22, 2017, 09:36:09 pm »
Thank you Eric and lucinda for your responses and kind words! Every day that passes I feel more hopeful of the future. Trying to stay positive and have less stress is my main focus until my appointment next month. :)
January 2017 found out I am positive
Feb 15th 2017 genotype 1a VL850000 F0
MARCH 20th entered in a study 50/50 chance of getting  either harvoni or zepatier for treatment
May 1st begin treatment of zepatier VL450000

Offline StillChoppin

  • Member
  • Posts: 43
Re: Just diagnosed
« Reply #6 on: January 30, 2017, 04:07:32 pm »
Lauren Stay Positive..
I just as you are, was in a state of panic when i first found out which was back in mid Sept!
You can still see my first post on the main screen.
I couldn't sleep, eat. Going to work i was in constant anxiety!!
Im a big, strong guy who has always bedn healthy & i felt i was just dealt a death sentence..
Well low & behold i found this site & it gave me strength & hope!
To make a long story short, there is so much help out there for us & people that really want to help.
I researched EVERYTHING.
Here i am, 3 months later i just finished my harvoni & didnt have any side effects!
Ive been Hep free since my 3rd week on meds.
What im trying to say is there are so many avenues to get to where you need to go.
You will get there & alot of people are willing to help!!
Best of luck.
God Bless!

Offline Lauren1026

  • Member
  • Posts: 16
Re: Just diagnosed
« Reply #7 on: January 30, 2017, 04:36:51 pm »
Thank you stillchoppin! I'm so thankful to have come across this site it has helped me so much with my anxiety of this situation. I am looking forward to my appt on the 16th to get some answers and solutions for what's next. It seems as if people are getting approved for harvoni and other new better drugs more easily in the last year or so. I of course worry I wI'll be denied but I will take it step by step. Sounds like you were approved quickly and easily!? What state are you in if you dont mind me asking... im in maryland. I just want answers and to get this behind me. I can't help but think about what it's done to my body and if my baby has it... I feel like it's a death sentence even though it is not and many people have had it for many many years. Thanks for your words of encouragement!
January 2017 found out I am positive
Feb 15th 2017 genotype 1a VL850000 F0
MARCH 20th entered in a study 50/50 chance of getting  either harvoni or zepatier for treatment
May 1st begin treatment of zepatier VL450000

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Just diagnosed
« Reply #8 on: January 31, 2017, 08:21:14 pm »
Your feelings and fears are typical. Many people are turned down initially but are able to get the meds soon. The fact that you want more children should work in your favor. I live in California where women of childbearing age and on Medi-Cal (state Medicaid plan) get approved easily.

The bottom line is, that we'll walk you through it, and with you as you find out about your son (he has a very high chance of being negative). If you can, try to stop scaring yourself, but that is much easier to say than do. It's a learned skill, and has helped me immensely, since most of what I worried about never came to pass. And all of what did come to pass, I got through.
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

 


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