Hep C Discussion Forum

Members Login
Username 
 
Password 
    Remember Me  
Chatbox
Please log in to join the chat!
Hep C Discussion Forum -> New Members Area -> Hello I just got told I have Hep C. Im sad.
Post Info TOPIC: Hello I just got told I have Hep C. Im sad.
blipette1209


Member

Status: Offline
Posts: 9
Date:
Hello I just got told I have Hep C. Im sad.
Permalink  
 

Sorry for the length of the  schpiel below, but given I'm Italian and even with immense fatigue, my mouth can run, lolo.  But I think you'll find some things of interest here.  Let me know whatcha think.

I hear ya. I was told a yr ago, though now I can see the symptoms were actually accurring about 2 yrs before, but didnt get a diagnosis. Was  just more irritiable, moody, fatigued, etc.  Anywhoo, the first 6 months were wrought with fears, concerns and educating myself.  I spent tons of hours on the hep c sites, as well as, resarching science in the works.  In an effort to connect with others with hep in my small community after learning from my cardiologist of the great number of even his patients who had hep and how much of  a huge pandemic this virus is, I tried to start a local support group, so I wouldnt feel so all alone in the struggle.  But  given there is little to no info or educating by our govt or medical entities of the public and when you do hear something its usually that the cause is drug use, it breeds a sense that your a bad person if you have it.  Hence a continued big silence. 

The truth is, I beleive, that with the major population who has hep, i.e. seniors,  the greatest  source was from the medical field itself, inc. all the many vacines we boomers had to take as children in school, followed my medical treatment prior to the 90's where blood was used.  (Member back to the days of the push for donating blood- a major income source for junkies!!!).  But you hear ABSOLUTELY NOTHING on those practices. I even investigated vacccinations and there is no state or fed agency, including CDC that can tell you when adequate sterilzation techniques were utilized in the US. In fact, the CDC is the least informing of all the agencies I researched.

Anyway, now I am pretty much in a 'normal' coping mode.  My counts are not high, and indicators show little or damage to liver yet, so just in the waiting mode for science to come up with the med, and Im very confident one is on the horizon. Course I can tell you that almost everyong is different in symptoms and reactions and for me, the use of milk thistle and flaxseed/alpha lipoic acid have done wonders in reducing my symtpoms while awaiting the cure.  I've also eliminated a good deal of chemicals in my diet and in household items, eating organic and natural soaps, etc.   

Dont lose hope. The fascinating thing about this bug, is if you go to viable scientific research centers, university labs etc, you find almost everyday there is new news on the issue, including just 2 weeks ago, they discovered a whole new set of genes in the human body, one of which is a deterent to the hep c med.  Our good fortune is this bugger goes on for decades, and its  generally just 2-3 years for each new discovery to go through the testing and get out to the public

So, life goes on and its good, dont let this little bugger throw you a curve.  Take care



-- Edited by blipette1209 on Saturday 2nd of February 2013 06:24:33 PM



-- Edited by blipette1209 on Saturday 2nd of February 2013 06:26:25 PM

__________________
52baddog


Senior Member

Status: Offline
Posts: 133
Date:
Permalink  
 

Kate: Are u still undetected?



__________________

Geno type 1b, F1 vl 640,000 enrolled in Gilead's sofosbuvir/ledipasvir -week 1 66, week 2 <25
Butcheeyboy


Veteran Member

Status: Offline
Posts: 56
Date:
Permalink  
 

Hi Kelly, Glad you found us all here.

I just turned 51 a couple of weeks ago. I found out about my HepC in 1997

but I think I was living with it for much longer thanfirst diagnosed.

When you talk to the Dr. please be upfront and honest with any/all info.

I had a friend who wasn't very honest about his 'overall' health and treatment

was a disaster for him and he was asked to leave the program.

I wish you all the luck



__________________

May You Have A Safe Trip & A Successful Journey
Zlikster


Guru

Status: Offline
Posts: 791
Date:
Permalink  
 

hey Kelly, we all went thru initial shock ;) it sux, i know! but soon as u get over it, you will get into mode "i want to kick this unwanted tenant out" and start to plan a fight ;) lately science is progressing really well in development of new meds and a vaccine for hcv. I strongly belive that hcv will be thing of the past by 2020 ;) as of now collect as much as you can of medical data: - genotype - viral load - blood tests (liver enzymes, thyroid hormones , proteionogram, etc) - liver biopsy (and/or FibroSure and FibroScan) - ultra sound and of course be nice towards your liver with proper food ;) there are a lot of clinical trials without interferon involved, so maybe you can hop on some. Of course your doctor will know best what to do ;) best!

__________________

GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!
Kel


Newbie

Status: Offline
Posts: 4
Date:
Permalink  
 

Thanks every one of you for your energy and kindness in welcoming me and sharing so much real input, and thanks for the Kelly song! Lol .

I had the ultrasound, which I was told over the phone by my GP, that my liver has "some coarseness, which means it has reacted to the virus .."

I have been referred to a hepatologist who will see me next week.

Its been a weird wait.


Thanks everyone for the great support, and understanding about the animals, and I hope to be a part of this vibrant ring of friendship and to be moving with all of you towards wellness. I truthfully havent been able to be this positive at all times since I found out, but I do, in this moment.




__________________
Mary Jane


Guru

Status: Offline
Posts: 523
Date:
Permalink  
 

wilsondog wrote:

Kelly, Kelly, Kelly,

Since you are in recovery you most likely know that "Don't do something, just stand there" might be a good mantra for the moment when finding out something uncontrollable is happening.  I was diagnosed after getting sober too, just a test my therapist thought might be necessary after hearing my drug history.  I didn't start treatment for 9 years following that because I was asymptomatic, my liver was healthy, and my counts were low.  It was also likely that treatment wouldn't work for me because of my geno type, cause in those days (just over a year ago), the stats were low for 1A's (you'll understand the geno types in time).

SO, try to stay in the moment.  Keep educating yourself, get a liver biopsy, and find out if you have time to wait for the better treatments to come.  Or easier treatment, anyway.

I did Insivek triple therapy for 24 weeks and achieved SVR at week 4 and have remained UND ever since.  I am at 6 months post-treatment now and will find out this coming week if I can call myself cured for keeps.   I am confident  I will test clean.  My treatment experience was not pretty and by no means easy.  This does not mean yours will be a nightmare too, just that you might want to look before you leap.

This is a great place to start.  My best support, education, and endurance came from this forum and I can't praise the people more.  Like a recovery program, here you get experience, strength, and hope.  Take what you need, leave what you don't.  It's not a replacement for your Gastroenterologist, but in all honesty I found more validation here than from any doctor and I have an extraordinary team of physicians- they just weren't going through treatment with me.  i would suggest you spend some time here before you start treatment if you can.  

I am lucky and grateful.  I wish you the best.

Kate

 great advice Kate.. just breath Kelly.. you are in good company.. & Thank God for animals.. .. all the best MJ



__________________

Do not go where the path may lead, go instead where there is no path and leave a trail.Ralph Waldo Emerson

1a - VL 22 million  F2- IL28B- CT / Inck-Riba- Peg triple therapy 9/15/12 UND 4/8/14  8 wks BT ..3/1/2013 done! 3wks Post UND
wilsondog


Senior Member

Status: Offline
Posts: 127
Date:
Permalink  
 

Kelly, Kelly, Kelly,

Since you are in recovery you most likely know that "Don't do something, just stand there" might be a good mantra for the moment when finding out something uncontrollable is happening.  I was diagnosed after getting sober too, just a test my therapist thought might be necessary after hearing my drug history.  I didn't start treatment for 9 years following that because I was asymptomatic, my liver was healthy, and my counts were low.  It was also likely that treatment wouldn't work for me because of my geno type, cause in those days (just over a year ago), the stats were low for 1A's (you'll understand the geno types in time).

SO, try to stay in the moment.  Keep educating yourself, get a liver biopsy, and find out if you have time to wait for the better treatments to come.  Or easier treatment, anyway.

I did Insivek triple therapy for 24 weeks and achieved SVR at week 4 and have remained UND ever since.  I am at 6 months post-treatment now and will find out this coming week if I can call myself cured for keeps.   I am confident  I will test clean.  My treatment experience was not pretty and by no means easy.  This does not mean yours will be a nightmare too, just that you might want to look before you leap.

This is a great place to start.  My best support, education, and endurance came from this forum and I can't praise the people more.  Like a recovery program, here you get experience, strength, and hope.  Take what you need, leave what you don't.  It's not a replacement for your Gastroenterologist, but in all honesty I found more validation here than from any doctor and I have an extraordinary team of physicians- they just weren't going through treatment with me.  i would suggest you spend some time here before you start treatment if you can.  

I am lucky and grateful.  I wish you the best.

Kate



__________________
wilsondog
LC


Senior Member

Status: Offline
Posts: 473
Date:
Permalink  
 

Hi Kelly, I recently found out a few months ago I had it as well.  I am around your age at 49 too, and I went thru the sad phase, the worrying about coping with treatment and (do my sons have this too) phase. 

However now, since the results of my liver biospy aren't indicating that I urgently need treatment - I plan to wait for better drugs.  It stinks to get this diagnosis, but honestly if you have to have HCV, now is a good time because they have some really great stuff coming on the near horizon.  http://expertscolumn.hubpages.com/hub/Interferon-Free-Treatment-for-Hepatitis-C  smile

The more research I've done on the new drugs scheduled to come out, the more optimistic I felt about being diagnosed with HCV.  I hope you are feeling more encouraged as well after you recover from that initial shock.



__________________

Genotype 1a, VL 1,151,923.  51 years old.  Started treatment on AbbVie TOPAZ II clinical trial Oct 10, 2014!  Undetected at weeks 2 and 4! 
2ndTimeAround


Member

Status: Offline
Posts: 33
Date:
Permalink  
 

Kel wrote:

Hello my name is Kelly. Im 51.

My blood panel came back and I have Hep C. This means I became infected in the mid to late 90s, as I have lived clean and sober since 1998.

I thought I was careful. And if I wasnt as careful as I thought I was, I thought I was lucky. I got a HIV test when entering treatment for substance abuse and I was so grateful. So happy. when I tested Nonreactive.

I recently got on a health plan after many years of not having medical care. I realized I was getting older, and not as resiliant as I used to be, I have a physical job and just realistically I knew the grace period was up, and it was time to steward my general health.

So I had the blood panel and I found out.

My Dr is referring me to a Hepatologist for further testing. Im sure it will be the standard protocol. Details of which I am only just researching. Reluctantly. I dont want this to be true. But it is.

I just found out about the effects of treatment. I want treatment. I want to be well again and not have this. I am so worried how the effects of the medications are going to interfere with my ability to do my job.I love my job I work with animals and they depend on me. Many of the animals I care for are misfits who live permanently in my dept and have special needs. I also spend a great deal of time consulting people on animal care. I am worried I wont be able to keep up.

I think I will close now. I thank you for being here. 

Kelly 

so, no worries.  you got it, it could be worse.  start making exercise a part of your treatment, take walks, join a gym, do yoga.  find your spiritual side, whatever a higher power means to you. treatment is like a battle, and the better shape you are in, physically, mentally and emotionally, the better your body will fare...there's an old martial arts saying, "the more you sweat in peace, the less you bleed in war."

start slowly set realistic goals and do not become discouraged!  none of us got here overnight, and none of us will get better overnight, but you can and will get better with time.

nothing but prayers for ya!

j



__________________

geno 1a started peg interferon/ribavirin/incivek 12.07.12.  vl 7.5 copies (32 million) at start. 2.4 (251) as of 01.07.12 vl went up to 5.5 as of 03.05.13. treatment stopped.
2willy


Senior Member

Status: Offline
Posts: 256
Date:
Permalink  
 

You are not alone in the shock, to many different effects we all went through it.  It is good to hear that you have a positive attitude and knowledge when the tests are completed will ease the fear.  Animals are a god send, we think we are here for them but they are are real teachers.  Merry Christmas and try I know it is hard but try to keep it at one day at a time

Bill and Family



__________________

Geno type 1  rib and peg September 2012 , 5 weeks tripple and viral down to < 15 und april Aug 25 finished stay at peg 3 rib and eprex + blood transfussion finished treatment Aug 25 2013
Bills


Guru

Status: Offline
Posts: 648
Date:
Permalink  
 

Hi Kelly

We all know that feeling and what goes trough our minds when we don't know what this really means to the rest of our lives. As you start to post the results of testing there are a few very informed persons here that can help you interpret them. Viral load Geno Type & liver condition. The first thing that stands out is you say infected  mid to late 90's. On the lighter side Compared to a lot of us here you may find out your not so far along  and very treatable  There are some w/  25 -30 + years of infection  still kicking. Treatments have improved and expected to get much better in the next 2 yrs. Try to relax and take it slow. When I look back and remember I thought this was the end of my life  But it's an opportunity to get rid of the virus before it did  me in. And the people here have given me a lot of hope and direction dealing with symptoms.

There will always be somebody here to to discuss you problems and share experience

It sounds silly but I wish you the best for Christmas this year you'll be OK

Bill S  

 



__________________

Bills

Harvoni started 12-12-14 for 24 wks PrevTX Geno 1 stage 3 cirrhosis - non resp Int/ ribv. Started Trial  in Aug 2011 -July 2012 into Incivek relapsed  Feb 2013 Had 72 weeks on interferon & Riba.

dragonfly


Senior Member

Status: Offline
Posts: 395
Date:
Permalink  
 

Hi Kelly,

I know how it feels to be diagnosed. - in one way it's scary but one the other hand you know what is wrong and there is an explanation for the way you feel.  Dx



__________________
Kel


Newbie

Status: Offline
Posts: 4
Date:
Permalink  
 

Thanks guys. I feel a little quiet but I want to thank you so much for welcoming me and replying so graciously.

Im standing with my toes on the edge of being overwhelmed and although I still feel an immense space in my gut your replies were like a hand on my shoulder.

Thank you.

 

Im waiting this week for the tests my Doctor will be ordering.

 

Phil I like what you said, about animals. They are my life and the way I have chosen to serve. I want as much time and energy as I can have to continue doing it.

 

God Bless You All and Merry Christmas

 

Kel 



__________________
Phil G


Senior Member

Status: Offline
Posts: 303
Date:
Permalink  
 

Welcome Kelly. I certainly wasn't thrilled to get the news either, but it also caught me during a period of renewed interest in my health. Not too many years earlier, I probably wouldn't have cared and would have done nothing except drink thru it. I bet working with special need animals will be a blessing. They may sense your special needs, too. My dog did. Come within 5 feet of the couch when she and I were layed up on it during tx and you might loose some fingers to a 12# snarling beast. Then again, she might have just been copying my riba rage towards most humans. But we were best buds.



__________________

Geno 1A, VL 1.9 mm, SOT 12/2/11 - Pegintron/Ribavirin/Victrelis, UND since wk 8, EOT 6/15/12 (28 wks), SVR 11/30/12
Kel


Newbie

Status: Offline
Posts: 4
Date:
Permalink  
 

Hello my name is Kelly. Im 51.

My blood panel came back and I have Hep C. This means I became infected in the mid to late 90s, as I have lived clean and sober since 1998.

I thought I was careful. And if I wasnt as careful as I thought I was, I thought I was lucky. I got a HIV test when entering treatment for substance abuse and I was so grateful. So happy. when I tested Nonreactive.

I recently got on a health plan after many years of not having medical care. I realized I was getting older, and not as resiliant as I used to be, I have a physical job and just realistically I knew the grace period was up, and it was time to steward my general health.

So I had the blood panel and I found out.

My Dr is referring me to a Hepatologist for further testing. Im sure it will be the standard protocol. Details of which I am only just researching. Reluctantly. I dont want this to be true. But it is.

I just found out about the effects of treatment. I want treatment. I want to be well again and not have this. I am so worried how the effects of the medications are going to interfere with my ability to do my job.I love my job I work with animals and they depend on me. Many of the animals I care for are misfits who live permanently in my dept and have special needs. I also spend a great deal of time consulting people on animal care. I am worried I wont be able to keep up.

I think I will close now. I thank you for being here. 

Kelly 



__________________
Neil_Canuck


Senior Member

Status: Offline
Posts: 228
Date:
Permalink  
 

Welcome Kelly. You have come to the right place to get help and info. A bit more info from you would help such as your genotype and viral load. The virus usually takes many years to progress and you don't appear to have had it so long so plenty of time. Many of us have been harbouring the virus since the 70's and only getting treated now. It's a virus that's good at staying hidden. There's lots of new treatments in clinical trials right now so you maybe able to postpone treatment for quite a while. I know it's a scary proposition but generally the outlook is positive. We're all in this together so try to remain positive.



-- Edited by Neil_Canuck on Monday 24th of December 2012 03:42:45 AM

__________________

58 yrs, cirrhotic, Genotype 1b 48 weeks Victrelis triple, SOT 7/13/12 victrelis started week 5. Starting VL 4,000,000  Wk 8 33 copies  Wk 24 UND, EOT UND 6 months post Tx DET. The battle goes on.
Page 1 of 1  sorted by
 
Quick Reply

Please log in to post quick replies.
Hep C Discussion Forum -> New Members Area -> Hello I just got told I have Hep C. Im sad.
Legal Disclaimer:

THIS FORUM, IT'S OWNERS, ADMINISTRATORS, MODERATORS AND MEMBERS DO NOT AT ANY TIME GIVE MEDICAL ADVICE AND IN ALL CASES REFER ANYONE HERE TO SEEK APPROPRIATE MEDICAL ADVICE FROM THEIR DOCTOR.