Hep C Discussion Forum

Loopy Lisa · Guru

RE: Newly Diagnosed & terrified

Loopy Lisa · Guru

LTChaos wrote:
Hi guys, thanks for the reassuring words. It does help. I need to watch the stories I am reading, I find myself getting a little panicky at times.
All 3 kids have now been tested. My oldest child is very scared of needles & pain, so she was the most difficult. it took 3 of us to hold her down.
My middle child had her test last week & she is negative (yay!). I don't think I will be able to really breath easy until I have the results from the other two. I should know something by the end of the week.

I am so tired. I ended up telling my oldest daughter why she needed the blood work. She took it ok, she has asked a few questions & I am trying to answer & reassure her as best as I can.

It's been a difficult couple of weeks.

Hi LT,

There is so much outdated information on the net it is indeed scary. I had my heart in my shoes watching some youtube clips and outdated forums stating we are all doomed and people saying terrible things that made me want to forget I even had it. Once I became better informed and read how people coped on here with dignity and humor it put my mind to rest. I am not thrilled to have Hep, but it doesn't scare me at all. We are in the best place in history regarding this new disease (28 years since officially named) as a barrage of medicines are about to reach us making that will cure within a few weeks with minimal side effects.

I suspect all your children will be negative, I can imagine how worrying this must be as a parent, but the chances are so slim but understandably worrying as a parent.

There are medical articles with overwhelming evidence to show that Hep is responsible for fatigue, joint and muscle pain, brain fogs, some paralysis, gut problems and those with cirrhosis the list expands. This will not be for every sufferer, some people can live asymptomatic which is why this is known as the "silent killer." It is knowing that is paramount as we can treat and carry on with life without all the fear of dying from the disease. We are fortunate to know we have it. I have read that most people after recovery didn't know how ill they were until they had achieved SVR, they have so much energy they feel 20 again.

I was diagnosed in Spring and a few months on life is normal. I had quiet a few tests in the first month that kept me busy and occupied and as I decided to wait a biopsy, scans etc. It is really just a memory now. I will treat the beginning of next year informed, in good health and with support in place. Give it a little time and the fear goes.

Good luck x

LTChaos · Veteran Member

Hi Lisa,

Hey, maybe we will be going through treatment at the same time. I am still considering going to NYC to make sure they agree with the PA I met with here. Ny Presbyterian Weill Cornell is one place I have been looking. I am only 2 & a half hours north of NYC, so it would not be a terrible drive, as long as I don't have to go there for ongoing treatment. I dont have a lot of faith in the Dr's in our small upstate market.

I am not so terrified as I was at first, getting good information provided here & elsewhere has helped tremendously. I am so thankful to all the members of this forum for taking the time to share your stories.

-- Edited by LTChaos on Wednesday 6th of November 2013 03:51:07 PM

-- Edited by LTChaos on Wednesday 6th of November 2013 03:51:39 PM

LTChaos · Veteran Member

Hi guys, thanks for the reassuring words. It does help. I need to watch the stories I am reading, I find myself getting a little panicky at times.

All 3 kids have now been tested. My oldest child is very scared of needles & pain, so she was the most difficult. it took 3 of us to hold her down.

My middle child had her test last week & she is negative (yay!). I don't think I will be able to really breath easy until I have the results from the other two. I should know something by the end of the week.

I am so tired. I ended up telling my oldest daughter why she needed the blood work. She took it ok, she has asked a few questions & I am trying to answer & reassure her as best as I can.

It's been a difficult couple of weeks.

Zlikster · Guru

Hi,

indeed! consider yourself in the lucky group of chronic hcv patients...GT2 is easiest to treat. I would swap my GT3 for GT2 anytime ;D If you can get newly approved Sofosbuvir+Ribavirin therapy, go for it :) It will be really easy with sx compared to interferon ride.

best

Cinnamon Girl · Guru

Hi again, and thanks for the update. You`re so right about the benefits of getting yourself prepared in advance, and your experience just shows how we should all be proactive with our treatment plans.

Very good news that you have genotype 2, it is indeed easy to treat, and if you wait for the new drug sofosbuvir to be available, as Malcolm said, you won`t need to do the weekly injection of peginterferon, and your side effects will be a lot easier.

Keep us posted, and best of luck! smile

mallani · Guru

Hi LTChaos,

A belated welcome from me too. You're lucky having Geno 2, and if you can wait for something like Sofosbuvir/Riba, your chances of SVR are excellent. Even with Peg/Riba they are >80%. Best of luck. Cheers.

LTChaos · Veteran Member

Well, I had a great visit with the PA today. She spent over an hour talking to me about everything Hep C.

They do not routinely do Liver Biopsies. She said the biopsy will not change the treatment plan. My U/S is enough for them, with my bloodwork to begin to put together a treatment plan.

I have genotype 2, my viral load was 7.5 Million. My AST & ALT levels were slightly elevated (54 & 79), but not enough to indicate anything major happening.

She recommends that I join a class on medications, but wait for the new meds to be approved. My genotype is supposed to be easier to treat...

FYI - my visit did not start out so good - the LPN looked at me when I asked about "SVR" and new treatments & said Hep C is incurable. I told her all the stories I was reading, and she was adament. Now, I have dealt with over-zealous nurses before, so I know to take them with a grain of salt - and she did ask the PA who told her that Hep C was curable now with the new medications. She made sure to tell me that it was indeed curable. I think a big part of it is lack of experience (the nurse admited she was not an expert with hep C). Glad I took the time to get educated before I walked in today!!

I have been running all day, and need to get to bed - but I wanted to thank all of you who have replied & those who have posted so much good information on this site.

Thank you.

tomyboy · Senior Member

Hi first of all, welcome to the forum. You found a great forum. My husband beleives he was infected at a young age....bad choices. He was diagnosed back in the 90's and has tried several treatments. We have been together 23 years and I have been tested 3 times (for my own peice of mind as well) and it has always come back negative. You have found an awesome forum, with lots of supportive people. New meds are getting ready to be approved soon so less side effects for you. Once you know your geno type that will help determine which treatment you will recieve. We aren't too far from you, live in Middletown, NY. It's a long story, but hopefully you will find a doctor in your area which you trust. We did, although we do travel to NYC for checkups, followups and because they tend to know what will be the next available treatment to be approved. They also can inform you about clincial trials. Sounds like you are heading in the right direction. Good luck to you, and if you ever need any info you can inbox me a question.

Cinnamon Girl · Guru

Hi LTChaos, welcome from me too, and best of luck with your appointment, it sounds like you`re already well prepared.

I take it from what you`ve said that you`ve already had a definite diagnosis of Hep C. Your lab results will give your gastroenterologist important information about things like your genotype, liver enzyme and blood levels, and viral load. He might also recommend that you have a biopsy or fibroscan to determine whether you have any liver damage, which will tell you how soon you`ll need to start treatment. Your genotype will determine what your treatment options will be.

It`s often a good idea to write down any questions you have beforehand, and take a notepad and pen with you to jot things down during or straight after the appointment, while it`s still fresh in your mind. You also might find it helpful to read the link in my `sticky` post at the top of this New Members Area, called `First Steps with HCV for the Newly Diagnosed`.

Some of the symptoms you describe, like fatigue and aching joints could very well be related to having Hep C, but it`s not really possible for us to say for certain what exactly is going on with your health issues. The best thing would be to talk over your worries with your gastro.

Try not to worry, it`s all just routine procedure at this stage, just take it step by step. Let us know how you get on, you`re with friends here! smile

LTChaos · Veteran Member

Well, I have an appointment with a PA tomorrow morning at the Gastroentrologist. I wasn't expecting to get in so quick. They have my lab results in, so we'll see what they say.

I've spent most of the day reading here, and on hcvadvocate, so I guess I am ready. Still feeling overwhelmed.

I am not sure exactly what to ask them yet. I'm going to ask what tests they recommend at this point, How they determine the stage, genotype. They did a lot of bloodwork, I can't even remember all of the tests ordered. What other quesitons should I ask?

I have a list of symptoms, do I tell them all the symptoms, or just the 'tummy' issues?

In general, my symptoms have been-

Tummy pain, woke up in agony about a month ago, prompted 2nd visit to DR. thought it was gallbladder. 6 weeks ago woke up w vomitting, diarrea, visited dr, put me on 'prilosec'. I was drinking more than normal (I am not normally a drinker, but over the past 5 months, I was drinking once or twice per week, 2 or 3 drinks, instead of my normal 1 drink 1 per month (if that). (I am no longer drinking at all). I have been depressed.

Also, I was trying to lose weight & started taking Hydroxycut around the same time I started getting sick. I stopped as soon as my stomach issues started getting worse.

Other General symptoms - Joint pain, mainly in feet & ankles, but also shoulders, knees. Fatigue. By 8 PM I am exhausted, always chalked it up to age, and parenting... i have had Ear ringing also, not sure if it is related..

Thanks

-- Edited by LTChaos on Tuesday 29th of October 2013 02:21:41 AM

-- Edited by LTChaos on Tuesday 29th of October 2013 02:23:07 AM

shotgungirl · Member

Hello LTChaos!

I was diagnosed with HepC a few months ago.
I have two sons, 2 & 4 years old. They were all I could think of at first.

There are so many people in this group that are extremely knowledgeable and supportive, I was glad I came across it and I visit frequently to read posts and ask questions, or just to share my personal updates.
You're sure to fit in here just fine. Nice to meet you, and just know that you are not alone!

Shotgungirl (Kayla) :)

rebeca · Veteran Member

Hi LT,

I made the same mistake when I was 20, I often feel guilty , but I realize that in my life I´ve done right and wrong things. In general it seems you have done very right, a good job, good partner, three children .When I shared my story in this forum, I realize that we all have our stories, and the most important thing is the present, and what we can do in the future.

It seems that treatments are better, and there are a lot of research.

So relax, it´s very possible that you´ll have a very good prognostic. I hope the same to all of us.

It is great that we have this forum

Big hug

-- Edited by rebeca on Sunday 27th of October 2013 07:04:44 PM

-- Edited by rebeca on Sunday 27th of October 2013 07:12:07 PM

LTChaos · Veteran Member

Thanks guys, your replies really do help. I am learning all I can and am sure I will have a lot of questions as time goes on.

Thanks alot...

JoAnneh · Guru

I too made mistakes at the age of 15 that caused me
To get Hep C. Wonder we are alive!
I am 54 and just achieved SVR.
My two sons were born by C-sections and
I didn't know to protect them...they tested
Clean
My husband of 25 years is Hep C free too.
I was tested for gall stones, gall ladder removed
And liver showed chirosis.
U r not alone and this forum has been
A huge support for me and others.
Glad u found us.
Faith and hope is the best focus

Loopy Lisa · Guru

Welcome LT,

Well no need for shame here, I have it too, 1 million virons at my last count all happily having a party in my RNA.

You made a mistake at 15-16, you were actually nothing more than a child! I don't think you should be so hard on yourself.

It is very low rate of transmission from mother to child something like 4%. If it puts your mind to rest test them but i'm sure it'll be fine.

I am 39 and probably had it some 20 years. I had so many tests but they never one tested me for Hep even though I had a few years back elevated liver stats. The mind boggles.

All my partners have tested negative, and were exposed to blood and things over the years when I didn't know I had Hep.

WHen you get your test results you can decide what you will do next.

Try to relax and not too worry, it won;t help in the long run....Hugs x

HR · Senior Member

Hey LT

i know its a blow when you first find out. It will work itself out. The good news is that all the new drugs are about to be approved in the next year with minimal if any side effects. I just breezed through a Gilead trial and am waiting on my SVR12. If you like you can go to the clinical trial section of this forum and read peoples experiences on the new drugs coming out.

Hang in there and this a great forum to help you get through your situation. There will be others posting who can answer any question you may have.

RH

LTChaos · Veteran Member

I am feeling very overwhelmed, sad, ashamed, devastated.

I am 44 years old, mother to 3 elementary aged children. I started feeling stomach pain recently, and thought I was having gallstones. During the ultrasound, they said there was a small hemangioma on my liver, and my liver enzymes were slightly elevated. Up until that point I was convinced I had gallstones, but the tests all came back clear. I still could not explain the general yucky feelings I was having. I am pretty ignorant about Hep C. I made some mistakes with drugs & alchohol when i was 15 or 16 years old .. I cleaned up, graduated from high school, attended college, got a great job that I have excelled at - and really felt like I put my adolesent mistakes behind me. I had heard about hep c in the news, and even asked my dr's about it, all told me not to worry... But as I was googling symptoms, I decided to get tested (to answer the nagging worry in the back of my head)... My Dr again tried to tell me he did not think it was necessary i test. I insisted, and here I am.

My follow up test came back & I am just waiting for my genotype & other results. I feel like such an idiot.

I worry about my kids more than anything. My oldest is 11, and I have spent the last week playing the last 11 years of motherhood back in my head. I have to have them tested, and I am sick over the fact that they have been exposed.

I am waiting now for the Dr to call me back - we do not have very good Dr's where I live (near Albany NY), so I am worried about the expense of having to travel to Manhattan for treatment.

My husband has been awesome. The silver lining in all this, don't know what I would do without him.

Anyway, I am glad I found a group of people who have been here, done that. RIght now I just feel totally alone.

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