Recently diagnosed...

[jessibear]

Hey all! I just got diagnosed with Hep C genotype 1a. I'm just looking for support/advice. I'm 24 and got HepC from vertical transmission, which means my mother gave it to me from birth. She also, just found out she has Hep C as well thanks to a blood transfusion 30+ yrs ago. Anyway I want to know what happens when you see your liver specialist for the first time. How did you react/feel when you first found out? I'm still in shock, no longer pissed though.

[jessibear]

Thank you all so much for the advice and support!

[jules2551]

Hi Jess..welcome to the forum.  I think ALL of us were shocked when we were diagnosed then we screamed, yelled, cried, started researching the disease, got on this forum and met wonderful supportive people with MAJOR knowledge, and keep on researching.  I think one of the most important things I have learned from all of these Dragon Slayers is to get copies of ALL of your blood and test results and keep notes.  Who you called on what day...what they said...what they didn't say...etc.  Another thing, my Dad went with me to my first consultation with the Hepa Dr and took notes while I just listened and tried to absorb.  It was a good thing because I really didn't remember much of the consultation because I was totally overwhelmed.  It helped me tremendously to go back over and read his notes because I just plain forgot.

So good luck and please come back and ask questions!  There are wonderful people on this forum and "no questions are stupid questions".  They will steer you in the right direction if they don't know.

Jules

[Dee1956]

Welcome to the forum, I was completely shocked at my diagnosis in late 2007, I was already in the beginning of cirrhosis. , I think we all go through stages of grieving.  At first you just can not believe it, then I was terrified, Your brain slowly absorbs the information until you can discuss it without crying. I wish you all the best.
Take care, ask any questions you may have we all start out with questions
There are wonderful knowledgeable people here on the forum  You can also conduct a search at the top of the page if you need answers for specific questions
Dee

[orphanedhawk]

Like you, I was shocked at my diagnosis.
I went from shock, to denial to acceptance.

Welcome to the forum.
This is a great group for information and support.

[willbb]

You are certainly not alone and welcome to the group.
When first diagnosed it seems to help to educate yourself with good info. about HCV.
Below is one valuable site you may want to have a look a  and there are many knowledgeable people here that can fill in some of the blanks as well.

Will

http://hepatitiscnewdrugs.blogspot.com/2010/09/hepatitis-c-newly-diagnosed-what-now.html

[eureka254]

Welcome to the forum, and I hope you find your liver specialist informative and helpful.  Some folks never get through the shock and anger stage, so it's good that you're moving forward and looking ahead.  

My suggestion is to start a notebook for yourself, and jot down questions as they occur to you.  The night before your visit, prioritize the question list so that you ask the doc what you consider the most important questions first (in case you run out of time).  Keep the notebook with you so you can jot down the doctor's answers and discussions with you.  

Also, you might find it helpful to ask for copies of all your lab reports at every visit so that you can have a point of reference to better understand things as you go through 'the process.'  Best of luck. ~eureka

[jessibear]

Thank you all so much. I don't know what to expect or when to expect anything. I''m just glad I'm not alone.

[Advocate1955]

My husband was diagnosed with Hep C, genotype 1a, in 2007.  He was shocked and scared by the diagnosis.  Our kids and I were tested for Hep C as soon as he was diagnosed, and luckily we don't have it.  We immediately followed the recommendations for making sure he didn't spread the virus to us (no sharing toothbrushes, no sharing razors, use disposible gloves to handle blood, etc.) First he went through additional lab tests to confirm Hep C, find out the genotype, rule out other additional types of hepatitis infection and HIV, then an ultrasound to look at the liver, a colonoscopy to check the health of his colon, and last a liver biopsy to check to see how much damage the Hep C had caused to his liver.  A month or so after diagnosis, he began his first treatment for Hep C (daily Ribavirin and a weekly injection of Interferon) for 12 weeks.  That didn't work, so he felt very disappointed.  At that time, there weren't other approved treatments available, and then in 2010 he had another 12 week treatment (daily Ribavirin pills and daily Infergen injections) which didn't work, so he felt disappointed and discouraged by that.  Now he is in the 13th week of a third treatment, which appears to be working, so I think he feels very hopeful at this time.
My impression is that living with Hep C and treating Hep C is a bit of an emotional roller coaster, trying a treatment, finding out if it works or not, being seen regularly by the liver specialist, keeping abreast of new research and information, learning about clinical trials when treatments aren't available, waiting to see what the future holds, and lots of hoping.
Hope this helps.
Advocate1955

[summer7799]

I was in shock too. I'm 34 and decided out of the blue to go donate blood for the first time in my life. That's how I found out I had hep c. That was in may of this year. Its been a very long 7 months. Lots of tests and waiting....

[alb572]

Hi, welcome to the forum. I can only speak for myself--I was also completely shocked when I found out the diagnosis. I was 27 at the time and thought that  my future life is doomed--somewhat of the typical feeling for newly diagnosed.
Try to calm down(I know it is very hard) and begin to educate yourself about HCV as we all afraid of the unknown.

I can tell you one thing--- you came to the right place. People on this forum is incredibly knowledgeable(more so than many doctors) about HCV and will help you with whatever questions you have.

As for the expectation from the doctors visit, he/she will definitely run more extensive blood work and most likely recommend to do a biopsy as it is the  most accurate way to find out what shape your liver is in.