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Author Topic: Looking for Support/ Clarification  (Read 11808 times)

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Offline lilygirl

  • Member
  • Posts: 4
Looking for Support/ Clarification
« on: November 29, 2014, 02:39:52 am »
Hi all, lots on my mind

I am 23 and I was diagnosed a month ago. I have none of the risk factors, but suddenly jaundice  one day, went to ER, was admitted and billy at its highest was 17.9, my enzymes were in the 2,000. They started talking about transplants right away; what a whirlwind.

After repeated disbelief of never using drugs, my doctors have finally agreed they believe I received Hep C from a doctor who was doing blood "cleaning" treatments on me to boost my immune system and revived liver damage from vitamins I was on.

Was just in the hospital again a few days ago for horrible pain/temperature. They were scheduling surgery to take gallbladder b/c it was enlarged out but after a liver biopsy they believe pain was coming from my liver after results of "severe hepatitis." Still waiting to hear full report from my Hep doc. All I know is it is not autoimmune, but is "severe." Must wait until the Hep team meets on Tuesday to hear what they have to say. Very nervous--do not know what "severe hep" means and counting down the days to hear what is going on.

My numbers have come down on their own. Billy is at 5 now, enzymes going up and down, I was down to almost normal two weeks ago, shot back up to 800s last week, alt phos at 175 but coming down again. WHY?! I am resting, no meds, eating well.

Actually feeling much worse since my second hospital visit. Doctor wanted to wait to start treatment in January but think I am going to push to try even sooner. I'm basically bed ridden at this point which is not like me at all. I have very good insurance so hoping that will make a difference in getting meds. Not so sure though since I am newly diagnosed?

Having horrible joint pain, fatigue, can barely pick heavy things up, back pain, chest pain (is chest pain a symptom ???), no appetite, still a bit jaundice, nausea.

I was diagnosed with Fibromyalgia about 6 years ago....yes a "catchall" so who knows what it is, but I've dealt with a lot of these symptoms before and just fought against them and lived life and was never a complainer/bed lounger but this Hep C is killing me!! Stopped work which is very unlike me.

Do you guys think treatment soon is a good idea, or wait it out? I'm genotype 1a; can't remember what my viral load was exactly but my doc said I was VIP status, it was high.

Still processing this all- it's only been a month but my doctor seems to be acting pretty quickly because of my high numbers; it's a lot to swallow!!

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Looking for Support/ Clarification
« Reply #1 on: November 29, 2014, 03:21:09 am »
Hi Lily!

Welcome! I am sorry you are being confused by the doctors.  I find it helpful to bring a notebook and take notes. I also put in the questions I want to ask.

Take care, take a deep breath, hopefully you have someone close to you that you can talk to for support and a hug.

~Mel~
« Last Edit: November 29, 2014, 08:22:31 am by BattleTheBeast »
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline Ladybug2013

  • Member
  • Posts: 9
Re: Looking for Support/ Clarification
« Reply #2 on: November 29, 2014, 07:04:17 am »
Hi Lily:

Welcome, I also was recently diagnosed with hep c, am only 25. I can't believe doctors don't check for this virus, apparently I got it from a blood transfusion when I was born. I too was diagnosed with fibromyalgia a few years ago. Making connections now with all symptoms and its still unreal to me how it went undetected my entire life. Have you ever experienced frequent/severe nosebleeds? From what I've researched and read so far there is a high cure rate with the medicines available now so I have high hopes!

I will keep you and your family  in my prayers, I hope you get through this and are able to get your life back! Stay strong!

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Looking for Support/ Clarification
« Reply #3 on: November 29, 2014, 07:51:14 am »
Lily,

Quick question for you, is it possible you got infected somehow in the last six months, what you are describing with the numbers going bonkers like you said could be you have Acute Hepatitis which means you still have a chance for your body to clear it on its on.

It's possible to even get it at a nail salon that isn't as hygienic as they should be, or maybe a recent tattoo?

This is possible,hopefully one of our more knowledgeable forum members will chime in!

~Mel~
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline Bucky

  • Member
  • Posts: 341
Re: Looking for Support/ Clarification
« Reply #4 on: November 29, 2014, 08:51:36 am »
Hi Lily:

Welcome, I also was recently diagnosed with hep c, am only 25. I can't believe doctors don't check for this virus, apparently I got it from a blood transfusion when I was born. I too was diagnosed with fibromyalgia a few years ago. Making connections now with all symptoms and its still unreal to me how it went undetected my entire life. Have you ever experienced frequent/severe nosebleeds? From what I've researched and read so far there is a high cure rate with the medicines available now so I have high hopes!

I will keep you and your family  in my prayers, I hope you get through this and are able to get your life back! Stay strong!

Hello Ladybug2013,
Since they didn't start screening donated blood in 1992 it is quite possible that the blood transfusion did infected you. Your age group is not one that you generally see HepC in and doctors don't screen for it. My brother and sister are in the age group where you are suppose to check for it and they had to insist before their doctor would check them. Both were negative.
Bucky
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Looking for Support/ Clarification
« Reply #5 on: November 29, 2014, 09:44:13 am »
Hi Bucky,

Why do you think they don't want to check for the Hep? Isn't it better to be safe than sorry?I just don't understand it. They should be checking for it just like they check for HIV.

I think we should all get shirts that say "Make them Check for Hep". I can't believe more people don't donate blood and find out that way.

~Mel~
« Last Edit: November 29, 2014, 09:46:53 am by BattleTheBeast »
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline Bucky

  • Member
  • Posts: 341
Re: Looking for Support/ Clarification
« Reply #6 on: November 29, 2014, 09:59:46 am »
Hi Bucky,

Why do you think they don't want to check for the Hep? Isn't it better to be safe than sorry?I just don't understand it. They should be checking for it just like they check for HIV.

I think we should all get shirts that say "Make them Check for Hep". I can't believe more people don't donate blood and find out that way.

~Mel~

Mel,
IDK. I wonder if they don't want to get involved in the approval mess? If that is the reason they need to turn in their license.
Bucky
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline Mike

  • Member
  • Posts: 999
Re: Looking for Support/ Clarification
« Reply #7 on: November 29, 2014, 10:07:05 am »
Hi lilygirl,

What was the final outcome with the gallbladder? The reason I ask is that I had a friend with a similar experience (went jaundice,  bilirubin and liver enzyme all out of whack, liver significantly inflamed, pain in the side, chest and so on). He was in the hospital for 10 days and his gallbladder was removed (went home the next day).

He's fine now.

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

Offline lilygirl

  • Member
  • Posts: 4
Re: Looking for Support/ Clarification
« Reply #8 on: November 29, 2014, 11:48:21 am »
Hi Lily:

Welcome, I also was recently diagnosed with hep c, am only 25. I can't believe doctors don't check for this virus, apparently I got it from a blood transfusion when I was born. I too was diagnosed with fibromyalgia a few years ago. Making connections now with all symptoms and its still unreal to me how it went undetected my entire life. Have you ever experienced frequent/severe nosebleeds? From what I've researched and read so far there is a high cure rate with the medicines available now so I have high hopes!

I will keep you and your family  in my prayers, I hope you get through this and are able to get your life back! Stay strong!




Hi Lady Bug,

Yes, starting to wonder if the fibro were actually hep symptoms all along. Although IF I received the Hep  C from this specific doctor that was doing blood treatments on me, I was recently diagnosed. So hard to pinpoint what really caused this though.

I never get nosebleeds though--so unfortunately I can't help you there. I too have heard from my doctor that I will be cured because the drugs coming out are amazing. He wanted to wait to start treatment in January for a few reasons, but one of reasons is that there are supposed to be up to two NEW drugs coming out by then. So great!! I have great hope for all of us.

Sending good thoughts and energy your way!

Offline lilygirl

  • Member
  • Posts: 4
Re: Looking for Support/ Clarification
« Reply #9 on: November 29, 2014, 11:56:47 am »
Lily,

Quick question for you, is it possible you got infected somehow in the last six months, what you are describing with the numbers going bonkers like you said could be you have Acute Hepatitis which means you still have a chance for your body to clear it on its on.

It's possible to even get it at a nail salon that isn't as hygienic as they should be, or maybe a recent tattoo?

This is possible,hopefully one of our more knowledgeable forum members will chime in!


~Mel~

Hi Mel,

Thanks so much for reaching out. Yes, if I did receive Hep C from the doctor doing the blood stuff, then I was infected just 3 months ago. When my gastro doc was quickly reading the results of my biopsy on the phone I could have sworn he said it was not acute though...is it possible to see that in a biopsy. I was under the impression that chronic simply was defined by having Hep for a longer period of time.

I have never gotten a tattoo, I do have my ears per iced though and get my nails done every few weeks. (now I am stopping though, I have been a crazy person about worrying about infecting others). Also was just in college, maybe a roommate used my razor or someone they had over. There is no telling!!

So hard to pinpoint what it is. The blood treatment I was received from a doctor seems most likely though. He was taking a vile of blood out, "cleaning" it in a machine under UV light and then injecting it back in me. Maybe the machine wasn't clean etc etc.

Hope you are doing well. Thanks again :)

Offline lilygirl

  • Member
  • Posts: 4
Re: Looking for Support/ Clarification
« Reply #10 on: November 29, 2014, 12:08:19 pm »
Hi lilygirl,

What was the final outcome with the gallbladder? The reason I ask is that I had a friend with a similar experience (went jaundice,  bilirubin and liver enzyme all out of whack, liver significantly inflamed, pain in the side, chest and so on). He was in the hospital for 10 days and his gallbladder was removed (went home the next day).

He's fine now.

Best wishes, Mike

Hi Mike,

I definitely have every similar symptom to your friend. Is he doing any better with the gallbladder out??

They set the surgery but then decided to do the biopsy to see how my liver was looking. My gastro doc believed it to be my gallbladder but my liver/hep doc came in and thought it was my liver.

I only had an enlarger gallbladder, none of the other markers for getting the gallbladder out were coming up, my billy did go up from 5 to 8, my enzymes jumped from normal to 800s and alt phos went to 175, but supposedly they should have jumped more to be markers for it to be connected to my gallbladder; however, they said it was possible that just having an enlarged gallbladder could cause the pain I was feeling.

Still waiting to hear full biopsy results from my liver/hep doc. But my gastro doctor said he doesn't want to jump to taking out my gallbladder because after seeing results of biopsy he thinks it could be the liver causing the pain/enlargement.

Waiting on the gallbladder decision since this could all be caused by the liver. Basically, my doctors just aren't sure if it's the gallbladder or liver and they don't want to jump to anything. I am on antibiotics for my enlarged gallbladder in the meantime.

Offline Mike

  • Member
  • Posts: 999
Re: Looking for Support/ Clarification
« Reply #11 on: November 29, 2014, 12:35:16 pm »
Hi Lilygirl,

Yes. My friend is a 100% better (this just happened a few months ago).

What was happening is that a gallstone was partially blocking the bile/hepatic duct, causing toxins to backup in to the liver. This, in turn, caused his liver to become significantly inflamed (hepatitis), jaundice and stomach, chest and back pain. Had he waited another week to present at an emergency room (he only went after his daughter forced him to go), his liver most likely would have failed.   

Best wishes, Mike

Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

 


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