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What should I expect?
I have just been diagnosed with Hep C and am being referred to a gastrologist to start treatment. Can anyone tell me what to expect? Will I be able to work thru this? I also have Fibromyalgia, high blood pressure, & 2 herneated discs. I am a single mom with no family nearby so I am pretty scared. Any advice?
First ya newbies - Welcome to a group of folks who know their shindig.
(*GRIN* - newbie ----- that's the terminology to folks who are new to this forum and new to this disease. I consider it a badge of honor --- one like --- Hey welcome to the club --- here are the ropes... LOL!)
These folks here are a wealth of knowledge - both past and present.
Right here at your fingertips is so much stuff - your head is gonna spin around backwards and forwards - you'll make Linda Blair look normal... LOL!
When I first came here - I knew nothing and was terrified --- I'd been through most of a treatment with horrible side effects by myself... I thought my world was over - but I managed to read all of the things going on here.
Without these folks here - I don't think I would have made it.
I read like a fiend... About treatment - about side effects --- about what was going to happen...
And I found that for each person everything happens a little differently.
Usually the steps from learning about having it --- to trying to cure it are about the same:
1. You find out you've got it
2. You get your Geno Typing and your Viral load
3. Some docs get biopsies - to determine your level of damage
4. Some docs want you to treat immediately
5. Some docs want you to wait
6. You go through a frenzied feeling like you've been handed a death sentence feeling... And some of us go through a real grief process... (sadness, anger, frustration, disbelief, acceptance, etc.)
7. You do a LOT of waiting...
8. You make the decision to Treat or not to Treat.
9. You either treat --- or you do watchful waiting
But first and foremost --- KEEP HUMOR in your life.
Remember that if you have this disease - you need to learn all that you can -- and learn that what you learn now --- it's just a constant FLOW -- it changes with new trials - new tests --- and more...
Each day - a person on the board will ask a question - and that will gather more information.
So --- go through all of the posts that you have time for --- read them for a couple of days...
Then come back with questions - because you'll have a basic idea at that point what to expect.... Or at least you'll feel more confident...
You'll also get to meet a TON of really cool folks --- you'll get to know them... You'll get to know their personalities --- how much they've been through --- how much they know..
And you'll become very informed.
Also --- check out the site JANIS and Friends www.janis7hepc.com
If the link doesn't stay --- please just GOOGLE Janis and Friends and you will come up with it.
It's a great site to give you a lot of information especially when you're in the beginning searching stages and you're having a lot of confusion and thoughts swirling around like mad.
OK - now that you've read this entire post --- You've graduated to NEWBIE Extraordinaire! LOLOLOLOL!!!!
I wish each of you personally the best of luck.. And we're all here if you have any questions...
Hugs,
Meki
(*GRIN* - newbie ----- that's the terminology to folks who are new to this forum and new to this disease. I consider it a badge of honor --- one like --- Hey welcome to the club --- here are the ropes... LOL!)
These folks here are a wealth of knowledge - both past and present.
Right here at your fingertips is so much stuff - your head is gonna spin around backwards and forwards - you'll make Linda Blair look normal... LOL!
When I first came here - I knew nothing and was terrified --- I'd been through most of a treatment with horrible side effects by myself... I thought my world was over - but I managed to read all of the things going on here.
Without these folks here - I don't think I would have made it.
I read like a fiend... About treatment - about side effects --- about what was going to happen...
And I found that for each person everything happens a little differently.
Usually the steps from learning about having it --- to trying to cure it are about the same:
1. You find out you've got it
2. You get your Geno Typing and your Viral load
3. Some docs get biopsies - to determine your level of damage
4. Some docs want you to treat immediately
5. Some docs want you to wait
6. You go through a frenzied feeling like you've been handed a death sentence feeling... And some of us go through a real grief process... (sadness, anger, frustration, disbelief, acceptance, etc.)
7. You do a LOT of waiting...
8. You make the decision to Treat or not to Treat.
9. You either treat --- or you do watchful waiting
But first and foremost --- KEEP HUMOR in your life.
Remember that if you have this disease - you need to learn all that you can -- and learn that what you learn now --- it's just a constant FLOW -- it changes with new trials - new tests --- and more...
Each day - a person on the board will ask a question - and that will gather more information.
So --- go through all of the posts that you have time for --- read them for a couple of days...
Then come back with questions - because you'll have a basic idea at that point what to expect.... Or at least you'll feel more confident...
You'll also get to meet a TON of really cool folks --- you'll get to know them... You'll get to know their personalities --- how much they've been through --- how much they know..
And you'll become very informed.
Also --- check out the site JANIS and Friends www.janis7hepc.com
If the link doesn't stay --- please just GOOGLE Janis and Friends and you will come up with it.
It's a great site to give you a lot of information especially when you're in the beginning searching stages and you're having a lot of confusion and thoughts swirling around like mad.
OK - now that you've read this entire post --- You've graduated to NEWBIE Extraordinaire! LOLOLOLOL!!!!
I wish each of you personally the best of luck.. And we're all here if you have any questions...
Hugs,
Meki
alot of blood work, then a liver biopsy, alot of anxiety, but please do alot of reading and getting info on line. ive had 2 liver biopsies, usually given every 5 yrs. im at stge 1, and im not taking the meds yet,but i will if it progresses. my first biopsy was stage 2, but after that one i really cut down on my drinking alot. so i believe alcohol does effect the liver. so becareful with the alcohol, and start taking milk thistle, i totally believe it helped me. and if you live in ny i have a wonderfull gastro. dr. mellissa palmer she wrote many books on the hepc virus. look her up on line hope ive helped a little chris c
Hi sweetie, Please try not to be so scared. I am being treated,(eventually) TX, I mean, by a GI DR. and his NP. She,NP is awesome. She is very thorough: Endoscopy, colonoscopy, BT's U/S CT scans, BX. Bt's and more BT's, so be prepared for a long haul. This Heppie stuff is a slow process, (longer for some than others). It'll be ok. just try to be a patient patient!best wishes, and Hugs, Ant B
i went to the doctor for my throid test.havent had one in 2 years.i take 175 ml of synthroid.i thought i just needed a increase.my dr did blood work.my throid came back ok but my liver emzymes came back high.so he did a hep draw and said it came back reactive hep c.thats all i know right now.i did have hep 29 years ago.
Cindy, can you give us a little more info, how you found out....i know you are scared, we all were when we found out, but give us some specific questions to work with so we can give you some answers....
i also found out i have reactive hep c.i also am scared.i put a post on last night but no one has responed.i cant get to see doc for a couple of weeks past bill has to be paid first.i really dont know what to expect .but i do know i feel like **** and hope i can get help.
Hi Michelle. I'm in southern Missouri and I'm without a doctor so far too. I've only known about a month that I have hep c, but I've probably had it for 20 years or more. Welcome to the forum.
Hi!
I was diagnosed in Nov and just started treatment four weeks ago. I took lots of notes on things I heard on this forum and from other research I did online. I wanted to go in to the doctor with as much information as I could so what he said would make sense. I also made of list of things folks here said helped with different symptoms and went to the store and bought a bunch of stuff before I started the treatment. One of the side effects of treatment is depression so I decided instead of waiting till I was way down, I'd ask if I could go on something before starting treatment. A lot of those drugs take up to three weeks to start working so you figure if all of a sudden you're way down, three weeks is a long time to wait for something to work. I'm trying to make this as easy on myself as I can and if it means taking more medicine to be able to cope, then that's OK. My doc (a hepatologist) has been great about ordering whatever I've asked him to order. I also was afraid of the possibility of headaches cause I can't function when I have a bad headache so he also ordered something for that. Just in case.
I was afraid to start the treatment too cause my family is all out of town. I have to work full time. I live alone and all of my kids are out of state. My friends have been great as far as having a support group.
So far the treatments have gone OK for me. I've taken four shots now and have only had a little bit of queaziness from the Riba. I just ate a little more and that helped. So just keep researching and asking questions. Good luck. Ricki
I was diagnosed in Nov and just started treatment four weeks ago. I took lots of notes on things I heard on this forum and from other research I did online. I wanted to go in to the doctor with as much information as I could so what he said would make sense. I also made of list of things folks here said helped with different symptoms and went to the store and bought a bunch of stuff before I started the treatment. One of the side effects of treatment is depression so I decided instead of waiting till I was way down, I'd ask if I could go on something before starting treatment. A lot of those drugs take up to three weeks to start working so you figure if all of a sudden you're way down, three weeks is a long time to wait for something to work. I'm trying to make this as easy on myself as I can and if it means taking more medicine to be able to cope, then that's OK. My doc (a hepatologist) has been great about ordering whatever I've asked him to order. I also was afraid of the possibility of headaches cause I can't function when I have a bad headache so he also ordered something for that. Just in case.
I was afraid to start the treatment too cause my family is all out of town. I have to work full time. I live alone and all of my kids are out of state. My friends have been great as far as having a support group.
So far the treatments have gone OK for me. I've taken four shots now and have only had a little bit of queaziness from the Riba. I just ate a little more and that helped. So just keep researching and asking questions. Good luck. Ricki
welcome to the group! : O )
i am from kansas city, mo and have just finished my tx dec,07 at the va hosp. i do know that there are tx study programs in the kc area. peggy callahan at the va hospital could possibly leed you to a good study program in this area and or were you live. as jmjm says teaching hosp are good sources of info and tx for hep c . there is ku med ctr in kc to call for resources as well. you will more than likely have some more blood test ( liver profile ), to determine where you are at and what your body is doing about hepc.
hepc is slow moving and it can be treated. there are many new treatments coming in the very near future that you can discuss with your doc.
i also recommend to do as much research on hepc as you can. it will be very helpful to you in making decisions in the future concerning treatment, as well as knowing more about the virus. i worked thru tx as many here have but some did not. each persons reaction to tx is different, but as you will find out many are here to help you as well you helping them. you have made the first step and your journey has begun, and you are not alone.
i am from kansas city, mo and have just finished my tx dec,07 at the va hosp. i do know that there are tx study programs in the kc area. peggy callahan at the va hospital could possibly leed you to a good study program in this area and or were you live. as jmjm says teaching hosp are good sources of info and tx for hep c . there is ku med ctr in kc to call for resources as well. you will more than likely have some more blood test ( liver profile ), to determine where you are at and what your body is doing about hepc.
hepc is slow moving and it can be treated. there are many new treatments coming in the very near future that you can discuss with your doc.
i also recommend to do as much research on hepc as you can. it will be very helpful to you in making decisions in the future concerning treatment, as well as knowing more about the virus. i worked thru tx as many here have but some did not. each persons reaction to tx is different, but as you will find out many are here to help you as well you helping them. you have made the first step and your journey has begun, and you are not alone.
I live in NC. I have researched, and I would say a helatologists is the way to go. I am going to Duke. I figure that a learning, research facility is the way I want to go. anyplace like that in MO?
What are your levels? Iron and liver stats?
What are your levels? Iron and liver stats?
I was wondering if a Gastro was the right doctor to see. I have read that a Hepatologist usually treats for Hep. My doctor referred me to another doctor here where we live and he just seemed like it was so routine. I'm not sure who to ask but I would really like to see someone else.
Very scary. I live in Missouri. I moved here a couple years ago from Florida. Where do you live?
welcome to my world. I just got my diagnosis on Friday. What state do you live in?
It's scary , isn't it!
It's scary , isn't it!
First of all, don’t panic. When you go to your Gastro they are going to do Blood Work to determine your Geno. Type and posssably your Viral Load. Insist on a Liver Biopsy. This is the only way to know how much (If any) damage has been done to your liver. If you have little damage to your Liver, you may want to wait on new treatment. If you drink you must stop now. HCV is very slow in damaging the liver. This is why a Biopsy is so important. If you have little damage to your Liver you don’t have to start treatment right away. Be sure to make a list of questions to ask your Gastro. You may become overwhelmed and leave without the information you want, if you do not make a list. You came to the right place and there will be more responses from people that are a lot more knowledgeable than me. Remember, DON”T PANIC this is not a death sentence.
Michelle,
It's normal to be scared when you first get diagnosed with Hepatitis C. We all do. But the reality most of us find is that Hepatitis C is both very slow moving and very treatable. That translates into a number of options that you and your doctor can discuss.
As to advice, if possible, see if you can have your referral changed to a liver specialist (hepatologist) instead of a Gastro. While Gastro's often do treat Hepatitis C, Hepatologists tend to be more knowlegeable and up to date on newer treatment protocols and options in this very fast moving field. Hepatologists can usually be found at your larger, teaching hospitals. Worth a little travel if one is not close at hand.
All the best,
-- Jim
It's normal to be scared when you first get diagnosed with Hepatitis C. We all do. But the reality most of us find is that Hepatitis C is both very slow moving and very treatable. That translates into a number of options that you and your doctor can discuss.
As to advice, if possible, see if you can have your referral changed to a liver specialist (hepatologist) instead of a Gastro. While Gastro's often do treat Hepatitis C, Hepatologists tend to be more knowlegeable and up to date on newer treatment protocols and options in this very fast moving field. Hepatologists can usually be found at your larger, teaching hospitals. Worth a little travel if one is not close at hand.
All the best,
-- Jim
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