Results on Monday

[Debbie223]

Hi all

I am a newbie, it has only been 3 weeks for me that I was told, I have had the blood work done, the liver biospy ( this past Monday) the worst part for anyone that has not gone through it yet was the fact that it took the nurse 4 times to get the iv working, that was painful, the biospy itself was over before I even knew it... now the big wait.... yes I am scared, I have read so much on this site that I am encouraged and scared at the same time. I feel like my life changed in a minute. I am not sure how to feel within myself, I am struggling...not so much from depression but for the life I had before I knew and now for what the future may hold. There seems to be no reasoning to this...some people never drink and have more damage then people who have drank.... I am a social drinker of wine, I am not happy about having to give that part of my life up. My husband and I love that part of our life. We visit wine country as often as we can and attend many events surrounding that, I know some of you will read this and think how shallow, but all I am trying to say is I am just trying to figure it all out and think I am just going through the normal grieving process of a carefree life where all i worried about was getting wrinkles and losing weight....... just want to hear from someone who can relate... also any advice about what to discuss with the doctor on Monday would be helpful.

[H20Lover]

You are not alone.  I too loved wine and my hubby and I had found it to be a nice treat to reward ourselves with.  I too was mortified at the thought of giving it up.  Had to though of course.  Was not the end of the world!

Have to admit though one of my main objections to do treatment and to hopefully reach SVR was so I could drink wine again!  I am a lucky one that caught this within 2 years of contracting it and I am told no permanent liver damage.   I am a genotype 2 with a Rapid Virologic Response so I hold a lot of hope that the buggers are gone.  This is my last week of 24.  If I relapse, I guess I have a 6 month jump on living without alcohol.  It helps with the weight loss that's for sure!

Normal to grieve, not shallow and don't worry about it.  Giving up one of lifes little pleasures can be hard but it is doable.  You will see your priorities shift.

You may already know your genotype, and that of course is important.  Best advise I can give you is read all you can, ask all you can and evaluate your doctor closely.  Stay on this forum, it is fabulous and the people here so full of information.

I read somewhere that this disease should be called Hepatitis W and I agree!  We WORRY, WONDER WAIT AND WISH.  

Be strong, hopefully this can be put behind us eventually!

Pam

[Debbie223]

Thank you so much, I do not know much at all at this point, hopefully Monday I will have all the information I need to make an informed decision. I could have had this for alone time, I am 49 and may of gotton it in my teens for all I know. Two kids and Two marriages later here we are.. I can't believe through all these years I never knew..I have life insurance and have had many blood test alone the way. Question, can they tell how long you have had it for? It is nice to think that if the damage is not much that I could clear this and maybe someday enjoy wine again. I miss it already..... It brought me such pleasure, we loved or should say love our life and now going to Italy is going to be somewhat different then I had looked forward to. I appreciate the encouraging words and I do want to live al ong healthly life.....that is more important.... Will keep good thoughts for both of us...

[H20Lover]

Wondering how you got it and for how long is definatley part of the process when you learn you have HCV.  I had given blood several times in the late 90's, have had liver enzymes nearly every year as part of a routine physical so unless something was really missed, I know mine is new.  I had dental surgery and other work done and that is what I think happened to me.  The Dr. does not want to acknowledge that, but can't blame him there being in the medical community and all.  The day I had my blood work done for the dental procedures, my enzymes were in the 20's.  Two years later my ALT was 299!

Anyway, how long you have it may impact any damage.  The biopsy will tell you if there is damage.

Also, as said earlier, your genotype will also impact your chance of clearing.  

You mentioned a trip to Italy.  May want to start treatment after the trip.  It did not do much to me, but everyone is different and just will not know how they will react to the drugs.  I have not missed one day of work and am taking a cruise next month to celebrate the end of treatment.  

Please let us know next week what you find out.  Everyone here is rooting for you!

Pam in Sunny Florida!

[Isobella]

Below is a copy of a reply I got from someone here when I  asked those first questions myself not so long ago. It deals more with treatment than doctor questions, but I hope it will be helpful.

I am a geno 1a, grade 1, stage 0.  I also mourned the life I left behind for this new life as someone with hepatitis c.  A long time lover of sauvaginon blanc-I can relate to that as well! :-)

It gets better as time goes by.  In many ways my life-tho different-is much richer than before.  There really are much worse things in life then this.

Learn as much as you can.  Get copies of all labs/reports. The people here will give you excellent input and support to help get you through all this. There is another list of questions to ask your doc in the archives, but I haven't had a chance to find it yet.  I will post it if I do.

Genotype and biopsy results will give you the information you need to begin.
Here is the advice I was given:

To get prepared for tx, remember that once you start your Ribavarin you need to eat it with fat. Avocados are good, ice cream was Sooooo good and I ate it like crazy to begin with. Didn't feel like eating anything else for awhile. Ribavarin needs to be eaten with fat, quite a bit of fat to be absorbed, so think about that before tx. get something you like to eat to put in your fridge. You may not want to go out much once tx starts.  

Hair color is not something I would worry about too much. I didn't even care after while. I did have my hair colored towards the end of tx and I usually have light streaks. Bleach isn't good. Tell your hairdesser you are on chemo. they won't put bleach near your roots.  

Sometimes, your skin gets a bit aligator like, so something like bath oil or a mositurizer is good! Same for your hair!  Heavy duty one!   Gold Bond Medicated seems to be mentioned  alot here as one that works well.

What else was there?....stomach...I had problems and used tagament and then the script for Aciphex.  Headaches, migraines....if you are prone, get a script for something for pain. Usually something you already have can be exaserbated on tx.  

A heating pad or lots of blankets for the chills is a good thing to have around. I remember my first shot. It was 80 degrees and I was freezing!  I had my daughter in law pile a ton of covers and get me a wool hat!  That was the only time that happened!  

Toothpaste can start to make your mouth burn. Sensidyne helps, as well as a soft toothbrush.  

Don't fret about hair falling out in the shower...Hang it up on the wall..Make something creative..kidding, but not. You don't want it down the drain, as you will be calling roter router out several times! Better to hang it on the walls!  LOL  

Get a pill box so you never forget those Riba's and as time goes on the other things you may take. It is so easy to forget on tx.

Okay, now that I have scared you all to death...don't worry, you will be fine!!!! LOL

Seriously, you will be great. Keep posting and asking questions.. Good luck to all!



Sorry this is so long, but sometimes just knowing what to expect helps. (i hope!!)  Please keep us posted.

Izzy also in Sunny FLA :-)

[Marcia2202]

Beautiful, beautiful....

Can't wait to get on tx .... lol

Marcia

[Isobella]

I know, I know!! I am a planner tho-it realy helped me :-)
Where do we sign up...........hehe!

[H20Lover]

Fabulous info.....I think you covered it all.   My life is richer because of this and I wonder if it all was for a reason......

Isobella is right....you do need to plan and things will go better. As they say, plan for the worst and hope for the best.  A positive mental attitude can't hurt!

Pam

[Isobella]

Ah ha!  Found my list of doctor questions-on my bathroom counter-not in the archives!  here goes:

Find out if it will be weight based Riba (we want it to be weight based)

How often will they do PCRs.  Will he do a 4 week and if UND how much longer will you go.

Ask for a standing order for a CBC so you can check to see if your HGB and WBC are high enough.  Riba can cause them to drop.

What about rescue drugs.  Will they give you procrit or neupogen if your HGB/WBC do fall.

Problems sleeping-will they give you anything.   Pain from the neupogen-what will they give you.  

Should you start on an antidepressant befre tx?

Stomach upsets from the meds-what to take.

Ask about tylenol as well as any interactions meds you are currently on may have with tx/rescue drugs.

Will they do baseline tests before starting tx???

Who teaches u to administer the shots?

When is the first appt after starting tx?

Eye exam before treatment? Very important apparently.

Get copies of all labs.


That's it.  Just having this in my hand for the first appt really helped keep me focused and led our discussion.  I brought it with me to my family doc also.  She was so helpful-I bet I left there with 5 just in case prescriptions in my hands!  

With all that having been said-I will hope that when u get there they will tell you they made a big mistake and you can celebrate with a bottle of fine vino!

I like that-plan for the worst, hope for the best!

Isobella

dang, that was alot of typing-I think I am reved up from coffee,sorry!   :-0

[Debbie223]

Thanks to you all, it helps to know we are not alone...with check back in on Monday after the big reveal.

Peace to you all...

[Marcia2202]

Thanks for the good tips. I have started making my own list, I will add some of your points on it.

Debbie, hang in there and try to keep your humor... That's one of the best weapons we have to 'slay the dragon'

Marcia

[almanu]

hi debbie no your not shallow, your just going tru what we all go tru at the start,its ok to feel like you are im hcv 9 years, geno type 1 ,stage 2 ,im starting treatment next week, this site is a life saver it really is ,the power of communication is a wonderfull thing, as most of the posters say keep your sence of humour it important to have a laugh or a smile everyday, my life style hasnt changed one bit ,i dont drink any more but it has no effect on me enjoying my life, i can still socialise and do all the things i want to do, your geno type 2 you have every chance in the world of slaying this beast so thats a positive,when your hopefully all clear it will make that wine taste all the more sweeter,please dont worry if u can it makes us feel miserable and has no positive funtion other than make us unwell, i know its easyier said than done but givin time YOU WILL COPE a hel of a lot easier,your main priority is to get well, everything else has to take a back seat, when you really anilize your fears and worrys you will find that its not worth makeing youself ill over, i wish you all the best ,welcome to the site ,and if i can help you with anyting anyting at all no matter how trivial you feel it is im here for you,
god bless
almanu

[Debbie223]

Thanks so much for the encouraging words... I find out Monday what my results are.... blood work, liver biospy all done..... hoping for the best, yes you are right I have already felt myself shifting and realize that the most important things is to get as healthy as I can and be postive that will go along way for myself and the people that love me.

Make it a great day!

[GSDgirl]

My first gastro never did a liver biopsy, said I didn't need it being geno type 2 (a or b I forget)  I also never knew about eating anything let alone eating fat for the riba.  I never got the "riba rash" but I think I have it now on my leg, 5.5 weeks after tx.  I was also an early responder.  

I have no idea of how much liver damage I have or don't have.  The new gastro ordered an abdominal ultrasound which I will find out the results on the 30th, I hope that does not show anything crazy abnormal.  He also ordered a bunch of other tests that I had never had done.

I wish I had found this board a year ago so I think you are in the right place to get opinions on your questions from people that have "been there".  

I also like the idea of getting copies of all test results, I have none but I will after next week.

Now it is time to head out in the field to bring out one of the ponies or horses (whoever is easiest to catch) and brush out some of the winter coat, and clean burrs out of the mane & tail.

[almanu]

doing an ultra sound to to see how your liver is ,is a bit of a long shot to be honest,i had a abdominal ultrasound when i was getting my biopsy,its showed everything was fine,or as the specialist said,no swelling and no abnormalities ,when i got the biopsy results it was a different story, you really have to shake some of these doctors in to life, you want a biopsy to A see how your liver is B how to treat it, doctors are idiots some times when it comes to hcv, to say you dont need a biopsy because of your geno type is rediculus it really is,thats just my view. but i feel every thing should be done to help us in anyway with this monster, we need all the help we can get.

[FlGuy]

Other than the wisdom to limit more-than-necessary hard work for your liver there's no reason for your life to change radically or to take on the cloak of mourning. Life is still the same, you have the same purposes and the people around you are still the same.  You just happen to have a hitchhiker that you've probably had for a long time but were just unaware. HCV sucks, life doesn't. OK, well maybe taxes and rising fuel prices suck too.

Another in sunny Florida

[Debbie223]

Who have responded to me, I cannot tell you how much it means, or maybe I don't have to. I do feel pretty optimistic today... not sure why...maybe because I know I am going to be ok and with this site I can get through it... FIGuy you made me laugh and I needed that. Once again thanks to all.

I do have a question, will the Doctor be able to tell how long I have had this?

[Andiamo1]

The doctor will probably not be able to tell you how long you have it.  Were any of your previous blood tests abnormal?  It doesn't matter much how long you have it; the liver biopsy will tell you how your liver is doing and that is the most important thing.

There are many new treatments available that will shorten the duration of treatment and improve your odds of a SVR (sustained viral response).

I have it since 1961 and I treated 8 times since 1989 when I first discovered what was wrong.  I relapsed after each treatment until I entered a trial with Telaprevir, a protease inhibitor made by Vertex Pharmaceuticals.  Today I was given my blood test results after 4 weeks post  treatment and the virus is undetectable.  My doctor said he is buying me a drink after my 12 week test shows I am SVR!

I lived with this for 47 years and drank too much for the first 27 years I had the disease.  I stopped drinking altogether when I found that I had HCV.

Good luck to you and enjoy your life.  It will be long and happy even without wine for a couple of years.

Eric

[FlGuy]

The length of HCV infection is not as scientific as counting tree rings.  But, based on a combination of results from lab reports and the biopsy results the doc may be able to guess at a ballpark swag.  Things is, you and the doc have no way to determine if he's in the neighborhood or not unlsess there was some objective criteria as a point of reference in the past i.e. lab reports from days of yore. In the end, it doesn't matter much and can't really gauge speed of progression.

[gauf]

Sorry you got it but glad you are here. Lots of people have Hep C, and of course everyone named Deb!    lol

[Isobella]

Deb,

You are going to be MUCH more than ok!  I am glad to hear you are having a better day.

I have to say that the last 3 -or so -posts are from some of the "creme de la creme" of advisors.  Now that I have probably mangled 3 langauges-what I mean is:

FLGuy-your humor is the best

gauf-your diet/supplement list is the best

Andiamo- YOUR SVR IS THE BEST OF THE BEST!!!!!!!!!!!!!!!!!!!! :-)  :-)  :-)  :-)  :-)  :-)

Isobell

[Debbie223]

Got my results today, going through the shock of it all right now.... the good news I think is that I am genotype 2B, the bad news is that I am stage 2-3, the doctor said it seem aggressive I think. He did not even hesitate to recommend treatment and said he wanted me to start as soon as I could but that waitng until we get back from of our Italy trip would be ok.( that is in June) He said I had a good chance of clearing the virus but I guess that is because of the type..... I am feeling very sad right now and am trying to be postive. I called about making an appt at UCLA to speak with a Hep Dr. to look at the trials that are available...and if I am a good canidate (not sure what they look at to make that decision).  It seems everyone I that I talk to in Medical field are pretty postive and act like this is everyday stuff. Well for me it isn't....life in general won't change for me but it will to a certain  point (just going through treatment will change things)  there are things I like to do that I can no longer do and I feel so less then..... sorry pity party time...

Today was surreal, my Doctor was busy and distracted... he talked quickly and just did not give me as much information as I had hoped for or maybe he just did not say what I wanted to hear.

Next step is to get vac for a&b (can anyone tell me how that is) and get on anti-depressant ( I have had depression before) and I guess just wait until I get back from my trip (try not to carry the dark cloud with me)  and look forward to a summer of treatment and all the fun that goes with that. Boy am I grateful for this site...I have learned more here then any place.

One more thing that really freaked me out today. From everything I have read and from what i have gotton from this web site is that this is blood transmitted virus, today he said that it is a fluid transmitted, why am I confused? I mean can I pass this to my husband just by kissing? I felt like I was kicked in the stomach... If there is no blood I feel pretty good about not giving it to him ( he is going to get tested this week, there is another thing to stress about.....praying that he does not have it...) The Dr. did say that he did not think we needed to change and of our sex habits.... Thanks to all you have responded to me....it means the world, this is my lifeline and I could not have really had a full understanding of the appt today if I had not been here. Peace

[Debbie223]

I just remembered that the doctor said stage 2-3 w/ bridging, pls what does that mean? It sounds bad.... guess the good news is 2B and that is the bad news. If I do treatment and clear the virus does that mean that it cease to cause damage but that the damage that is done is done?

[mar148]

First it is a blood to blood transfer, not fluids, except blood as a fluid.  It is quite a good thing that you are 2B in the midst of all the news. This has a high degree of cure rate.  Sometimes individuals liver stage improves with treatment.  

I know it is hard, and it is tough news, the sooner you start treatment the more you will feel like you are working to recover.  I am not sure about contemplating going into a trial, others might address this.

You will get through this.  Mary Ellen

[copyman]

always get your test results so you can copy them here word for word. i found that if i always think it could of been worse it helps me. try and look at the positive's what your doc told you, you are a 2B which means you have a great chance to clear the virus with a shorter (6 month) treatment. not sure but i think trials are for genotype 1's. the reason being is 1's are harder to cure where 2 & 3's have a 80% plus chance of cure. best of luck

[Debbie223]

Thanks Copyman...... did not get much sleep last night.... am hoping to get an appt at UCLA just to get a second opinion. My Doctor was really busy and distracted and I feel like he just gave me the facts and sent me on my way.. I am hoping to get more information and be better educated. I think I keep looking to make sense of it all and may be making it more complicated then it has to be. I do have lots of questions about treatment.. I will go back and re-read other posting and hoping to get more information.

I am hoping someone can address some of the other questions I have asked in the previous post... Thanks to all and make it a great day!

[Isobella]

I feel bad for you because I remember how I felt in those first days.  It is good that you got all your information so quickly tho-less time to fret.  If we had a contest for genotypes-you beat me!  I am geno 1.

Is your doc a hepatologist?  My RA doctor gave me my results and also seemed aloof-I think it is because they are not as versed in hep and do not want to give incorrect information.  

The vaccines for hep a and b are nothing more that a shot.  For me anyway-no sx at all.  You have to go back a month or so later for the 2nd hep b shot.  

It is definately blood to blood transmission.  I may mangle some facts, but I think as long as you are in a monogomys (sp) long term relationship the risk of transmission is really low.  Something like .03%?? My husband and I have made no changes in that department :-)

The anti-depressant will really help.  I've never taken it til now-and I am so glad to have it!

I will be treating over the summer as well-and the winter too.
  
I am not sure about the bridging-but I know that while you are on tx, your liver gets a break-possibly a post tx biopsy to assess??

It can be a lot to deal with right now-but there are so many worse things out there than HCV.  You are a geno 2 with an excellant chance to rid yourself of this thing.

You can do this.  Wishing ya the best!

[Debbie223]

Thanks Isobella, really appreciate the response... Please everyone keep good thoughts for my family...My Husband will be getting tested this week. I pray he does not have it... and my daughter (22) is deciding on getting tested. I have encouraged her to do so.

I will be asking lots of questions... Has anyone been in a support group, like in person? I cannot seem to find anything like that around where I live.

Deb

[GSDgirl]

Hi Deb, your geno is the same as mine.  I honestly thought I was given a death sentance when I was told.  Not true so I found out.

hep b shot---the second is no sooner than one month after the first and no sooner than 6 months after the second.  After the shot, the nurse told me to massage the area to distribute the vaccine.  It was no where as bad as the tetenus shot I had 3 years ago.

My hubby got tested and was negative, we have been together (monogamus) 20 years this past march.

I wish that I would have switched gastro much sooner than at the end of tx but It was something that I just could not get up the strength to do, but my first one was just as you described yours to be.  My new guy takes time and even listened to my heart, lungs and other things that my first dr did not do.  

Good Luck

[Debbie223]

Good to hear from you... I made an appt today at Cedars Sinai with a Hep specialist.... I am really happy to have that to look forward to. I feel so lost right now but also hopeful... being type 2b was good to hear. My numbers are really high ast 178 and Alt 355, looks like Hcv Rna Pcr= 2050000, I don't know what that means. The Doctor really did not go over the numbers with me...bascially just said you need to do treatment.... I guess I should be encouraged by that since I have seen people say that they can't even do treatment. I don't really know how sick I am, I don't have any systoms that I am aware of other then being tired but I thought that just came with age..ha ha.. I want to wait until I come back from my trip to Italy in June before I start.... the doctor said it would not make much difference to wait... since my numbers are so high I hope that is true...hoping the second Doc will confirm that. One other thing that really bothers me is that I have read several times over on this site how people's doc's had them do some other testing before starting treatment, He never even mentioned that he just wrote the prescription and sent me on my way...... yet another question to ask the specialist.

Thanks for all the good information, you and this site are my lifeline right now.  Oh I am going to get on a anti-despressant sooner then later. I don't feel depressed right now but I have suffered from it in the past so don't want to take a chance.

Hubby is getting tested, I pray that comes back negative..

[mar148]

Your insurance company usually will want another viral load test taken right before treatment.  Viral loads for many can vary quite a bit but the one right before treatment will help you measure how your body is responding to treatment after wee 4, 12... Under current practice they like to see type 2 and 3 to be clear of the virus at 4 weeks to support the 24 week recommended duration and your dosage. (you will read alot about doing less if you are clear at four, but unless you struggle unacceptably with sides....  people are still doing 24)

So questions I would have for your weight ...  does the second doctor agree with your prescription. Do they want you to lose some (i had to) Second, when do they take viral load tests and is the most current version?  Do not wait until week twelve to see if you have cleared the virus.  The longer your body is clear of the virus on medication, the more it has a chance to be SVR.

I am quiet about what you are going through.  I am still going through it, just having completed treatment. I am waiting for my results, but I am living a great life with alot of worry hanging over my head.  But oddly, happy non the less.

I think in hindsight you will proud of handling this difficult time.  At a minimum it will make you more compassionate to others challenges, I thought I was before, but more so now.

[Debbie223]

Thanks for the encouraging words... it is funny I am really not feeling down about this per say just mourning my life before I knew and now some of the things I love to do won't be able to do any more. I don't think I will need to lose any weight. I am around 147 and 5'7, I am worried about losing to much on the treatment as it is.

Do you are anyone have any input on my numbers? I think the one thing that is making me the most crazy right now is not really knowing what I can do at this point to help my liver. I know not to drink and I am taking some supplements but only a few for fear of stressing my liver even more and the other question is if I clear the virus will I be able to live along healthy life... I think doctor's do such a disservices to people when we are faced with things...they just say this is what you have now go deal with it. Everything I know I have learned from this site or read someplace esle. Right now this is the only site I go to and it is a lifesaver in so many ways... most of just knowing that you are not alone it hugh.

[GSDgirl]

The dr told me not to take supplements but I took caltrate, not the kind of calcium in tums (it isn't as effective)----duhhhh good thing I went and looked it is calcium citrate, it absorbs better.  No mulitvits because of the porphyria that started my wonderful journey about this time last yera.  My porphyria was cause by hep c.  About half way thru tx my iron levels were ok so I started taking my centrum, vit b12, vit d because I could not go in the sun, grapeseed extract, coQ-10 & some type of immune booster.  This is what I took but vits and supplements are a very personal choice so I am only saying what I took not recommending it for you.  also a probiotic for the "good" bacteria.

Also, no matter how sick I was I cooked dinner just about every day.  Healthy foods--roasted veggies in olive oil with a garlic rosemary seasoning, salads with good seasonings dressing, no cream dressings.  multigrain bread, lots of fiber, bran cereal (the hard nugget kind) w/yougert instead of milk, oatmeal, fresh eggs (I have chickens), a 4-h raised pig for the pork, not very much red meat, lots of chicken, well cooked fish, brown rice, good grean lettuce not the head lettuce-no vitamins in there.  switch to decaf coffee (that was hard) lots of green tea that I brew.

BTW I was ready to kill for a pizza.  BUT I also developed a sweet tooth that has not gone away (not healthy) I made up a mix of grinded almonds, flax, oats, whole wheat flour, added an egg and honey, cinnamon & Made batches of cookies.  The only fruit I could eat was bannanas.

I guess it helped according to my dentist.  She was impressed yesterday that my teeth were not destroyed.  Word of advice, get your teeth cleaned before tx

Denise

[GSDgirl]

not only are some doctors idiots but the lab that did the wrong test on my bloodwork has idiots working there. They did not do the viral load test, they checked to see if I had hep c.  I had to get more bloodwork and have to wait for the results AGAIN. And you are right the ultra sound was a waste, in my mind.  So now I worry that the aches and nausea and all mean that the hep c is not gone.

I thought that because my last test was und it meant that I was svr.  I am beginning to realize that the 2 are not the same at all.

Denise

[LindaC1207]

Hi Debbie, I'm new to this board, just joined yesterday.  I'm trying to learn all I can about HepC and treatment.  I was diagnosed with HepC a few years back and for the past 4-5 years only one of my liver functions were slightly elevated, until last Novemeber when all of them were off the charts.   I had a liver biopsy 3 weeks ago and found out the results yesterday, like you my liver is stage 2-3 and my doctor is recomending treatment.  My geno type is 1, so I'll have to do it for a year.  She is letting me wait until the end of August, I work and have some offsite meetings to attend over the summer.  I am very apprehensive about treatment, I work full time, drive 44 miles one way to work and wonder whether or not I can go on treatment and hold down my job.  I haven't read anywhere about people keeping their jobs. I just purchased a home last August and now I'm in fear that I may loose it due to going on treatment.  I worry about a lot of things and like you, I mourn for my old life.  

I want to introduce myself to everyone but haven't found a place to do this.  I have so many questions, one being, why can't I keep coloring my hair?  How can I work with roots growing out for a year?

[Debbie223]

Hi Linda:

Regarding your job, I have read by many people here who were able to work thru tx.... I think from what I am learning everyone is different in the way they react to tx.... I am hoping for the best I to need to work, I am lucky that I work in a very understanding place and I know that I will have lots of support... I only have to do 6 months.. It helps for me to hear that you doctor said it was ok for you to wait to start treatment. I am type 2 which is good but I do have 2-3 liver damage. I just keep freaking out thinking this virus is having a party with my liver..... this sucks and I have had my pity parties..if anyone wants to borrow my decorations I am happy to share...

I think you can color your hair I just think you have to be careful and not use bleach... maybe someone esle can shed light on that subject. I may just go out a buy myself a fun wig if it gets to bad.... I have always had issues with my hair and I am sure this is not going to be easy for me to look in the mirror and see if less... I think if your doctor is recommending treatment you may really want to give it a go, if it got really bad you could always quit... from what I have read at least while you are treating you are giving your liver a break from the virus.... and if you get rid of it you can sleep at night... I know that the amount of damage is a considering factor when it comes to treatment...Wow look at me almost sound like I know what I am talking about, if I have said anything that is not right I hope someone will let you and me know.

I will keep in touch with you, I know I can feel so alone at times....

[GSDgirl]

Hi folks, I almost hate to say this but I was very lucky as far as working went.  We are self employed and I do the books & payroll.  Also could not go in the sun besause of porphyria PCT caused by the hep c.  I train german shepherd dogs but just my own as a hobby, so that got put on hold for the last year so have my horses been just being horses in the field........but back to working--------I didn't, well not much anyway, did what I had to and not much more.  I figured I needed a year off (well almost off).  Could have picked a better pasttime than the TV.  

Try this one, in the heat of the summer......keep in mind the hot flashes that go with menopause.......wearing gloves, a long sleeve shirt, and a wide brimmed hat........talk about sweating like a pig.  The sun brought out giant blisters on my hands (porphyria PCT).  That was the begining starting last April.  Sometimes if you don't laugh ya go crazy.

Denise