RE: Liver Biopsy Decision

[Guest guest]

Penny, I've also had hepatitis for many years - had hep B about 36 years

ago. I've always been pretty healthy as well.

BUT - in the last year, I was diagnosed with rheumatoid arthritis and have

been suffering from peripheral neuropathy for 7 months now. At first, I

wasn't able to walk. I progressed from a walker to a cane and now am just

able to walk up stairs normally. I recently started working again and it's

been totally exhausting. The pain in my leg is terrible and my feet swell

so I'm unable to wear only flip flop sandals.

Both these problems are being attributed to HCV. I would have never thought

to try tx until all this happened to me. As I told one doctor, I knew that

hepatitis would probably kill me one day, but I didn't realize it would

cripple me first.

I understand that you are not able to do the conventional tx. Just don't

write off everything since you are currently symptom free. You never know

when this is going to come back to bite you in the ass!

[Guest guest]

Dorothy,

Thank you for the quick response.

I hate to sound stupid, but, I still do not understand why a biopsy would

help me in any way. I do realize that I could develop symtoms down the road

but whether I have a biopsy now or not it is not going to change the outcome

at all. What would a biopsy do for me now when you cannot take med's & even

though I have had Hep C for at least 30 years I am very healthy & symptom

free.

Am I just missing something,

Penny

RE: Liver Biopsy Decision

> Penny, I've also had hepatitis for many years - had hep B about 36 years

> ago. I've always been pretty healthy as well.

>

> BUT - in the last year, I was diagnosed with rheumatoid arthritis and have

> been suffering from peripheral neuropathy for 7 months now. At first, I

> wasn't able to walk. I progressed from a walker to a cane and now am just

> able to walk up stairs normally. I recently started working again and

> it's

> been totally exhausting. The pain in my leg is terrible and my feet swell

> so I'm unable to wear only flip flop sandals.

>

> Both these problems are being attributed to HCV. I would have never

> thought

> to try tx until all this happened to me. As I told one doctor, I knew

> that

> hepatitis would probably kill me one day, but I didn't realize it would

> cripple me first.

>

> I understand that you are not able to do the conventional tx. Just don't

> write off everything since you are currently symptom free. You never know

> when this is going to come back to bite you in the ass!

>

>

>

[Guest guest]

A biopsy, will tell you how much damage your liver has suffered? If you are

healthy and happy. Why bother, if you can't take the meds. I in the same boat.

I have decided just to enjoy life and if the new vaccine works out in 4 or 5

years, I might consider it. Right now, iI want to enjoy myself and my family.

When I first found out about HepC my son offered to give me half of his liver.

Although I would never endanger him like that, it was the greatest gift a mother

could get. I raised a loving a selfless son.

Kathleen

" S. ston " <sjohnst1@...> wrote:

Dorothy,

Thank you for the quick response.

I hate to sound stupid, but, I still do not understand why a biopsy would

help me in any way. I do realize that I could develop symtoms down the road

but whether I have a biopsy now or not it is not going to change the outcome

at all. What would a biopsy do for me now when you cannot take med's & even

though I have had Hep C for at least 30 years I am very healthy & symptom

free.

Am I just missing something,

Penny

RE: Liver Biopsy Decision

> Penny, I've also had hepatitis for many years - had hep B about 36 years

> ago. I've always been pretty healthy as well.

>

> BUT - in the last year, I was diagnosed with rheumatoid arthritis and have

> been suffering from peripheral neuropathy for 7 months now. At first, I

> wasn't able to walk. I progressed from a walker to a cane and now am just

> able to walk up stairs normally. I recently started working again and

> it's

> been totally exhausting. The pain in my leg is terrible and my feet swell

> so I'm unable to wear only flip flop sandals.

>

> Both these problems are being attributed to HCV. I would have never

> thought

> to try tx until all this happened to me. As I told one doctor, I knew

> that

> hepatitis would probably kill me one day, but I didn't realize it would

> cripple me first.

>

> I understand that you are not able to do the conventional tx. Just don't

> write off everything since you are currently symptom free. You never know

> when this is going to come back to bite you in the ass!

>

>

>

[Guest guest]

Kathleen,

I too feel the same way you do about letting someone donate 60% of

their liver to me, I figure if it ever comes down to that or death, I

believe it would just be my time to go home. My 17 year old Son offered the

same thing - I don't think I will ever forget that moment, that was the most

precious gift anyone could have ever given me. What a selfless love, from

my only Son - it makes me feel good about me..

Hope you all are having a Happy 4th of July.

God Bless you all and yours...

Love, hugs, prayers, and peace...

Marie

-- Re: Liver Biopsy Decision

A biopsy, will tell you how much damage your liver has suffered? If you are

healthy and happy. Why bother, if you can't take the meds. I in the same

boat. I have decided just to enjoy life and if the new vaccine works out in

4 or 5 years, I might consider it. Right now, iI want to enjoy myself and my

family. When I first found out about HepC my son offered to give me half of

his liver. Although I would never endanger him like that, it was the

greatest gift a mother could get. I raised a loving a selfless son.

Kathleen

" S. ston " <sjohnst1@...> wrote: Dorothy,

Thank you for the quick response.

I hate to sound stupid, but, I still do not understand why a biopsy would

help me in any way. I do realize that I could develop symtoms down the road

but whether I have a biopsy now or not it is not going to change the outcome

at all. What would a biopsy do for me now when you cannot take med's & even

though I have had Hep C for at least 30 years I am very healthy & symptom

free.

Am I just missing something,

Penny

RE: Liver Biopsy Decision

> Penny, I've also had hepatitis for many years - had hep B about 36 years

> ago. I've always been pretty healthy as well.

>

> BUT - in the last year, I was diagnosed with rheumatoid arthritis and have

> been suffering from peripheral neuropathy for 7 months now. At first, I

> wasn't able to walk. I progressed from a walker to a cane and now am just

> able to walk up stairs normally. I recently started working again and

> it's

> been totally exhausting. The pain in my leg is terrible and my feet swell

> so I'm unable to wear only flip flop sandals.

>

> Both these problems are being attributed to HCV. I would have never

> thought

> to try tx until all this happened to me. As I told one doctor, I knew

> that

> hepatitis would probably kill me one day, but I didn't realize it would

> cripple me first.

>

> I understand that you are not able to do the conventional tx. Just don't

> write off everything since you are currently symptom free. You never know

> when this is going to come back to bite you in the ass!

>

>

>

[Guest guest]

Dorothy,

You must be a great mom & I can see why you are so proud of your son.

My daughter said maybe if it was an itsy bitsy piece. The same day we

started to argue as we always do & I said " oh my, never mind, you are right

& I am wrong just in case I need you later " . Sooo we kinda joke about it

now and then.

I agree, why do I need to know the condition (if any) of my liver if there

is nothing they can do about it other then to say what the condition is. If

I could see some logic to it I would then have it done in a second, but, I

just cannot see any rhyme or reason yet.

Also, I do not mean to sound flip about this and if it has come across that

way it was not meant to. I do laugh about it occasionally, but, what else

can I do. I also realize I am in a position that I can still laugh about it

as I have no symtoms.

Much love,

Penny

RE: Liver Biopsy Decision

> Penny, I've also had hepatitis for many years - had hep B about 36 years

> ago. I've always been pretty healthy as well.

>

> BUT - in the last year, I was diagnosed with rheumatoid arthritis and

have

> been suffering from peripheral neuropathy for 7 months now. At first, I

> wasn't able to walk. I progressed from a walker to a cane and now am

just

> able to walk up stairs normally. I recently started working again and

> it's

> been totally exhausting. The pain in my leg is terrible and my feet

swell

> so I'm unable to wear only flip flop sandals.

>

> Both these problems are being attributed to HCV. I would have never

> thought

> to try tx until all this happened to me. As I told one doctor, I knew

> that

> hepatitis would probably kill me one day, but I didn't realize it would

> cripple me first.

>

> I understand that you are not able to do the conventional tx. Just don't

> write off everything since you are currently symptom free. You never

know

> when this is going to come back to bite you in the ass!

>

>

>

[Guest guest]

Dorthy,

I found out that I had hep-C in 2002, and did treatment right away, I

cleared at 11 weeks, however I had to move and lost my insurance - I stopped

chemo at 16 weeks - I am geno 1A. I remained clear for over 2 years and

then just found out it has returned in February. What a shock, they say

after you remain clear for a year - you are pretty much in the clear.

So I am getting ready to start TX again, I will start sometime this month.

I am stage 1 grade3 - which is still very good. However about a year or so

ago, I was diagnosed with RA (rhuemetiod arthritis), which as you know is

an auto immune disease, they said that mine kicked after fight the hep the

first time, that my body fought so hard that it never quit fighting, and my

immune system turned on my own body, and has now attacked my joints, and can

eventually attack my major organs. So in order to keep from being crippled

I must do a year of Methotrexate after I get through a year of treatment for

hep. And as you know the treatment with interferon boost our immune system,

so my RA may go crazy while I am treating the hep. I will see a

rhuematoligist, around the second week of August, but I don't know how much

help he will be while I am doing treatment for hep. I was called a

complicated case " , by one Doctor, he wouldn't even take me as my primary and

said I had to find another Doctor. I left in tears, but so thrilled my the

PCP I have now, and my hep doc, although I do have to travel for both, it is

so worth it.

I just thought I say hello and let you know you are not alone in your battle

of fighting both..

Happy 4th of July

May God continue to bless you and yours

Love, hugs, prayers. Peace

Marie

-- RE: Liver Biopsy Decision

Penny, I've also had hepatitis for many years - had hep B about 36 years

ago. I've always been pretty healthy as well.

BUT - in the last year, I was diagnosed with rheumatoid arthritis and have

been suffering from peripheral neuropathy for 7 months now. At first, I

wasn't able to walk. I progressed from a walker to a cane and now am just

able to walk up stairs normally. I recently started working again and it's

been totally exhausting. The pain in my leg is terrible and my feet swell

so I'm unable to wear only flip flop sandals.

Both these problems are being attributed to HCV. I would have never thought

to try tx until all this happened to me. As I told one doctor, I knew that

hepatitis would probably kill me one day, but I didn't realize it would

cripple me first.

I understand that you are not able to do the conventional tx. Just don't

write off everything since you are currently symptom free. You never know

when this is going to come back to bite you in the ass!

[Guest guest]

I wasn't really addressing the issue of whether you should or shouldn't have

a liver biopsy. My point is that you shouldn't just blow your illness since

you are " symptom free " as you said. You said you weren't going to keep your

next doctor's appointment since you didn't see any point.

Have you had any discussion about treating the bipolar issue? I'm certainly

no expert or a physician, but I do know a little about bipolar as someone

very dear to me suffers from it. I know that many people with depression

are treated for HCV and are given medication to help control the depression.

I was really trying to impress on you the fact that you can go merrily along

for years with HCV (I did) and then end up pretty sick (I did). Honestly,

if I knew what could happen, I would have jumped through hoops years ago to

be treated to prevent this.

Just my opinion.

[Guest guest]

- I have not started treatment yet, but plan to do so in the early

fall. It's interesting about the rheumatoid arthritis. The liver doctor

said the tx may make the RA worse. The rheumatologist is of the opinion

that it won't get worse; in fact, he seems to think it will not only get

better, but may disappear completely. Go figure.

[Guest guest]

Dorthy,

I have to agree with you on the bi-polar issues. My Mother was diagnosed

with this illness in 1970, and they kept it under control for years with a

drug called lithium, however as you get older, it gets harder to keep the

bi-polar under control as the lithium doesn't work as well, and it becomes

very toxic to the kidneys. I have been dealing with these issues for the

last year with my Mother, who is now 65 yrs. She needs a stronger dose of

lithium to keep her illness in line, however the dose she needs is toxic.

So, I guess my point would be this - if you are having no side affects now,

which is wonderful, however, it could turn on you in a heartbeat. I have a

friend that was stage 1 grade 1 for 25 y rs, and within 8 months he had to

go on the transplant list and then his meld score went sky high in a months

and has just underwent a transplant.

So Dear, if you can stop this nasty dragon in it's tracks now, it might be

something to think about.

I have underwent treatment once, but lost my insurance after only 16 weeks

and after two years clear - it has returned. I will start treatment again

in a few weeks.

I will be the first to admit the treatment was very debilitating for me; I

know I had every side affect possible and then I found some new ones... LOL

but true.

I would like to add, that I was on an anti-depressant for 2 years prior to

starting the treatment the first time, and I still remain on it. I am not

bi-polar, but I do suffer from depression. It did worsen with the treatment

but they dealt with that as I went along.

Seriously, for your own good - I would talk with the Doctor and consider the

biopsy to see where you stand.

Better to fight the dragon now when your younger than later.

Just some words of wisdom I thought I would share with you.

Good luck in whatever decision you make, and may God continue to bless you

and your loved ones

Love, hugs, prayers, and peace

Marie

-- RE: Liver Biopsy Decision

I wasn't really addressing the issue of whether you should or shouldn't have

a liver biopsy. My point is that you shouldn't just blow your illness since

you are " symptom free " as you said. You said you weren't going to keep your

next doctor's appointment since you didn't see any point.

Have you had any discussion about treating the bipolar issue? I'm certainly

no expert or a physician, but I do know a little about bipolar as someone

very dear to me suffers from it. I know that many people with depression

are treated for HCV and are given medication to help control the depression.

I was really trying to impress on you the fact that you can go merrily along

for years with HCV (I did) and then end up pretty sick (I did). Honestly,

if I knew what could happen, I would have jumped through hoops years ago to

be treated to prevent this.

Just my opinion.

[Guest guest]

Dorthy,

That is wonderful news - God that would be great... I will definitely keep

you informed to my progress and what my RA Doctor has to say on the 13th of

August...

Keep and touch and we can get through this together...

Where do you live at? I just recently left Denver, as I was taking care of

dying Mother for the last year, and I am now back in Kansas, which is home

to me and a very small town. So I do travel to see my Doctors, but they

appear to be good ones, they really care...

I am truly blessed. Praise God

Take care of you Dorthy,

Love, hugs, prayers, and peace

Marie

-- RE: Liver Biopsy Decision

- I have not started treatment yet, but plan to do so in the early

fall. It's interesting about the rheumatoid arthritis. The liver doctor

said the tx may make the RA worse. The rheumatologist is of the opinion

that it won't get worse; in fact, he seems to think it will not only get

better, but may disappear completely. Go figure.

[Guest guest]

I guess I'm confused with your response to my post. I'm planning on

beginning tx in September. Perhaps you've confused me with someone else.

Good luck to you, Dorothy

[Guest guest]

Hi Dorothy..

I am and have also had hepatitis for about 36 years.

I now kinda wish i had done treatment..6 years ago.

But now the doctor says i am too depressed to start.

However my symptons are worse..i was wondering since you have peripheral

neuropathy

do you also have Cryoglobulinemia? They say i have that but i do not get

any good

explanation about what to do or anything. I just know now i am getting

tingling in my

feet and my legs hurt alot.

Could you tell me how they dx your peripheral neuropathy? I am making a

doctor's appt

and am starting to get annoyed with being brushed off that everything is

because of

the hepatitis but that is as far as it goes.

thanks so much,

..

oh..biopsies..i had one in 1991 and one in 2005 when i had my gallbladder

out.

The one in 1991 said Stage 1, grade 2, the one in 2005 said Stage 2, grade 2.

Not sure if it really changed or because they got a more exact sample due to

the better

procedure.

Penny, I've also had hepatitis for many years - had hep B about 36 years

ago. I've always been pretty healthy as well.

BUT - in the last year, I was diagnosed with rheumatoid arthritis and have

been suffering from peripheral neuropathy for 7 months now. At first, I

wasn't able to walk. I progressed from a walker to a cane and now am just

able to walk up stairs normally. I recently started working again and it's

been totally exhausting. The pain in my leg is terrible and my feet swell

so I'm unable to wear only flip flop sandals.

Both these problems are being attributed to HCV. I would have never thought

to try tx until all this happened to me. As I told one doctor, I knew that

hepatitis would probably kill me one day, but I didn't realize it would

cripple me first.

I understand that you are not able to do the conventional tx. Just don't

write off everything since you are currently symptom free. You never know

when this is going to come back to bite you in the ass!

[Guest guest]

I was in a motorcycle wreck 15 yrs ago..broken hip, etc..and i remember

an electropgist coming in..is this the test where they put the little things

all on your legs..mine showed sciatic nerve damage at that time...

And yes..i don't see how my Primary doctor can dx this correctly.

Another reason about tx..i HATE it when my doctor says i have Brain Fog..

i realize the virus is in EVERY part of our body..and that DOES bother

me..some

people get it right away and that is why they do tx..but it is now bother

me..my

memory and so forth..but then there is age, and lots of stress on my mind..

so i do not contribute EVERYTHING to the hepatitis !!

thanks...

christine.

]]Yes, , I have cryoglobulinemia. The neuropathy was diagnosed

through neurological testing - you should be seeing a neurologist. I had an

EMG nerve function test - it's uncomfortable, but it's the best way to

determine damage to nerves and the extent of the damage.]]