I'm so scared

I refuse treatment and my doctor says there's  nothing he can do for me anymore. Now all he can do is treat the symptoms of cirrhosis as they come. Cat Scan report: The liver has a prominent caudate lobe and left lobe, without change. The liver is normal in attenuation with no evidence for fatty infiltration. Prominent caudate lobe and left lobe consistent with early cirrhotic change.
I'm so scared and just don't know what to do and don't really understand what all this means.

[EyesofBlue55]

Why would you refuse the tx?Do you have insurance?What geno are you?Have you had a biopsy?You can get rid of the virus.

[22hamilton]

Maybe you need to look further at treatment as you could still respond at this stage. What is it about treatment that bothers you so much ?

[copyman]

sorry to say I agree with your doctor. the only choice you have is treat the hepatitis or register for a transplant.

according to the report you have early cirrhosis. if you treat now the cirrhosis may regress and you could avoid a liver transplant or worse.

Not sure why you dont want to treat but trust me you dont want to die from liver disease. it is perhaps one of the worst & painful ways to die

best of luck whatever you decide

[streamline569]

Thanks for your reply. Just wondering how much time do you think I have to make a decision.

[nygirl7]

Since there are two separate threads going on regarding this (here and social) I am not sure where to respond but seeing as you are now cirrhotic I would say I'm not exactly sure what you are waiting for - until you become decompensated? Time to treat really is now or before now.

[streamline569]

I'm afraid I'm not going to be able to deal with it physically or mentally. I don't have any support here and this is where my medical coverage is so ny it is, doing it alone scares me. I'm afraid I'm going to come out of treatment worse off with more physical ailments, jobless, and not able to qualify for newer treatments that may be more advanced.

[streamline569]

I'm afraid that my doctor is just using me for his trials, as I have thalasemia anemia and I don't think my blood platelet count really qualifies me for trials. I'm afraid because this doctor love to scare me..He gave me one year, Oh back in I think it was 06.

[streamline569]

And I'm afraid because my PCP told me he wouldn't treat. A lot of his patients are treating

[nygirl7]

Well you really do have only two choices, as copyman said treat or get ready to register for transplant.  The third option is not as good as those two even.

Most of us even though we have families find that nobody really understands exactly what it is like to be on treatment so we turn to our family on the internet for support and knowledge.  There can be 100 people surrounding you physically but you can feel completely alone anyway.

Ask the doctor for a good antidepressent.  it's often a logical course of action with this disease/treatment and helped me immensely even though I never had depression - it really did assist me in getting through.

You have to do what you have to do - or get ready to write a will.  I'm sorry there are just not very many options, if there were none of us would have done treatment.

But I'm glad to be alive it was worth fighting my way in to work every single day. I had no choice to so I made myself do what I had to do.  In the end that is the only option you have available.  I think we've all told you honestly what you need to do.  Your doctor is right.

[rustycag]

Dear streamline569

Please don't let your fears prevent you from living.
I can understent the horror you feel, I read about the symphtoms and cried my self to sleep every day till I decided -NO MORE.

Just think to your self, you've been through so much, how can you give up now?
you have no right to give up! you owe it to yourself!


Been diagnosed with HCV genotype 1b.

[nygirl7]

We had a few members with Thalessemia in here over the years. I can't say it was easy on them and at times transfusions were needed but I would find a doctor who would treat me.  There certainly are them out there...otherwise I wouldn't know what thalessemia was.

GOOD LUCK.

[can-do-man]

You saying you have  thalasemia anemia could be a problem in treating, have you thought about seeing another doctor? From what you have said it sounds like your in very early stages of cirrhosis so i really doubt you could register for a transplant yet.

Many people (me included) have had cirrhosis for many years and are doing just fine, talk with another doctor and don't rule out at lease trying tx........ Good luck!

cando

[nygirl7]

PS there is a huge difference between 'refusing to treat' and the 'doctor using you for trials' and 'refusing to treat you'.

You have to figure this one out for yourself but in the meantime I'd try a good AD like I said before.......it can't hurt.

[spectda]

"I'm afraid I'm not going to be able to deal with it physically or mentally. I don't have any support here and this is where my medical coverage is so ny it is, doing it alone scares me. I'm afraid I'm going to come out of treatment worse off with more physical ailments, jobless, and not able to qualify for newer treatments that may be more advanced."

I think that physically you can handle treatment like most of us do even though it will not be a pleasant experience, the question is whether your fear and emotional issues will get the best of you and scare you too much to go through with it. Perhaps a different doctor working in conjunction with a really good psychiatrist and medication could help you through this. Have you tried that avenue yet?

Since you live in ny city I would guess there are many choices of great hepatologists who might be able to connect you with the right psychiatrist. Some of the members here who are from your area (NYgirl) may be able to direct you to the right team to access you emotional and physical ability to deal with the treatment.

Do you have good insurance? will it allow you to choose your doctors?

Take care,
Don't give up,
Dave

[spectda]

Sorry-
I meant assess not access your emotional and physical ability to deal with treatment

[pennylanem]

I am stage 3 and even I didn't consider I had too much time to wait around. Keep in mind you are already cirrhotic I hate to sound harsh but you really don't have that much time to waste. Yes treatment is hard but the alternative (decompensated cirrhosis, a transplant or even death) is NOT something anyone wants to go through if it can be helped. A lot of people on here have gone through tx alone. You really can't give up now!

[billm57]

treatment is a cakewalk compared to the alternatives - hep c and end stage liver disease is one of the most horrific miserable ways to pass - i watched my cousins miserable death for years as he refused treatment due to peoples uneducated theories about treatment - he was literally consumed from the inside out - do not listen to treatment horror stories - they have no medical backing - there are rescue meds for most adverse reactions - there is no definate timeline between cirrhosis and endstage - with the advent of more effective treatment due out next year

[eureka254]

"I refuse treatment and my doctor says there's  nothing he can do for me anymore. Now all he can do is treat the symptoms of cirrhosis as they come...I'm so scared and just don't know what to do and don't really understand what all this means."

Lack of understanding is always a strong fuel for fear.  Being scared is OK; most everybody who finds out they have hep c go through being scared.  What you DO have to weigh in your mind is exactly what you are scared of... is it the disease or the treatment? is it the unpredictablility of cirrhosis or the unknowns of treatment? Which scares you more?

And yes, if you refuse treatment, there truly is nothing for the doctor to DO about the hep c until you start having complications of cirrhosis.  Choice is a very personal thing; it certainly is everyone's right to do what they feel is right... and I can understand being scared and refusing treatment, because my husband also refused treatment for a year after he was first diagnosed.  When he started showing signs of cirrhosis, he decided to treat, but the damage had already been done, and he's fighting liver cancer now.  

If you choose not to do treatment, the virus will definitely continue to do damage to your liver, and the longer you hesitate, the lower your chances of beating the odds of this disease.  You certainly have every right to refuse treatment, but whatever your choice, do yourself the favor of educating yourself and making an informed decision, rather than one compelled by fear.  Best wishes to you. ~eureka

[uncledudeness]

i didn't refuse treatment, i ignored it for 40 years. which is worse? i knew i had a time bomb in me, but i didn't have any symptoms; i felt great, i drank, i lived life......well it has my attention now, and it ain't pretty...

i wish you the best of luck in whatever decision you make...just remember you have friends here that are going through the same thing you are. ask questions, do a bunch of research on the net. the more you know, the better equipped you will be to deal with the tough questions.

you can do it.

[Diane12855]

First off, I wouldn't listen to your PCP. He is basing what he is saying on what he learned about HCV basics in med school most likely. They have learned lots of new things since then and an hepatologist is the most informed kind of doctor to know the new things. Remember that in the 80s they didn't even know this virus existed so text books in the early 90s didn't have much in them.

If your doctor wants to put you in a trial, that would mean your meds are free. He's trying to do you a favor. I hear that they monitor you very closely when in trials... you want that!

We have people on here who have treated many times without success, which is very sad, but they didn't come out of treatment with their health ruined like you seem to think you will. Actually one lady found out that her liver was in better shape than it was before she started tx... even though she didn't clear the virus, and she is a very athletic person now. Yes, there are horrible stories about the people who are having all kinds of troubles after tx. But we don't know if they would have had those problems without tx. HCV is connected with many autoimmune diseases... treatment or not.

"Chronic hepatitis C infection predisposes patients to the development of diseases involving
other organ systems including the kidneys, the skin, eyes, joints, immune system, and the nervous system. There are many extrahepatic manifestations of hepatitis C"

The article goes on to name these manifestations: cryoglobulinemia, membranoproliferative glomerulonephritis(MPGN)(kidney disease), Porphyria cutanea tarda (PCT), HCV related arthritis(The joints involved in HCV-related arthritis are similar to rheumatoid arthritis (RA)), B-cell nonHodgkin’s lymphoma (NHL), and HCV infection has been associated with several eye disorders. Keratoconjunctivitis sicca (dry eyes) is part of SS. Mooren’s ulcer is a rapidly progressive, painful ulceration of the cornea."

This article is found on the HCV Advocate web site listed as "Extrahepatic Manifestations
of Chronic Hepatitis C" if you want to read the whole article. Keep in mind, these can happen whether you treat or not. Of course, once you get rid of the virus it won't be there to cause these things if you don't have them already.

Please keep in mind that the reason that so many people have responded to you is because we understand the fear and we want you to be able to make an informed decision based on facts not fear.

Diane

[nygirl7]

I'm not sure what trial a person with Thalassemia would be eliglble for...I would think honestly it would not be something one of the trials would want thrown into the mix.  What trial is this doctor talking about Streamline?  Or do you mean you don't want him playing guinea pig with your treatment?

[barbiesbff]

Just wanted to weigh in with my experience of having and beating hep c.  I was diagnosed in 1994--had a high paying leadership position and decent insurance.
Went to hershey medical center (university of Pa) and was treated with interferon (self injection every other day) for 6 months.  At the time I was 42 or so. At the time my chances of complete remission were quoted @ 20%. I'm sure they are MUCH better now!

Anyhow, I continued to work at full capacity, had mild flu-like symptoms, but it was better to go to work and not dwell on it! Even went on vacation and quickly learned not to get sun on recent injection sites! Silver dollar sized purple spots!!!! Had to wear long shorts to the beach.
For me, the worst part was the liver biopsy at the beginning---and a dislike of self injection (although it didn't hurt).
I don't know if my story is unusual---but I never took myself too seriously and kept a sense of humor and positiveness. It was just a bump in my road of life---not a roadblock.

[streamline569]

Thanks for all the replies. I decided I can't do this alone. I went to my first support group and have to say it really did help and will continue when I can. Treating looks to be the way I will go.I want my life back so much, also I think finding a doctor I  feel comfortable and safe treating with is important, so that's my mission for now...
I have no idea what I'm getting into. I just know I can't keep going on the way I have...

[streamline569]

I think the drug I'm most afraid of it the interferon. Here is an article that says in five years they may be able to treat without the interferon. Can I wait five years???? That I don't know.
http://www.google.com/url?sa=t&source=web&cd=6&ved=0CDMQFjAF&url=http%3A%2F%2Fhealth.nytimes.com%2Fhealth%2Fguides%2Fdisease%2Fhepatitis-c%2Fnews-and-features.html&ei=IKJ0TIr5IYL88AbU4rmNBw&usg=AFQjCNF8sOL1Pp7bgxvSKytFdbpQJTD5tw&sig2=8-Y77jcQvPt8fCl6DZ6wKg

[GoofyDad]

I treated and cleared with early cirrossis. Admitedly, I didn't have Thal. The longer you wait the worse your chances for clearing the virus, and the worse your chances for long term success. Day or weeks of delay doesn't matter, but 6 ort 12 months very well might.

Good luck. Take care of yourself.

[streamline569]

If you don't mind me asking what was your gen type and what drug treatment were you on?? Thanks

[streamline569]

I'm not sure what trial. I always stop him when he mention treatment. I think though it's either the tele or boce. They are the two new ones out...I'm looking for a new doctor like I mentioned before, but I don't know, I've build a relationship with this one so maybe I should just go with him. I don't have anyone to compare him with and it just seem so important to me to know he'll be concerned with my care, but from what I understand is when you're in trials there are other people involved. I have so much to find out, but I think I'm ready for the journey.

[Mary4now]

so great that you found a support group, the other thing is if you cant do it, you can stop, but you may find you can do it.  Listen to me, I'm still waiting, but I think if I had insurance I would be in a better position.
You sound like the support group works for you, and if you only have one person you can talk to that is important.  

[nygirl7]

Streamline what geno are you?  If your doctor is considering you for one of the trials I am assuming that means geno1 because they aren't applicable to the other genos. Upside would be a shorter course of treatment BUT you have to make sure that they would be able to deal with your anemia - I think that it would disqualify you from the trials completely and perhaps your PCP was not aware of this possibility.

Find a regular hep doc somehwere in NYC.  Dr. J as I told you is the very best available (not just in the city but in the world) but he takes no insurance so it's all out of network and can get expensive.  If you can just find a qualified Heptologist or a GI who has a thriving HEP practice (You have to make sure of that) you can always use Dr. J as a second opinion.  But you need to make sure that the person is well aware of the thal issue and perhaps they consult even with a hemotologist while they are treating you.

It might be hard but we've seen others with the same condition do it.

You can too.

[GoofyDad]

I'm a genotype 3a and I did the pegasys and riba. That was few years ago. Liver is at worst stable, and possibly repairing.

[streamline569]

I'm genotype 1a my platelets are very low 52. I'm going to make an appointment soon and this time listen and see just what trial he is talking about.

[streamline569]

Happy to hear you're doing well Goofydad.

[eureka254]

It's great to see that you are making forward steps, and a good support group will hopefully give you the confidence and strength to not be scared.  What you do with your health care and your life in the end is YOUR decision, ALWAYS, but definitely take the time to hear what your doctor has to say rather than just tuning out what scares you.  My husband is a geno 1 and wasn't eligible for trial because of other factors, but if he had been, we would have jumped at it -- the trials have had success rates of 70-80%... good luck!