Hepatitis

[grannie59]

I was diagnosed with cirrhosis of the liver a year ago - since then i have had the hep a - and hep b series of shots - this month they are starting me on a series of hep C shots- what i want to know is how many shots are in this series and will i get sick from them - they have talked about putting me on the list for a liver transplant - i know hep C can't be cured - what i don't understand is the connection between the shots and possibly a liver transplant

[Burhead1234]

I had hepatitis A when I was nine. I was very sick then with vomiting, yellow juandice, liver was tender.  I had bloodwork done over 6 months ago and tested positive for it. Last week I tested positive again. Both test showed it was active. I only feel bloated. CDC says you can't get it twice. I'm very confused.

[Burhead1234]

I was trying to say CDC says can't get it twice.

[ceanothus]

I'm so glad you have another appointment on Sept. 30, but I really hope it is with a better doctor than the one you last saw. The VA is normally very good at treating Hepatitis C and cirrhosis, or at least they have a very good reputation, so they should be able to get you set up with an appropriate highly skilled doctor. In the meantime do as much reading as you can to learn about both Hepatitis C and cirrhosis, so you will be able to quickly understand what they are suggesting and can ask the right questions. Again, I very strongly recommend enlisting a close friend or family member to serve as an advocate and as a memory aide.

You can learn a lot by browsing through the Hepatitis C forum here, and the Cirrhosis of the Liver forum here, and there is also much information available at http://www.hcvadvocate.org, at
http://digestive.niddk.nih.gov/ddiseases/pubs/cirrhosis_ez/, and at
http://m.gastro.org/patient-center/digestive-conditions/cirrhosis-of-the-liver. Reading as much as possible will help a great deal with being able to ask the right questions and to know if your doctor is capable of managing your illness as well as is possible.

The first thing you need to know is that you must completely avoid any alcohol or OTC pain-killers or anti-inflammatory drugs with the sole exception being Tylenol (acetaminophen) in small amounts, no more than 2000 mg/day total from all sources. I hope all will work out well for you.

[grannie59]

Thank u so much to can-do-man, Hector SF, Advocate 1955, and ceanothus - i'm a veteran so i have been going to the Veterans Hospital in Mpls. for this - i literally had a team of doctors that first month i was there in out of my room at least 3 times a wk. - i am now seeing one doctor who really hasn't explained all this to me - i have an appt. Sept. 30th - i hope these answers and statements u have all made are printable - there are many questions i was not talked to about at all - the whole idea of these shots putting me into liver failure scares the hell out of me - that i had no idea about that at all - you helped me more than u know - now i have something to walk into that office with instead of nodding my yes and saying ok - your the doctor:)  again thank u very much!

[grannie59]

thank u so much for your help - i really appreciate it

[ceanothus]

Dear Grannie, please ask your family to help you with figuring all this out. I'm afraid that the others have given you very good advice, but I'm afraid it might be difficult for you to process all of that information if you are suffering from HE (that problem of not being able to think clearly). I agree with Hector on everything, but especially that you desperately need to get a much better doctor before you start any kind of treatment for the Hepatitis C. You need to see a hepatologist at a liver transplant clinic. In the meantime you should continue to take the meds you were given for the problems of advanced cirrhosis (the lactulose, cholecalciferal, furosemile, magnesium oxide, pantoprozole, and spironolactone), as you could get much sicker without those, but you should not start taking drugs to treat the Hepatitis C unless you are under the care of a really excellent hepatologist.

Please show this whole conversation to your brother and/or other people who are close to you and ask them to 1) help you figure it all out, and 2) ask them to help you make it through the medical maze that awaits you by helping you get an appointment in a liver transplant clinic and by accompanying you to your appointments to help you with asking questions and taking notes.  This kind of help can make the difference between life and death for someone as sick as you are. I also have cirrhosis, but nowhere near as bad as yours as mine is fully compensated and I have no HE and no ascites, and yet I find it makes a huge difference to take my husband in with me to any important appointment with my hepatologist. He remembers to ask questions when I forget, and he remembers things the doctor tells me better than I do. Please ask someone to do this for you - it may save your life.

Try to let us know how you are doing too, as we will all be worrying about you. Best wishes!

[Advocate1955]

Here is the link to the Cirrhosis of the Liver forum:
http://www.medhelp.org/forums/Cirrhosis-of-the-Liver/show/1390
or you can find it by clicking on the words "Cirrhosis of the Liver" up above on the right hand side of this page under "Related Forums".
Best wishes,
Advocate1955

[Advocate1955]

I agree with everything that can-do and Hector have said, grannie59.  It sounds like you have decompensated Cirrhosis, which means that your liver is not working well.  It also sounds like you have at least two of the three very serious complications of decompensated Cirrhosis (ascites - fluid on the abdoment; and Hepatic Encephalopathy, also known as HE, - ammonia build up due to the liver not working well causing confusion, disorientation, forgetfulness, changes in behavior, etc.).  The third serious complication of decompensated Cirrhosis is varices, blood vessels in the esophagus or in the digestive system that come under too much pressure and rupture and can cause a life threatening bleed.  All of these symptoms can be managed by various medications and procedures.  You are already on some of the medications to help with some of your symptoms.  As Hector and can-do said, it is definitely not a good idea to try to treat your Hep C right now as the treatments could very likely to harm your liver further or even cause your liver to fail.
I agree that you need to find a Hepatologist in a Liver Transplant Center right away.  Don't start any treatments for your Hep C unless it is a Hepatologist in a Liver Transplant Center who is recommending it.  All of your liver care should be with a Hepatologist in a Liver Transplant Center from this point forward.  No other type of doctor is qualified or experienced in the type of care that you need right now.
Best wishes to you, and welcome to the forum.  Please check back frequently to see answers on your thread.  You may also want to post on the Cirrhosis of the Liver forum here at Medhelp as well.
Advocate1955

[HectorSF]

Knowing more about the status of your cirrhosis including serious hepatic encephalopathy, recurring tense ascites and weight loss indicates you have very advanced, irreversible liver damage. Which means treating your hepatitis C as your doctor has proposed is counter to good medical practice, and the medicines to treatment hepatitis say explicitly they should not be used by someone with such advanced cirrhosis. You have decompensated cirrhosis am afraid. Your liver damage is irreversible and you will in time need a liver transplant to continue living. That your doctor hasn't told you this is shameful and unethical.

"PEGASYS is contraindicated in patients with hepatic decompensation (Child-Pugh score >6 [class B and C]) in cirrhotic patients before treatment;"

You must be cared for at a liver transplant clinic ASAP if you value your life! I would find the nearest liver transplant center and call them Monday.You are suffering more that you need to.

Your liver disease has progressed too far for you to treat your hepatitis C. The treatment could make your liver disease worse of cause your liver to fatal. You need to get listed for a liver transplant now. You will need a liver transplant in the future in order to continue living. If you continue with this doctor your prognosis is poor and will suffer more than you need to.

I am sorry to be the one to tell you, but no one else seems to want to or they don't even understand how advanced your cirrhosis is and how serious your condition is. In good conscience I can't let you be fooled into a false sense of hope by a doctor who is not competent to treat you or anyone with cirrhosis. He should have already referred you to a transplant center once you developed ascites. You are receiving some of the worse and dangerous medical care I have heard of in some time and I have meet hundreds of people with advanced cirrhosis like yourself. It is very shocking to hear how incompetent this doctor is and how you are not receiving proper medical care for your cirrhosis..

Your life is in your hands. I hope you make the right choices while there still is time.

Best of luck to you.
Hector

[HectorSF]

Hello.

“I was diagnosed with cirrhosis of the liver a year ago - since then i have had the hep a - and hep b series of shots”

Those injections were done to prevent you from being infected with those viruses which could cause more damage to you liver since you already are infected with hepatitis C. They were vaccinations. They are usually repeated over a number of months.

“this month they are starting me on a series of hep C shots”

These injections are part of hepatitis C is treatment. Treatment to cure your hepatitis C so that it stops damaging your liver and destroying more of it. The injections are peg-interferon that is used with one or two other drugs to treat hepatitis.

“what i want to know is how many shots are in this series and will i get sick from them “
Depending on your genotype treatment is typically over a period of 24 or 48 weeks. People with cirrhosis usually become ill from the treatment as the drugs have many side effects. Your doctor may need to reduce the dosage of the treatment medicine or treat you with additional medicine in order to keep your blood levels at safe levels.

That your doctor has not educated you so you can understand what is happening to your health, the benefits vs the risks is a cause of concern. That they are proposing treatment that can have serious side effects and not prepare you for them in my opinion poor and unethical patient care especially when a patient has a possible life-threatening illness. In order to successfully treat your hepatitis C while having cirrhosis is something you should understand and be prepared for. If you should not be able to endure the side effects and quit your could leave you with the only option of a liver transplant. Something you should understand before ever starting treatment.
If I were you I would find another doctor before you are way in over your head.

You need to be treated at a liver transplant center as they are the ONLY doctors knowledgeable and experienced in managing the health issues of patients with cirrhosis. To be treated outside of a transplant center when you have cirrhosis is to risk losing the best and maybe last chance to stop the progression of your liver disease before the only option will be a liver transplant. Something that should only be a last resort as it is a life changing process.


“they have talked about putting me on the list for a liver transplant “
If you are sick enough to be put on a transplant list a patient usually needs to have a MELD score of 15. If you have a MELD score of 15 treating your hepatitis C could be risky as in a small number of patients it can increase the damage to the liver or in rare cases cause the liver to fail which could be fatal. I hope your doctor has discussed the risks with you before you agreed to the treatment. A transplant center would make sure you understand the risks involved treating someone with cirrhosis.

i know hep C can't be cured –
Yes, hep C can be cured. Many people this forum have been cured. Cure rates are higher than ever before. Curing hepatitis C in patients with cirrhosis is more difficult than treating patients with lesser liver disease.

“what i don't understand is the connection between the shots and possibly a liver transplant”
They are trying to treat your hepatitis infection and cure it so that the virus stops damaging your liver more every day. If you can’t cure your hepatitis than at some point you will need a liver transplant to continue living.

I would seek better medical care with another doctor who can communicate with you so you understand what is happening and why. Only that way will you be able to manage your cirrhosis. Living with advanced cirrhosis it difficult enough even with excellent medical care. Without it is impossible.
It is your life and should be your decision.

I am sorry if I sound negative about your doctors but I would hate to see you suffer needlessly because some doctor doesn't know what to care for a patient with a very serious illness.

I wish you all the best. You have a very difficult journey ahead of you but may people have done treatment and cure their hepatitis so they did not have to have a liver transplant.

Hector

[can-do-man]

Hi again, We have a person here my the name of Hector who is much more qualified to give you some answers then I am. Sounds like your maybe in ESLD and needing a Transplant but hopefully he is able and see's this and can give you answers....... Hang in there, wishing you the best and keep checking to see if our expert here comes along... Best to you

[grannie59]

number one - i don't know what genotype is so i looked it up still dont know - sorry - the meds i'm now are lactulose, cholecalciferal, furosemile, magnesium oxide, pantoprozole, and spironolactone - my liver won't filter anything without some help - the first time i went to the hospital they drained 5.2 liters of water from the stomach cavity - they released me because they didn't realize i had Hep C on top the cirhhosis - the 2nd time i went in (a few weeks later) i didn't know my own brother who found me out by his truck crying cuz i didn't know what i suppose to do with it - the poisons had reached my brain - i weighed in 86lbs. - i'm 5'2" - they again removed that much water - i was hospitalized 3 mths. until they got the "recipe" right - which is what i call it - i got to come home because the meds started working the way they were suppose to - all the docs told me there is no cure for Hep C so i guess i don't understand that either - why the shots then?  thank u for help.

[can-do-man]

Welcome to the forum, sorry but much more info is needed, what genotype are you and what other meds besides the weekly shots are they going to give you....... Just so you know Hep C can be cured as there is many of us here that are now cured. If they are starting you on treatment then your liver is not decompensated so being on the transplant list is not needed at this time.......... Best to you.