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HepC/Cirrohsis dx esld, small varice vein, ect
55 y/o female who has had Hep C for possibly 15-20 yrs. dx with early stage cirrohsis 2001. Recently became very swollen with about 25 lbs of water, confusion, etc. Dr. is tx with 2 diuretics, syrup drink to rid body of ammonia, went down esophagus found couple of varice veins small, swollen speen, stomach ulcer..says stats say be really sick in 2 years, but stated he doesn't have crystal ball. Fatigued, tired, STRESSED, still accepting 1500 mg salt diet, meds, etc. He wants me to treat my hep c begin evaluation for liver transplant. Not sick enough for list by any means but not sure how to manage working at the rate I have been it wears me out, everyone I have talked to in my area that has been through a transplant or in esld says get on disability.. and do not tx the hep c. I would like to hear from anyone about any of this....thanks
Antiviral therapy in HCV-infected decompensated cirrhotics.
Danish FA, Koul SS, Subhani FR, Rabbani AE, Yasmin S.
St Mary's Hospital, Isle of Wight, PO30 5TG, United Kingdom.
Abstract
Decompensated cirrhosis has traditionally been considered a contraindication to interferon and ribavirin therapy. Whereas, the same may be true for advanced cirrhosis, which is only successfully amenable to liver transplantation (LT), there are reports in the literature in which antiviral therapy was given successfully in selected cases of early hepatic decompensation with an aim to attain sustained viral clearance, halt disease progression, and expect potential (though, often, partial) recovery of hepatic metabolic activity. Antiviral therapy may also be instituted to prevent hepatitis C recurrence after LT (it has even caused removal of some patients from the waiting list for LT). Thus, decompensation per se is no more an absolute contraindication to antiviral therapy. Nonetheless, considering that a large proportion of such patients have pre-existing hematological cytopenias, modifications in antiviral dose regimens and close monitoring is required in order to prevent worsening of the same. Although the final sustained virological response rates attained in these patients are relatively low, successful antiviral therapy is potentially lifesaving which explains the need to go for it. In this article, the pros and cons of antiviral therapy in decompensated liver cirrhosis are reviewed with special emphasis on how to avoid antiviral dose reductions/withdrawals secondary to the development of hematologic side effects by using hematopoietic growth factors.
http://www.ncbi.nlm.nih.gov/pubmed/20871208
Danish FA, Koul SS, Subhani FR, Rabbani AE, Yasmin S.
St Mary's Hospital, Isle of Wight, PO30 5TG, United Kingdom.
Abstract
Decompensated cirrhosis has traditionally been considered a contraindication to interferon and ribavirin therapy. Whereas, the same may be true for advanced cirrhosis, which is only successfully amenable to liver transplantation (LT), there are reports in the literature in which antiviral therapy was given successfully in selected cases of early hepatic decompensation with an aim to attain sustained viral clearance, halt disease progression, and expect potential (though, often, partial) recovery of hepatic metabolic activity. Antiviral therapy may also be instituted to prevent hepatitis C recurrence after LT (it has even caused removal of some patients from the waiting list for LT). Thus, decompensation per se is no more an absolute contraindication to antiviral therapy. Nonetheless, considering that a large proportion of such patients have pre-existing hematological cytopenias, modifications in antiviral dose regimens and close monitoring is required in order to prevent worsening of the same. Although the final sustained virological response rates attained in these patients are relatively low, successful antiviral therapy is potentially lifesaving which explains the need to go for it. In this article, the pros and cons of antiviral therapy in decompensated liver cirrhosis are reviewed with special emphasis on how to avoid antiviral dose reductions/withdrawals secondary to the development of hematologic side effects by using hematopoietic growth factors.
http://www.ncbi.nlm.nih.gov/pubmed/20871208
Hi there. I'm sorry you are going through all of this. I believe that quite a number of hepatologists are suggesting tretment now for their patients on transplant waiting lists. Those who are lucky enough to clear will not re-infect their new livers. There may be other reasons as well that I am not aware of. I wish you lots of good luck.
Thanks sooo much! I have a friend here in louisville who had a liver transplant 12 years ago, he is of great support. I need all the experience of those who can share experience so I do so appreciate the time you took to type all that out. I believe here in Louisville it is alittle bit better as far as time frame, like you said there are some differences. It usually is no longer than 1 to 1 1/2 year for transplantation..considering variances of each individual. They also will do with a 10 meld score in many cases...they are really pushing about the treatment for hep c..it just doesn't make sense to me..so I am going to continue to show up and do each day... I will keep in touch.. again thanks hector
Wow this is long. Hopefully you will find something useful here.
Based on my own experience I would say to work as long as possible but start preparing for the day when you will be unable to work. Work can give structure to your life, it is a social connection and makes you feel productive. Again this is based on my personal circumstances, yours my be different.
An important thing to keep in mind. It could be years until you get a transplant. What are you going to do for possibly years as you wait for a transplant? Because of my job I can't work from home so when I left work I knew my career would be in limbo. Remember getting a transplant depends on how many people are already waiting in your area and how ill you are. The sickest get a new liver first. Based on the MELD score. Each person progresses differently so it can't be predicted when your MELD score will be high enough to get a transplant.
Also another important thing. You will need insurance or you won't be listed for a transplant. There are many requirement to get listed. So if you are not working, you will need to maintain COBRA insurance which lasts 18 months in most places. (Unless you can get on someone elses policy. With your pre=existing condition you could be charged a huge few per month which will be impossible to pay for over time). California has another 18 month extension of COBRA. If COBRA runs out you will need to get SSDI in order to get Medicare before the age of 65. Getting SSDI can be very difficult. And there is a waiting period to get Medicare. COBRA can cost a lot when you are paying for it yourself. Mine is $650 per month. Remember even without a transplant you have to pay for your current meds, doctor visits and tests. Blood test to measure how your disease is progressing and scans to monitor for HCC, liver cancer, etc. Unless you are a multi-millionaire no one can afford such costs. To get transplant here in Northern California I had to prove that I had $1,000,000 coverage for the transplant and $6,000 per month for post transplant meds. Obviously you will need insurance to cover this.
As someone else said, you have decompensated cirrhosis. Ascites, HE hepatic encephalopathy, varices, etc. Once cirrhosis progresses to this stage life expectancy is limited. That is why it is call ESLD. Most doctors won't treat you for HCV because your liver is so damaged. Treatment can cause acute liver failure. So if they choose to treat you they will want to have you already listed should your liver fail from treatment. It's a backup plan. After you get a new liver you can get treated for HCV and the treatments will be more advanced then what is currently available.
I would prepare for disability as at some point you will be unable to work. I'm glad you have been able to work until now that shows a lot of strength. Depending on where you work, usually you will use up all your vacation and sick time. Then you can take up to 90 days of FMLA. After that if your company has disability you can go on disability from your company for a year. This is how it works in California. It may be different elsewhere.
Yes, plan now for the worse and hope for the best. Be pro-active. Just try to take all of your own personal factors into account as you weigh your options. As each decision affects many other things. It can be quite overwhelming at times.
Learn everything you can about how ESLD progresses so you know what is going to happen to your body and mind as you get sicker. If you get listed at a transplant center attend meeting and meet others like yourself who are waiting, people that have had transplants and there families. Hearing and meeting people who are going through what you are and will help you to keep your spirits up as this disease is emotionally very challenging. This is the most difficult thing I have ever experienced in my 58 years by far. And I know the toughest times still lay ahead. But others have gotten through it and we can too. But it can't be done alone. You will need care givers, family and friends as you become sicker and more helpless.
Best of luck to you. Let me know if you have other questions. Myself and other here are happy to share our personal experiences to help you if we can.
Hectorsf
Based on my own experience I would say to work as long as possible but start preparing for the day when you will be unable to work. Work can give structure to your life, it is a social connection and makes you feel productive. Again this is based on my personal circumstances, yours my be different.
An important thing to keep in mind. It could be years until you get a transplant. What are you going to do for possibly years as you wait for a transplant? Because of my job I can't work from home so when I left work I knew my career would be in limbo. Remember getting a transplant depends on how many people are already waiting in your area and how ill you are. The sickest get a new liver first. Based on the MELD score. Each person progresses differently so it can't be predicted when your MELD score will be high enough to get a transplant.
Also another important thing. You will need insurance or you won't be listed for a transplant. There are many requirement to get listed. So if you are not working, you will need to maintain COBRA insurance which lasts 18 months in most places. (Unless you can get on someone elses policy. With your pre=existing condition you could be charged a huge few per month which will be impossible to pay for over time). California has another 18 month extension of COBRA. If COBRA runs out you will need to get SSDI in order to get Medicare before the age of 65. Getting SSDI can be very difficult. And there is a waiting period to get Medicare. COBRA can cost a lot when you are paying for it yourself. Mine is $650 per month. Remember even without a transplant you have to pay for your current meds, doctor visits and tests. Blood test to measure how your disease is progressing and scans to monitor for HCC, liver cancer, etc. Unless you are a multi-millionaire no one can afford such costs. To get transplant here in Northern California I had to prove that I had $1,000,000 coverage for the transplant and $6,000 per month for post transplant meds. Obviously you will need insurance to cover this.
As someone else said, you have decompensated cirrhosis. Ascites, HE hepatic encephalopathy, varices, etc. Once cirrhosis progresses to this stage life expectancy is limited. That is why it is call ESLD. Most doctors won't treat you for HCV because your liver is so damaged. Treatment can cause acute liver failure. So if they choose to treat you they will want to have you already listed should your liver fail from treatment. It's a backup plan. After you get a new liver you can get treated for HCV and the treatments will be more advanced then what is currently available.
I would prepare for disability as at some point you will be unable to work. I'm glad you have been able to work until now that shows a lot of strength. Depending on where you work, usually you will use up all your vacation and sick time. Then you can take up to 90 days of FMLA. After that if your company has disability you can go on disability from your company for a year. This is how it works in California. It may be different elsewhere.
Yes, plan now for the worse and hope for the best. Be pro-active. Just try to take all of your own personal factors into account as you weigh your options. As each decision affects many other things. It can be quite overwhelming at times.
Learn everything you can about how ESLD progresses so you know what is going to happen to your body and mind as you get sicker. If you get listed at a transplant center attend meeting and meet others like yourself who are waiting, people that have had transplants and there families. Hearing and meeting people who are going through what you are and will help you to keep your spirits up as this disease is emotionally very challenging. This is the most difficult thing I have ever experienced in my 58 years by far. And I know the toughest times still lay ahead. But others have gotten through it and we can too. But it can't be done alone. You will need care givers, family and friends as you become sicker and more helpless.
Best of luck to you. Let me know if you have other questions. Myself and other here are happy to share our personal experiences to help you if we can.
Hectorsf
Thanks for responding both of you. I spent about 3 hours on this website yesterday and found it to be a wealth of experience. Yes Bill you are assuming correct, my meld is being scored soon however the doctor believes it is around 8-10.
Does anyone have thoughts or experience on the disability?
Does anyone have thoughts or experience on the disability?
I generally agree with Tashka, although I was surprised a few months ago when member ‘Mikesimon’ posted study data on treating select decompensated cirrhotic patients. It seems the risk is high with low returns though… you’d hate to have the live to fail rapidly; I think gradual controlled failure is preferred for transplant purposes.
Sorry to hear of your problems; we have several members in here that are TP survivors, as well as some in roughly the same position as you are now; perhaps they will see this and check in with you. Do you know your current MELD score? I assume they will watch carefully for varices and band if required?
Good luck to you, and welcome to the discussion group,
Bill
Sorry to hear of your problems; we have several members in here that are TP survivors, as well as some in roughly the same position as you are now; perhaps they will see this and check in with you. Do you know your current MELD score? I assume they will watch carefully for varices and band if required?
Good luck to you, and welcome to the discussion group,
Bill
I think, at this stage it is pointless to treat hepatitis C. I say so because I never heard about anyone successfully eradicating this virus with decompensated cirrhosis. If somebody has different experience or success story to share, of course, feel free to disagree. There is also a danger that the treatment will make your condition worse then it currently is.
You should prepare for a transplant and possibly treat with the new and healthy liver.
You should prepare for a transplant and possibly treat with the new and healthy liver.
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