Aa
Possible cirrhosis
Hi,
I have had hep. c genotype 2 for decades and in the past year have had symptoms of cirrhosis. Extreme itching, fatigue, ascites, edema, nosebleeds etc.
I don't have hx insurance but I went to a clinic that does trial studies for interferon and 2 new drugs shown to be very effective for tx hep. c.
The Dr. will do a biopsy but feels that I probably have cirrhosis which will preclude me from the studies at their clinic.
My question is, if I have cirrhosis can I get tx (elsewhere) for hep. c or is it considered too dangerous to subject a cirrhotic liver to?
Thanks
I have had hep. c genotype 2 for decades and in the past year have had symptoms of cirrhosis. Extreme itching, fatigue, ascites, edema, nosebleeds etc.
I don't have hx insurance but I went to a clinic that does trial studies for interferon and 2 new drugs shown to be very effective for tx hep. c.
The Dr. will do a biopsy but feels that I probably have cirrhosis which will preclude me from the studies at their clinic.
My question is, if I have cirrhosis can I get tx (elsewhere) for hep. c or is it considered too dangerous to subject a cirrhotic liver to?
Thanks
Best Answer
damage done by cirrhosis is not necessarily permanent especially with successful treatment of the virus - only a professional can tell you if you have truly decompensated - physical indicators of decomp are just that - most can appear earlier in some cases - do you know your meld score - i know of a few people who are treating with decompensated cirrhosis and one is currently undetectable - not probable but possible
A good point regarding the potential bleeding danger when doing a biopsy of a cirrhotic liver, This seems to be a very relevant question but I have never heard it asked until now.
If it is a serious issue, can a patient ask for an MRI instead ?
If it is a serious issue, can a patient ask for an MRI instead ?
Disambiguating complications is often a good way to reduce anxiety or at least be anxious about the right things. My experiences with compensated vs. decompensated cirrhosis have been ambiguous. My hepatologist sees me as compensated as I still work as an R.N., play music professionally, have 3 kids (2 young) and lift weights. Nevertheless I have esophageal varices which I would have thought were irreversible unless you mitigated the cause (portal pressure intensity) but the last endoscopy (by the same hepatologist-endoscopy specialist) was stage 1 vs. 14 months ago when it was stage 2.....While I'm presuming my MRI with contrast (7/20) will reveal a progression in cirrhotic damage since the last one last year I should would appreciate a a similar or improved cytolgy report! Which reminds me: I didn't think they biopsied cirrhotic livers when there are (less precise But precise) MRI with contrasts because of the potential bleeding danger........
Regarding diet, I don't like greens much either but there are a couple of things that help get them down. I use a juicer and add an apple to the carrots, beets and kale. It lightens and sweetens it. An easier way is to put a bunch of spinach or kale and 1/2 a bana in a blender and whip it up. Gag it down. Not really that bad, but drinking it makes it go down easier.
Shortly after I found out that I had Hep. C, I went on a raw food diet (I was already a vegetarian) I was hard at first but I ate at a Raw food cafe a lot and made the juices and shakes at home. I checked by liver enzymes every 3 months for several years and the reading was always normal. I never deviated but I ate raw food desserts that had honey and agave. Most folks thought I was really an extremist, but I felt good. About 3 years ago, I stopped eating raw and with that my veggie consumption dropped to almost nothing, I ate pasta and cheeses and a lot of fruit. Got a bit fat too.
Since finding out that I most probably have cirrhosis, I returned to regular juicing, though I have not returned to the raw diet-it is just too much prep and I cannot afford to eat out like I did. In this short time, I have felt better-certainly not symptom free but much better.
This is kind of a long way to support your endeavor to include more veggies in your diet.
All the best,
Rivll
Shortly after I found out that I had Hep. C, I went on a raw food diet (I was already a vegetarian) I was hard at first but I ate at a Raw food cafe a lot and made the juices and shakes at home. I checked by liver enzymes every 3 months for several years and the reading was always normal. I never deviated but I ate raw food desserts that had honey and agave. Most folks thought I was really an extremist, but I felt good. About 3 years ago, I stopped eating raw and with that my veggie consumption dropped to almost nothing, I ate pasta and cheeses and a lot of fruit. Got a bit fat too.
Since finding out that I most probably have cirrhosis, I returned to regular juicing, though I have not returned to the raw diet-it is just too much prep and I cannot afford to eat out like I did. In this short time, I have felt better-certainly not symptom free but much better.
This is kind of a long way to support your endeavor to include more veggies in your diet.
All the best,
Rivll
Wow. This is a lot of information to process. Your stories inspire me and frighten me, but I am encouraged by your tenacity and determination. I have a tendency to just want to close my eyes and sleep. It is the fatigue, but it is also fear.
I was a teacher up until 2 and a half years ago, when I just wasn't able to keep up and left the profession. I have not had health benefits for even longer as I worked part-time for a few years before that. I don't know how long I have had Hep. C but I was diagnosed in 2000. It is only in the last few years, I have had the symptoms of cirrhosis.
Once I get the biopsy (The county Hep. C clinic has a waiting list and will call but it has been months) I will have documentation so I can apply for medicare, until then it is just a matter of waiting.
I know what you mean about diet. I too, love sweets and sometimes crave pasta. I am struggling with it, but I feel motivated now to get real serious about it.
I don't take anything but some liver support herbs and a multi vitamin, and have been wary of any over the counter drug. Sometimes acupuncture relieves my pain (aching joints) but I am wondering about diuretics. Are they safe? Do they tx just the symptom of edema or do they also help the liver?
Thanks again
I was a teacher up until 2 and a half years ago, when I just wasn't able to keep up and left the profession. I have not had health benefits for even longer as I worked part-time for a few years before that. I don't know how long I have had Hep. C but I was diagnosed in 2000. It is only in the last few years, I have had the symptoms of cirrhosis.
Once I get the biopsy (The county Hep. C clinic has a waiting list and will call but it has been months) I will have documentation so I can apply for medicare, until then it is just a matter of waiting.
I know what you mean about diet. I too, love sweets and sometimes crave pasta. I am struggling with it, but I feel motivated now to get real serious about it.
I don't take anything but some liver support herbs and a multi vitamin, and have been wary of any over the counter drug. Sometimes acupuncture relieves my pain (aching joints) but I am wondering about diuretics. Are they safe? Do they tx just the symptom of edema or do they also help the liver?
Thanks again
I don't know if you remember me. We passed several meassages about 1 1/2 yrs ago or so. I was living in Key West and had recently found out I had cirrhosis. It's been a long time since I logged on and I saw your name on a post.
I lost my biz in KW - couldn't work, and the economy and the BP oil spill was killing me. My husband and I moved to Pa and in with my mother (not easy), but it is close to Penn State Hershey Medical center which has a good transplant unit. I have not had a good time, sick with various things, and I just went through 6 months of all kinds of tests to check for infections etc. I had developed liver cancer which they are keeping at bay so far. I couldn't get approval for the list until they were sure there were absolutely no infections or spread of the cancer. I applied for disability and medicaid which covers everything. My daughter was going to be a donor and had started going the tests needed and then a medical problem and took her off. Because of the cancer my meld score raises every three months. In Aug it will be 27 and they said realistically they won't start matching me until it's in the mid 30's. So the cancer is a blessing and a curse. A friend of mine has a friend who was on the list for 12 years. That's a long time to feel as though you've been run over by a truck. But I feel fortunate. I have good Dr's and I can call them any time with any question. In Key West I wouldn't have been able to get the benefits I needed and the closest transplant hospital is a 10 hour round trip.
I was glad to see you are still doing well and still encouraging others. Take Care,
Sonni
I lost my biz in KW - couldn't work, and the economy and the BP oil spill was killing me. My husband and I moved to Pa and in with my mother (not easy), but it is close to Penn State Hershey Medical center which has a good transplant unit. I have not had a good time, sick with various things, and I just went through 6 months of all kinds of tests to check for infections etc. I had developed liver cancer which they are keeping at bay so far. I couldn't get approval for the list until they were sure there were absolutely no infections or spread of the cancer. I applied for disability and medicaid which covers everything. My daughter was going to be a donor and had started going the tests needed and then a medical problem and took her off. Because of the cancer my meld score raises every three months. In Aug it will be 27 and they said realistically they won't start matching me until it's in the mid 30's. So the cancer is a blessing and a curse. A friend of mine has a friend who was on the list for 12 years. That's a long time to feel as though you've been run over by a truck. But I feel fortunate. I have good Dr's and I can call them any time with any question. In Key West I wouldn't have been able to get the benefits I needed and the closest transplant hospital is a 10 hour round trip.
I was glad to see you are still doing well and still encouraging others. Take Care,
Sonni
I had decompensated cirrhosis, treatedfor hepC and relapsed.
Its true, you do need to get medical insurance even if its med-i-cal to get a transplant.
I didn't have insurance and had a live liver transplant outside the US paying out of pocket over 75k.
If you are low income you may be able to get charity care. It won't cover the cost of a transplant but it will cover other medical costs including treatment for hep C and complications from cirrhosis or after transplantation.
Check UCSF's web site, call them or you can look into going to CPMC.
I see Dr. Frederick at CPMC in S.F. and am quite pleased with him.
I'm sure he could see you before September. If you want contact information, send me a private message.
Good luck,
AF
Its true, you do need to get medical insurance even if its med-i-cal to get a transplant.
I didn't have insurance and had a live liver transplant outside the US paying out of pocket over 75k.
If you are low income you may be able to get charity care. It won't cover the cost of a transplant but it will cover other medical costs including treatment for hep C and complications from cirrhosis or after transplantation.
Check UCSF's web site, call them or you can look into going to CPMC.
I see Dr. Frederick at CPMC in S.F. and am quite pleased with him.
I'm sure he could see you before September. If you want contact information, send me a private message.
Good luck,
AF
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