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?
" if I have cirrhosis can I get tx (elsewhere) for hep. c or is it considered too dangerous to subject a cirrhotic liver to? "
First you must find out if you have cirrhosis. And what kind of cirrhosis. There are two stages of cirrhosis generally. From the symptoms/complications you are having it appears that you have "decompensated cirrhosis". This is the more advanced stage. Are you taking medicine to manage these symptoms? Diuretics, lactulose, Nadolol, etc? If this is true you have "decompensated cirrhosis" won't be able to try treatment as it is considered too dangerous to your health to treat. So you must know exactly the status of your liver disease. If you have "compensated cirrhosis" (usually people have no symptoms except fatigue) you still have time to treat. So let the doctor do a biopsy. It is critical to know the results. It will determine your options in the future.
If you have "compensated cirrhosis"...
In the earlier stages of clinical trials patients with cirrhosis are usually excluded, But when they have the Phase III trials patients with cirrhosis will be included. So I would recommend letting the clinic know you. Talk to anyone you can, ask them if they will be doing the phases III trials or if they know who might. Since you don't have health insurance it is tough to get treatment.
If you have "decompensated cirrhosis"...
Your only option will be a liver transplant.
I don't know your financial and working situation. The problem is once you are diagnosed as having hepatitis C and cirrhosis it is almost impossible to get affordable health insurance. Are you working? Once you are diagnosed with cirrhosis if you can have a doctor say you are too ill to work. Then you should apply for Social Security Disability Insurance. SSDI. The good/bad news is you will qualify for Medicare in two years from when you are considered disabled by Social Security. I am on SSDI now.
Or you can apply for SSI if you have very little money and assets and you can qualify for Medicaid. I do not know too much about this process.
My point is, you will need some form of medical insurance if you are as ill as we believe you are. I am on the waiting list at UCSF here in the city for a liver transplant. UCSF in my humble opinion has the best liver disease treatment and transplant program in Northern Cal. I have been going there for 3-4 years now. My doctor is one of the leading doctors in the field of hepatitis and liver transplantation. My liver disease is "decompensated cirrhosis" (also known as End Stage Liver Disease) and I have developed liver cancer so the only option for me is a liver transplant. To be eligible for a transplant I had to prove to UCSF that I have $1,000,000 in insurance to be put on their list to be eligible for a transplant. Luckily I still have COBRA health insurance from my last job when I had to leave work because I was too ill to work any more. Needless to say, you have to be wealthy to afford treatment this without insurance.
Get the results of you biopsy and get a copy of the report. (VERY important!). Have you had any blood tests performed? Get copies. In California you have a right to all your medical records. You may have to sign a HIPAA privacy form, but that is easy to do. When you get your results post them here and we can assist you in understanding what they mean.
So let's not jump to and conclusions until we get the results of you biopsy. And then we will take it from there.
Hang in there. You are doing the right things now. Glad you posted.
Thank you so much for your thorough and supportive reply.
I had blood tests done a few months ago through a county clinic. I will note just the abnormal results.
WBC 33, RBC 3.92 low but close to normal range according to my results.
MCH 343, Platelets-78 Neut % 38.1,
Lymph % 51.1 EOS% 4.3, NEUT#-1.24
Potassium 3.5, Chloride 111, Glucose 127
ALT 226, Carbon Dioxide19, AST 238, Alkaline Phosphatase 214, Total Bilirubin 1.9, Albumin 3.00 Total Protein 5.0
I am actually feeling better than I did then, less bleeding, itching less intensive.
Can one go from decompensated cirrhosis to compensated cirrhosis and what is the projected life expectancy for someone with decompensated cirrhosis?
Maybe this will bump it up a little ... My poor understanding of cirrhosis is, any damage done by cirrhosis is permanent. Curing the cause, HCV, stops the progression of cirrhosis, as long as other healthy steps remain in effect like, no alcohol, and a low fat diet. Decomp to comp is not an option, the liver has gone beyond the fail safe point.
Assessment of Fibrosis and Cirrhosis in Liver Biopsies
"...Fibrosis regresses because successful treatment results in apoptosis of the fibrogenic cells, causing a favorable shift in the balance between the fibrolytic metalloproteinases and their profibrotic inhibitors in the tissue microenvironment, and leading to resolution of the excess extracellular matrix.
What is true for fibrosis at large, also applies to the excess fibrous tissue of the liver in the setting of cirrhosis, i.e., both progression and regression of fibrosis may occur in cirrhotic livers over time.[22–25] Actually, the work of Wanless et al has demonstrated that regressive changes may occur simultaneously with progressive ones. Furthermore, suppression of the necro-inflammatory activity can result in gradual fibrous septum resorption and loss of nodularity. It has been suggested that the following histologic features are indicative of regressing fibrosis:[3,25] perforated delicate fibrous septa, isolated thick collagen fibers, delicate periportal fibrous spikes, hepatic vein remnants with prolapsed hepatocytes, hepatocytes within portal tracts or split septa, minute regenerative nodules ("buds"), aberrant parenchymal veins, and portal tract remnants. Based on morphologic changes, it has been suggested that regression of fibrosis and nodularity in cirrhotic livers may result in ISC (Fig. 3), a condition that is characterized by persistent vascular changes resulting in portal hypertension.
In our daily practice of diagnostic pathology, we review an increasing number of liver biopsy specimens with features suggestive of fibrosis in regression, such as attenuated, and often perforated fibrous septa, as well as delicate periportal fibrous spikes (Fig. 4). Sometimes regression of fibrosis can be clearly documented by comparing the findings of the patient's current biopsy with those of previous ones. However, even when previous biopsies are unavailable, delicate remnants of fibrous septa are very characteristic of regressing fibrosis when seen in the absence of necro-inflammatory activity."
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
Thank you so much for your information. There is so much I do not know yet about the liver, specifically mine. I won't be able to get a biopsy for about a month, but I just had a slew of blood tests, liver panels. Unfortunately, the Dr. at the county clinic won't be able to see me until the end of September, so unless the Dr. at the research clinic can enlighten me on the results, I am on my own, trying to figure out what it all means.
Through this forum, I am truly getting an education and I deeply appreciate all the feedback.
Thank you and all the best,
Rivll (Ps I don't know what MELD is, but maybe it will be on the latest tests I just took.)
MELD is a score acheived through an algorythm that looks at three blood markers. MELD is used an a standadized formula for measuring liver health and managing transplant lists - the higher the score the worse off you are. Google MELD calculator. That will lead you to what you need to calculate meld score.
im also around a 12 - it does fluctuate - the hepatologist at the transplant center told me a 15 was needed to get on the transplant list - i registered with them because it was recommended to do so early on - he said that generally speaking after having compensated cirrhosis for 10 years or so in most cases decompensation is usually only a few years away - i would seek treatment elswhere asap instead of messin around with a trial - they have their place its just not at my place - or generally speaking at yours either - if i may be so bold - im not sure exactly sure how long ive been cirrhotic but im guessing at least 10 years ( i was diagnosed with hep c over 6 years ago and i was cirrhotic then ) judging by what i now know about it - you may be in similar shoes or you may not - best to err on cautions side - best wishes
My Dr. had given me the same info as cheesenrice's prior to tx - and it was always this dark cloud hanging over my head. So I was hoping to hear a different response when I brought this up again post tx. She told me that with the HCV gone, the outcome has changed (for the better) because my liver isn't continually being assaulted anymore. However (always one of those disclaimers, eh?) the need for semi-annual imaging will remain indefinitely for HCC, although even there, the incidence decreases with SVR.
She wasn't as positive thinking on reversal of cirrhosis except marginally, but did allow that more needs to be learned about it over and above the few articles out there on it - and now with more and more cirrhotics clearing the virus, perhaps we'll get a better handle on it. I asked if she would recommend a bx down the line to check on my liver and she was adamant - NO - that labs would suffice along with the regular monitoring.If a scan ever becomes more readily available here in the US though, I will be one of the first in line!
Of course, there was the usual advice about maintaining a healthy diet and BMI. I still have a fatty liver that I'm trying hard to eliminate/reduce since this too causes inflammation. Perhaps I'm a bit overly optimistic, but I'm still betting on more regression......On that note, off for a brisk walk!
My hepatologist told me 50% chance for regression over time. It takes time. He admonished "Just don't get fat on me."
HR placed a big value on diet - crazy strict. Eat leafy veggies before everything you put in your mouth. Follow veggies with lean protein. No desserts. No pasta. Exercise lots and remain rail thin. Uggh.
reversal of fibrosis even cirrhosis is possible with the successful elimination of the cause - there are many factors involved that determine the extent of reversal - the use of antifibrotic agents is beneficial - and yes more needs to be revealed - if i can ever clear this virus i will have another biopsy down the line
" HR placed a big value on diet - crazy strict. Eat leafy veggies before everything you put in your mouth. Follow veggies with lean protein. No desserts. No pasta. Exercise lots and remain rail thin. Uggh."
This is my biggest concern - diet control. Unfortunately, I have never been big on eating vegetables, particularly salad-type foods. I've also had a serious sweet tooth that rivals anyone you might know who is addicted to desserts. Additionally, I have numerous other medical conditions that should provide me with all the motivation in the world to follow a strict diet as you alluded to - heart disease (2 bypasses & several stents); liver disease that includes hep C/cirrhosis/hepatic encephalopathy/portal hypertension; HBP; sleep apnea; depression; skin dieases - rashes, acne; psoriasis; etc; a chronic pain condition called trigeminal neuralgia that was unsuccessfully treated with gamma knife radiation, killing the nerve and resulting in the need for daily opioids (opana/oxycontin; oxycodone; nucynta), and some other minor issues as well. You'd think with all these health problems that I would be highly motivated to watch my diet closely and work out regularly, but the opposite is true. I don't know if some of the meds cause the craving for sugar, or if the daily fatigue comes from the liver diseases, the heart problems, the opioids, or a combination of any of the multiple causes in play. The bad news is that my diet is terrible and I can't muster the strength to do the obvious - control my diet and get plenty of exercise. Just looking at me, one would never guess I had any medical issues, much less the life-threatening ones with which I deal with regularly.
Does anyone else have similar issues in this area? I often feel that my failure to address these problems the way someone in my position should, represents a deep-seated attempt to get it over with and subtly force the end. I used to have the ability to use mind over matter to cope with most any issue, including diet and exercise, but after battling these diseases for over 20 years that way, I think I've just hit a wall and can't fight it any more.
I didn't mean to turn this into a psychanalysis of my health problems, so I apologize if I rambled on beyond accetable limits. getting back to the subject at hand, however, if anyone has any advice on how to cope with the diet and exercise issues, I'd appreciate the input.
I remember you saying, GD and agree on the "fat" issue with liver damage. I eat a pretty healthy diet, but not "crazy strict". My issue was dealing with the joint issues/pain and minimal exercise, but I've tweaked that way up being summer and all. Definitely a ways to go to get rail thin, that's for sure. I remember someone else here mentioned shooting for a runner's body.
And best of luck to you, rivll. Hope you find a Dr. with expertise in HCV with an emphasis in cirrhosis so you can find out exactly where your livers at and the options available.
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.
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,
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?
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,
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........
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 ?
im not sure but awhile back i remember reading something about the imaging dyes they use with mri being hard on the liver and kidneys --- i would think that a relatively healthy liver has more chance of bleeding than a cirrhotic liver during biopsy - isnt a ct scan as accurate as an mri
FYI for those of you that are having a difficult time eating more greens.....
GREEN SMOOTHIES. I drink them all the time and you can really make them delicious. Rivil touched on it with the banana and kale/spinach. However the different possible smoothie conconctions are almost endless. It is very important to change your greens up often so that you don't build up any toxins from the same green, such as spinach, which seems to be the popular one. Also, organic greens are a must!!
I read a book several years ago that really changed my diet and eating habits. The book was titled, "Green for LIfe" by Victoria Boutenko. She also has another book, titled "the Green Smoothie Revolution" which includes over 200 recipes for green smoothies. The point of blending them down to a smoothie as opposed to simply eating them is explained, but basically, the blender gets them down where our bodies can accept them at a cellular level.
Her familys remarkable stories of healing, based on their diet changes are more than inspiring, They are amazing and they are all TRUE. Her family also went from a conventional amercian diet to a raw food diet and the results are amazing!
I encourage any of you that want or NEED to incorporate a healthy diet which includes greens into your own diet, to investigate her books. This is her life's work and it is impressive.
Here is a link to her and her family's website.
I hope this helps someone out there!
To your health!
ps...since I started drinking green smoothies, my enzyme levels are always normal That was 3 years ago.
Thank you for that information. I am not surprised by your positive results. I know when I was serious about taking in the juiced greens and other veggies, I went a long time w/o symptoms and with normal enzyme levels. I think that is why I didn't become proactive about tx. I didn't have insurance and felt that I was holding my own. Then, about 3 years ago, I stopped not only the juices, but began eating baked goods, processed foods etc and within a year or two started feeling really bad and recently have been told that I have symptoms of cirrhosis which I think my bld. tests confirm.
I am back on track and just hoping it is not too late.
Well Rivll....In my opinion, it is never too late to eat right. If you don't, you will never know if it would have helped. It certainly can't hurt...right? And you may be surprised!
So glad to hear you are back on track. Let me ( us) know how you feel after a few weeks of eating healthy again, ok?
Good luck ,and to your health!! I'll drink to that....( a green smoothie, that is) :)
If you dont' get into that study, keep on truckin until you find someone that will treat you!
You deserve the $10 best word prize for "Disambiguating." As different livers progress in damage, it seems expected that different symptoms might manifest in different sequences. Surely it's a good sign that portal hypertension is easing. I would expect a reduction in inflamation could contribute to this. My spleen went imediately back to normal size while on treatment - I attribute that to absence of inflamation. Good luck - God knows it's nerve wracking.
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