Damned cirrhosis!

[yodennis]

As the encepholopathy (Xifaxan has ambiguous results for me)  creeps onward in less and less subtle steps, and the the variceles go untreated (unemployed with no insurance for any longer- and with an organic resting heart rate of 58-60 the beta blockers were too devitalizing anyway). As the 2 y.o. twins demand more and more attention and their mother becomes less generous with her patience. As the depression and insomnia sit on my chest each night I ask this: With my life, concentration deficit, and labile fatigue- If anyone notices any NYC related optimistic studies, e.g. Telapravir, etc advertised for a borderline compensated cirrhotic with a twice failed Interferon/Ribo history please let me know privately or on the board. I acknowledge a certain lazy defeatism (aka depression) but my negotiating the trial pages just becomes a dyslexic muddle in the middle of my sleepless nights further galvanizing the insomnia....Sheesh. d

[orphanedhawk]

I wasn't diagnosed with HCV until I already had decompensated cirrhosis.
For three years I kept the acsites under control by keeping to a very strict, no, or rather very low salt diet. Stay away from red meat. Eating soy products, tofu and egg whites can help with albumin levels.
Read labels, many things have added salt even bagged lettuce.

You should know that lactulose will help with the encephalopathy.
I bought it cheaply online from Canada.

Get insurance however possible, Hector's idea is a good one.
I was told this, didn't do it, and landed up paying over 75k for a live liver transplant in Taiwan.
I didn't have little kids, had some money in the bank, and a spouse to give me full time support as well as a grown daughter who was my donor.

Of course treatment would be your first option but in your situation, you very well may be looking towards a transplant sooner than you think.
Anyway, that's what happened to me.

Good luck.

[22hamilton]

The best of luck to you in your search for a trial, this disease is so tough. hope you find more inner strength to deal with your situation.

Take care

Paul

[HectorSF]

I just wanted to make it clear that I don't blame you for not having health coverage. That all Americans don't have adequate healthcare coverage is a societal issue. Besides what's past is past no sense worrying about it or beating yourself up about it. You need to put your energy into something positive and that will give you a better more hopeful future.

New York should have more options then most states. There is probably health insurance you can purchase as an individual even with a preexisting condition. Of course this all depends on what you can afford. The best option is always through an employer. Once you get insurance after a certain amount of time you can retain your insurance for 18 months or 36 months, again depending on your state, if you pay the COBRA costs.

Long Term:
What is your MELD score? Have you thought about Social Security Disability? If you are limited in what you can do physically because of your liver disease and have a doctor to support your claim with diagnosis, blood tests, scans etc you can apply. It is up to you to prove that you are unable to work any job. Not just ones you have had for the past 15 years.
Why apply for SSDI? As your liver decompensates just performing basic life tasks become impossible to do because of fatigue and the toxins effecting your brain. When your MELD rises into the upper teens and 20s you will be less and less able to function. You will be hospitalized periodically do to ascites, bleeding varices etc. At that point only a liver transplant can save you.
Just about everyone I know who is waiting for a transplant is disabled. The reason for applying for SSDI is so that after 2 years of being declared disabled according to Social Security you are eligible for Medicare. We call it Medi Cal here. Medicare will pay for all your health needs related to having a liver transplant. Which is many 100s of thousands of dollars.

Other people have given you some good ideas. So maybe one of these will work for you.

Best of luck!
hectorsf

[Trish77]

The other wild option is consider a move to Canada. Any and all doctor's appointments would be free.  Drug costs would be pro-rated and covered based on your situation.  Canada is in better economic shape than the U.S. at the moment.  And we're a pretty decent place to live.  Not so far from NY if you have family and friends you want to stay connected with.  I have no idea what the requirements are but you could find out. Just sayin'.

[Trish77]

Forgive me if this trial is not appropriate for you.  You stated you were borderline compensated and the exclusion in this trial is decompensated.  So I post it in the event that you qualify. They are accepting compensated cirrhotics and capping them at 10% of the participants.  There are 73 trial locations and quite a few of them still in the recruiting phase, including some in NY.  I'm sorry, I don't know my NY geography well enough to know how close they would be to NYC.  Earlier trials of this drug showed very good and promising results.

http://clinicaltrials.gov/ct2/show/NCT01170962?term=BMS790052&rank=2

I would also echo Willing.  Posts by Evangelin have good information and you might want to drop her a PM.  She may have some info as to how someone manages to afford supplements that are also not cheap.

[willing]

wise words from Hector, as always. Wanted to add two thoughts, along with my best wishes for this rough time. If scans for clinical trials aren't turning anything up it's likely not just a depression/outlook issue. Trials are primarily looking for tx-naives with no complicating factors. Cirrhosis is nearly always an exclusion. How was your response on previous attempts ? If relapse your outlook with the 1st gen PIs is much better than if you were a non-responder (and if so how limited was the response?). Also, as far as day to day management, take a look at posts by evangelin. Mangement by supplement is an explosive topic around here but the results she describes are impressive.

[yodennis]

Thanks. Much of these observations I am aware of both empirically and theoretically. And I am enormously aware I am gambling with my life. As many know by the time they reach these forums and/or cirrhosis: without money your doomed. I'm literally embarrassed by the sense of futility and irresponsibility of my situation. And (contradicted by the lucidity of my writing or not) I am impaired ( as opposed to debilitated) with concentration problems and inertia. Nevertheless I am looking for workwhich would then of course satisfy the health insurance needs (Ironically I am a health care professional) I am also aware of the need for prophylactic testing for Ca. and monitoring of the varices and the justification of an SSRI to at least bring me from the basement to the first floor emotionally But my point is: as shameful as I may seem in my inertia I am not doing anything (100% finacially related without unpacking all the complications of that) I am asking for help in keeping an eye open for any tx. failure/cirrhosis studies in a passive effort to possibly defeat the virus in hopes of arresting the cirrhosis.

[HectorSF]

You have a lot on your plate.
First you need to manage your mental health. Try to find a doc who will prescribe anti-depressants. You may have to try a few before finding one that works for you.
If you don't have your mind together, your cirrhosis will be too overwhelming when you decompensate. End-Stage Liver Disease is a battle for your life. It will take every ounce of courage and energy you have to over come it. It will probably be the most difficult challenge of your life.

Are you sure your mental issues are related to encephalopathy?
Are you taking Latulose or kristalose. Are you having 3-4 bowel movements a day?
Do you have high ammonia blood levels? Early stages of encephalopathy are very similar to depression. Insomnia, fatigue, muddled thinking and poor memory and concentration.

Your resting heart rate is not too bad. But you are taking a risk by not treating your portal hypertension. The dose of nonselective beta-blockers is determined by a 25% decrease in resting heart rate or a decrease in heart rate to 55 beats per minute or the development of adverse effects. The use of beta-blockers decreases the risk of initial variceal bleeding by approximately 45%.

As long as you are compensated, you should be able to treat with the new STAT C meds which should be on market next year.
Not sure how you plan to pay as it will be quite expensive. You may be able to get the meds for free but you will need an experienced doctor to monitor you condition and there is always a small chance that the treatment could cause acute liver failure. In that case you will need a liver transplant to survive.

You need to start thinking about your liver disease and how you are going to pay for it. You are going to need Health Insurance as time goes by if the meds don't cure the HCV. Having cirrhosis is very expensive. You need a sonogram or CT scan every 6 months to monitor for liver cancer. You need blood tests to monitor your liver's status. And of course meds to manage your symptoms. If you don't take care of your health your children will suffer. You are taking some risks now that even a person without a family shouldn't take.

Please help yourself and your children by trying to stop your liver disease before your liver decompensates, you become so disabled you will need others to take care of you and you have no other option then a transplant which will cost hundreds of thousands dollars.

Best of luck.
hectorsf

[fretboard]

Sorry to hear about your difficulties.  I don't know if Harm Reduction Services can help you but they always helped me out when I needed health care or anything else and you may have one in your area.  They may be able to provide you with information on tx in the way of clinical trials.  good luck!!

http://www.harmreduction.org/section.php?id=71

[viaduk]

Sorry that I don't have anything concrete that would answer your question, but wanted to let you know that I feel your pain.  For someone with encephalopathy, you still  have a remarkable way of expressing yourself in writing.

For me, the xifaxan works much better when combined with kristalose.  AD for the depression associated with this disease also helps.  I'm sure that others who may be aware of trials will chime in -- tough for non-naive cirrhotics, as you no doubt know -- but  I will see my liver doc at NYU on 11/11 and if anything  shows up on his radar, I'll let you know.