I am here to share and learn

I have cirrhosis of the liver.  I was a non responder twice (treatment from doctors.)  I have started a vitamin regimen and take milk thistle daily.  Does anybody have imformation on alpha lipoic Acid daily dose recomendation for people with cirrhosis?

[HectorSF]

AsI said in my other post, NOTHING will slow or stop your liver disease except hepatitis C treatment. Get connected with a liver transplant center here in the Bay Area ASAP and start getting proper care before you cirrhosis progresses any further.


Hector

[rivll]

Hi,
Welcome to the forum.
If you went through treatment, you probably have seen or are seeing a Hepatologist or G.I.., is that correct?

If not, I can advise you on how to apply for Charity care if you are unisured and you can see someone in S.F.
PM me and we can talk, I live in the East bay too.
Take care

[emeraldjasperthrone888]

I got medicaid when i noticed that i was getting episodic.  I am waiting for medicare to go through. SSDI from the feds went through about 6 months ago.  my name is kelly its hard for me to navigate this for now.  

[emeraldjasperthrone888]

if you are in the bay area...I wanna get to know you

[emeraldjasperthrone888]

thanks today HectorSF.  I'm hearing you and following up with that imformation.  I think I'm doing pretty good establishing my new to me medical care.  thanks to you, it helped to navigate me a little bit closer to where I want to be.  I want to be ready,  I need a good team and I have the greatest cheer leader in the world.  ME ...you give good suggestions

[rivll]

Okay, I am writing it down-now ask the moderator to delete it cause it is public--never mind I will let her know-Have to protect your privacy.

[nursegill]

My Dad is stage 4 and was told in May he would not have 6 weeks to live. He is still living and is only on vitiamins and minerals. He is back to making his crafts and doing yard work. We go have blood done every 3 weeks so I can keep an eye on what is going up or down. The doctors don`t know what to say. If you want a list of what he is on I will provide for you. I am not a nurse. Just a daughter who loves her dad. I give him treatments every day with a machine called neurocare. This does keep his blood flowing to all his organs. So far no shut downs. I give him a bath ever 4 nights with a detox for the liver. It is from a company called DNR liquid needles. These 2 things have made a world of difference in him. My dad is 78 and has a pacemaker. He was a mess the last year and now he looks 90% better. The gastro doctor asked me in Jan what was the name of the machine. He said all his patients are on meds. He can`t belive that my dad is not and seems to be doing better. I will give you a list of the items that I swear by. They may not help you and might not be for everyone. But you can look into them yourself. I am writing this only because it has help my dad. And all but one Dr. has given my dad the wrong advise. By the way he does eat what ever he wants and has no problem with it .   Nursegill

[Advocate1955]

Hi emeraldjasperthrone888,
As Hector said above, nothing will slow down the progress of your Cirrhosis other than treating your Hep C and stopping the virus from continuing to damage your liver.
Please see a hepatologist ASAP.  Please do not take any vitamins, supplements, herbs, or over the counter medications without approval from a hepatologist.
Advocate1955

[emeraldjasperthrone888]

thanks and I will check into a hepatologist I am trying to get refferred to UCSF from my GI doc.  I have an appt coming up with my GI doc.  I am sick again.  I am drinking alot of fluid and forcing myself to eat.  It feels I've lost a few more lbs.  (not good) This last episode has lasted over a month.  I can't seem to ketch a break...dang it sick again weakness, nausia, no appetite.  blah, blah, blah.  I just keep telling myself,  I'm going to get through this, its just an episode, this will pass.  

Does anybody out there know if UCSF accepts alameda alliance for health or should I have opted out and just got straight medicaid?...my new to me GI doc does not accept blue cross

[emeraldjasperthrone888]

thank you pumpkin  :)

[Advocate1955]

It sounds like your Cirrhosis may be extensive and you may be experiencing some symptoms of your liver not functioning properly.  I am not good at reading and interpreting lab results, so I haven't replied to your other post on this forum for help understanding your labs.  You've mentioned in various posts some symptoms such as severe weight loss, feeling "loopy" (confused, forgetful, disoriented), no appetite, etc.  These could be symptoms of what is called "decompensated Cirrhosis", which means extensive damage to the liver causing it to function poorly.  Do you have swelling in your abdomen or edema in your feet and legs?  Do you have any bleeding in your esophagus or in your stomach?  These would be some other symptoms of decompensated Cirrhosis.
I hope that your appointment with the gastroenterologist is soon and that you can get the referral to a hepatologist soon as well.
Advocate1955

[emeraldjasperthrone888]

strangely enough I have brown spots on my shoulders with spider like varasies in the middle of them??  ,,,varasies, i think thats what its called..  sorry if my spelling is off i[m being lazy.  I have passed blood through my urine and bowels but not lately.  No bleeding out through my esoph...thank God.  some swelling in abdomin (abdomen) but have never been down that road of having to get fuid tapped.  I am in early stages well kinda.  I'm having raging flare up.  You would never know my sufferage by looking at me.  I am not looking like dead man walking, yellow, looking like a i'm prego.  Please anyone out there who reads this don't take offense.  I know but for the grace of God I'm not there.  I feel horrible.  I ate a peice of toast, apple  sauce, and a half of a banana today and when I drink fluid?  It goes right through me.  For me when I get sick it morphs into other things.  I hate hepc/cirrhosis.  Who knows maybe I will end up in the ER again for the third time.  I feel like family/MDs out there arent really taking me seriously.  I get cranky when I'm sick.  EJ

[Advocate1955]

You need a hepatologist now. You have many of the symptoms of advanced cirrhosis and End Stage Liver Disease. You need to be treated by a hepatologist. A general doctor and a gastroenterologist are not capable of caring for you. Your End Stage Liver Disease symptoms can be managed by diet, medications, monitoring, and procedures that will help you stay alive until you can receive a transplant. You need to get an appt with a transplant hepatologist at a liver transplant center ASAP before you have a life threatening emergency, so you can start the process of assessment and listing for transplant. No alcohol, limit sodium, drink water, no red meat, no iron supplements, no iron rich foods, increase fish/chicken/Ensure. You need medication to help increase frequency of bowel movements and reduce ascites and fluid retention. You need more protein because your liver isn't processing nutrients correctly. That is why you feel weak and sick and can fight infections.

[Dee1956]

The above posters have given you excellent information/advice.  I hope that you can get help.  I know it can be confusing.  I have problems with confusion since treating my HCV though it is getting much better, it just takes time after getting to SVR.
Are you on lactulose? Sometimes the ammonia will build up in the body and that can cause confusion, lethargy, sleepiness

Good luck to you