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I Have It All. cirrhosis, HCV, End Stage Liver Failure. Please help.

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Posted 11/25/2008 6:26 PM (GMT 0)
I have it all from many years off self abuse. Any NEW updates on any Western or Eastern medicines would be greatly appreciated. I am currently taking Spironolactone, Furocemide and many herbal suppllements. I just got out of the Hosp for the 2nd time for elevated ammonia levels. I am trying everything in the world, including growing my own wheatgrass. Every day is hard enough to get through. rolleyes I even go to accupuncture and try stretching and breathing exercises.
Posted 11/25/2008 10:10 PM (GMT 0)
ESLDneen, I'm so sorry to hear you are suffering from these diseases. I wish you the best of luck. The only suggestion i have is about diet. A high carb, low protein, vegitarian diet is the most effective, from what I've read.

Good luck!
Posted 11/25/2008 10:45 PM (GMT 0)
ESLDeen, welcome to the forum.  You have lots of company here--both patients and caregivers.  Do you have hep C?  I just read in Mayo's newsletter that there is a study that just started.  It involves taking the oral antiviral agent telaprevir, in combination with peginterferon alpha-2A and ribavir (those 2 drugs often referred to as "the combo.")  The study will compare the benefits of 24 or 48 wks. of treatment.

Other than that, for liver disease in general, avoid red meat and eat lots of fresh fruits and vegetables.  NO alcohol, of course.  Have you taken milk thistle?  I know of people who have improved or cleared hepatitis through using this supplement.  Are you on Lactulose for the ammonia?

Take the best possible care of yourself as you can.  That will go a long way towards managing your liver disease.

You will receive lots of support and info here, so please post at any time.

Posted 11/26/2008 6:05 PM (GMT 0)
Hello ESLDneen and welcome to HealingWell.  I am also sorry that you are dealing with this disease.   And the only way I know of keeping the ammonia levels under control is with lactulose and diet.   If you eat a lot of protein stay away from the red meats.......and adjust the lactulose accordingly.   People need protein to guard against muscle wasting.  But at the same time need to eliminate the toxins that build up through bowel movements. 

I haven't heard of any supplements that help with the encephalopathy.  I know that lactulose is nasty........but think of it as a necessary evil.  

I have heard the same thing about milk thistle though.   My husband's GI doc told him not to take it.........I later found out that it was helpful to some people.  

Good luck.........and continue to get educated..........thoughts and prayers....

Posted 11/30/2008 10:57 PM (GMT 0)
I want to thank everyone that responded. Bottom line is every day is a new day. I'm scared to death though. I have a 4 yr old girl and it kills me to think I might not be around in a couple of years. So I must chug on for her.
Posted 12/1/2008 3:36 AM (GMT 0)
ESLDneen, I am sorry to hear that your sick. I hope you have someone to lean on at home. Someone to help you out with your daughter. My husband is also sick and if i was not around to push him and watch out for him he would give up all together. I'll keep you in my thoughts and prayers. Take care  
Posted 12/6/2008 10:08 AM (GMT 0)
Thank you again everybody. Now I'm scared about being this sick and having to find a job. My sisters is also looking for in home care. This is a real catch 22 because I'm too sick to work yet and I'm afraid of being turned down. Plus I don't know hoow I'm going to pay my bills and child support, much less money to live on. Another sleepless night for me. I REALLY don't know what to do now. I'm so scared I can't believe it. The future looks gloomy. Any help would be nice. thank you, ESLDneen
Posted 12/6/2008 11:21 AM (GMT 0)
ESLDneen:
Youve come to the right place for support. I too have ESLD chrissosis. Along with hypertension, anxiety, chronic pain from different types of arthritis, etc... I currently am taking lactulose and spiranolactone, for the liver. Plus all the other meds for my hypertension and ostoperosis. I have only been in the hospital once in two years due to ammonia. I have no symptoms except for encepalopathy, when I don't take enough lactulose. I am on a transplant list because I am end stage, but not ill enough to be any where near getting one.
I know the Dr.s don't like us to take supplements, but I think I have been stable because of all the supplements I take, milk thistle, omega three, L-ornathane, Vitamin K , Vitamin A, Calcium Magniusm and a great deal of zink sulfate which was prescribed for the ammonia levels.
So keep the spirit up for the little one. It is difficult, I go down in the dumps , more often than usual. It helps to just let it all out sometimes. Even though there is really nothing we can do to change time. Keep posting. Take care. june
Posted 12/9/2008 8:45 AM (GMT 0)
ESLDneen look into disability my sister has same things as you and I got her on that, it will help ease some of the financial issue. You may even be able to get some assistence to help with kids and all.
Posted 12/10/2008 9:48 AM (GMT 0)
ESLDneen:
I went to an endocrinologyst today , Of course she asked if I was taking any suppliments and I only mentioned calcium vitamin D, magnisium and zink which were prescribed. She say I should try taking milk thistle and Omega3 fish oil . Which I was taking, I admitted she said to take twice the amount I was taking. So now it is OK for me to admit to milk thistle and omega 3 fish oil.
Posted 12/16/2008 6:49 AM (GMT 0)
thanx again everyone. I applied for disability today and I feel like I was almost abused. My head still hurts after being on the phone for 2 and a half hours. They told me if my doctor sent in this certain form that says I will die due to this disease. My doctor agreed and told me to call his secretary for the form. And of course his secretary has no idea what I'm talking about. This form would guarantee my disability and expedite the procedure. Now I have to walk to the SS office and request a form and THEN take it to my doctor to fill out. I've got the belly of a whale, I have to go in for a tap on Wed, and then more walking. This is very tiring because my feet are huge and hurt from the edema. It's hard to stay focused on healing with all this other stuff going on. I also just got out of the hospital for elevated ammonia levels. I think I did some permanent damage this time. Someone please talk me out of my funk.
Posted 12/16/2008 9:46 AM (GMT 0)
ESLDneen:
Go to the office and tell them you need help filling out the paper work and if thay need any info. they can have you Dr. Fax them whatever they need. If you have problems getting around that is only one of many examples you can give them , as to why you need dissability.

I guess I was one of those lucky ones. My brother who has kidney problems and is on disability. Had been encouraging me to file for about 5 years , due to my arthritis. I finally went in after being diagnosed with cryptogenic liver disease ESLD .
I only went in to get the papers. Before I knew it I was sitting at a desk with a gentalman who asked me a million questions. He proceeded to enter all information into his computer. He asked for Dr.s info. of course I was not prepared . I gave him permission to get it faxed from all Dr.s Clinics and Hospitals I'd been to.
To make a long story short. I qualified within three months. I had been told I would probably have to appeal severl times . When they sent letter saying I qualified just based on Dr. reports.

I should have gone sooner.
Be aggressive tell them you can no longer fill out a ton of papers. Or you can just go on line and fill everyting out at home. Check on line for a web. page. I cant remember what it is.

good luck june
Posted 12/16/2008 7:31 PM (GMT 0)
ESLDeen, I'm so sorry you're going through this. My husband has ESLD and we were actually very fortunate when he became sick. He went into the hospital vomiting blood. He'd actually been doing this for a 24 hour period and was being stubborn about going. At the time, he'd been laid off due to NAFTA, and was going back to school. He came home from classes, had lunch and that was all she wrote. He finally let me take him the next afternoon. At the time we had no money, and times were really tough and they transferred him to Macon. Well, while he was in that week, I received a letter from a company stating that they could help with getting him help for the medical bills, disability, etc. I personally thought it might be a scam but decided to call anyway and was very glad I did. It took no time for them to get him approved for disability. I cannot remember the name of the company, this was in Georgia, but you may want to contact a patient advocate at the hospital that you receive care from and see if they know or even have something like that. This company contacted me because not having insurance and all the hospital gave them our info. It really was a God send. In the meantime I will do some searches and see if I can find a national company like that. I hate to think of how long it would have been otherwise. I have known people who were terminal that took several years to actually be approved and the process is just absolutely frustrating as so many on this board can testify. Good luck and keep us updated!
Posted 12/19/2008 12:54 AM (GMT 0)

Sharm, welcome to the forum.  I wouldn't get any supplements for your dad without clearing it with his doctors first.  Some things can actually be injurious to the liver, which is the last thing you want.  Milk thistle is usually okay.  I take a multivitamin daily, along with daily vit. C (500 mg) and E (400 IU.)  I also take Lasix and Aldactone and sometimes extra potassium for foot cramps.  My doctor suggested melatonin for sleep, and it's working quite well.  I buy all of my supplements at the drugstore or supermarket.  You can get them at a health food store, but they're more expensive there.  I do get cascara sagrada (for constipation) at the health food store, as other stores have stopped carrying it.

ESLDeen, the online site for Social Security is socialsecurity.gov.  You can apply for disability there, though they will send you a ton of paperwork to fill out.  I did my initial application on the phone and then filled out the paperwork and mailed it in.  After the first turndown, I got a lawyer.  I supplied him with all the updated medical reports to forward to SS.


Posted 12/19/2008 1:09 AM (GMT 0)
Sharm, Welcome to the forum. I agree with Connie. It's always best to ask the doctor before taking supplements or even over the counter medications. With over the counter medications you can ask the pharmacist where your dad gets his prescriptions filled. We use Walgreens for my husband. They have been very helpful to us.

I'll be praying for you both.
Posted 12/19/2008 1:34 AM (GMT 0)
Hep93,

Be very cautious taking potassium supplements while on Aldactone (Spironolactone). Aldactone is a potassium sparing diuretic. It often increases serum potassium levels and can cause hyperkalemia (potential for fatal heart arrythmias). Therefore, it is recommended that potassium supplements and salt substitutes containing potassium be avoided. You should have your serum potassium levels tested frequently to ensure your safety.

Just a heads up.

Thanks,

Penny
Posted 12/19/2008 4:21 AM (GMT 0)
Penny, yes, I know this and I do get blood checked every few months.  My hepatologist is aware that I occasionally take a 10 mEq cap. of potassium which they prescribed...maybe once a week.  Sometimes I take an extra Aldactone instead of the potassium for the cramps.  But I appreciate your concern.  I don't take anything w/o my hepatologist knowing about it.  wink
Posted 12/21/2008 8:46 AM (GMT 0)
I've finished with the disability nightmare and now I'm in a lot of pain. My whole body aches and I always feel sick or almost passing out. I'm going to Phoenix to see my daughter for 8 days and I'm scared. Now what? Im staying with friends who still drink and smoke and I've got a certain regiment I try to stick to. Any advice on anything listedabove would be great. thanx, ESLDneen
Posted 12/21/2008 3:02 PM (GMT 0)
ESLDeen, I hope you have a good time with your daughter. I'm sorry that you are not feeling well. I can only imagine what you are going through. Do you have medication for anxiety? My husband has been taking that for a few weeks and it seems to be helping. Pray works also. Give it to God. He can ease your fears and give you peace of mind.

I continue to pray for you.
Posted 12/21/2008 7:31 PM (GMT 0)

ESLDneen, is it possible for you to stay elsewhere when you visit your daughter?  I wouldn't want you to have a relapse and drink.  However, even if you are sure you won't, I know for myself it's very stressful to be in that type of environment.  If you are not feeling well on top of it....it could be miserable.  Of course, with the holidays there is lots of "partying," too.  If you are unable to stay anywhere else, try to excuse yourself when the drinking and smoking become too much for you.  Explain that you are not well and either go visit your daughter, go for a drive, or just escape to your guest room if you have one.  I agree that anti-anxiety medication might also help.

I hope you will have a good visit with your daughter.  I haven't seen mine in 2 years.

Posted 12/22/2008 1:12 AM (GMT 0)
Thank you Connie :-) :-) turn
Posted 1/29/2009 12:06 AM (GMT 0)
Im still in Phoenix and trying to deal with a complete life change when I get back to SF. My sister moved me into an apt for a few months. Living with someone like me is quite taxing. Im severely depressed and in lots of pain right now. Im also out of insurance so I hope the VA will cover me. They've got all my info and accepted me into the hospital for a 5 day stay. I hope there are no loopholes. Now Im very fearful for my life. The pain seems to get worse every day. Not only that but the X is not letting me see my child so its even harder to be here. Thought I'd keep everybody posted. Please stay in touch my friends, ESLDneen sad
Posted 1/29/2009 1:13 AM (GMT 0)
Hello ESLDneen, thanks for the update. Sorry that you are in so much pain. My husband didn't experience a lot of pain with his disease. Lot of discomfort from itching and bloating though.

He was a patient at CPMC in San Francisco. It's a good hospital. Hope you will have a good experience with the VA hospital.

Have you had a chance to read over some of our older posts. There is a lot of good information on diets and meds.

Take care.......thoughts and prayers..........
Posted 1/29/2009 2:26 AM (GMT 0)

ESLDeen, I just wanted to mention that I have hep C, cirrhosis, and had liver cancer and haven't had pain (except for post-op pain.)

Penny, I saw a new physician today, a cardiovascular doc, and his ARNP.  I mentioned the foot cramps to the ARNP, as I had them really bad last night.  She suggested tonic water.  Says the quinine in it works and I only need to take a couple of ounces.  Definitely have that on my next shopping trip.

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