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Posted 9/15/2011 2:06 PM (GMT 0)
 Hi im new to this site, but im hoping someone has some information on stage 4 cirrhosis. my husband was dignosed with cirrhosis 13 years ago. he kept drinking untill 3 years ago. We have no health insurance so he hasnt seen a doctor in years. is health has gotten so bad. His eyes stay yellow, fluid on his stomache so bad he looks like he is poregnant. His hands shake, he stays sick and in pain. He doesnt sleep at night and he sweats so bad while he sleep, strong urine smell, blood in his stool. and so many more symptoms. Has anyone experienced this? I was wondering what stage he may be in. We have six kids and our youngest is only 3 months old.Im a stay at home mom, but he will not be able to work much longer. any info i  would appreciate. Thank You. 
Posted 9/15/2011 3:02 PM (GMT 0)
Oh HB, what a dilemma.

We have been in your shoes. My hubby continued to drink until he condition was like your hubby's, but when he was finally hospitalized, they got a good regime going, he quit drinking and warded off "the end" with a liver transplant May 1st. They had him on diuretics to help with the ascites, blood pressure meds for portal hypertention to avoid bleeding varices, laxtulose for the hepatic encephalopthy, and eventually xifaxan to keep the crazies away. Some of our members and spouses have not been so lucky. Once it is Stage 4, the slide downhill is pretty bad and pretty fast. I am surprised he is still able to work at all.

Is there any chance he would qualify for Medicaid in your state? That is how Mike got his medical care covered. Until he qualified for Medicaid, he was self paying and not doing much of that. Most places would let him pay the Medicare reimbursement rate.

Even if he has too much income for Medicaid, there is a chance his bills would qualify under "medically needy" section of Medicaid. They look at your bills each month and pay what you cannot pay depending on your income.

If you look under the SS Disabilty sites you may find his condition qualifies him as Disabled and there can be money there also. AFter 2 years disabled, the person qualifies for Medicare early. That might work also...if his labs are as bad as they probably are!

My Mike qualified, but he had not worked recently so so he didn't get any $$$ until his regular retirement age, which is coming up. Your hubby is likely younger if you have small children at home.

Would you qualify for food stamps or WIC when he stops working? I am not sure of the qualifications.

You should check with the local Social Security office, or apply online if you are handy with your computer.

There is a lot of information about liver disease at the top of this site. And one of the moderators will be along to welcome you shortly. They have a lot of experience with this disease and you will get a lot of support from them and from the other members...some with liver disease and some who are caregivers of loved ones with liver disease. It seems the patients who quit drinking and get on a good regime of medicines, diet and enough hydration do that best. The fact that he quit drinking quite a while ago is a good sign for him.

Last October, they told Mike he wouldn't see Christmas if he kept drinking. His pee was coke color, his eyes yellow, his stools bloody or gray, and he had as much energy as a stuffed animal! But except for a recent allergic reaction to a med, he is doing well. No one can believe he is the same man as a year ago!

Best,

Mama Lama, aka Carol
Posted 9/15/2011 3:19 PM (GMT 0)
Wow, HB,

It's a wonder he is working at all. My husband passed away  just a few weeks a go and had all of the symptoms you describe. Without seeing a Doctor, there's really no way to tell exactly where he is, but it sounds like he needs some medical care, and quick too. Have you taken him to the ER? Sometimes the ER will see them regardless of your ability to pay. They will assess him and if the need is there (which it sounds like it is), most will not turn you away. I think it would be worth a try if you have no other option right now.

It sounds like you have your hands full with 6 kids! We're here for support for you so feel free to ask anything and most of the time someone can help!

Thoughts and prayers for you..................

Posted 9/15/2011 5:33 PM (GMT 0)
Bee , Carol ( Mamalama ) summed things up but might I suggest you take him to a internal medicine doctors office and have some blood work done at the least . Reason being , The doctor will see the results and if they are as bad as you think , The doctors will refer him to a specialist or send him quickly to the E.R . My guess from personal experience would be they will likely prepare orders for the E.R . This will possibly make it less easy for the hospital to ignore him and push him quickly out the door .
I had insurance when I was diagnosed but fought seeing a doctor until cirrhosis basically left me immobile , Of course I wasn't aware I had cirrhosis until the results came back . Anyhow the insurance thing isn't something to stress about at the moment . Signing up for social services can take months for approval so start looking into that A.S.A.P , Establishing that he has a terminal condition needs to be done first with up to date documentation . Laying the ground work to get him the help he needs and will need is first priority . Blood testing shouldn't be real expensive . If need be as mentioned by others just go to E.R if nothing else , Fiddling around and waiting till it almost kills him may be to late for him to recover . He already has sobriety in his corner so that is a big plus down the road .

A. Ziffle
Posted 9/15/2011 6:16 PM (GMT 0)

Hi, Honeybee, and welcome to the forum.  As you can see, this site is full of knowledgeable and caring people.

First of all, it's great that he stopped drinking 3 years ago, so he doesn't have to worry about that.  Being a transplant candidate requires 6 mos. of sobriety.  If the patient is still drinking, that sobriety has to be documented, which makes for a longer wait.  However, the fact that he continued drinking for 10 years following diagnosis of cirrhosis, means that he caused the cirrhosis to worsen.  It could have been stopped in its tracks or slowed down had he quit drinking immediately after diagnosis.

Stage 4 cirrhosis is considered End Stage Liver Disease (ESLD.)  As ML and A. Ziffle said, he needs to get medical care as quickly as possible.  The swollen belly is ascites (fluid in the belly cavity, for which he needs diuretics and a low-sodium diet.)  Yellow eyes is jaundice (from elevated bilirubin level.)  Blood in stool means that he is bleeding internally, possibly from varices (swollen veins that leak or burst) or it could be hemorrhoids.)  If he has varices, they can be banded.  I agree that the best route might be through the ER.  They will likely do a direct admit.  Is there a teaching hospital in your area?  If he can go there, they likely have a program for those with no insurance where he can be seen free or at very low cost.  With a wife and 6 kids, there is likely not much money left over at the end of a pay period.  In addition, I doubt he will be able to continue working in his present condition.

Once he gets seen and has blood work and scans, get copies of the records and apply for SSI or SSD for him (they will evaluate for both) and they will assess him for Medicaid at that time.  As ML mentioned, it takes 2 years from time of application to get early Medicare, so it's best to start the process as soon as possible.  But do wait until he is seen and has some current medical data.

It is possible for him to come back from the brink, but he definitely needs medical intervention, certain meds, etc.  Do NOT wait on this.  Time is running out.  Meanwhile, he needs to eat a healthful diet:  NO beef (too hard for a damaged liver to process and makes the patient feel sicker); lots of fresh or frozen fruits and veggies (if you must use canned, rinse the beans or veggies to eliminate a good deal of the salt.)  Become a label read and choose low-sodium foods.  He should drink purified water and low-fat foods.  No fried foods.

I suggest you read the info in the folder at the top of the page entitled Hepatitis Resources.  It is about liver disease in general and not just viral hepatitis.  It breaks down the stages of liver disease and there is lots of other good info in there.  Also check out the Caregivers thread.  It's a place where you will get support and information from other caregivers and where you can just vent.

I'm glad you found us and hope you will become an active participant in the forum.  You will learn so much here.  If you have any further questions, feel free to ask and someone should have an answer for you.

Hugs,

Connie


Posted 9/15/2011 10:35 PM (GMT 0)
Honeybee,
if your husband is a veteran, he may be able to get help through the VA also. They do base it on income, but it doesn't sound like he will be able to work much longer.

Good luck to you and your family.

Debbie
Posted 9/22/2011 1:35 PM (GMT 0)
Thank You all hor your information. He is in the proscess of getting evaluated for a medical card. He refuses to go to the er because he sais we aew in enough debt. Please heep him in your prayers as his symptoms seem to get worse by rhe day. He is only 45 years old and me and the kids need him and love him. This is very hard on all of us but we will continue to fight the battle.
Posted 9/22/2011 5:44 PM (GMT 0)
Bee , The thought of debt should be set aside . Speak to your creditors , File bankruptcy or any number of options . When I could no longer work the family income got cut by better than half even with social security disability that I applied for and got . I went through each monthly bill cutting cost and manage to save a few hundred with electric , cable , phone and etc. . My diet changed after I was diagnosed so I began looking into pricing along with low sodium foods and generally no junk food , Cut monthly cost there also . It's budgeting and most of us here have become familiar with it ( It just goes along with the territory ) . I sold my gas hog Jeep Wrangler and bought a old 1965 VW Bug , That may not be a good example of saving money though ( I am constantly working on it , On the other hand it doesn't consume alot of gas when I aint driving it either ) .
Most " regulars " here know I'm not politically correct and somewhat strongly opinionated , Having said that . One question : Have you noticed lately that ILLEGAL immigrants are draining the medical and financial system dry , Ever wonder how they can do that without paying one dime of taxes or a hospital bill ? The answer is walk right in the E.R , Fill out the form and park your rear in the seat until you get seen . The Bill ? What Bill ? Fact is they right it off and the Bill gets taken care of ( By some other person who still has a job legally paying taxes ) , Nice huh . I been working on the " books " since I can remember and never claimed a benefit from the guberment until my sickness , The reality is that when you get of age to get the money you put in SS , there wont be any to draw out . If your gonna get health care you better get on the ball A.S.A.P before these programs get cut .
Believe it or not that paragraph was written under restraint . I had a sense of pride in many things prior to my Cirrhosis but after years of seeing what I have seen first hand the pride for our guberment has flew out the window . Get on the gravy train as many others have while it still has wheels .

A. Ziffle

Post Edited By Moderator (hep93) : 9/22/2011 12:45:47 PM (GMT-6)

Posted 9/22/2011 6:59 PM (GMT 0)

Ziffle, I changed your "does" to "doesn't" regarding your car and gas, as I know that's what you meant to type.

Honeybee, what type of "medical card" has hubby applied for?  Medicaid?  Or a clinic card through a hospital?  When I was out of work, I got a Shands card and didn't have to pay a cent for care or medicine (unfortunately, the care wasn't very good or was nonexistent for serious problems.)  It was better than nothing, though, and did save me a lot of money on Rxs.

I agree with Rick, though.  If it's Medicaid he's applied for, it will take awhile to be approved...and he may not be approved.  The regulations vary by state.  He can't afford to wait.  He's a sick man and can crash at any time.  Try to convince him to go to the ER.  Re: Bills.  If he sends them $1 or $2 a month, there is absolutely nothing they can do legally; i.e., they won't turn his acct. over to a collection agency, because HE IS SHOWING INTENT TO PAY!!  They may call, saying they need higher payments.  He should just say he can't do it--he's broke.  I have used this technique a number of times when I didn't have insurance and ended up in the hospital.  One hospital just wrote off my debt, as I'd told them when I was admitted that I didn't have insurance and wouldn't be able to pay the bill.

Some hospitals have charity programs he could apply to.  They will either write off his debt or approve services across the board and not send a bill.  I've done this several years at Mayo.

Your hubby needs medical care.  It's crucial.  So please do not let finances prevent him from getting that care.

Hugs,

Connie

Posted 9/25/2011 10:17 PM (GMT 0)
honeybee.. u surely have ur hands full... I second all mr Ziffle expressed and Connie... take stock in the supports you have available for you and your family... as far as help... utilize church resources... community resources.. your hubby needs to be seen asap if he hopes to live... time is of the essence... u need to be thinking of how to get him in to the ER asap... there are other things you need to be dealing with but most important... get him in... now before it's too late... praying for u and ur family... Sandia
Posted 9/26/2011 3:13 PM (GMT 0)
Honey Bee
My husband was similar in that he didn't want to incur debt for the family, had quit drinking some time before and knew enough about ESLD that there is no cure, short of a transplant (which he didn't feel he could afford...and maybe doesn't want). When he finally called the ER because he was in so much pain, they referred him to their newly hired GP, who turned out to be a godsend. They talked "mano to mano" for 2 hours about cirrohsis, life, treatment, options and depression. Dr. recognized my hubby was depressed and depression had taken away his drive to even get care. Once he was on anti-depressates he could start dealing with medical care.
My hubby was horrified at incurring debt and seeking treatment he felt we couldn't afford. (As exotic animal and elephant trainer, I couldn't find anyone to insure him over the years, so no medical insurance.) His Dr. told him not to worry about paying, that to apply for Medicare, Medicaid Disability and SSI and let each medical facility know we had applied. So each bill I got I responded as Dr. explained. No Dr. or hospital or specialist has asked us to pay when we went in, they all said they would just send bills. I DON"T KNOW IF THIS IS NORMAL. IT DID take some guts on our part to tell them we could not afford to pay, but have applied for SSI, Disability, Medicare and Medicaid and will keep them updated as to the progress.
We are able to manage my hubbys disease pretty well on meds and I suspect from what you wrote, your hubby is also depressed and doesn't see a way to get medical care. It was a scary process for us but without hubby's anti-depressants he would have given up 6 months ago.
I and hubby are thinking of you and hubby and sending best wishes for finding some solutions that are workable.
Angie1953
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