Welcome to the forum, Cheryl! I'm glad you found us! I am so sorry that your brother has liver disease. You will find a lot of information and support here. First, take a deep breath and try to relax.
First of all, your brother needs to be followed by a hepatologist. From what you've told us, his primary care physician should refer him to a transplant center. They are often in teaching hospitals, which usually will offer free care (up to a point) if a person has no income, assets, or insurance. Regardess, he should be seeing a hepatologist as soon as possible and worry about the cost later. It is good that he is applying for SSI this week. Tell your husband to write in the "comments" section or tell the caseworker that he has end-stage liver disease. They will confirm this either by letter to his doctor or through his medical records. He has to sign a release form to get the medical records released, either to him or to SS or a transplant center, or to all of them. For each person or organization he wants to have the records, he must sign a separate release form. He can call the hospital and ask to speak to Medical Records. When he is connected to them, he should ask for a release form or forms to be mailed to him. He must sign this/these and send back to the hospital before they will release the records. They usually charge so much per page, too. It would probably be cheaper for him to get one complete copy and then have copies made himself, especially if he or a family member has access to a printer.
To answer your question about albumin, it is a plasma protein and necessary for balancing the body's fluids. The high ammonia level probably led to hepatic encephalopathy, in which the patient is "not himself" and confused, combative, etc.
I suggest that you look in the folder at the top of the forum page, entitled Hepatitis Resources. There you will find a lot of information about liver disease and its progression. You can also search some older posts here for information on cirrhosis, ascites, liver transplant, etc.
Another thing he might want to do while he is still coherent is to make out a Living Will and assign someone as his Health Care Surrogate, to make medical decisions if he is unable to. Since the HIPAA laws went into effect, privacy issues have become really strict. It is a necessity for him to do this while he is still able to function.
Again, welcome. You will find a lot of support here.
Post Edited (hep93) : 11/10/2009 6:24:07 PM (GMT-7)
Cheryl, cirrhosis is scarring of the liver and is irreversible. However, it doesn't necessarily kill a person. I was diagnosed with cirrhosis in May of '07 when the rt. lobe of my liver was removed, due to cancer. They biopsied the left lobe and found cirrhosis. I probably had had it for awhile. However, I am stable. I also have hep C, which undoubtedly caused the cirrhosis. I take no medications for my liver, except diuretics for fluid retention, but do abstain from red meat...which your brother should do, also, as it's the most difficult thing for the liver to digest. I keep my life as stress-free as possible and eat a lot of fresh fruits and veggies. I do get followup with blood work, CT scans, and a visit with my hepatologist every 6 mos. No drinking or drugs that aren't prescribed, of course.
So I really don't feel that the cirrhosis will kill me. It's possible that the cancer can come back--in the left lobe or in a different organ. It's also possible that some unforseen illness or accident will kill me. I just don't think about it. Cirrhosis is NOT necessarily a death sentence. However, in your brother's case, because of his hospitalization and draining, and the suggestion that he be referrred to a transplant center, it is probable that he will need a transplant.
Post Edited (hep93) : 10/20/2009 1:01:54 PM (GMT-6)
Cheryl, you can request specific reports. You don't have to get the entire record for your own use. For instance, you could request all blood work and radiology reports from his scans. That should cut down considerably on the cost. Then let SSI obtain his complete records.
It is great that he hasn't had any alcohol in 5 weeks! Please do be aware, though, that he will need to go to AA or alcohol counseling (whatever the transplant center requires) for 6 mos., and his attendance must be documented. He has to have 6 consecutive months of sobriety prior to being evaluated for transplant.
caw, I know it's frustrating. A lot of the treatment of this disease seems to fall into the "hurry up and wait" category. It's great that he is taking an interest in doing the right thing. You should also warn him against eating red meat.
Thanks for the update! I'm so glad that your brother is doing what he can to contribute to healthful eating. After awhile, you can scan those labels pretty quickly, mostly zeroing in on sodium, fat, protein, and calories. Good to hear you all had a nice Thanksgiving. The family may have had autoimmune hepatitis, which I believe is genetic. If you want something other than liver enzyme testing, ask for a CT scan with contrast and explain why it's needed.
I've never heard of Medicaid taking that long to be approved. Usually, it's a matter of a couple of months at most. However, different states may vary.
Be sure to keep us updated!
On the issue with state funded insurance, you can attempt to force it along by reminding them that he is terminal and needs LIFE SAVING treatments and prescriptions. Also check your local hospitals, private hospitals do not have to treat you but hospitals that recieve state and federal monies have to and offer payment plans or free care for low income. You wont know till you ask.... and ask. If you end out being his medical advocate you will find a forceful demanding yet respectful attitude will get you very far in this. Also there are some financial organizitions that can help you....look on the internet I dont remember all of them but they are there. Sometimes a hospital Social Worker can move the state medical insurance along quicker. Our Social Worker had Doug approved in less than 30 days, they get it expidited and they get the money for the hospital!
Any ideas or suggestions greatly appreciated.
Cheryl, Okay you need to ask them about symptons to be aware of that suggest changes needing immediate medical attention. I dont know what his doses of meds are so it is hard to think of what should be good questions for you to get answers to. Of course his INR, Biliruben and Creatin(SP) levels are a good guide as this shows his blood production and counts, liver function and kidney function. This makes up his meld score, they will probably check potassium as lasix(floursimide) will mess with that. Which is why you will find Dr's use that with Eldactone(spironolactone) to off set that. His sodium level needs to be checked too, that tells alot with kidney function. His sugar levels also, I forgot what they call that, the one done by lab not machine. Poor liver function does mess with sugar levels on some people. Ask if he has access to meet with a dietician for some good diet plans. Might as well ask to meet with a social worker too maybe help with some of the hurdles.
For the sake of accuracy, it's furosemide (generic of Lasix) and Aldactone (spironolactone.) I take both.
Rick, do you mean fasting blood sugar level? Or something else?
The apt. complex I moved to provides a form for paramedics, in which the tenant lists all medications, medical history and surgeries, special health problems, etc. That form goes into a plastic sleeve that they also provide, and is to be hung on the inside of your apt. door. That would also be a handy thing to grab on the way to the ER, even if paramedics aren't involved.
Also, I provided a link itoday in the Hepatitis Resources folder, to an article on How To Baby Your Liver, found on the RealAge site online (Drs. Oz and Roizen.) I think I will start a separate topic on that, too, as they gave some good info. But also do ask for a meeting with a nutritionist regarding diet.
Hey thanks for the spelling corrections lol..... my glasses work great for up c;ose and far away and my laptop is in between so I type in the blind zone and dont know where all the letters are with out looking....lol yeah one of the GETTING OLD issues. Kind of like doing inventory before getting out of bed, got to make sure the joints are working, not a pretty sight when they arent, doug called it the zombie walk.
Sue, I'm quite familiar with the Zombie Walk. LOL!
Rick, sorry, I attributed that to you, instead of Sue. Here's what I was referring to:
"His sodium level needs to be checked too, that tells alot with kidney function. His sugar levels also, I forgot what they call that, the one done by lab not machine."