Hi, Helen, and welcome to the forum! I'm glad you found us! If your brother has access to a computer and feels up to it, you might want to let him know about us, too. I am sure we can offer you both support. As to your medical questions, you have to realize we are not doctors. Also, liver disease is such an individual thing, that it is impossible to know what the prognosis or future is for each one. Everyone is different.
That being said, has his fluid intake been restricted due to the ascites? If so, that could be the cause of his dark urine. He doesn't sound end stage enough for his kidneys to be shutting down, although that's a possibility. The doctors would realize that, though. It sounds as though he may not be getting enough water. I am very glad to hear that he will now be able to get his meds. (Until I saw that he got a state subsidy, I was going to tell you that the doctor can write a letter to the pharmaceutical company(ies) letting them know that he needs that medication and cannot afford it. They will then either send coupons to the doctor or patient for your brother to take to the drug store, or send the drugs directly to the doctor to be picked up by the patient.) He needs to be religious in taking his meds. It sometimes takes a long time to get ascites under control. In other instances, patients have to be drained regularly until they get a new liver or die.
I had not heard that immunosuppressive drugs are not good for hep C. In fact, hep C patients who receive liver transplants usually undergo hep C treatment then. Otherwise, the new liver will fail from hep C in time.
Some people do very, very well after transplant and have many years ahead. (My brother-in-law is 15 years post transplant and doing well, though it was touch-and-go for quite awhile after the transplant.) Others, especially if the liver they received is not optimal, will not live long. As I said previously, every case is different.
I suggest you read some of our educational threads for more information and understanding of liver disease.
Hi, Helen. I hope we have been of some help. I assume the doctor is aware of the concentrated urine? If not, he should be informed of this.
My brother-in-law had liver failure due to cirrhosis (which I believe was alcohol induced, but they live thousands of miles from me, and my sister never said when asked.) I know he did not have hep C.
I was diagnosed with hep C in '93 and with liver cancer in '05. Thanks to Mayo, I'm still here. I take it you and your brother are in AZ. I would recommend Mayo in Phoenix for a transplant. I did not have one, but my experience with Mayo Jacksonville has been fantastic, and I know they have the shortest wait time for a liver. They also have a charity fund which could cover all or part of his transplant. Check it out.
Helen, I am glad you have been reading as there is so much info in all the posts.
Don't quote me, but I do think the concentrated urine is probably due to fluid restriction. It should clear up in a couple of days if he is now getting more fluids. If not, then something else is going on. There's a possibility that the color could be from bleeding (kidney stones?)
No, Mayo doesn't take state funds nor Medicaid. They do take Medicare. But that is why I mentioned their charity fund, as I know some serious cases go there and are funded by the charity. One has to apply and be recertified every year.
If your brother has a work history of at least 10 yrs. full time, he can get SSD. SSI is for those who are ill but do not have enough credits to qualify for SSD. SSD allows one to get Medicare. There's a 2-year wait from the time of application. SSI allows for Medicaid and that is immediate. Sometimes you can get Medicare with some Medicaid financing, which is what I have. Medicaid pays for my prescription drug plan monthly premiums and for my Medicare Part B premiums, which are considerable. Part A is for the hospital and Part B is for doctor visits, etc., so it's important to have both. Your brother should apply immediately or you can do it for him. You can even apply online and then they will send paperwork to be completed. It does not sound like he will be working for at least 12 months, which I believe is the criteria for SSI. SSD is permanent disability.
I enjoy being of help here. I feel if my experience and what I have learned can help someone else, then it serves a purpose. And I'm at home most of the time, anyway.
Have a good evening!
Post Edited (hep93) : 2/1/2009 1:24:13 PM (GMT-7)
Just wanted to note that even though I have hep C and cirrhosis, I have never had dark urine. It is usually pale yellow and clear, as I drink a lot of water and other liquids. At times when I wasn't doing so, it would be a darker yellow. Just another example of each person being different. I have never been jaundiced or had pain, even when I had liver cancer...and believe me, I have a very low pain threshold.
Helen, how is your brother doing now?