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Posted 2/14/2012 5:47 PM (GMT 0)
This is my first post in this forum and actually at all. I just happened upon this forum by accident but have found it very informative. At this point I'm looking for information that I may use to help my husband. Here is his story.... He has had Hep C geno 1 (not sure on a or b but it's the tough one to treat) for app. 11yrs. When he originally found out he had it he was insured and received treatments that consisted of Interferon and Ribovirin. He did not do well with this treatment and it did not help. It made him very sick and very weary of any other treatments. His health has declined severely over the last two yrs. He is no longer insured as we are small business owners and in this economy do not have the money to pay for insurance. In addition, because he has been deemed terminal, insurance companies have denied us left and right. We applied for government assistance but were denied that as well. So, I am left with trying to help him with alternative medicines that we can afford. I can not completely identify what stage he is in but at our last visit to the GI (Which was pro bono) the doc said she believes he has liver cancer but would need to test to confirm. We of course can not pay for this testing. His heart has been giving him problems as well and he had to begin taking 25mg of Metoprolol ER. His ammonia levels are high as he produces a scent when they are higher than normal and he stays confused often getting frustrated because he can not locate items he had earlier in the day. I've been using milk thistle and licorice to help with the ammonia but am not sure if this is in fact the best alternative. He stays in pain and more often lately has internal swelling making him very uncomfortable. At this point any ideas that anyone in this forum has I'm open to. I see him struggling daily and I just want to help ease the pain and confusion.
Posted 2/14/2012 6:17 PM (GMT 0)
Hi, Sunflower, and welcome to the forum. I have hep C and have had liver cancer twice, so can relate to your husband and his needs.

What was the reason he was denied "government help?" Was this for Medicaid/SSI? Almost everyone is denied the first time, so you need to appeal that decision. If it's been too long, then start the application process again. On the last page, write TERMINAL. If the denial was based on too much income or assets, you will need to take a different route. Is there a teaching hospital near you? Like a "county hospital" that offers free medical care to those who can't pay?

Your husband needs to have an MRI with gadolinium contrast to see whether or not he has liver cancer. Once it is confirmed, depending on the size and location, there are a number of treatments available.

Regarding herbals, I can only tell you that milk thistle is supposedly good for the liver. I asked my hepatologist about it and she said it may not help but wouldn't hurt. I doubt it would help with ammonia, though.

Your husband needs to be under the care of a hepatologist or a GI doc specializing in liver disease. Your husband is going to die if there is no good medical intervention. Sorry to be so blunt, but I've been through this myself. With the last bout of liver cancer, I had to have a transplant. It sounds like your hubby is heading in that direction.

I suggest you read the info in the folder at the top of the page entitled Hepatitis Resources. You might also want to check out the Caregivers thread, where you will get great support from those in your position. And eliminate red meat from your husband's diet. If he takes a multivitamin, it should not have iron in it.

Hugs,
Connie
Posted 2/14/2012 6:52 PM (GMT 0)
Hello Sunflower and welcome.  I am so sorry that your husband has this dreaded disease and has no health insurance. 

 Since you guys are self imployed unless you've paid into Social Security or State disability it's going to be hard getting any assistance.  Social Security has two sides.......one that's done off of your work history.....and the other for low income folks.........So if he didn't pay into it the only other option is low income..... I don't know what limits they are.....but I know that my husband didn't qualify for low income as I was working and made too much money .......We were barely staying afloat with all the medical copayments but that didn't matter to them.  

Again welcome........The hepatitis folder that Connie mentioned has lot's of good information......please read it....

Thoughts and prayers.........

Posted 2/14/2012 10:46 PM (GMT 0)
Thank you all for your feedback. Discouraging but helpful. We applied for Medicaid/SSI 5 times or appealed several different times and have the hospital involved to try and get it pushed through. It's due to income but unfortunately based on past income (2010). Because we are self imployed it's soley based on what is documented with the IRS instead of what it actually is today. We will appeal again once our 2011 taxes are complete. There is no county hospital here that offers medical help to those who can't pay as I have exhausted those avenues. Thank you Connie for being so blunt. Would rather the blunt than beating around the bush only to find out the truth later. At this point we aren't even afloat Pink Grandma so we're doing what we can with what we have. We are fighters so we will just keep looking and pushing for help until we get what he needs. It's hard to watch sometimes and feel so helpless but I'm not giving up just yet.
I actually read all the folders prior to posting but there was no mention of herbal remedies so I figured I'd give it a shot. No harm in going back through them though which is what I'll do now.
Thank you all again, it's very much appreciated!
Posted 2/14/2012 11:14 PM (GMT 0)
Sunflower, I'm so very sorry. You might want to use the Search feature above and type in Herbal. It will bring up any posts about that. However, I believe the only thing that's really been discussed is milk thistle.

You keep pushing to find a way for your hubby to get the necessary treatment and don't give up! Has he also applied for SSD/Medicare? It took me 2 yrs. to get it and I had been self-employed for 6 years at that time. When they finally approved me, I got Medicare right away as the 2-year waiting period had passed. It goes from the time you first apply. This is the disability that is based on work history and money paid into self-employment taxes/SS.

Hugs,
Connie
Posted 2/15/2012 5:38 PM (GMT 0)
Makes me angry to hear this... keep on fightin... would think that your lowered income will help... as Connie said the words Terminal... help... usually... what a mess... Connie aren't there some meds that can be obtained through the drug company?? in this situation... so sorry to hear.... Sandia
Posted 2/15/2012 7:13 PM (GMT 0)
It's frustrating but I'll keep filing. We've filed with Medicaid/SSI and do keep getting denied do to 2010 income. I'm filing next week for 2011 so that will help because it will show our actual income and show we just don't have the funds. We need the help but can't get it because we don't have insurance and don't have the money to pay the high costs of medical care that he needs right now. What I've run into is that no one really cares about him as a patent or his well being. The only thing that matters is what they get out of it which equates to $$. The tests alone would break us. We don't have the money for visits to specialists and got lucky with the GI doing it pro bono for us in November last year. All I can do is keep filing and hope that we get a break so I can get him in for the tests needed for his liver and his heart that is now struggeling.
I can't thank you all enough for your help on here!
Posted 2/15/2012 7:43 PM (GMT 0)
Sunflower, some hospitals have charity funds where they go by the last 6 mos. of bank statements and proof of income. I got this at Mayo for the first 3 yrs. They didn't bill me at all during those years. I am probably going to have to apply again this year, as I think I'm going to have some expenses from the transplant, though Medicare has paid for most of it.

Has your hubby paid enough into SS that he can file for disability based on years he worked and the amount paid into SS? Or has he always been self-employed? You can also try writing to your congressman. I know of people who have been approved for SS after doing this.

There are also such things as fundraisers. You have to go public with it--even through the newspaper, if necessary. If you know someone who has done fundraising or who might have some ideas on how to go about it, this might be another route to take.

Hugs,
Connie
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