harp (if I may call you that for short), I am sorry that your brother and his family are dealing with liver disease, but I'm glad you are here. You will get a lot of information and support here. First of all, I'm really glad to hear that he stopped drinking immediately upon diagnosis of cirrhosis. However, it is true that he will not even be evaluated for a liver transplant until he has 6 months of documented attendance at AA or alcohol counseling approved by the transplant center. Is he seeing a hepatologist? He needs to be. Then let the hepatologist make a referral to the closest transplant center. Meanwhile, he needs to go ahead and apply for SSI/SSD. He will be evaluated for both. SSI is for people who do not have enough work history, or haven't paid enough into SS to be eligible for benefits through SSD. If he qualifies for SSI, he would automatically get Medicaid. If he qualifies for SSD, he would get Medicare...but there is a 2-year wait from the time he first applies. So he needs to get on this right away. If he qualifies for SSD, he may be able to get Medicaid in the interim if his income is low enough. Since he has had to give up his business, he may qualify financially. These are things he can only find out by applying. He has nothing to lose and everything to gain. It's best for him to gather his medical records for SS and not wait for them to do it. Also, almost everyone gets turned down the first time they apply. At that point, he should appeal...but probably also get a lawyer. The lawyer will not require any payment unless the case is won...and then it will be 25% of your brother's back pay, automatically deducted by SS.
He may need a different diuretic and should ask about this. Regarding the TIPS, we have a member here who had it done with very good results. Rick, are you out there?? Also, a spouse's husband had it done, also with good results. I'm not familiar with the peritonovenus shunt.
If your brother is experiencing bouts of encephalopathy, he should ask the doctor about Lactulose. He may need to be on it. Someone should go with him to every doctor's visit to make sure that the right questions are asked and that he understands what is said.
I'm not familiar with soy protein as it relates to cirrhosis patients. Ensure is good, though, if he can get it down. Slim Fast tastes a little better than Ensure and the only difference is that SF has fewer calories. (And I never lost any weight on it. In fact, it has a high fiber content which gives a feeling of fullness.)
It's amazing how people think beer is not harmful. It has the same amount of alcohol in a 12-oz. can as in a shot of liquor. It's just more dilute. It's good that he is on potassium and a vitamin-mineral supplement.
I also think it would be best to work out some sort of rotating visits from the siblings. This would be more helpful to your brother and to your parents.
I believe your other questions should be answered by a hepatologist. I'm sure you will also get some input from people who have "been there, done that."
Again, welcome, and don't give up hope.
Post Edited (hep93) : 9/19/2009 9:06:03 PM (GMT-6)
SSI and SSD are different. Reread what I said about them in the above post. I explained the difference. But again: SSI is for people who don't have enough money put into regular Social Security Disability. Due to your brother's age, and the fact that he was self-employed, this is understandable. Therefore, he needs to apply for SSI (Supplemental Security Income.) If approved, he would receive a set amount each month (around $600), whereas with SSD it is based on income over the years worked and would be the same amount that one would receive at full retirement (I got this at age 62, as I had worked since age 16.) Medicaid rules can vary from state to state, but generally they will only give Medicaid to someone who has been found to be disabled by SS or who has a child under the age of 18 at home. If he is approved for SSI, he will automatically receive Medicaid. Therefore, I would have him apply for SSI first. Generally, when one applies for SSD, they automatically also see if the person qualifies for SSI. Find out if this was done first, before sending your parents to the SS or Medicaid office. Just have them call SS and state that he didn't qualify for SSD as he didn't have enough money in it, but ask if he has been considered for SSI and Medicaid. So much can be done over the phone or over the Internet. He doesn't need to get a lawyer until SSI turns him down.
As for Hospice, they never turn down anybody due to inability to pay. They provide services to all who have 6 mos. or less to live. The doctor would have to refer him. Once he's accepted as a hospice patient, no treatment can be given...just pain meds. Hospice serves patients and their families in the home, but some larger cities also have resident sites for people without family nearby. Look in the phone book or the Internet for hospice services near your brother. I think it is probably too soon at this point to be applying for this, though.
I hope this info has been of help to you.
Rick, thanks for posting to Harp with your experience with the TIPS! I am coming along in the healing process following surgery, but impatient to progress to a cane and to walk more. I will see my ortho surgeon on Wed. and hope to be promoted to a cane at that time. I seem to be sleeping more than usual, but I guess my body needs it. Thanks for asking. Take care!
Harp, I will say that your brother needs to see a hepatologist. A GI doc just isn't that knowledgeable about severe liver disease. Also, there is a new member here whose husband is having AA people come to the house as he is too weak to attend meetings. As long as it is documented with some kind of note, that should be okay. AA members do make 12-step calls, so if they can find a few people to volunteer to have a home meeting with him a couple of times a week, that might be acceptable.
I'll leave Rick to answer your other questions.
Connie,i hpoe you get promoted to a cane,and if you lived by me I'd take you for a walk and it would give me the excuse to walk. Don't get me wrong I'm on my feet all day but a nice stroll would probably do the my body an mind good.
Good luck and take care,
DeeDee, thanks for your kind words. The day I take a leisurely walk just to be walking, I'll really be doing something. From past experience, that takes me nearly a year. At first, I will be walking around the apt., and then at the stores and doctor appts., just things that are necessary. Building stamina is the hardest part.
As Rick mentioned, if there is a local GI who will work with a hepatologist or the transplant center, that would be fine. It just seldom works out that way. Your brother or a family member needs to be very proactive about his care, gathering medical records and making sure that information is transmitted properly between the parties involved. Don't just assume that the doctors will handle it.
Mer, I had to go back to Harp's original post, but she stated that her brother was diagnosed with cirrhosis about 2 1/2 months ago and stopped drinking that day. So it's not enough sobriety time for a transplant team to not require AA or counseling. I had been sober for 7 years in AA when diagnosed with hep C in '93 and now have 23 years of sobriety, so of course it has never been an issue in my case.
Harp, I just wanted to say that I hope your daughter's lymphoma is put into remission quickly. You certainly have a lot to deal with! You must be a very strong person. I know you are a good sister to be researching info and trying to help with your brother at a distance, which isn't easy. I know that Medicare kicks in 2 years from the time one first applied, if approved, and if the recipient is at least 65. Medicaid might possibly pay some things retroactively...just not sure about that. By all means, find out about charity help at the medical facility. With Mayo, I had to fill out forms and submit proof of income, as well as 6 months of bank statements. It takes them a few months to approve or disapprove. Unfortunately, they did not approve me for '09, although my circumstances have not changed. I think they decided 3 years of subsidy was enough. But I'll try again in Jan.
I hope you will get a get a better sense of what is going on when you visit your parents and brother this weekend.
Harp! I am impressed with all that you and your sister are doing on your brother's behalf. It's true that the squeeky wheel gets the attention, so continue to be very proactive in helping your brother.
Glad you got there okay, Harp. I think the attorney gave you good advice. Does your brother live alone with no income? If so, you could also apply for food stamps for him online. Google his state and food stamps to get an online address. Even if he lives with someone, if the income is low, he may be able to get something. I'm a firm believer in applying for anything one might be entitled to when ill with a life threatening or chronic illness.
I'm sure that Rick will answer your post as soon as he sees it.
Rick, yes, correct word, spelled stent.