Holdingon, I am sorry you are going through so much with your mom at such a young age. I'm also glad you found us. I must say that you are very mature and knowledgeable. I read every word of your post. Am I to understand that your mom is now in CA with her sister? Or is she still at home with you?
I can tell you that your mom is very sick and likely in End Stage Liver Disease. I think that you were so involved that you didn't see how sick she really was. ESLD can go on for a number of years, but given that your mom has not been followed by a hepatologist and evaluated for a transplant, she is very ill at this time. The ER should have told you that. However, sad to say, when alcohol is the cause of a person's illness, that carries a stigma and most physicians resent having to treat an alcoholic.
Blood tests are not always an indication of how sick a person is. I had liver cancer from hep C (cancer free for nearly 2 years now) and my liver enzymes were never really high, nor was my alpha-fetoprotein (tumor marker.) How a person looks and the symptoms are a more accurate way of telling how sick someone is. Also, CT scans and MRIs with contrast show a lot. Has your mom ever had either one?
My first suggestion would be to get her under the care of a hepatologist, as Amee suggested. If she is in CA now, they have Medi-Cal instead of Medicaid. From my understanding, it's not as good as regular Medicaid. Your mom should have someone apply for SSD/SSI for her. If she qualifies financially, she will get the SSI and Medicaid right away. If not, it takes some time to get SSD (disability benefits based on her work history) and a 2-year wait for Medicare.
Secondly, try to find a hepatologist to take on her care. Primary care docs really do not know much about liver disease and ER docs don't have the knowledge or time to treat her properly. Did she stop drinking in Jan. or is she still drinking? If she is drinking, doctors will be less inclined to treat her as they know whatever they do won't make any difference. She absolutely has to stop drinking. Also, if she is able to get a transplant, she has to be sober for 6 mos., documented by AA or an alcohol counselor they approve of. She may be too sick and too far gone to qualify for transplant now, though.
Again, I am sooo sorry for all that you have been through. Your mom has been lucky to have you there, but it shouldn't be your responsibility to care for her when she is so gravely ill.
You can find a lot of information in the educational posts on the main page, as Amee mentioned.
Please continue to post, as we are here to support you, too. My thoughts and prayers will be with you and your family.
Hi, again! First of all, SSI and SSD are 2 different things. SSD is based on work history. SSI is for those who don't have sufficient work history or who currently have little income but are expected to be ill for at least 12 mos. She MIGHT qualify for SSI temporarily. She may also be able to get Medi-Cal. When one applies for SSD, they automatically screen for SSI benefits also. So she should know about that fairly quickly. SSD, on the other hand, can take years to be approved. However, in your mom's case, I think they will approve her fairly quickly--within about 6 mos. However, she will have to wait for 2 yrs. to receive Medicare. Prior to my receiving Medicare, I went to a teaching hospital, Shands. Teaching hospitals usually have free clinics or sliding scale payment schedules. So if there is one near your aunt's house, this might be a good option for her. Also, money that she once earned but no longer has will not be considered. How she got the disease will not play into eligibility--only how sick she is and if she is too sick to work.
If she does start going to AA meetings, be sure to get the chairperson at each meeting to sign a statement that she attended the meeting. The 6 mos. has to be documented. Your aunt should really find out from the transplant center nearest her what the requirement is. Sometimes alcoholism counseling that they approve will also work. Personally, though, I think AA is the best way for someone to get and stay sober. At least, it's worked for me for nearly 23 continuous years, and thousands of other alcoholics.
The ER doctor may have assumed that you knew your mom is in ESLD. The elevated ammonia levels only happen when the disease has progressed extensively. Of course, your mom's continued use of alcohol, despite her liver disease diagnosis, has caused the rapid progression.
Diet is very important, too, in slowing the progression of disease. Now that your mom is not drinking, perhaps she will start eating better. One thing that is helpful in the beginning of sobriety, when the body is still going through withdrawal, is to have some candy on hand or ice cream. Alcohol has a high sugar content and sweets will help with the withdrawal and to keep her from drinking again. Also, tell your aunt that your mom should have no red meat (hard for the liver to process), but lots of fresh fruits and veggies.
The book that Penny recommended in another thread, Dr. Melissa Palmer's Hepatitis & Liver Disease, is excellent. It covers literally everything. You can pick up a very inexpensive copy through half.com or eBay. Your library might also have it. It should answer the questions you still have.
Now that you have a break, with your aunt and uncle caring for your mom, I hope you will take good care of yourself, get plenty of rest and eat well.
Post Edited (hep93) : 4/27/2009 1:27:39 PM (GMT-6)