I agree with Connie, no one here is a doctor. Son, you need to go to the doctor now, not ask the forum to help you self treat! The longer you wait, the more issues you'll have. If my mom had gone in...
I am so sorry about your mom. I lost my mother on June 16th of this year due to complications from liver disease. She was 77. While some people seem to linger on for a long time, others go quickly....
PPO, CMM, HMO - It really does not matter the type of plan you have or the state you live in. What does matter is the plan design. This is what will determine if you need a referral to a specialist....
Not sure what state you are in Susie, but you should be able to find a plan that has the same coverage through the donut hole - but that is going away with Health Care Reform, just not right away....
Went to a graduation open house at my cousins. Her father was my mom's brother who passed from liver cancer 11 years to the day my mom passed. They invited me and dad to join them for dinner next...
Susie - You will want to stay away from any plans that require step therapy and I would recommend that you also get something that covers the "donut hole" as you will have high drug costs now and...
Allie, I am so sorry for your situation - You may want to go to a 12 step support group of some kind. It is very unfortunate when our loved ones continue to harm themselves despite all the warnings....
One of the patients where my mom was in transitional care liked to mix it with diet sprite or 7 up. Said it was a whole lot easier to get down. She also told me it was awful tasting, but my mom took...
Sandi - You can "ramble on" all you want - I appreciate your concern and thoughts! You did everything you could for Mike and like my mom, they were both lucky to have caring strong women by their...
Thanks everyone! My cousin just e-mailed me to let me know mom died 11 years to the day her dad died - my mom's brother who she was closest to growing up and into adulthood. I'd like to think he came...
Mom passed this morning at 8:23 a.m. I was by her side all night and right next to her when she passed on. Thanks for all your support. It went very quickly, but given her illness and how she...
Sandy - Thanks and no I don't think you are being too forward... I appreciate your suggestion....
We got mom home from the hospital. She is now in hospice. Took me all day to make it happen, but it was worth the effort. The staff all were very supportive and got it together so today was the day...
Hey go in and get tested. The initial tests are nothing more than having your blood taken. You can do it when you have other preventive screenings done for your HDL, LDL etc. Which, by the way are...
The provisions around accepting everyone regardless of health status is not kicking in for a while. Health Care Reform is very confusing even for people who work with it every day. The first...
We met with the care team today. There is no hope. Mom has experienced massive brain damage due to the "Toxic Leukoencephalopathy" - she is more or less in a coma. We spent some time with her and we...
Take advantage of the COBRA subsidy put into place by the current administration. This cuts the cost dramatically of COBRA coverage. Keep in mind you and Frank can elect coverage independently - So...
Thanks Connie and Pink Grandma - Just got back from my home group meeting. Thanks goodness for the support of the program and this forum. You guys do great work! Connie - What is the drug site you...
The diagnosis is about as close to a reality as we can get. They want to do one or two more tests to make sure, toxic Leukoncephalopathy is what they are calling it. Not multifocal as it is all over...
Yes, I am sure she did die from it Connie - it is fatal in almost all cases....
Thanks Connie and Lila... I am reading about leukoencephalopathy and not finding anything remotely comforting - it would appear there is not really any treatment. I an wondering how long she has had...
Leukoencephalopathy is the newest possible diagnosis for my mother the doctors are looking at right now. more MRI's, a spinal tap and other tests. This is a very rare disease seen most often in AIDS...
Good news Connie! I am very happy for you. Stay strong, stay in the program and keep up your positive outlook! You are an inspiration to everyone on this site!...
No stoke - Not sure what it is....We'll see. She does have stroke like symptoms, but the MRI does not appear to show a stroke. They are doing an MRA tonight....
So now it is not a stroke... They should have more answers tomorrow, but I am thinking more like Friday or even early next week. It could be a very rare reaction to a medication that causes stroke...
Well, the MRI has been reviewed. No new information as the nurse wants me to talk to the doctor to get the results. However, they did move foward with the lumbar puncture to rule out any other brain...
I went to the bank today and they are filing a report with their fraud area under the heading of "elder financial abuse" on my brother and his wife. This will be investigated and will likely then be...
Sent off my application to be a live liver donor.... Thank goodness gave up alcohol over two years ago, lost 40 pounds (no more BMI over 30 for me) and pass all the other criteria. Now we just need...
She is awake - Very confused, but a huge improvement. Doc's think something else may be wrong other than encephalopathy, but the CT scan does not really show much other than what appears to be very...
Thanks Sue - I bend down and whisper to her every day that I love her and give her a kiss. When she is semi coherent, she tells me she loves me back. I am not ready to give up yet, and so far I don't...
Good for you Pink Grandma! I did find out they can get it in the hospital, it is out patient where we'll need the exception. I'll get 'er done, you can count on that!!!!!...
Thanks! I am wondering if she should be on antibiotic therapy all the time. At 77 with liver failure and less than 6 months to live, why not?...
Back from the hospital. Mom is unable to swallow so this is whey they want the tube. It is not an invasive procedure and does not require consent - However, they did not want to do it unless we...
Good point David - BCBS is going to be one of the better plans to get this drug. Typically, you are going to need what is called a formulary exception - depending on your plan. So, for my mom, she...
They want to put a feeding tube down mom. This goes against her health care directive, but I need to understand if we are just prolonging the dying process, or if there is a chance to have some...
Xifaxin is FDA approved - but they gave it "orphan drug" status for Encephalopathy which means no generic can be made or sold for a longer period of time. This is the ONLY way the cost will ever come...
Thought I would pass this on. This is KathleenW and I do have a couple of other threads on this site, but thought this information should be in its own heading. Xifaxin is a effective antibiotic for...
I would not be too hard on the PCP - Remember she was in a Transitional Care Unit at a nursing home - in this case your regular PCP does not come in but another doc in the care system who is assigned...
I would love to call the police. However, this is not the wish of my dad and my mom would never agree if she was not suffering from Encephalopathy and we could ask her. They have been taking...
Wow - Cool! Great website, thanks for sharing his story....
Got mom into the U of M. So far, they have her a bit more alert and have found an infection which adds fuel to her almost catatonic state. It took me all day yesterday to push the providers to admit...
Yes, missed my regular meeting tonight because I was getting mom checked in, but called an old timer for support. I pushed all day for an admit for her Encephalopathy - Mayo was too far so we went to...
Today we see if mom can be admitted. Dad and I are meeting the doc at around 9:30 this morning. She is too sick to go to Mayo right now for the testing. Her doctor is recommending if we do admit, we...
Thanks Sandi! My parents actually did get all the paperwork - power of attorney, living wills etc. so there is a smooth transfer upon their passing - but, I am afraid for my dad right now... They did...
Thanks Mer - I really don't throw temper tantrums - I am just a pushy woman who is typically well liked 'cause I also help the staff and thank them often... I have had staff members and the TCU...
So, can anyone tell me what a "mega dose" of Lactulose is? I'd like to suggest it for mom. Mom has an ammonia count of 45, but she is out of it. She is presenting as if it is much higher. Can't even...
Connie - Do they use Xifaxan with Lactulose? I am just so puzzled and sick that she gets worse and worse.... They doubled her dose, but I just don't see any results... Any thoughts?...
Mom is way worse today. Dad called me frantic because he could not wake her up to eat lunch. The case manager says she does not see a big change, yet since she is not making progress in therapy they...
Thanks Connie and Pink Grandma! Your support is so valuable to me and I appreciate it even though I have never met you both!...
Well, new hour, new story...now the doctor thinks for sure all the problems are related to the Encephalopathy. While her ammonia levels are on the "high normal", all her symptoms do point to the...