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03/02/2012 01:49 PM

Alcoholic & Primary Billary Cirrhosis(page 2)

krishemp
 
Posts: 201
Member

also any thoughts on life insurance? she has none, I know there will be the 2 yr clause if anything were to happen...just would like to have something for some final expenses.

Thanks.

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03/02/2012 03:55 PM
mikealpha1
mikealpha1  
Posts: 2286
Group Leader

See my pm to you.

03/02/2012 08:49 PM
ruth8890
ruth8890  
Posts: 1181
Senior Member

Dear Krishemp - I am so sorry to hear all that you AND your mom are going through. Please stay stong!

I believe Salix Pharmaceuticals makes Xifaxan (Brand for rimaxifin(sp?) and will provide it FREE if she has no insurance. Google Salix Pharmaceuticals and call them about it.

With Medicare it was $300 a month. Salix told me it often goes for $1500 a month. Then I added BRAVO Classic Plus Advantage plan to my Medicare (although they may have a different plan for her since she doesn't yet have Medicare - not sure - Member Services is 800-291-0396. Now I get it for $40 a month! Also - don't give up on Medicaid. Go in person and explain the situation. They often have programs that it's hard to find out about.

Also - check with your state to see if they have a prescription assistance program. I'm in Delaware and I qualified (I'm on disability...not for Cirrhosis...reasons prior to that diagnosis) and if my other insurances don't cover a drug, or only cover a portion of an expensive Rx, they step in. Ours is called DPAP - "Delaware Prescription Assistance Program"

Good Luck and keep us posted. Hugs, Ru


03/02/2012 08:52 PM
ruth8890
ruth8890  
Posts: 1181
Senior Member

Hi again Krishemp - Ru here again...I'm also looking into Life Insurance - didn't know about the 2 year clause....may I ask who you contacted so I have some place to start? I sent away for AARP info as I'm 50...still tell everyone I'm 49 because that's when I stopped having birthdays Wink Thank you!! Ru

03/02/2012 10:11 PM
krishemp
 
Posts: 201
Member

@ruth8890 Thanks so much for the info, I am going through everything I can find to get some sort of handle on all of this. I had tried to get her straighted out quite a while back, but with the HE she is well enough to be very difficult...and sick enough to make a big mess of things.

Thanks so much I really appreciate this group, it is so hard for others to understand these situations.


03/03/2012 11:09 AM
sadlystillsane
sadlystillsane  
Posts: 942
Member

Yes ANA is anti nuclear antibodies, sorry I should stop speaking in acronyms...not helpful at all!!

It sounds like they are on track then if she has positvie AMA....sometimes ANA is negative as well. I'm glad the biopsy will help confirm the diagnosis. Of course since PBC is autoimmune and genetic it is possible that is what she started with and the alcohol has made it worse, more rapid progression.

Keep us in the loop, thinking of you and your mom!

Marg


03/04/2012 03:08 PM
krishemp
 
Posts: 201
Member

Thanks everyone for the information. I am working on getting our mortgage payment reduced, once I can get that through, then I might have enough to get my mom some pre existing condition insurance. I don't know how much the biopsy will cost, but it is unlikely that I will be able to afford it until the mortgage is reduced.

On another note. What is the deal with bad balance and cirrhosis. Is it due to ammonia levels or brain damage from high ammonia levels or what? I have never gotten a satisfactory answer to this, my mom's balance is terrible, she needs to use a walker and I was even able to get her a spiffy blue one with a seat and hand brakes, she hates it of course and I have to make her use it, even though she can't get around without holding onto the walls. She also complains of dizziness...thoughts?


03/04/2012 08:28 PM
dmanflan
dmanflan  
Posts: 1735
Group Leader
I'm an Advocate

Hey krishemp!

You got me thinking about the loss of balance that cirrhosis patients feel often accompanied by other symptoms, particularly hepatic encephalopathy. I had major problems with HE that had me in a coma for a period of time and totally confused for many months. (Most of my bad HE experience was due to doctors that did not really know how to treat liver disease.) I ended up with months in rehabilitation just learning to walk again. I went from wheel chair to a walker to a cane, but never had confidence in my balance, which I attributed at the time to my diabetes and blood pressure. My BP was all over the boards but mostly on the low side hovering around 105/60. I still have some issues with vertigo caused by a drop in BP when I've been sitting for a while and then get up and start moving fairly quickly. I stopped using the cane about 3 months after my surgery.

I decided to do some research (surprise!) on vertigo as it seems the most likely cause of my balance issues. My diabetes may also have played a role as I had extreme issues with both hypo (low) and hyper (high) glycemia, in other words my blood sugars were not anywhere close to being in control. But my diabetes is a separate story. Let's start with a definition of “vertigo” from MedicineNet.com:Vertigo is an abnormal sensation that is described by the person as a feeling they are spinning or that the world is spinning around them.While the inner ear is usually responsible for our balance, it is not always to blame when things start spinning around and we lose our balance.

A little more clarification from MedicineNet.com:

Our orientation in space and, therefore, our balance or equilibrium, is primarily measured by three sensory systems:

  1. The eye (visual) system
  2. The balance (vestibular) system of the inner ear
  3. The general sensory system including motion, pressure, and position (proprioception) sensors in joints, muscles, and skin.
These three systems continuously feed information to the brainstem and brain about our position in space relative to gravity and the world. The brainstem connects the brain to the spinal cord. The brain, in turn, processes these data and uses the information to make adjustments of our head, body, joints and eyes. When all three sensory systems and the brain are properly functioning, the final result is a healthy balance system.

So what is it about cirrhosis that causes these issues? In my own opinion, and remember I have no medical training what so ever, is that HE is the major culprit but that blood pressure and diabetes, which many of us also experience, are very important accomplices. HE affects everyone a little bit differently but most sufferers experience disorientation, which impacts how our nervous systems send signals to our brains.

Dennis

Post edited by: dmanflan, at: 03/04/2012 08:30 PM


03/04/2012 08:45 PM
krishemp
 
Posts: 201
Member

constipation on lactulose??? how is this possible, she is on it 3 times a day and has only had 1 bm since last thursday? should I increase dosage? Call the dr.? Suggestions?

03/05/2012 04:07 AM
dmanflan
dmanflan  
Posts: 1735
Group Leader
I'm an Advocate

Call the doctor! If you have your doc's permission, try upping the dose a little. Check if your doctor can recommend an OTC stool softener. Is there anything different in her diet?
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