My mother is dying...

[aaronsmom]

and I don't know how to cope. She was recently diagnosed with cirrhosis (in the end stages) and her prognosis is not good. She has 5 years at the most before she'll need a transplant and the odds of her receiving one when that time comes are slim.
My mom is my best friend and I never imagined anything like this would happen. I don't know what to do. :

[purplegirl]

I am so sorry that you and your mom are going through this. I wish you strength and hope. You will find a lot of support from women on this board. Many have been through the loss of a mom and even though she mom is still here, the grieving has started for you.

[mamaverdi]

That is so sad.

Are they able to do a partial liver transplant from a living donor?

[kittywitty]

I second asking about a living donor.

[aaronsmom]

Originally Posted by mamaverdi

That is so sad.

Are they able to do a partial liver transplant from a living donor?

They haven't discussed those options with her yet, although that was the first thing my brother and I thought of. If that would be an option and we one of us were a match we would do it in a heartbeat. Another big problem is that my mother has no insurance but her and my stepfather make "too much money" to qualify for public aid. As a result of this the hospital and doctors have been treating her like crap and a lot of the specialists she needs refuse to get involved "because she's poor" (those are the actual words of my mom's GP, who is the only doctor nice to her and working his butt off to find someone to help her).
She has really bad ascites (fluid build up in the abdomen) with spontaneous bacterial peritonitis (infection of the ascitic fluid), both of which are symptoms of the advanced stage of cirrhosis. Currently, the doctors are focused on clearing up the SBP and reducing her ascites and edema. She is on a very restricted diet (salt-free, moderate protein, etc), she can't have acetimenophen and many other medications and obviously she has to abstain from alcohol completely for the rest of her life.
She is in a lot of pain from the infection and for awhile she could hardly walk. It is starting to get better, though. The kids and I have been with her everyday. I go over to help her out and her grandkids lift her spirits.
I just feel so horrible. On the 16th my mother and I experienced such a wonderful event together (she caught my DD at my UC) and 2 days afterward her health started to rapidly decline. Up until that day she had been nearly asymptomatic (other than easily bruising, which she attributed to anemia).
According to her doctor, she's had cirrhosis for nearly ten years and just suddenly started showing symptoms. The day my DD was born my mom was perfectly fine!

[mamaverdi]

Okay, there are ways to qualify for insurance/aid. Is she in Illinois too? It is difficult to start researching in the middle of illness, but you can be a great help to her in this way.

What kind of work does your step dad do? Does she still work?

[aaronsmom]

Originally Posted by mamaverdi

Okay, there are ways to qualify for insurance/aid. Is she in Illinois too? It is difficult to start researching in the middle of illness, but you can be a great help to her in this way.

What kind of work does your step dad do? Does she still work?

Yes, she's in Illinois, too.
My stepdad is a foreman for a construction company that doesn't offer insurance and since he isn't union they aren't required to. He only makes about 35k a year to support my mom (who is a SAHM) and my 17 and 11 year old brothers. My brothers have KidCare insurance but my parents are a tax bracket too high for a family of four to qualify for medicaid (they've applied several times).

[mamaverdi]

It's horrendous the insurance situation in this country.

Sick people can get medicaid though. For one, many people who get transplants get medicaid afaik.

Also, there is a program called "money follows the person." I'm not exactly sure how it works or if it is only for kids. But you need someone who knows how to get aid in your state.

She may qualify for disability or SSI with this diagnosis. This can help her get insurance.

Does your stepdad have thoughts about joining a union? Looking for a insurance that way?

[kittywitty]

That is terrible.

I hope she can get some insurance soon and finds a match. Sending her lots of insurance and liver healing vibes.

[YummyYarnAddict]

Originally Posted by aaronsmom

Yes, she's in Illinois, too.
My stepdad is a foreman for a construction company that doesn't offer insurance and since he isn't union they aren't required to. He only makes about 35k a year to support my mom (who is a SAHM) and my 17 and 11 year old brothers. My brothers have KidCare insurance but my parents are a tax bracket too high for a family of four to qualify for medicaid (they've applied several times).

I'm so very sorry about your mom's illness and your family's struggles.

In IL, there's a program for the uninsurable called ICHIP -- Illinois Comprehensive Insurance Program. It's for people who do not have insurance through their jobs and who won't qualify for a "traditional" plan like BC/BS on their own due to pre-existing illness. I would look into this. Let me see if I can find the link real quick... http://www.chip.state.il.us/

The other thing I would do as a PP mentioned is to apply for SSDI. She should most definitely apply for disability and, in fact, can start the application process online here: http://www.ssa.gov/applyfordisability/. The application process can take a couple of months or a couple of years, so it's very important to be very accurate and not be deterred when they ask you to submit answers to the same questions over and over again. Just do it in a timely fashion.

If you want more info, feel free to PM me.

Very best to you and yours.

[mamaverdi]

I knew someone would know!!! Also, hiring a lawyer to help you w/SSI may be a much faster way to get it approved.

[YummyYarnAddict]

Originally Posted by mamaverdi

I knew someone would know!!! Also, hiring a lawyer to help you w/SSI may be a much faster way to get it approved.

Please don't hire an atty. They take a huge cut of what you're due for filling out paperwork you're capable of completing yourself. People hire attorneys out of desperation when it's often a matter of carefully reviewing paperwork that's been submitted incompletely. The DQB (Disability Qualification Bureau) at SSA can tell you what's missing so that you can submit that and save yourself the trouble of hiring an attorney. 9.9 times out of 10 it's a total waste of money. The attorneys prey on the desperate and applicants are weary of answering redundant questions but that's just part of the process. Attorneys don't have a secret in, they just figure out what's missing and submit it same as the applicant can.

[mamaverdi]

I realize SSI is a federal system, but it's not the same everywhere. In TX it can be very very very very very difficult to qualify. I don't know if they make things harder down here or what. But really. Very.

[YummyYarnAddict]

Originally Posted by mamaverdi

I realize SSI is a federal system, but it's not the same everywhere. In TX it can be very very very very very difficult to qualify. I don't know if they make things harder down here or what. But really. Very.

I don't want to hijack the OP's thread, but the process is very difficult throughout the country. It can take anywhere from one month to two years (and sometimes more) to get a disability application processed. It doesn't matter what state you're in. I've done volunteer work to help people do the paperwork to get their applications through and I have a few atty friends who also know the process (in addition to having an aunt who works for the DQB at SSA). Attorneys really aren't doing anything magical, trust me. I've seen what they do and have done the exact same thing myself and I'm no atty, but they make lots of money because the process IS so hard. They do take the burden off of people who are just tired of going through the motions themselves, but that's where you need an advocate, not an atty.

Out of respect for the OP, that's all I'll say on the issue here.

[KJoslyn78]

to the op i am sorry you are going through this.

Can i ask why your mom has cirrhosis? Do you know her MELD score? (this is apparently an important number to know - as i learned last summer. My mother died from septesis, due to cirrhosis, from alcoholism).

now - i asked why she has cirrhosis, only cause since my mother was an alcoholic - and was only 18 months cancer free (uterien cancer) - she was unable to be palced on the liver transplant list. Her ascities was terrible (she was, litterly, twice her normal size), and originally was orange, but they were able to tone that down, so that only her eyes were really yellow (skin - was hard to tell - but still a little)

anyways.. i knwo there are other reasons for cirrhosis too... and how high your mom's MELD score is - would determine if a partical transplant is an option. the top end of MELD is a 40 (which is pretty much those dying have), and the transplant coordinator told me that partical liver transplant - the score is in the 20-25 range. Just a thought to keep in mind

also - you should look into seeing if you mom qualifies for medicaid or medicare at this point... and since she is in dire need of help - the hospital can't turn her away... even while you are working on getting coverage (my mom's medicaid was approval postmortem)

good luck - i'll be praying/thinking good thought for your family

[laoxinat]

Be present with her in every moment you are together .

[gumby74]

I just needed to post

[Canadianmommax3]

[aaronsmom]

Originally Posted by KJoslyn78

to the op i am sorry you are going through this.

Can i ask why your mom has cirrhosis? Do you know her MELD score? (this is apparently an important number to know - as i learned last summer. My mother died from septesis, due to cirrhosis, from alcoholism).

now - i asked why she has cirrhosis, only cause since my mother was an alcoholic - and was only 18 months cancer free (uterien cancer) - she was unable to be palced on the liver transplant list. Her ascities was terrible (she was, litterly, twice her normal size), and originally was orange, but they were able to tone that down, so that only her eyes were really yellow (skin - was hard to tell - but still a little)

anyways.. i knwo there are other reasons for cirrhosis too... and how high your mom's MELD score is - would determine if a partical transplant is an option. the top end of MELD is a 40 (which is pretty much those dying have), and the transplant coordinator told me that partical liver transplant - the score is in the 20-25 range. Just a thought to keep in mind

also - you should look into seeing if you mom qualifies for medicaid or medicare at this point... and since she is in dire need of help - the hospital can't turn her away... even while you are working on getting coverage (my mom's medicaid was approval postmortem)

good luck - i'll be praying/thinking good thought for your family

nak
i have no idea what her meld score is but she has cirrhosis from a combination of hep c and binge drinking.

thanks for those links, yummy!