SIL with end-stage liver disease

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Canyon_Girl
New Member


Date Joined May 2009
Total Posts : 7
   Posted 5/20/2009 7:16 AM (GMT -7)   
Hello everyone.  I'm a newbie here.
 
Although we don't yet have an official diagnosis, there seems no doubt that my sister-in-law has end stage liver disease.  We've been expecting it for a long time.  She was seen by a doctor yesterday, and had blood tests and an ultrasound.   Next week she'll hear the results from her doctor.
 
N has been drinking since she was 14, and is now 46.  She is unmarried, and has only ever worked a few months here and there, none of it within the past 2 decades.  She lives an hour's drive away with a man who barely makes any money and is currently in rehab himself.  She has no health insurance.  She has never had any interest in ceasing to drink.  I will be very sorry to see her go through what is coming, as she is a sweet person when she's not drunk.  Really, I would be sorry to see anyone go through it, from what I've read about it.
 
She has been a burden to her parents all these years.  They are now in their 80's.  Her father has coasted along just not thinking about it and hoping he wouldn't have to deal with it.  Her mother has been very much concerned all these years, and still tries to make N's life seem relatively normal.   Although I dread what's coming for N, I think my biggest concern is for her mother and father, particularly her mother.  I had hoped that her mother wouldn't have to see this.  People have an instinct to pass blame, as in "Her mother caused this by not being tougher with her, so I don't feel sorry for her at all" and "N brought this on herself, so I don't feel sorry for her at all".  But that doesn't stop the fact that these people are now in terrible pain.
 
My husband and I have been reading up on the disease.  My FIL doesn't want to know much about it.  He doesn't want to notice the elephant in the livingroom.  My MIL agonizes over N's state.  She asks me about what I have read.  I am hesitant to tell her of all the dreadful possibilities and likelihoods, as I don't want to add to her pain.  The two of them (MIL and FIL) don't have much between them, after many years of family dysfunction, so she's very alone.   Most of her friends have died, and her only birth family members are in Europe.   It is true that my MIL may have been a big factor in her daughter's alcoholism.  She's alcoholic (episodic) herself, was a pretty bad mother at times, and was an enabler for N.  But at this point, I don't see how that can matter anymore.  She's an old woman whose only daughter is killing herself, and now it seems she's going to have to watch her die a painful death.
 
I guess I'm just looking for any advice in how I can best support them all now.  As N has no health insurance, there may be terrible costs that fall on her family.  She will qualify for Medical Care for the Indigent, but we are unclear on how long that can last and how much treatment she can receive.   Her mother says that if necessary, she will take care of N, but at 81 she is quite feeble herself.   I have spine problems that would prevent me from doing much physical care either.   My husband loves his sister and will also suffer to see her suffer, but he is the main support for our family and I can't see him being able to take care of her.
 
 
 
 
 
 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/20/2009 11:42 AM (GMT -7)   

Hi, Canyongirl, and welcome to the forum!  I'm so sorry that your SIL and her family are having to go through this.  I'm sure you are pretty well informed on what lies ahead.

First of all, she should apply for Medicaid and SSI.  Since her b.f. doesn't make much money, she would likely qualify if she has medical evidence as to how sick she is.  The qualifications vary somewhat from state to state.  In FL, if there are no minor children at home or one isn't blind, etc., then there generally  must be proof of disability from SS. 

As far as her mom is concerned, I would just inform her of what is happening on a "need to know" basis.  Because liver patients are so individualistic in their symptoms and what might happen, there is no sense in filling her with anecdotes or facts about what "could" happen.  Stay with what is.  When your SIL has the results of the tests, you will know more exactly where she stands.
 
It is then up to her parents and you and your husband to decide just how much you will be involved.
 
There is lots of info and support here, so continue to post whenever you like.
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Canyon_Girl
New Member


Date Joined May 2009
Total Posts : 7
   Posted 5/21/2009 6:53 PM (GMT -7)   
Thanks! As it turned out, my social-worker sister was here visiting yesterday, and she too advised applying for SSI and Medicaid (Medi-Cal here in California), on the basis of disability. My husband heard from the doctor. He has the test results and has asked that the entire family come in for N's next appointment. Couldn't tell him anything else for privacy reasons. Today I made an appointment with the SSA, and printed off the form to submit to Medi-Cal. Although she will get Medi-Cal automatically if she qualifies for SSI, we are hoping to get it sooner. I offered to my in-laws that I would deal with the agencies, etc., and they gratefully accepted. They also want me to have medical power of attorney for N, assuming she agrees. I think she will. Mentally, she's on about the level of a 12 year old.

I'm sure you are right that we should stick with need-to-know when it comes to informing her mom about possibilities. No need to bring her agony over things that might not occur.

Thanks again!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/21/2009 10:40 PM (GMT -7)   
You're very welcome!  Let us know what the outcome of the doctor visit is.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


daughter in law
New Member


Date Joined May 2009
Total Posts : 5
   Posted 5/23/2009 8:25 AM (GMT -7)   
Canyon_girl,
I too just joined this forum - this is my first post. I wish you all the best with helping your sister-in-law, parents-in-law, and your husband through this time. My Mother-in-law was diagnosed with hereditary liver disease over 5 years ago. She has suffered at least two years prior to that - itching, diahrea, etc. The doctors are now saying she is in the end stage. Her liver has almost completely quit working and the kidneys are near the point of shutting down. I am honored to be her primary medical care giver (her husband handles all the bill paying, cooking and cleaning). We have a huge support network to rely on, for which we are very thankful. My husband and I have committed to do anything and everything we possibly can to keep her at home and comfortable. It is very hard to watch someone you love suffer so much.
If you will be helping with the care, be prepared for mood swings and dillusionary comments to come out of the blue as well as all the medical issues you will be facing. I know how thankful my MOI is to us caring for her but sometimes the crabbiness can catch us off guard. 
I'll be checking in to see how things are going when I can.
God Bless!
missydawne
 
 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/23/2009 12:00 PM (GMT -7)   

daughter in law, welcome to our forum.  Thank you for a very nice first post.  That "crabbiness" and "delusionary comments" you spoke of could be from high ammonia levels.  Is your MIL on Lactulose?

I would like to ask that you start a new topic to introduce yourself and your situation to all the other members.  It's easy to go unnoticed when you reply to someone else's thread.  (Just click on New Topic instead of Reply.)

Thanks!


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Canyon_Girl
New Member


Date Joined May 2009
Total Posts : 7
   Posted 5/24/2009 6:57 AM (GMT -7)   
Thanks for your comments, Daughter-In-Law. N lives 90 miles away from both us and her parents. For now, she wants to keep it that way. But I'll be seeing her when I drive down to take her to the doctor or when she is hospitalized. There is no way to move her up here, both because at this point she doesn't want to move, and because there is nowhere here she can afford to live. It's a pretty unworkable situation as it now stands, and may have to change later. But you've just made me realize that I might have difficulty getting her to where she needs to be when she's not able to think clearly.

Canyon_Girl
New Member


Date Joined May 2009
Total Posts : 7
   Posted 5/29/2009 11:13 AM (GMT -7)   
N returned to the urgent care doctor she had seen, and received blood test and ultrasound results.  He said he thinks she has cirrhosis and referred her to a gastroenterologist.  She'll be seen on Monday.
 
The ultrasound showed an enlarged liver, a lesion on her pancreas, and thickening of her gall bladder wall, with sludge.
 
From her blood results, I was able to calculate that she would have a MELD score of 7.  The urgent care doctor said he did not know whether or not her liver is salvageable.  I know a 7 is on the low end of MELD scoring, but don't know what it means in terms of whether she has decompensation or not.  She has a BMI of 16.8.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/29/2009 11:44 AM (GMT -7)   

Canyongirl, thanks for the update.  I'm glad that N is being referred to a GI doc, though a hepatologist would have been even better.  A primary care doctor is just not that knowledgeable about liver disease, so it's good that she will get an opinion from someone better able to deal with that.  He will also probably order a CT scan.

Please keep us updated.


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Canyon_Girl
New Member


Date Joined May 2009
Total Posts : 7
   Posted 6/30/2009 4:59 PM (GMT -7)   
Update...
 
N's test results show cirrhosis, a mass in her pancreas (may be only calcification due to chronic pancreatitis), and a solid mass in her kidney.  The CT report recommended biopsies of the two masses.  From what I read on the net, solid masses in the kidney are usually malignant.
 
She's now being seen at the UCSD Liver Center.   The doctor there has only seen her once, and did not say anything about biopsies.  We don't know if this is because the state of her liver is so much more pressing than the other two problems, or because the doctor didn't notice that part of the report.   She'll be seeing him again in a couple of months, and maybe the question can be raised then.  I'm bypassing a very long story about weird family dynamics here, so unable to explain why the question wasn't already asked.
 
 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/30/2009 6:11 PM (GMT -7)   

Bestthief, according to your posts on Healing Well, you seem to advocate LDN for everything from multiple sclerosis to Crohn's disease.  Yet it is not commonly available in the U.S. and is not being used as accepted treatment for liver disease.

My advice would be to stick with reputable doctors and clinics and PROVEN treatments.

CanyonGirl, she may need a nephrologist (kidney specialist) to address the kidney mass.  Since the doctor she saw is at the Liver Center, that is what he is going to deal with--the liver.  She needs to make an appt. with a nephrologist about the kidney mass, and not wait months until she sees this liver doctor again.


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Canyon_Girl
New Member


Date Joined May 2009
Total Posts : 7
   Posted 6/30/2009 7:22 PM (GMT -7)   
I agree that it needs to be dealt with *now*. That's certainly what I would want if it was my child. Unfortunately, the three of them (MIL, FIL, SIL) are all fighting facing reality, each in their own way. I won't even begin to try to describe my MIL, as it would take many pages. Suffice it to say that she is completely obstructive and unrealistic, to the point where she argues that the doctors are wrong in saying that Nina can't drink anymore. She doesn't want us "scaring" N by pushing her to have tests, go to appointments, etc., and is very determined to control the entire process. FIL is a very normal, intelligent, and reasonable person, but has spent a lifetime trying to enjoy life despite being married to MIL. This has required quite a bit of avoidance and denial on his part. Her temper is so ferocious, and she is so ready to go to the mat on even the smallest of issues, he generally tries to avoid triggering it.

I fear that the same family dysfunction that helped N reach this point will make it less likely that she can be saved.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/1/2009 12:23 PM (GMT -7)   
Canyongirl, time to write to Dr. Phil?  smilewinkgrin
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Canyon_Girl
New Member


Date Joined May 2009
Total Posts : 7
   Posted 7/2/2009 6:40 AM (GMT -7)   
THAT would be an interesting experience!
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