End Stage Liver Disease

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daughter in law
New Member


Date Joined May 2009
Total Posts : 5
   Posted 6/3/2009 7:05 PM (GMT -7)   
Hi Everyone!
I've been reading as many posts here as possible. My Mother-in-law is in End Stage Liver Disease. She was diagnosed about 5 1/2 years ago and had been suffering from syptoms for 2 years prior to that. She has undergone all the screenings and scans, etc. She has had the varisces procedure done twice and the parasentesis 6 times now (the last of which was yesterday).
They travelled to Aurora, CO 1 - 1/2 years ago for a consultation and was told she wasn't bad enough to even be put on the list for a donor. Now she is in too bad of shape to be considered for the transplant so we are all finding this very frustrating. Her specialists have suggested she find a local general practitioner as it is too difficult for her to travel the long distances for appointments. We have all been told there is nothing else they can do for her, except make her comfortable.
I've been trying to get copies of her bloodwork for the last five years so we will have the information and access to the progression. It is also important to have the exact diagnosis since her liver disease is hereditary, she has lost an older sister and brother to this disease. 
about a month ago we were sure she was failing; extreme fatigue, hallucinations, no appetite, deep depression...
She ended up in the hospital with a host of problems besides her liver failure her kidneys had almost completely shut down, her blood sugar was dangerously high, as were her potassium levels, and a few days previous to her hospital admission she had broken out with a pimple like sore on her head - which turned out to be Staph infection!!!
Thank God she has received treatment for many of the dragons and is working on slaying them all. We are very diligently cleaning the staph area which grew to about 3"x2" (the dermatologist told her hair will not come back and she will have a scar!). Her faith is very strong as her determination to keep going. We are all very proud of her and are committed to doing whatever it takes to help her.
 
Now, to the biggest frustration we are finding it impossible to find somekind of timeline for each stage she has faced and will be facing. I know each case is different but it would be helpful to have some idea of what to expect. Her brother that died from the disease was diagnosed and died within about 6 months, the sister it was only a couple of years.
Thank you all for sharing your experiences, it is helpful.
 
Daughter-in-law
missydawne

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/3/2009 8:59 PM (GMT -7)   

Hello, daughter in law.  Thank you for starting a new post.  It is necessary to know what your MIL's diagnosis is in order to give you much information.  Is it Aquired Immunohepatitis (AIH?)  I believe that is hereditary.  Or perhaps Hemochromotosis?  Those are the only things I can think of.

Since liver disease is such an individualized disease, it really is impossible to say how long she has left.  I hope that the local practitioner she gets is a hepatologist, or a GI doc at the very least.  A primary care doctor really does not have the knowledge needed to treat liver disease patients.  With the complications that she is having, it seems of optimal importance to have someone who knows how to treat her and to at least keep her as comfortable as possible.  When a doctor thinks she has 6 mos. or less left to live, Hospice can be called in to provide services to the family (such as respite care) and take over the medication needs and palliative care.

It seems that your MIL is a fighter, so she might be around longer than you think.  If you will read the educational threads in the Hepatitis Resources folder at the top of this forum, perhaps you will find some answers.  There are posts on the various stages of liver disease, encephalopathy, etc. 

The members here have a lot of experience with liver disease and are especially supportive.


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


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/3/2009 9:25 PM (GMT -7)   
Hello missydawne and welcome to HealingWell. I am so sorry that your MIL has this disease. A lot of liver disease patients contract MSRA from being in and out of hospitals so much. My husband did. Once he did, they kept him on an antibiotic for the rest of his life, to help control his encephalopathy. It worked wonderful for him along with his lactulose.

You MIL is very lucky to have you for a daughter-in-law. To fight this disease she will need all the support that you and the rest of her family can give her.

Take care......thoughts and prayers.......
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


daughter in law
New Member


Date Joined May 2009
Total Posts : 5
   Posted 6/6/2009 7:18 PM (GMT -7)   
Thank you both for your replies and encouragement. We have not been told the actual diagnosis - that is why I'm finding research so frustrating. I don't think it is hemochromatosis because they have been giving her iron the last several years, but I really don't know. She has had all the specialists caring for her for the last 5 years. In February, they all decided including my MIL that travelling is too hard on her. (We live in rural southwestern Montana.) That is when they told her to chose a GP that she is comfortable with locally. She definitely qualifies for Hospice but she is not ready to accept the inevitable.
My MIL is a fighter and has great faith, we believe she might set some of her own records with this thing.

Her family has basically been left out of the loop for her treatment and such until December. She didn't want to worry us and she is a very private person besides. Since she is no longer working with several of her doctors and one has left the area, we have requested copies of her records but haven't received anything yet. I spoke with her hepatologists office yesterday, the only thing they had in her charts was Iron Deficiency Anemia - no reference to the liver cancer at all.

The last 2 days she has accumulated a lot of fluid (her last draining was Tuesday) but this time it is gathering in the lower abdomen area (below the waist band) and she has two very large dark bruises at the waistband level and undernearth the enlarged area. I'm wondering if we are looking at something new.

I do have a PTL - her Staph infection is healing very well. It is not MERSA so we are thankful for that.

Thanks again for your support!
Daughter In Law

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 6/7/2009 2:14 PM (GMT -7)   
Hi DIL and welcome to HealingWell. I am so sorry about your MIL's declining health. I wanted to address your difficulty in getting the medical records for her. Do you have POA? Whoever has the POA can request ALL her records including her hospital records. If the hospital is local then I'd like to suggest that the POA goes to the hospital medical records dept. and request her records. Make sure that they ask for every hospital record of hers and you want COMPLETE records. That would include all her labs and tests that they have on record. Usually they tell you they will have it ready in 48 hours. Have the POA go there and pick them up rather then mailing them to you. There is a charge for copying the records. Once you get the copy you should look for a few things. #1 would be her admitting diagnosis, #2 look for her History and Physical. There they will list all her medical history which should have at least some description for each diagnosis and when it was diagnosed. That may help you in your search for her illnesses. Also, look for any biopsy reports, CT scans, or MRI's that should have been done at some point. Maybe you will find these tests in one of her medical records from one of her Dr's offices. Generally Dr's office have records copied within a week or so. Good luck.

 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


daughter in law
New Member


Date Joined May 2009
Total Posts : 5
   Posted 6/9/2009 7:36 AM (GMT -7)   
Thank you for your suggestions. Gale is actually still in charge of her personal information. She has signed several releases for the information herself. We are not near the specialists that have been caring for her for over 5 years or we would GO there to hurry up the process. The local GP that has just started caring for her only has "end stage liver disease" on her records. We are seeing him this morning and will be following up on their request for the specialists' medical records with them.

daughter in law
New Member


Date Joined May 2009
Total Posts : 5
   Posted 6/17/2009 5:23 AM (GMT -7)   
confused  My MIL has been hospitalized since Sunday. Her ammonia levels are very high and while we could work to bring those down it will only make her more aware of how sick she is now. The family is following her wishes, as well as her husbands, to only provide Comfort Care. They expect her to be gone in the next day or two. I haven't counted her out with her strong will, heart, lungs and faith Nor have I discounted the possibility God could create a miracle in this situation if it was within His will but without those things we are resigned to the inevitable.  Thank you for your responses, I will always be appreciative.
God Bless
Daughter-in-law

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/17/2009 9:10 AM (GMT -7)   

Thank you for the update, DIL.  My thoughts and prayers are with the entire family at this time.

Hugs,

Connie


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

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