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JrzeGirl
New Member


Date Joined Sep 2010
Total Posts : 3
   Posted 9/3/2010 12:15 PM (GMT -7)   
My mom was diagnosed back in March of this year with cirrhosis, which was caused by the long term use (20 yrs or so) of Methotrexate.  She has been living with psoriatic arthritis since her mid 40's.  She is now 64, completely bed-ridden, incontinent and is barely eating.  Most times when she does eat, she ends up choking or throwing everything up.  We have to crush her pills and put them in apple sauce.  She has ascites and has to be tapped on a regular basis.  Is on lasix to help with the fluid.  She has also been suffering with terrible bed sores because she cant move, diarrhea (not on lactulose ???) she looks like a frail 90 yr.. old woman.  My father and I have been the main caregivers....and its been draining.  I work a full time job and am married, and he is so burnt out...we looked into so many options....nursing homes, short-term facilities, visiting nurses.  We finally decided on a live-in companion.  She has been there for a week.  It has been very helpful for dad and I, but my mother is not happy.  I go to visit her every day and when I go to leave, she cries and begs me to stay.  I just don't know what to do.  I have beat myself up for her developing bed sores, for not spending more time, for so much....I have also tried to get hospice in to help with some of her care and her docs won't even write a script for a home evaluation. I guess I am writing to just vent...sorry.. :)    I also wanted to find out if the choking and throwing up goes along with this disease?  Her blood work has come back fine..at lease that's what the dr. said.  I can not get a straight answer from anyone.  Her gastro dr. told me that she is definately not a canidate for a liver transplant and that we just have to hope for the best.  That people with cirrhosis can live 20 yrs.... I just wish I knew what more to expect?  Is she end stage?  Does she have to have encephalopathy to be end-stage?  I have been searching thru so many forums for the answers and each person's illness is so personal to that one person.  Thanx for listening...

DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 839
   Posted 9/3/2010 12:35 PM (GMT -7)   

Jrzegirl,

So sorry to hear that you and your parents are dealing with this.  Why did they say your mom wasn't a candidate for transplant?  Is she seeing a hepatologist?  GI docs are good but hepatologists are more specialized in diseases of the liver.

We have a lot of caregivers on this forum so I'm sure you'll have responses from them soon.  Please feel free to vent anytime...everyone is here to listen. 


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/3/2010 1:10 PM (GMT -7)   
Hello Jrzegirl and welcome to HealingWell.
 
Talk with your father,  he may need to be very assertive with her doctors.  If he is not the type or he can't for any reason, maybe it's time to talk with them both for you to be her medical advocate.  To get power of attorney for her medical needs. 
 
Why won't they write a script for a hospice eval.   Is it because  he feels she has more than a year left?   I would demand answers........Demand a referral to a Hepatologist.   You  need an explaination about your mom's condition  and what they feel her prognosis is.......GI docs are not as knowledgeable about liver disease as Hepatologists. 
 
With her being bedridden and not being able to keep down much........doesn't sound too good to me.
 
Throwing up comes with this disease if she is taking Lactulose.  It's a nasty med that all patients dread taking but is medically necessary  once her ammonia levels start rising.  My husband didn't starting throwing up until he start taking it.  I don't remember him ever having an issue with choking.
 
Hang in there........we are here for you.   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.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/3/2010 3:08 PM (GMT -7)   

Jrzegirl, welcome to the forum.  I'm not very impressed with her doctors, from what you've stated.  I definitely thinks she needs to be seen by a hepatologist.  You need some solid answers.  Do you think that the companion you got for your mom is able to take care of her medically?  Give her meds, turn her frequently, etc.?  Did you look into home health nurses?  I also would insist on a Hospice referral.

Your mom sounds like a very sick lady.  She needs to get the proper medical care.

Hugs,

Connie


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

JrzeGirl
New Member


Date Joined Sep 2010
Total Posts : 3
   Posted 9/3/2010 4:35 PM (GMT -7)   
Thanks for all your replies. My father is just not able to articulate well. He gets very intimidated and just can't do it, which is why I am the one that has had to really step up. I am not pleased at all with her docs, but am hesitant to "start all over" with new ones....I am very torn about that. I have spoken with them all (her gastro, primary and rheumy) on several occasions thru phone calls and time she has been hospitalized and they all can't seem to give me any direction. The live-in is a home health care aide, she is certified so she is able to help care for her wounds, give her meds and move her around. She really has been wonderful. My mother is being bathed daily and her bandges for her sores are changed several times a day, which is what she needed. Forgot to add that my mom is also a diabetic with insulin daily...I am asuming that is why she is not a canidate for liver transplant????

She did have a endoscope done in the hospital a couple months back, I guess they were looking for varices?? Never told the family why even though we inquired several times..they said at that time everything looked fine. She is not taking lactolose, so I really don't know what the choking and throwing up can be. I do worry that she is putting extra pressure on those veins..I have been in daily contact with a hospice agency and the contact has personally gone to the dr. offices about getting a referral and have been told to speak with the gastro...I just don't know what else to do.....

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/3/2010 6:31 PM (GMT -7)   
I would work on getting a Medical Power of Attorney or Medical Advocacy. This will give you the ability to get info from hospital records, her doctors, etc.

I'm glad to hear that she has someone good caring for her at home. That will be a big help to everyone.

Your dad needs to understand that doctors are not Gods. They make mistakes. They are working for your mom and the family has the right to ask questions and get answers. It's possible that she is not a transplant candidate because of the diabetes.

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

worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted 9/4/2010 8:16 AM (GMT -7)   
hello, sorry about your mom but i reccomend to a hepatoligist. get medical power of attorney and get all her medical records. i would insist on going and asking questions. my moms doctor didnt seem to care until i stepped in the picture and then he stepped up. this place is a wonderful site
The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are
 
"No one really dies because they have loved. Because they love they stay in the hearts of the people they have touched so in that their memory lives on." Ghost whisperer-i know corny but this touched me deep down and i see so much truth in it.
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