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Posted 7/17/2011 4:18 AM (GMT 0)
My beautiful mother has been suffering with PBC for almost 35+ years now. She's 70 and i believe, just recently, she's in ESLD. She's confused, sleeping patterns are reversed, ammonia levels very unpredictable. Ever since i was 12 years i've been her caretaker..im the middle child out of three and it's been TOUGH to say the least. She has PBC and survived some pretty rough situations in the past, but i think this time THIS MONSTER is winning the battle. On In feb 07 2007 she had a shunt tips put into her liver, in which it's done her well, however, the down side it will advance her  disease and that's where im at now. I feel bad b/c im not as emotional as i use to be. I don't want her die, but if it's going to happen i just want it to be painless and . I have no idea the pain that im going to experience...but i know i've done her well! Im finally confident of how much i fought with her and now i just want her to pass on and be at peace. about 2 years ago they had spotted a mass and now last month the mass has enlarged . She's not eligible for a liver transplant..plus, she never wanted one nor for me to discuss it...Im a 40 yr old baby lol..

Thx for letting vent

Bibi

Posted 7/17/2011 4:46 AM (GMT 0)
Bibi, welcome to the forum. I am so sorry that your mom has been dealing with PBC for so long. I know that it must have been really difficult for you, being the caregiver. It sounds like she may have liver cancer. I dealt with it 5 years ago and now have it again, so I'm getting treatment on Mon. and have made it to the transplant list. Is it possible for her to have the mass diagnosed and treated? It may buy her some time.

Be sure to check out the Caregivers thread. You will get a lot of support there.

Hugs,
Connie
Posted 7/17/2011 5:18 AM (GMT 0)
Hey Connie ,
So sorry to hear that ur cancer is back..as for my mom the docs have to do further tests to see what they r dealing with..unfortunetly, her HE symptoms r worse...i just think this is it!..she's been pretty lucky to have lived this long..



Bibi
Posted 7/17/2011 12:58 PM (GMT 0)
Hello Bibi

My sister is also nearing the end of esld. I spoke to her consultant last week as my main concern is the she doesn't suffer pain and he told me that that they would fit her with a morphine pump driver that would keep her out of pain. This would only be administered on my or Phil's instruction. I too like you want my sister to pass peacefully and pain free. I'm in England so perhaps things are different for you, but don't be frightened to tell the docs your feelings.

My sister too has outlived her prognosis because she is tough. My experience is very different to yours but the feelings as a carer of someone you love are the same. My thoughts are with you. Mandy
Posted 7/17/2011 11:51 PM (GMT 0)
Bibi,

I'm impressed mom has never had a transplant with PBC...that is the final treatment for it.  Sorry to hear she has a mass and isn't eligible for one now...nor does she want one.  That's definitely a tough position to be in.  It is ultimately her decision though but choosing to forego treatment means going through ESLD and from what I've learned here, it isn't the best. sad    So I am sorry to hear that but you do seem very positive in knowing that you have helped her through so much already and will help her through her future struggles.

Connie is an excellent example of having been through liver cancer and survived very well!  Maybe you can convince her to see someone regarding treating the mass and help extend her life some.  Have they given her anything to deal with her HE?  Is she on lactulose? 

Pleas event all you want!  Also check out the Caregivers thread....lost of venting there!!

Posted 7/18/2011 12:46 AM (GMT 0)
Thx Mandy ...my thoughts and prayers are with u as well...love is love..whether is ur siblings, friends etc...but it is wonderful that u love ur sister that deep! I wish my sister would love me that way...=) What a delight to have u for a sister ! ..u r both lucky to have eachother!..
Posted 7/18/2011 1:00 AM (GMT 0)
Hi dany,
Well mom had a tips procedure done back in 07 which advanced her disease. Since then she's been on lactulose and xifaxan . They increased her lactulose to 4x a day...however, u get the occasional docs who dont care all that much and release patients before their time. I admitted my mom a few days ago b/c of her erratic behavior and her ammonia levels where 88 yesterday . I asked the doc please donor release her until it goes down like previous doctors have done...he said there's was nothing else to do for her! So I looked at him and said i'll be back...well this morning after a tough nite with my moms erratic behavipur last nite ..i took her straight to the emergency room and she's admitted again on the same room with the same doctor...i told him
..im back lol ..make my mom feel better ! Period!
Posted 7/18/2011 2:14 AM (GMT 0)
I think that the TIPS probably activated or exacerbated her HE...not the disease itself.

Great job in taking her back to be admitted! smilewinkgrin

Hugs,
Connie
Posted 7/18/2011 6:22 PM (GMT 0)
Hey Connie,
Well mama has a new doctor and she also has an UTI infection..so the doctor will be able to treat that..soooo im trying to take it day by day.


Bibi
=0)
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