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Primary Sclerosing Cholangitis (PSC)

Transplants | Last Active: Jun 10 6:35am | Replies (93)

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@sandyjr

My daughter is having difficulty dealing with this life setback. Her personal life is a mess. Her husband is abusive and she would like to leave him but he holds the health insurance, so she is trapped in that relationship. She was a stay at home mom and has not worked outside of the home much. Her husband had his own business which she did all the office work for, but never collected an income, so did not pay into SS. Now we have to think about how she is going to finance her illness, especially when she gets to the point of needing a transplant. She may not qualify for Medicare and I do not think you can get the best of the best on Medicaid. Can anyone suggest ways of getting financial assistanace. She works part time now, but she is ill and with the days of not feeling well and with the time used for medical tests etc, I doubt if any place would hire her full time. So, not only are we dealing with the illness, we have these other issues. I read somewhere that it is suggested that you clip coupons and rely on family help. Get real....how many coupons can you clip when you cannot afford to buy anything. Can anyone tell me any of their own difficult financial situations and how they overcame them?

Also, except for her liver enzymes being erratic, and not all of them, different ones at different times, the only test that diagnosis PSC is the liver biopsy. She has had CT scans, HIDA scan, MRI, ECRP and just went for a CT to see how much damage was done to her in testing with this last Crohn’s attack. Her doctor has mentioned surgery if enough damage was done. This is awful. Has anyone else been diagnose with just the liver biopsy being the deciding factor?

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Replies to "My daughter is having difficulty dealing with this life setback. Her personal life is a mess...."

@sandyjr, Has she considered talking to a lawyer? I saw where another member has suggested this.
I hate to hear that on top of her health problem she is living in a threatening environment. She is going to need support both emotionally and physically if her health begin to fail.
Is her medical team aware of her home and financial situation? Has she spoken to a social worker?