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jacinta (@jacinta)

Primary Sclerosing Cholangitis (PSC)

Transplants | Last Active: Mar 23, 2020 | Replies (89)

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Hi, sandyjr. I would like to reach out across the miles and offer my hand, my ears, and my willingness to walk with you and your daughter.

I know exactly how you feel right now. I was diagnosed with PSC in early 2000's, and i also had the elevated liver enzymes, the endless tests, and procedures to determine my diagnosis. I know your heartbreak and your fear.
For right now, your daughter is doing the right thing by being under the care of a gastroenterologist (GI). He/she will be the one to keep watch on her condition as he initiates routine check-ups. Mine were scheduled with labs and visits every 4 months. When my PSC began to develop to cirrhosis, he referred me to the transplant center in my home state. By knowing that she has this disease, she can begin now to take action to practice healthy living. Healthy eating, physical activity, avoiding any alcohol, asking GI about over the counter medications are some that come immediately to mind. By being proactive in her health care she will be best prepared for whatever lies ahead.
Crohns Disease is common with PSC.
The PSC Page that Colleen shared will give you a view of the depth of research that is happening.

How is your daughter dealing with this diagnosis? How does she feel healthwise?

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Replies to "Hi, sandyjr. I would like to reach out across the miles and offer my hand, my..."

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?