i’ve been laying low, been out of commission, paralyzed with fear for a month or so. thanks to all who hung in there with us and for the rest i have three letters-PSC
my son was jaundice about 6 weeks ago and one of the benefits of having a mom who’s not just a nurse but a nurse who has worked in liver transplants for over 10 years is that she knows the signs and she has contacts.
with lightening speed he was admitted and worked up and in hindsight, discharged with a premature diagnosis of PSC based on the results of an MRCP which showed the dreaded “beading”
to say we were all turned upside down is the understatement of the century-we didn’t hurry the confirmatory ERCP because it seemed easier to live with the hope he would fall into the 20% of patients incorrectly diagnosed-the maybe was better than the certainty.
he had the ERCP yesterday and to my joyous amazement it showed no scarring or signs of PSC. the only explanation was that maybe he had some sludge? hey i’ll take that…heck they can take his gall bladder out because the alternative-even the thought of my son having this disease was just too scary.
i have to say that although PSC is considered a “rare” disease because of my work with liver transplants i have seen several cases-all post transplant. i continue to work with the transplant unit with infection control and spend many hours aweek reading the complicated course of their illnesses. i have a new found respect for these patients and their families.