This is difficult for me to write about let alone talk about. My son was diagnosed with UC and PSC in March. He’s doing well …taking oral vanco and recently had his Apriso Rx cut in half. My son says he’s doing better now than before he became sick.
Now I’m in the hospital with my 9 year old daughter. She has been diagnosed with atypical HUS and is on the life saving treatment aculizumab. This is a genetic disease and genetic testing has been sent out. We should have results in 28 days. (aHUS mostly affects kidneys and blood.)
My question to kidney dr is if this is related at all to my son’s dx. Drs do not think so. I’m thinking that maybe PSC has a gene that coukd be identified like aHUS and perhaps is part of the complement system also.
I will be posing that question to other drs and emailing Dr Truaner who is apart of the nor-Urso team in Vienna, Austria.
I’m glad to hear that your son is doing well. PSC normally is a slow moving disease. Some of our members have had it for a number of years, while for others like myself I was diagnosed in 2011 and had my life-saving liver transplant one year ago this coming Saturday. I really think though I had it for many years prior to 2011 but didn’t know. It is possible for your son to live a normal life for many years if he is early on in his disease. There will be days he feels bad and others when he’s much better. Most of the symptoms are very much tied to bile flow. If his bilirubin starts climbing pretty high, say over 4.0 it may be time for an ERCP procedure. With this endoscopic procedure they will go in and open up his ducts, clean them out as much as possible to enable the bile to flow better. Often the patient will go for several years before they start having major issues again. I’m saying all this to encourage you that there’s still a full life ahead for him, unless complications arise. Just live life to its fullest one day at a time. I do hope you are having him see a hepatologist, this is a specialist physician in the diagnosis and treatment of liver disease. I would not encourage you to use a GI doctor or primary care doctor for this disease. Things can change rapidly later on and you need a doctor that is associated with a transplant hospital that can get him on the list “should” he need that one day.
-As to your question about your daughter, I’m not sure on that. Perhaps there are other members that may have knowledge on that subject and will hopefully respond. The very best to you and your family.
PSC 2011 / Liver Transplant 7-23-2015
Unfortunately I have nothing to add in your search for answers. However, I wanted to simply say, I admire your strength. A mother’s love is an amazing source of power.
Sending light and prayers your way, Gloria