Hi All,
This forum has been great. I am thankful that I found you. We have a recently diagnosed eight year old daughter with small duct PSC and UC. Can any adults comment on how the disease has progressed from childhood to adulthood? The pediatric doctors can’t tell me because they don’t follow patients into adulthood. Thank you in advance.
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Hi mcdona,
My name is Jane. I am 59 years old. I have PSC and was diagnosed with UC at age 13. I hope to give you rather good news, in that I have survived this awful disease so far (about 30 years since the PSC diagnosis). So far I have not had any cholangitis attacks (only a few slight, fleeting pains in my right side). I do, however, have a blood clot in a portal vein, leaving me taking coumadin. I have blood work every 3-6 months and an MRCP with and without contract every year, as well as a colonoscopy. When I was told I had PSC, I began taking MILK THISTLE (an herb that helps in the restoration of the liver).
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About a year later when my liver profile #'s began to increase, I started taking an organic FRUIT/VEGGIE supplement by Juice Plus.
About a year into taking this, my primary doctor said, "I don’t know what you are doing but your #'s are almost normal. The only thing I could think of was taking the supplement and a strong FAITH. So, now I still take the fruit/veggie, but I buy them through Costco
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Anyway, I just wanted to let you know that there is HOPE! My hematologist told me that there are people that can live with this into their 80’s. You often times read on this site of many sad stories or of people at end stages going into transplants. I’m here to tell you it’s not always the case.
Now. It’s very possible that could change for me at any time, BUT…I’ve learned to live each day as if it were the 1st and last. I charish all that God has given me and appreciate that I have been very fortunate. I try not to focus on the…“WHAT IF’S,” But rather on the “HERE AND NOW!!”
Best wishes and blessings to your 8 year old daughter.
May she have a long and healthy life!!
My warm regards,
Jane
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Hi Mcdona,
I was diagnosed with PSC in 2007. The doctors told me my liver biopsy and enzyme levels confirmed that the disease had progressed to Stage IV cirrhosis of the liver. I was 61 at the time. The doctors said the disease likely began in me at 6 months to 1 year old. Then, PSC slowly over time had led to Stage IV. 61 years is a long time to have a disease and not know you have it. Even with that dire diagnosis, I was very healthy, running all the time and working 12 hours a day as a school superintendent. The symptoms finally started destroying my health about two years later. Yes, you can live a long, normal life with PSC. It is unpredictable and varies from patient to patient. Take care of yourself. Follow your doctor’s orders. Get plenty of rest. And, it is very important to keep a positive mental attitude. I am well now. 6.5 years since my transplant.
Jane and Paul,
Thank you for your encouragement and kind words, and most importantly for sharing your experiences, I am so glad that you are both doing well.
Take care,
Mcdona