Re: How often should blood be monitored?

April 5, 2009

Hey, Welcome to the group. I was dx in'01 and had been sick since '84. I had my

first episode of extreme upper abdomenal pain which caused me several days in

the hospital. I continued with pain episodes for the next 7 years and then they

took my gall bladder out. It was a twisted scarred mess, non functioning. Then I

got even sicker, was in the hospital or emergency room repeatedly. They ran tons

of tests, finally in '00 had my ulcerative colitis diagnosed, and then four

months later '01 got PSC dx. Because of the meds I was on for UC, I had my blood

done monthly. that continued until three years ago, now they do them every 3-4

months, or sometimes more frequently since I am now on diuretics and meds for

high cholesterol. I think 4-6 months without other symptoms is pretty typical. I

have just bought and read a book that I wish I had found 30 years ago (since it

was only recently published wouldn't have been possible) I can not recommend it

enough for all of the new people on here

and everyone else. How Doctors Think by Jerome Groopman. I have never felt like

I could have consistently constructive dialogues with doctors. It has been hit

or miss. I would be convinced some doctor didn't like me from the moment I

walked int the office. After reading this book, I can in retrospect understand

what each was thinking (particularly in all those incorrect dx or brushing me

off). I would check that out for yourselves and your son. I found it at

and Noble. Feel free to ask any questions. Take care, Cheryl ID, PSC/UC 50years

old

How often should blood be monitored?

> My son was diagnosed with PSC last April and our family is devastated. He is

25 yrs old now and because he is an adult, we worry that he is not getting

properly monitored. When he was first diagnosed, they were monitoring his blood

every few weeks and now he hasn't been monitored for 4 months. Can anyone tell

me how often the blood work should be done?

>

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