Re: polls

[Guest guest]

My husband was jaundice before diagnosis. I noticed it in his eyes and his urine was tea colored and stool was white or beige in color.

He was probably diagnosed about a two weeks after becoming jaundice. What was weird is that he had shown signs of this for a few years but, never put two and two together until jaundice and diagnosis. He would come home from work and scratch his legs raw and you could see the bile salt actually laying on his skin. It was really weird. He fought it for three years until he was transplanted in April of 2005. Good luck and hope this helps Tina

RE: polls

-----Original Message----- I'm interested in how long it was after diagnosis that people became jaundiced. Since my son has not jaundiced yet, I can't answer the poll to see the results.

Just my two cents – Don’t put much stock (if any) in these polls. Most of them are just posted by people who are curious and don’t take in all of the medical facts that are needed for a true study. Like this poll for example, knowing how long it took a few people to become jaundiced means nothing to the course of disease for anyone else.

Most people are diagnosed at different stages of disease. My son was dx at ESTD (Stage 4), while someone else might be dx at stage 1. So naturally the time frame would be different and a poll of this type wouldn’t show that. So it’s basically meaningless.

Someone can become jaundiced and have an ERCP to open ducts and clear out sludge and not have another problem for years, while someone else could have a problem every month or two. This poll wouldn’t allow for that either.

The poll on hives is another example. Currently one in five people will get hives. That’s not - 1 in 5 people with PSC, just 1 in 5 in the general population. So there is no way we could validate our poll without taking that into consideration.

It’s sorta like having a baby, put 10 women in a room and each of them will have their own version of the birthing story; some 9 months, others 8 or 7, some have a lot, a little or no pain, it’s highly likely any two stories will be the same even though all of them end up with a baby.

The only thing we all know for sure is this: PSC is different for everyone who has the misfortune of having it. Try as we might, we can’t lump any of us into one, two or even three categories, and we can’t use someone else’s experience as a guidepost for what will or will not happen to the rest of us. It just doesn’t work.

Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (32) UC 91 - PSC 99 Listed 7/21 @ Baylor Dallas

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