Re: polls

[Guest guest]

-----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

[Guest guest]

I agree Barb. I guess we all look for what the possible pathways might be.When I see those who are highly jaundiced before transplant, I can't help but wonder how far off this might be for us.So I was curious about those that answered.What I was really trying to ask, was, is there a way to view polls and their answers without voting?LeeJust 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.  

[Guest guest]

-----Original Message-----

I guess we all look for what the possible pathways might be.

Boy, isn’t that the truth! I’ve been looking since day one. I tell myself a lot of people far, far

smarter than I am, are looking too, still….I guess somewhere in the back

of my heart, I hope someone comes up with the magic answer and soon.

When I see those who are highly jaundiced before transplant, I can't

help but wonder how far off this might be for us.

I was that way myself,

always wondering….when. Know

what stopped me from doing that and gave me peace? Simple answer – MELD score. Since everything is based on that score,

I let Mr. MELD worry about it now. I trust him (might as well - all the

doctors do.) He’ll let me

know when it’s time. Ken has been listed the longest in his blood group and there are only

3 people in the 11-18 score range. So all we need is the right Meld score

and hopefully that won’t come for a long - long time.

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

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