Re: MELD Scores - frequent ERCP question for Ami from Deb

[Guest guest]

On the other hand, my son, , who has PSC and has had ERCP's

every 3 weeks since October, and will probably need his next this

coming week rather than the week after and IS going to have

transplant, has a PELD score of minus four (-4).

Ami,

You've probably said before and I've missed it, but why, oh why, are

they doing ERCPs that frequently? The reason I ask is that maybe if

they'd let him go for just a few more weeks, his bilirubin would get

higher (and maybe his other values as well) and he'd get more PELD

points...I'm sorry if you've been over this, but I hate to think of

a kid who has already been through so much undergoing this many

ERCPs. I had mine closer together as I approached transplant and

they seemed to do less and less good - and that was having them 6

months apart. I didn't rebound as quickly and my numbers didn't

improve much...Are they really helping?

Just curious - I'm praying hard for you all!

Deb in VA

updates see - www.caringbridge.org/va/deniseb

>

>

[Guest guest]

On the other hand, my son, , who has PSC and has had ERCP's

every 3 weeks since October, and will probably need his next this

coming week rather than the week after and IS going to have

transplant, has a PELD score of minus four (-4).

Ami,

You've probably said before and I've missed it, but why, oh why, are

they doing ERCPs that frequently? The reason I ask is that maybe if

they'd let him go for just a few more weeks, his bilirubin would get

higher (and maybe his other values as well) and he'd get more PELD

points...I'm sorry if you've been over this, but I hate to think of

a kid who has already been through so much undergoing this many

ERCPs. I had mine closer together as I approached transplant and

they seemed to do less and less good - and that was having them 6

months apart. I didn't rebound as quickly and my numbers didn't

improve much...Are they really helping?

Just curious - I'm praying hard for you all!

Deb in VA

updates see - www.caringbridge.org/va/deniseb

>

>

[Guest guest]

On the other hand, my son, , who has PSC and has had ERCP's

every 3 weeks since October, and will probably need his next this

coming week rather than the week after and IS going to have

transplant, has a PELD score of minus four (-4).

Ami,

You've probably said before and I've missed it, but why, oh why, are

they doing ERCPs that frequently? The reason I ask is that maybe if

they'd let him go for just a few more weeks, his bilirubin would get

higher (and maybe his other values as well) and he'd get more PELD

points...I'm sorry if you've been over this, but I hate to think of

a kid who has already been through so much undergoing this many

ERCPs. I had mine closer together as I approached transplant and

they seemed to do less and less good - and that was having them 6

months apart. I didn't rebound as quickly and my numbers didn't

improve much...Are they really helping?

Just curious - I'm praying hard for you all!

Deb in VA

updates see - www.caringbridge.org/va/deniseb

>

>

[Guest guest]

but why, oh why, are

> they doing ERCPs that frequently?

Hi Deb, You asked the question I was going to ask.

I was interested what is the purpose of ERCP's every 3 weeks.

I know I felt better after my last 2 diagnosive ERCPS, (a year apart),

maybe the effect of the dye being injected into my bile ducts have

opened them up a bit?

I did read a few weeks ago on this board about a lady who had 30 ERCPs

and is now fine.....the after effects of what Arne calls the 'cheap

drunk' effect that the sedative has on me, vomitting, a drip and an

overnight stay in hospital, I think someone would have to be very

persuasive in the argument for me to have another 26 ERCPs!!!

thanks

[Guest guest]

but why, oh why, are

> they doing ERCPs that frequently?

Hi Deb, You asked the question I was going to ask.

I was interested what is the purpose of ERCP's every 3 weeks.

I know I felt better after my last 2 diagnosive ERCPS, (a year apart),

maybe the effect of the dye being injected into my bile ducts have

opened them up a bit?

I did read a few weeks ago on this board about a lady who had 30 ERCPs

and is now fine.....the after effects of what Arne calls the 'cheap

drunk' effect that the sedative has on me, vomitting, a drip and an

overnight stay in hospital, I think someone would have to be very

persuasive in the argument for me to have another 26 ERCPs!!!

thanks

[Guest guest]

but why, oh why, are

> they doing ERCPs that frequently?

Hi Deb, You asked the question I was going to ask.

I was interested what is the purpose of ERCP's every 3 weeks.

I know I felt better after my last 2 diagnosive ERCPS, (a year apart),

maybe the effect of the dye being injected into my bile ducts have

opened them up a bit?

I did read a few weeks ago on this board about a lady who had 30 ERCPs

and is now fine.....the after effects of what Arne calls the 'cheap

drunk' effect that the sedative has on me, vomitting, a drip and an

overnight stay in hospital, I think someone would have to be very

persuasive in the argument for me to have another 26 ERCPs!!!

thanks

[Guest guest]

I can't speak specifically for Ami re- 's ERCPs, but I am guessing

that the reason is the same one that my son has had so many. My son,

despite having had his gallbladder removed 2 years prior, started

having stones obstructing his common bile duct very frequently due to

strictures. He had balloon dilations for the first few times and then

started having stents replaced very regularly for a total of 14 ERCPs

so far. Braden's stents started clogging up with sludge and stones too

so they needed to be replaced often.

Once a stone(s) obstruct the common bile duct it is an urgent

situation that requires treatment asap with an ERCP.

Lori

>

> Ami,

> You've probably said before and I've missed it, but why, oh why, are

> they doing ERCPs that frequently? The reason I ask is that maybe if

> they'd let him go for just a few more weeks, his bilirubin would get

> higher (and maybe his other values as well) and he'd get more PELD

> points...I'm sorry if you've been over this, but I hate to think of

> a kid who has already been through so much undergoing this many

> ERCPs. I had mine closer together as I approached transplant and

> they seemed to do less and less good - and that was having them 6

> months apart. I didn't rebound as quickly and my numbers didn't

> improve much...Are they really helping?

>

> Just curious - I'm praying hard for you all!

> Deb in VA

> updates see - www.caringbridge.org/va/deniseb

> >

> >

>

[Guest guest]

I can't speak specifically for Ami re- 's ERCPs, but I am guessing

that the reason is the same one that my son has had so many. My son,

despite having had his gallbladder removed 2 years prior, started

having stones obstructing his common bile duct very frequently due to

strictures. He had balloon dilations for the first few times and then

started having stents replaced very regularly for a total of 14 ERCPs

so far. Braden's stents started clogging up with sludge and stones too

so they needed to be replaced often.

Once a stone(s) obstruct the common bile duct it is an urgent

situation that requires treatment asap with an ERCP.

Lori

>

> Ami,

> You've probably said before and I've missed it, but why, oh why, are

> they doing ERCPs that frequently? The reason I ask is that maybe if

> they'd let him go for just a few more weeks, his bilirubin would get

> higher (and maybe his other values as well) and he'd get more PELD

> points...I'm sorry if you've been over this, but I hate to think of

> a kid who has already been through so much undergoing this many

> ERCPs. I had mine closer together as I approached transplant and

> they seemed to do less and less good - and that was having them 6

> months apart. I didn't rebound as quickly and my numbers didn't

> improve much...Are they really helping?

>

> Just curious - I'm praying hard for you all!

> Deb in VA

> updates see - www.caringbridge.org/va/deniseb

> >

> >

>

[Guest guest]

I can't speak specifically for Ami re- 's ERCPs, but I am guessing

that the reason is the same one that my son has had so many. My son,

despite having had his gallbladder removed 2 years prior, started

having stones obstructing his common bile duct very frequently due to

strictures. He had balloon dilations for the first few times and then

started having stents replaced very regularly for a total of 14 ERCPs

so far. Braden's stents started clogging up with sludge and stones too

so they needed to be replaced often.

Once a stone(s) obstruct the common bile duct it is an urgent

situation that requires treatment asap with an ERCP.

Lori

>

> Ami,

> You've probably said before and I've missed it, but why, oh why, are

> they doing ERCPs that frequently? The reason I ask is that maybe if

> they'd let him go for just a few more weeks, his bilirubin would get

> higher (and maybe his other values as well) and he'd get more PELD

> points...I'm sorry if you've been over this, but I hate to think of

> a kid who has already been through so much undergoing this many

> ERCPs. I had mine closer together as I approached transplant and

> they seemed to do less and less good - and that was having them 6

> months apart. I didn't rebound as quickly and my numbers didn't

> improve much...Are they really helping?

>

> Just curious - I'm praying hard for you all!

> Deb in VA

> updates see - www.caringbridge.org/va/deniseb

> >

> >

>

[Guest guest]

I was also thinking that the number ERCP was do to blockages, too. My

husband has a blockage due to stones about every other month. And you

have to remove the blockage before infection get worse.

When we were at UPMC the doctor told us there was nothing we could do

to control the stones, that we have to address them when he has a

blockage. I guess they are created by a mineral that gets stuck on the

wall of the bile duct. Then other minerals attach themselves to the

first until there is a stone.

Ok that got long winded.

Litsa

DH w/ PSC listed June06