Re: Turning Yellow Yet Again

[Guest guest]

Generally Jaundice will become noticable in the eyes around 2.5-3

mg/dl.

in Seattle

>

> Hi folks,

>

> Does anyone know, is there a certain threshhold of bilirubin in the

> blood--or even a general range--at which one starts to turn

yellow?

> Eight days ago my bilirubin was on the high end of normal and my

skin

> and eyes looked fine, but tonight I'm noticing a sudden yellow cast

to

> my skin and my eyes have a hint of yellow as well. I remember very

> well what I looked like when my bilirubin was around 9 earlier this

> year, and I am definitely not there yet; just trying to make a

> guesstimate of where my levels are right now, as I just start to

turn

> that beauuuuuuutiful dandelion color again.

>

> Time for a new stent, I guess. I've been continuously stented and

re-

> stented since May for an extremely stubborn dominant hilar

stricture,

> but at my Sept. 10th ERCP my docs decided to leave the stent out

for a

> trial run for a little while again. Not working, I guess. >:{

>

> Genevieve

> UC 1983, J-Pouch 1999, PSC 12/07

>

[Guest guest]

Thanks, . It was 3.7--four times what it was 10 days ago--and

my alk phos is double at 622.

Spoke with my doc first thing this morning when he got my bloodwork

back, and he told me to pack up and head to the hospital, so here I

am. Ugh. MRCP tonight or tomorrow, ERCP first thing Monday, seeing

my hep and a surgeon and the biliary folks after that. He said this

time I'm not leaving until he is certain that this stubborn stricture

is benign. About to get my IV with happy drugs for the pain, so at

least this place will be tolerable...

Genevieve

UC 1983, J-Pouch 1999, PSC 12/07

>

> Generally Jaundice will become noticable in the eyes around 2.5-3

> mg/dl.

>

> in Seattle

>

[Guest guest]

> > Generally Jaundice will become noticable in the eyes around 2.5-3

> > mg/dl.

> >

> > in Seattle

I just found that out this last week on Monday, when I was having a

cholangitis attack for the 3rd time in 3 months. In the ED they told me

my bilirubin was at 3 on Monday night. And then when my GI saw me on

Tuesday afternoon just before I went in for my ERCP (with a stent being

placed), he commented that my eyes were slightly yellow.

I seem to keep ending up with sludge/crystals in my duct, which then

plugs and I end up with pus and an infection. He did up my Urso to

1500mg per day. I could probably go as high as 2500mg so we will just

keep tweeking.

I will be having my 4th ERCP this year on Nov 17th to remove the stent.

I need to get this figured out, I start nursing school in Jan 2009. And

at 51 it is going to be tough enough to do school and part time work.

Don't need my liver kicking up too.

Quick question for those who have had attacks--how do you first

recognize an attack coming on?

Beth B--Thornton,CO

[Guest guest]

> > Generally Jaundice will become noticable in the eyes around 2.5-3

> > mg/dl.

> >

> > in Seattle

I just found that out this last week on Monday, when I was having a

cholangitis attack for the 3rd time in 3 months. In the ED they told me

my bilirubin was at 3 on Monday night. And then when my GI saw me on

Tuesday afternoon just before I went in for my ERCP (with a stent being

placed), he commented that my eyes were slightly yellow.

I seem to keep ending up with sludge/crystals in my duct, which then

plugs and I end up with pus and an infection. He did up my Urso to

1500mg per day. I could probably go as high as 2500mg so we will just

keep tweeking.

I will be having my 4th ERCP this year on Nov 17th to remove the stent.

I need to get this figured out, I start nursing school in Jan 2009. And

at 51 it is going to be tough enough to do school and part time work.

Don't need my liver kicking up too.

Quick question for those who have had attacks--how do you first

recognize an attack coming on?

Beth B--Thornton,CO

[Guest guest]

> > Generally Jaundice will become noticable in the eyes around 2.5-3

> > mg/dl.

> >

> > in Seattle

I just found that out this last week on Monday, when I was having a

cholangitis attack for the 3rd time in 3 months. In the ED they told me

my bilirubin was at 3 on Monday night. And then when my GI saw me on

Tuesday afternoon just before I went in for my ERCP (with a stent being

placed), he commented that my eyes were slightly yellow.

I seem to keep ending up with sludge/crystals in my duct, which then

plugs and I end up with pus and an infection. He did up my Urso to

1500mg per day. I could probably go as high as 2500mg so we will just

keep tweeking.

I will be having my 4th ERCP this year on Nov 17th to remove the stent.

I need to get this figured out, I start nursing school in Jan 2009. And

at 51 it is going to be tough enough to do school and part time work.

Don't need my liver kicking up too.

Quick question for those who have had attacks--how do you first

recognize an attack coming on?

Beth B--Thornton,CO

[Guest guest]

Beth

What is your MELD score? I had my tx when I was 52 and in the years before that I was working on my Master degree. I didn't know about HE (hepatic encephalopathy) which I didn't recognize but it did stop my my studies. I was dx'ed 21 years earlier and went through all the standard PSC symptoms, but pushed through until the HE. I was 450 miles away from my transplant team and so I just didn't see them often enough to be monitored better. Now I realize I could have had treatment for the HE that might have let me finish school. I never had cholangitis attacks until the last 18 months before my tx. The UC was my biggest problem until I started seing a good GI.

Going to college in my 50's was great, I was able to pull in experiences from life that were very valuable to me and to the "youngsters" I studied with. I enjoyed it. One other thing to keep in mind is that government student loans are forgiven in the event of a catastrophic illness. One should never plan on not repaying a loan, but, if you are borrowing money for school, be sure it will be forgiven if you eventually need a transplant.

Take Care

MizKit

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[Guest guest]

Beth

What is your MELD score? I had my tx when I was 52 and in the years before that I was working on my Master degree. I didn't know about HE (hepatic encephalopathy) which I didn't recognize but it did stop my my studies. I was dx'ed 21 years earlier and went through all the standard PSC symptoms, but pushed through until the HE. I was 450 miles away from my transplant team and so I just didn't see them often enough to be monitored better. Now I realize I could have had treatment for the HE that might have let me finish school. I never had cholangitis attacks until the last 18 months before my tx. The UC was my biggest problem until I started seing a good GI.

Going to college in my 50's was great, I was able to pull in experiences from life that were very valuable to me and to the "youngsters" I studied with. I enjoyed it. One other thing to keep in mind is that government student loans are forgiven in the event of a catastrophic illness. One should never plan on not repaying a loan, but, if you are borrowing money for school, be sure it will be forgiven if you eventually need a transplant.

Take Care

MizKit

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[Guest guest]

Beth

What is your MELD score? I had my tx when I was 52 and in the years before that I was working on my Master degree. I didn't know about HE (hepatic encephalopathy) which I didn't recognize but it did stop my my studies. I was dx'ed 21 years earlier and went through all the standard PSC symptoms, but pushed through until the HE. I was 450 miles away from my transplant team and so I just didn't see them often enough to be monitored better. Now I realize I could have had treatment for the HE that might have let me finish school. I never had cholangitis attacks until the last 18 months before my tx. The UC was my biggest problem until I started seing a good GI.

Going to college in my 50's was great, I was able to pull in experiences from life that were very valuable to me and to the "youngsters" I studied with. I enjoyed it. One other thing to keep in mind is that government student loans are forgiven in the event of a catastrophic illness. One should never plan on not repaying a loan, but, if you are borrowing money for school, be sure it will be forgiven if you eventually need a transplant.

Take Care

MizKit

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[Guest guest]

For me - feel like crap, followed by fever, chills, may be accompanied by pale stools, dark urine, and eventually jaundice. Some people report severe nausea and vomiting (I've never experienced that, so far). Jaundice has always been last, for me.

Arne

57 - UC 1977 - PSC 2000

Alive and well in Minnesota

________________________________

From: [mailto: ] On Behalf Of b_brandel58

....Quick question for those who have had attacks--how do you first recognize an attack coming on?

[Guest guest]

Mizkat,

thank you for so much information

> What is your MELD score??

I am so new to PSC that I don't even know what a MELD score is. I was

just diagnosised this last May or June (it had been a heck of a year

for me). Right now I am just working with a great GI that I feel

really comfortable, but will ask him when I see him for my 4th ERCP

on Nov 17th.

I do know what HE (hepatic encephalopathy) is. I currently work as a

CNA on the Intermediate Care/Stepdown floor (not well enough for

regular floor, but not sick enough for the ICUs) at my hospital.

Seeing people with HE and very jaundiced is one of the scariest parts

of my job. I look at them and say to my self " that could be in the

future " . For me I live right in the Denver area so when I need a

hepatologist I should not have any issue finding one.

For me UC is not an issue, as I had my colon removed about 25/26

years ago and had an internal S-pouch (like the current J-pouch every

one talks about now)

>

> Going to college in my 50's was great, I was able to pull in

experiences from life that were very valuable to me and to

the " youngsters " I studied with.

For me I never even went to college (not even community college)

until just before I turned 46 (I started my pre-requisites in Jan

2004)..I can say the community college level was a bit interesting,

for me I had no issues with my other female classmates, but had

issues with the male students (a minor few of them), I think they

felt threatened that I a female could score as high if not higher

than them. I am proud to say that in my 62 credits of pre-reqs I

maintained a 3.82 GPA.

Since I am going for my BSN I think that I will have the same

feelings with my classmates, that I can pull life experiences into

class for some learning experience.

>One other thing to keep in mind is that?government?student loans are

forgiven in the event of a catastrophic illness. One should never

plan on not repaying a loan, but, if you are borrowing money for

school,?be sure it will be forgiven if you eventually need a

transplant.?

Also thanks for the info that if I end up needing a tx that I may be

able to have my loans forgiven. Sounds bad but at least I know that

is possible if god forbid something happens in the future.

Again thanks for all the information,

Beth B--thornton,CO

[Guest guest]

Mizkat,

thank you for so much information

> What is your MELD score??

I am so new to PSC that I don't even know what a MELD score is. I was

just diagnosised this last May or June (it had been a heck of a year

for me). Right now I am just working with a great GI that I feel

really comfortable, but will ask him when I see him for my 4th ERCP

on Nov 17th.

I do know what HE (hepatic encephalopathy) is. I currently work as a

CNA on the Intermediate Care/Stepdown floor (not well enough for

regular floor, but not sick enough for the ICUs) at my hospital.

Seeing people with HE and very jaundiced is one of the scariest parts

of my job. I look at them and say to my self " that could be in the

future " . For me I live right in the Denver area so when I need a

hepatologist I should not have any issue finding one.

For me UC is not an issue, as I had my colon removed about 25/26

years ago and had an internal S-pouch (like the current J-pouch every

one talks about now)

>

> Going to college in my 50's was great, I was able to pull in

experiences from life that were very valuable to me and to

the " youngsters " I studied with.

For me I never even went to college (not even community college)

until just before I turned 46 (I started my pre-requisites in Jan

2004)..I can say the community college level was a bit interesting,

for me I had no issues with my other female classmates, but had

issues with the male students (a minor few of them), I think they

felt threatened that I a female could score as high if not higher

than them. I am proud to say that in my 62 credits of pre-reqs I

maintained a 3.82 GPA.

Since I am going for my BSN I think that I will have the same

feelings with my classmates, that I can pull life experiences into

class for some learning experience.

>One other thing to keep in mind is that?government?student loans are

forgiven in the event of a catastrophic illness. One should never

plan on not repaying a loan, but, if you are borrowing money for

school,?be sure it will be forgiven if you eventually need a

transplant.?

Also thanks for the info that if I end up needing a tx that I may be

able to have my loans forgiven. Sounds bad but at least I know that

is possible if god forbid something happens in the future.

Again thanks for all the information,

Beth B--thornton,CO

[Guest guest]

Arne,

sounds sbout like how mine come on, although I did have a major bout of

nauseau before my first episode..I have also noticed that jaundice is

the last thing for me too.

Thanks for a fellow Minnesotan (from birth to July 4,1991),

Beth B.---Thornton, CO

> For me - feel like crap, followed by fever, chills, may be

accompanied by

> pale stools, dark urine, and eventually jaundice. Some people report

severe

> nausea and vomiting (I've never experienced that, so far). Jaundice

has

> always been last, for me.

[Guest guest]

Arne,

sounds sbout like how mine come on, although I did have a major bout of

nauseau before my first episode..I have also noticed that jaundice is

the last thing for me too.

Thanks for a fellow Minnesotan (from birth to July 4,1991),

Beth B.---Thornton, CO

> For me - feel like crap, followed by fever, chills, may be

accompanied by

> pale stools, dark urine, and eventually jaundice. Some people report

severe

> nausea and vomiting (I've never experienced that, so far). Jaundice

has

> always been last, for me.

[Guest guest]

--- Beth B

When I first started having trouble with my bile ducts my stool would

change and urine would become dark. Than I would get a temp around 102-

103 and he shakes.

I knew that I had a problem and it was off to the hospital ER. I was

given IV's and had a stay for 3-4 days.

I am now on 3 antibio>that I take each for 2 weeks and than change to

the next one. I am told that I will be on these for the rest of my

life. I am 66y old. But, I donot have any more attacks or when I have

one it is small.

I hope this helps

good luck

Lee G of Seattle

[Guest guest]

Good luck. I hope your procedures bring you some relief. I went

through similar repeat ERCP's early on, repeating every few months

but in the last 5 years or so the dominent strictures have not been

the issue and the frequency of ERCP's has decreased.

I hope your stay and recovery are uneventful.

>

> Thanks, . It was 3.7--four times what it was 10 days ago--and

> my alk phos is double at 622.

>

> Spoke with my doc first thing this morning when he got my bloodwork

> back, and he told me to pack up and head to the hospital, so here I

> am. Ugh. MRCP tonight or tomorrow, ERCP first thing Monday,

seeing

> my hep and a surgeon and the biliary folks after that. He said

this

> time I'm not leaving until he is certain that this stubborn

stricture

> is benign. About to get my IV with happy drugs for the pain, so at

> least this place will be tolerable...

>

> Genevieve

> UC 1983, J-Pouch 1999, PSC 12/07

>

>

[Guest guest]

With me it was nausea.

Regards,

Chaim Boermeester, Israel

From: [mailto: ] On Behalf Of b_brandel58

Sent: Monday, October 20, 2008

00:57

To:

Subject: Re: Turning

Yellow Yet Again

> > Generally Jaundice will become noticable in the eyes around 2.5-3

> > mg/dl.

> >

> > in Seattle

I just found that out this last week on Monday, when I was having a

cholangitis attack for the 3rd time in 3 months. In the ED they told me

my bilirubin was at 3 on Monday night. And then when my GI saw me on

Tuesday afternoon just before I went in for my ERCP (with a stent being

placed), he commented that my eyes were slightly yellow.

I seem to keep ending up with sludge/crystals in my duct, which then

plugs and I end up with pus and an infection. He did up my Urso to

1500mg per day. I could probably go as high as 2500mg so we will just

keep tweeking.

I will be having my 4th ERCP this year on Nov 17th to remove the stent.

I need to get this figured out, I start nursing school in Jan 2009. And

at 51 it is going to be tough enough to do school and part time work.

Don't need my liver kicking up too.

Quick question for those who have had attacks--how do you first

recognize an attack coming on?

Beth B--Thornton,CO