Re:Barb- blood draw 3 months

[Guest guest]

Barb,

I hope you'll just take this as just my 2 cents, but I'm shocked that

the doctor wants to see fewer labs from Ken given that he's had the

recent bruising you mentioned. I understand what you mean about

wanting to have some time off from the disease, but the longest I've

ever had between blood draws since diagnosis is three months. (I do

cancer screenings ever three months regardless of the frequency of my

other labs). It has usually varied between six weeks and a month.

Yes, my veins are quite scarred, but I want to relate to you that my

enzymes do change significantly between blood draws - sometimes, it

is only a month and we see a big difference. Having the blood draws

frequently helps the doctors know if I'm trending this way or that

way. Even before I was listed, we drew my blood frequently to

determine when I should be listed.

Here are a couple of examples from my labs to show you just how much

my numbers have changed quickly:

In 04/03 my bilirubin was just 4.2 - by June, it was 13.1. That's

quite a jump in not a lot of time. (My other numbers similarly

elevated at the same time.) This necessitated the last-ditch attempt

ERCP in later June. This is just one example. Post-baby, I went from

a bilirubin of 4 something pre-delivery to 15 something (don't have

the records on me) in six weeks. Granted, Ken's not having any

babies, but I question what this doctor is telling you in general

about numbers not changing quickly. For me, this disease turns on a

dime.

Just another perspective to share. I hope you and Ken are both well

at the start of this New Year!

Happy Holiday!

Deb in VA

PSC 1998, UC 1999, Listed Ltx 2001, MELD 17 (blood draw yesterday -

expecting it to go higher)

[Guest guest]

OOPS - That was 04/04, not 04/03 - sorry! Guess my thinking isn't too

clear today...Deb

>

> Barb,

> I hope you'll just take this as just my 2 cents, but I'm shocked

that

> the doctor wants to see fewer labs from Ken given that he's had the

> recent bruising you mentioned. I understand what you mean about

> wanting to have some time off from the disease, but the longest

I've

> ever had between blood draws since diagnosis is three months. (I do

> cancer screenings ever three months regardless of the frequency of

my

> other labs). It has usually varied between six weeks and a month.

> Yes, my veins are quite scarred, but I want to relate to you that

my

> enzymes do change significantly between blood draws - sometimes, it

> is only a month and we see a big difference. Having the blood draws

> frequently helps the doctors know if I'm trending this way or that

> way. Even before I was listed, we drew my blood frequently to

> determine when I should be listed.

>

> Here are a couple of examples from my labs to show you just how

much

> my numbers have changed quickly:

>

> In 04/03 my bilirubin was just 4.2 - by June, it was 13.1. That's

> quite a jump in not a lot of time. (My other numbers similarly

> elevated at the same time.) This necessitated the last-ditch

attempt

> ERCP in later June. This is just one example. Post-baby, I went

from

> a bilirubin of 4 something pre-delivery to 15 something (don't have

> the records on me) in six weeks. Granted, Ken's not having any

> babies, but I question what this doctor is telling you in general

> about numbers not changing quickly. For me, this disease turns on a

> dime.

>

> Just another perspective to share. I hope you and Ken are both well

> at the start of this New Year!

>

> Happy Holiday!

> Deb in VA

> PSC 1998, UC 1999, Listed Ltx 2001, MELD 17 (blood draw yesterday -

> expecting it to go higher)

[Guest guest]

Don’t worry Deb,

I am a firm believer in debate, how else do folks learn if not though give

& take on ideas & thoughts, plus this disease differs so from person to

person it’s a “good thing” for everyone to talk about what works

(or doesn’t work) for them.

I was talking about other

people in the early stages of PSC. But,

even Ken at

Stage 4 gave blood every 3 months for years & it was totally unnecessary - early

on - because he was stable. Now it’s a different thing altogether

& he’ll go back to 3 months or more often as needed.

I am very disappointed

Ken’s

doctor didn’t order a PT & INR when he did the LFT’s. Baylor uses both the CTP & MELD and with

Ken’s

edema & albumin score if he had had those numbers he might have had a

chance to be listed or at the very least a 1 time score to build on, but

without the PT & INR we’re stuck waiting – again! Ken’s

MELD has been at a 10 or above since 2002.

UGH……I “think” it’s because Baylor has so

many people already listed for livers they don’t want to add to their

list until absolutely necessary. So

we wait…..

Barb

in Texas - Son Ken

(30) UC 91 & PSC 99

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

From: Deb

hope you'll just take this as just my 2 cents,