Liver TRX evaluation Results

[Guest guest]

Well all, I went to the Dr yesterday. They stated that at this time, I

am not in need of a TRX. My MELD is an 11, the center won't TRX till

you have a 15 or higher. This was a breath of fresh air once he stated

that. He is going to monitor my blood work cause he said that PSC can

turn at any moment. He did say that I will need a TRX in the future

but doens't know when. They will adust my MELD when I have the blood

work. He said that my biggest problem is that I need to lose some

weight. My BMI is a 37.4 and I need it to a 25. So I am working on

that and he said that will help keep my liver functions in a normal

range. Thought I would let you all know. Thaks for the support. I

will be staying in the group, not sure how much you all will hear from

me, but I will be staying in the group and talking when I have

something to say. You all have a good day.

Whitfield

UC 96 PSC 99

[Guest guest]

Hi, ; my daughter with PSC since 2001 has never been given a MELD score but she sounds an awful lot like you; her LFT's remain in the normal range although she has developed the severe itching being treated with Rifampin; she also has a severe case of hypothyroidism which makes it very difficult for her to shed weight; she too needs to lose quite a bit to prepare for eventual transplant surgery. I have never heard that PSC can turn in a minute; our doctor at Massachusetts General says there is a lot of warning leading up to liver failure.-----Original Message-----From: [mailto: ]On Behalf Of kysk33t3rSent: Thursday, September 27, 2007 3:05 PMTo: Subject: Liver TRX evaluation ResultsWell all, I went to the Dr yesterday. They stated that at this time, I am not in need of a TRX. My MELD is an 11, the center won't TRX till you have a 15 or higher. This was a breath of fresh air once he stated that. He is going to monitor my blood work cause he said that PSC can turn at any moment. He did say that I will need a TRX in the future but doens't know when. They will adust my MELD when I have the blood work. He said that my biggest problem is that I need to lose some weight. My BMI is a 37.4 and I need it to a 25. So I am working on that and he said that will help keep my liver functions in a normal range. Thought I would let you all know. Thaks for the support. I will be staying in the group, not sure how much you all will hear from me, but I will be staying in the group and talking when I have something to say. You all have a good day. WhitfieldUC 96 PSC 99The contents of this electronic mail message and any attachments are confidential, possibly privileged and intended for the addressee(s) only. Only the addressee(s) may read, disseminate, retain or otherwise use this message. If received in error, please immediately inform the sender and then delete this message without disclosing its contents to anyone.

[Guest guest]

Congratulations . It's a nice reprieve.

-Marie

>

>Well all, I went to the Dr yesterday. They stated that at this time, I

>am not in need of a TRX. My MELD is an 11, the center won't TRX till

>you have a 15 or higher. This was a breath of fresh air once he stated

>that. He is going to monitor my blood work cause he said that PSC can

>turn at any moment. He did say that I will need a TRX in the future

>but doens't know when. They will adust my MELD when I have the blood

>work. He said that my biggest problem is that I need to lose some

>weight. My BMI is a 37.4 and I need it to a 25. So I am working on

>that and he said that will help keep my liver functions in a normal

>range. Thought I would let you all know. Thaks for the support. I

>will be staying in the group, not sure how much you all will hear from

>me, but I will be staying in the group and talking when I have

>something to say. You all have a good day.

>

> Whitfield

>UC 96 PSC 99

>

_________________________________________________________________

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[Guest guest]

-----Original

Message-----

I have

never heard that PSC can turn in a minute; our doctor at Massachusetts General

says there is a lot of warning leading up to liver failure.

I too have never heard

PSC can turn on a dime. Just the opposite,

that it progress slowly.

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

Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas

__

[Guest guest]

I have also heard that PSC can turn quickly. However, in addition to that,

you may suddenly develop another liver illness on top of PSC. This happens

to me, and it happened very quickly. I had routine blood work done, and a

few days later the hepatologist called me at 9 pm the Tuesday before

Thanksgiving to tell me my liver enzymes and tests were way to high, and he

was sure I had autoimmune hepatitis. When your hepatologist is clearly

alarmed and nervous, you know things aren't good. I was scheduled for a

liver biopsy, and he put me on imuran and prednisone before we even got the

biopsy results. He was right: it was AIH. I now get my blood work done every

6-8 weeks.

-Marie

_________________________________________________________________

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[Guest guest]

I suppose it depends on what you mean by " turn on a dime " . In my case,

I went from not too sick, to transplant in about 3 months. I'll post

the graph on my MELD score on the website (it's in the photos section).

It's obvious that things were gradually getting worse, but when it

really started getting bad it shot up really fast. So yes, I had a lot

of warning that my liver was getting gradually worse, but three months

before my transplant I had no idea that I'd be needing one that soon.

athan

[Guest guest]

That's pretty fast - I'd call that turning on a dime. Especially from what

it had been. Thanks for sharing so we understand how quickly things can

change. After all, it takes a while to wrap the idea of a liver transplant

around your head.

>

>Reply-To:

>To:

>Subject: Re: Liver TRX evaluation Results

>Date: Thu, 27 Sep 2007 17:59:02 -0400

>

>I suppose it depends on what you mean by " turn on a dime " . In my case,

>I went from not too sick, to transplant in about 3 months. I'll post

>the graph on my MELD score on the website (it's in the photos section).

>It's obvious that things were gradually getting worse, but when it

>really started getting bad it shot up really fast. So yes, I had a lot

>of warning that my liver was getting gradually worse, but three months

>before my transplant I had no idea that I'd be needing one that soon.

>

>athan

_________________________________________________________________

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[Guest guest]

's turn on a dime moment came when he developed his esphogeal varices. His lab work was the same and he had not felt well for a long time but when he started to bleed all waiting was over. Marti "Biette, Beth" wrote: Hi, ; my daughter with PSC since 2001 has never been given a MELD score but she sounds an awful lot like you; her LFT's remain in the normal range although she has developed the severe itching

being treated with Rifampin; she also has a severe case of hypothyroidism which makes it very difficult for her to shed weight; she too needs to lose quite a bit to prepare for eventual transplant surgery. I have never heard that PSC can turn in a minute; our doctor at Massachusetts General says there is a lot of warning leading up to liver failure. -----Original Message-----From: [mailto: ]On Behalf Of kysk33t3rSent: Thursday, September 27, 2007 3:05 PMTo: Subject: Liver TRX evaluation Results Well all, I went to the Dr yesterday. They stated that at this time, I am not in need of a TRX. My MELD is an 11, the center won't TRX till

you have a 15 or higher. This was a breath of fresh air once he stated that. He is going to monitor my blood work cause he said that PSC can turn at any moment. He did say that I will need a TRX in the future but doens't know when. They will adust my MELD when I have the blood work. He said that my biggest problem is that I need to lose some weight. My BMI is a 37.4 and I need it to a 25. So I am working on that and he said that will help keep my liver functions in a normal range. Thought I would let you all know. Thaks for the support. I will be staying in the group, not sure how much you all will hear from me, but I will be staying in the group and talking when I have something to say. You all have a good day. WhitfieldUC 96 PSC 99 The contents of this electronic mail message and any attachments are

confidential, possibly privileged and intended for the addressee(s) only. Only the addressee(s) may read, disseminate, retain or otherwise use this message. If received in error, please immediately inform the sender and then delete this message without disclosing its contents to anyone.

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