Re: Brain Fog - Stage of PSC

[Guest guest]

Marcy,

I am a state tested nursing assistant, with more nursing background

before going into the field. I have found that it helps me a lot, because I

know what kind of questions to ask the ER doctors, and what kind of questions

to ask my GI. At my last visit, my GI laughed at me and said " wow, you are

some kind of patient " (Remember, my Dr, and I have a great patient Dr.

relationship), when I asked him if that was a good thing, or a bad thing...he

said it was good, because I am always questioning what he is doing, and I

help him in my treatment. For example, because of the fact that I have

chronic hepatitis (chronic inflammation of the liver), and this is what

causes my pain...I suggested that instead of the Tylenol 3 w/codiene that he

put me on, (which didn't help my URQ pain at all!) that he give me an

anti-inflammatory med. In my reasoning, it seems that if we can get the

inflammation in my liver to go down, then most of my pain would go away

also,...and maybe even make my liver a little healthier. His opinion

was... " It's definately worth a try " but he did tell me that they recently

tried this treatment with PBC patients, and didn't have much luck with it.

But, he gave me the med anyway. So far I haven't noticed a big difference in

the pain, but maybe it's one of those meds that you need to give it awhile to

be effective.

Hope everyone is doing great!

Love,

[Guest guest]

Peg,

I agree with what said about PSC knowlegde in the 80's, it was difficult

to be diagnosed. High LFT would just baffle most docs at the time. I know mine

were and tried things which might address the cause but didn't. Even now press

releases contain statements like:

" [PSC] blocks the bile ducts and leads to cirrhosis. The disease - the same one

that National Football League Hall of Fame running back Walter Payton has - is

marked by fatigue, followed by yellow in the pigment of the eyes and skin.

Doctors say many patients with the condition survive only about two years

without a transplant. The cause of the disease is not known. " - AP 8-24-99

I would say the 2 year figure is very low, unless PSC goes unnoticed for a long

time. Which can happen, not everyone has regular physicals or responds to minor

aches and fatigue. But if you are trying to see where you stand as far as PSC's

progression to liver failure goes, how long you have been diagnosed isn't a good

measure. Use the scoring system employed by UNOS, the

Child-Turcotte-Pugh (CTP) Scoring System to Assess Severity of Liver Disease,

which ranges from 5 to 15 points. (1 to 3 for each of 5 categories.)

Points 1 2 3

1 Encephalopathy None 1 - 2 3 - 4

2 Ascites Absent Slight At least moderate despite

(or controlled by diuretic treatment

diuretics)

3 Bilirubin (mg/dl)* <4 4-10 >10

4 Albumin (g/dl) >3.5 2.8-3.5 <2.8

5 Prothrombin time

(secs. prolonged) <4 4-6 >6

or (INR) <1.7 1.7-2.3 >2.3

*values used are those for PSC and other cholestatic liver diseases.

The first item is the brain fog index - you'll have to ask your doctor about

that one. If your pants no longer fit, you have some ascites. The last three

values are available from blood tests. A score of 10 put you at status 2B on the

UNOS transplant list. Other indicators are used to evaluate more severe failure

needed to be classed 2A.

original article:/group//?start=3715

> . . . Phil seems to have had this for a

> long time because his ducts are so bad but didn't know it until he had a

blockage,

> fever, jaundice etc. Just trying to figure out at what stage he's in. They

are

> proceding to get him on the tx list. But he was only diagnosed this last

December.

>

> Peg

[Guest guest]

> Re: Brain Fog - Stage of PSC

>

>

> Peg,

> I agree with what said about PSC knowlegde in the 80's, it

> was difficult to be diagnosed. High LFT would just baffle most

> docs at the time.

This is precisely what happened to me. It was quite by accident that I even

went to my internist at the time. It was July of 1985, and I was out to

dinner with my parents for my 26th birthday. I went to scratch the back of

my neck, and found my entire cervical lymph chain swollen. I went to the doc

the next day, he ran tests, and all my LFT's were elevated. They proceeded

to do a see saw motion over the course of about 2 1/2 years, during which

time my doc decided I had " nonA- nonB hepatitis " which we now know as Hep C.

There was no test back then.

He finally did send me to a hepatologist at Mt. Sinai, who looked at the

LFT's and knew right away it wasn't non A - non B hep. After a needle

biopsy, the correct diagnosis of PSC was confirmed.

> I would say the 2 year figure is very low, unless PSC goes

> unnoticed for a long time. Which can happen, not everyone has

> regular physicals or responds to minor aches and fatigue. But if

> you are trying to see where you stand as far as PSC's progression

> to liver failure goes, how long you have been diagnosed isn't a

> good measure.

This is quite true, as PSC by nature runs a course of anywhere between 10-15

years, if not longer in some cases. The article may have taken into account

only Payton's situation, since it would appear he was diagnosed late in his

disease history.

Spiro EMT-P

Liver Transplant - 8/1/97

RECYCLE YOURSELF! BE AN ORGAN DONOR!

" I'm not in the business. I am the business "

[Guest guest]

Tim,

I'm not sure about his LFTs and don't know how they determine the brain fog

score. But we are seeing the liver doctor, social worker and transplant

coordinator next Friday (3rd) and hope we'll be better informed by then. Phil

must be somewhat up there or I'm sure we wouldn't be going through this process.

I need to get a better handle on the LFTs and what they mean. Phil seems to be

satisfied with general knowledge. I don't know if that's denial or just his

attitude " Why worry over something you can't change " . Or maybe he's

just leaving the worrying up to me since I'm sooo good at it and since I keep

him informed on what's going on why dwell on it. He does accept any advice or

ideas on how to function with this disease and is willing to do anything that

will help to make the quality of either of our lives better. Thanks so much for

all your input you are sooo knowledgeable and willing to spend your time helping

us. We really appreciate it.

Peg

tromlein@... wrote:

> Peg,

> I agree with what said about PSC knowlegde in the 80's, it was

difficult to be diagnosed. High LFT would just baffle most docs at the time. I

know mine were and tried things which might address the cause but didn't. Even

now press releases contain statements like:

>

> " [PSC] blocks the bile ducts and leads to cirrhosis. The disease - the same

one that National Football League Hall of Fame running back Walter Payton has -

is marked by fatigue, followed by yellow in the pigment of the eyes and skin.

>

> Doctors say many patients with the condition survive only about two years

without a transplant. The cause of the disease is not known. " - AP 8-24-99

>

> I would say the 2 year figure is very low, unless PSC goes unnoticed for a

long time. Which can happen, not everyone has regular physicals or responds to

minor aches and fatigue. But if you are trying to see where you stand as far as

PSC's progression to liver failure goes, how long you have been diagnosed isn't

a good measure. Use the scoring system employed by UNOS, the

Child-Turcotte-Pugh (CTP) Scoring System to Assess Severity of Liver Disease,

which ranges from 5 to 15 points. (1 to 3 for each of 5 categories.)

>

> Points 1 2 3

>

> 1 Encephalopathy None 1 - 2 3 - 4

>

> 2 Ascites Absent Slight At least moderate

despite

> (or controlled by diuretic treatment

> diuretics)

>

> 3 Bilirubin (mg/dl)* <4 4-10 >10

>

> 4 Albumin (g/dl) >3.5 2.8-3.5 <2.8

>

> 5 Prothrombin time

> (secs. prolonged) <4 4-6 >6

> or (INR) <1.7 1.7-2.3 >2.3

>

> *values used are those for PSC and other cholestatic liver diseases.

>

> The first item is the brain fog index - you'll have to ask your doctor about

that one. If your pants no longer fit, you have some ascites. The last three

values are available from blood tests. A score of 10 put you at status 2B on the

UNOS transplant list. Other indicators are used to evaluate more severe failure

needed to be classed 2A.

>

> original article:/group//?start=3715

> > . . . Phil seems to have had this for a

> > long time because his ducts are so bad but didn't know it until he had a

blockage,

> > fever, jaundice etc. Just trying to figure out at what stage he's in. They

are

> > proceding to get him on the tx list. But he was only diagnosed this last

December.

> >

> > Peg

>

> ------------------------------------------------------------------------

>

> eGroups.com home: /group/

> - Simplifying group communications

[Guest guest]

Hello all,

Well i am back(at least most of me) I have no tonsils, adnoids or

salivary glands left int he back of my throat. Lots of pain and one

absolutely wonderful son!! has been wonderful through all of this

wanting to help mom because " Mom you are always there for me when my liver

is bad. "

I looked at the staging points and kinda added them up for 's liver

this morning. He totals an 8. What does this mean?? I feel so ignorant of

all of this stuff!! I am an EMT but sometimes I feel like it hinders more

than helps because I always try to second guess everything.

I am glad to hear that most all is peaceful if not well with most and I

am praying for everyone every day.

Hugs,

Marcy

[Guest guest]

Yes we're feeling that Phil was diagnosed after having it for many years. He

has had UC for 30 years and 2 years ago, after we were married, he had a blood

test for life insurance and had slightly elevated LFTs. Can you believe it, the

doctor didn't even suspect a problem and felt it was normal for a UCer. Wonder

if being on meds would have made a difference then. Anyway it jumped the

insurance premium up double but thank God we were still able to get it since the

PSC was not diagnosed at that time. At this point Phil's liver does not seemed

to be scared but his biliary tree is so severely scared and in so many places

that when the doc tried to do the ERCP the dye alone going into the ducts sent

Phil into screaming pain and then severe infection. Looking back on the

symptoms we can see how he had some that we never related to the disease such as

the doctors saying the hand, cramping and pain he had was arthritis.

Peg

Dspiro wrote:

> > Re: Brain Fog - Stage of PSC

> >

> >

> > Peg,

> > I agree with what said about PSC knowlegde in the 80's, it

> > was difficult to be diagnosed. High LFT would just baffle most

> > docs at the time.

>

> This is precisely what happened to me. It was quite by accident that I even

> went to my internist at the time. It was July of 1985, and I was out to

> dinner with my parents for my 26th birthday. I went to scratch the back of

> my neck, and found my entire cervical lymph chain swollen. I went to the doc

> the next day, he ran tests, and all my LFT's were elevated. They proceeded

> to do a see saw motion over the course of about 2 1/2 years, during which

> time my doc decided I had " nonA- nonB hepatitis " which we now know as Hep C.

> There was no test back then.

>

> He finally did send me to a hepatologist at Mt. Sinai, who looked at the

> LFT's and knew right away it wasn't non A - non B hep. After a needle

> biopsy, the correct diagnosis of PSC was confirmed.

>

> > I would say the 2 year figure is very low, unless PSC goes

> > unnoticed for a long time. Which can happen, not everyone has

> > regular physicals or responds to minor aches and fatigue. But if

> > you are trying to see where you stand as far as PSC's progression

> > to liver failure goes, how long you have been diagnosed isn't a

> > good measure.

>

> This is quite true, as PSC by nature runs a course of anywhere between 10-15

> years, if not longer in some cases. The article may have taken into account

> only Payton's situation, since it would appear he was diagnosed late in his

> disease history.

>

> Spiro EMT-P

>

> Liver Transplant - 8/1/97

> RECYCLE YOURSELF! BE AN ORGAN DONOR!

>

> " I'm not in the business. I am the business "

>

> ------------------------------------------------------------------------

>

> eGroups.com home: /group/

> - Simplifying group communications

[Guest guest]

Glad you made it through that yuky surgery. Isn't it fun. Hope your recovery

is quick and glad you have such a great caregiver.

Peg

Marcy wrote:

> Hello all,

>

> Well i am back(at least most of me) I have no tonsils, adnoids or

> salivary glands left int he back of my throat. Lots of pain and one

> absolutely wonderful son!! has been wonderful through all of this

> wanting to help mom because " Mom you are always there for me when my liver

> is bad. "

>

> I looked at the staging points and kinda added them up for 's liver

> this morning. He totals an 8. What does this mean?? I feel so ignorant of

> all of this stuff!! I am an EMT but sometimes I feel like it hinders more

> than helps because I always try to second guess everything.

>

> I am glad to hear that most all is peaceful if not well with most and I

> am praying for everyone every day.

>

> Hugs,

> Marcy

>

> ------------------------------------------------------------------------

>

> eGroups.com home: /group/

> - Simplifying group communications

[Guest guest]

Marcy,

I hope you have a quick recovery, I'm sure will be helping

you.

His CTP score means he has mild decrease in liver function. It

would qualify him to get listed for a transplant, but whether

that is desireable or not would depend on just how he's feeling.

A higher score (10 +) would indicate that you would want tobe

listed.

Tim

--- Marcy wrote:

> I looked at the staging points and kinda added them up for

> 's liver

> this morning. He totals an 8. What does this mean??

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