Noah's day in Pitt w/ Pulmonology

January 31, 2007

,

I believe there was a post about how Urso can cause a cough. If I'm way out in left field (my memory isn't very good!) someone, please, feel free to tell me. There were months that I was dealing with a chronic cough and I discovered that Urso can have that affect. I wish I could remember, without doubting myself. Sorry, but at least check into it.

It was good to talk to you yesterday.

Love,

January 31, 2007

,

I believe there was a post about how Urso can cause a cough. If I'm way out in left field (my memory isn't very good!) someone, please, feel free to tell me. There were months that I was dealing with a chronic cough and I discovered that Urso can have that affect. I wish I could remember, without doubting myself. Sorry, but at least check into it.

It was good to talk to you yesterday.

Love,

January 31, 2007

,

I believe there was a post about how Urso can cause a cough. If I'm way out in left field (my memory isn't very good!) someone, please, feel free to tell me. There were months that I was dealing with a chronic cough and I discovered that Urso can have that affect. I wish I could remember, without doubting myself. Sorry, but at least check into it.

It was good to talk to you yesterday.

Love,

January 31, 2007

Carolyn,

Right on!!! Like you, and I have thought (for quite some time) that Noah was suffering from HE. I know believed us, but just couldn't get anyone to admit it was even possible (especially since his ammonia level was fine). My virtually useless tx team (who acts like I'm making up everything that comes out of my mouth) told me they thought I had HE when I told them I got lost driving to a friends (who has lived in the same house for 15 years!). When I asked if they needed to check my ammonia levels she immediately said no, and explained that they have patients with high levels and no HE and many with normal levels who undeniably have HE. This is one time I was grateful for them because they started Lactulose that day. When the HE got worse they switched to the Xifaxin, again, without questioning me. Thank God. I could not function without Xifaxin -- I got to the point where I couldn't perform even the smallest of tasks correctly. It made me cry.

While we're discussing HE, there's something that I have been suffering with and after talking to , and others, I realize I'm not alone. I have been dealing with olfactory hallucinations. Yes, I smell things that don't exist. It took me a while to realize it, but in a room full of people that don't smell a thing, it becomes quite evident. I mostly smell certain foods, and the smell of something burning. I had a house burn down in 1985 so that one REALLY freaked me out the first few times!!! Now, I double check things and then relax when I don't see flames. :-) I don't know if this is something that many of you have dealt with but I thought I'd mention just in case someone has just to let you know that you're not crazy, it does happen. Quick funny story, I prayed that God would let me stop 'smelling' refried beans and replace it with chocolate. (Hey, you can't blame a gal!) The next morning I'm in the shower and all I can smell is poop. I was so disgusted and was asking God why he thought that was funny, because now I wanted to throw up. My entire shower I'm nauseated and irked. Well, I get out of the shower and I walk to the door of my bedroom and there is a pile of poop! No, not a 'vision,' real poop. and Steve had spent the night and brought their dog. Burt had blessed my bedroom floor with the great ca-ca. I laughed so hard I thought I was going to rupture something. I was never so glad to see poop in my life!!! :-) The things I find amusing these days, surprise even me!

Hope you get over your cold soon!

(MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs

January 31, 2007

I don't know if it means ESLD or not. I know that between that and the varices that were found in Oct., the tx team seemed more concerned about the status of my health. That's all I know.

January 31, 2007

HMMM! Urso and cough...interesting...I wonder...dang the list sure

does get long. How do we keep it all straight? Good talking to you

yesterday too! MWAH!

It sure did make my drive back from Pitt easier! It was snowing like

crazy BTW!

January 31, 2007

HMMM! Urso and cough...interesting...I wonder...dang the list sure

does get long. How do we keep it all straight? Good talking to you

yesterday too! MWAH!

It sure did make my drive back from Pitt easier! It was snowing like

crazy BTW!

January 31, 2007

HMMM! Urso and cough...interesting...I wonder...dang the list sure

does get long. How do we keep it all straight? Good talking to you

yesterday too! MWAH!

It sure did make my drive back from Pitt easier! It was snowing like

crazy BTW!

January 31, 2007

Hi ,

For what it's worth, here's my HE experience. I realized it was a

possibility for me after some things which & Deb in VA wrote

last year. Then someone (Barb?) posted the link to the HE chart showing

the stages and symptoms of each stage. It all felt horribly familiar to me.

We printed out the chart and took it to my next dr. appt. and told him

we thought I was dealing with HE. At first, he very gently said " Oh no,

he didn't feel I was experiencing HE. " (but he said it in a very kind

and gentle way ... not dismissing our concerns at all) We showed him

the chart and pointed out which symptoms I was experiencing. He became

a bit concerned and ordered an ammonia level immediately. Next day, his

nurse called and said the dr. wanted me on Kristalose immediately!!!

Kristalose helped, but not hugely. After some months he switched me to

the Xifaxen which has been a miracle drug for us. My ammonia levels

remain high, but I am now functional once more. At my worst, I couldn't

figure out how to write a check and couldn't pour water from one

container to another (which resulted in a scalded hand when making tea

one day). Now, I manage pretty well, though my memory is still poor and

mentally I go downhill pretty quickly whenever I get tired.

Personally, I had been thinking for awhile that Noah must be

experiencing some HE, and have been astonished at the reactions of his

medical team. I think your pulmonologist is right on target with this.

You shouldn't have to be in a semi-coma to be diagnosed and treated

for HE!!!!!

Hang in there, girl, and keep on jerking their chains until they pay

attention!!!

I have a miserable cold right now, but just as soon as I feel up to

talking I'll give you a call.

Hugs,

Carolyn B. in SC

January 31, 2007

MO425@... wrote:

>

> While we're discussing HE, there's something that I have been suffering

> with and after talking to , and others, I realize I'm not alone.

> I have been dealing with olfactory hallucinations.

, I'm doing the very same thing!!!! Usually it's a burning or

acrid smell ... sometimes tobacco smoke ... yesterday I was sure our gas

heating stove had sprung a leak! Like you, I tend to freak out over a

burning smell because when I was in my teens the house we were staying

in was set on fire one night (arson).

Do you find it also affects your sense of taste? There are times when I

will swear to my hubby that the milk has spoiled or that some food has a

harsh metallic whang to it. It never dawned on me that this could be

connected to the HE.

Love your story about the poop smell! LOL!! Isn't it amazing where we

can find humor nowadays?

Hugs,

Carolyn B. in SC

January 31, 2007

-----Original

Message----- What does HE mean to you all who have been through

this? To me it means a treatment so that he can function? Does it mean more? ESLD?

January 31, 2007

-----Original Message----- What does HE mean to you all who have been

through this? To me it means a treatment so that he can function? Does

it mean more? ESLD?

To use your own words – don't shoot the messenger.

I am limited by Ken's experience with HE and am not a doctor. From

what you have told us, Noah's LFT's, glucose, ammonia and albumin are

all within normal limits. His scopes looked good, his growth is very

near normal and he doesn't have cirrhosis. The doctors at Pitt say

his problems are not liver related. Adding all that together, I would

say he couldn't have HE, but I'm not a doctor, so I guess my

suggestion would be to trust what the doctors are telling you.

Here is some info I found on HE -

HEPATIC ENCEPHALOPATHY Hepatic encephalopathy refers to a condition of

brain and nervous system damage caused by liver (hepatic) failure.

Diseases that damage the liver causing impairment of the

detoxification and functional capabilities of the liver can cause

hepatic encephalopathy. Examples of disorders that decrease liver

function are hepatitis or cirrhosis. Impairment in the detoxification

capabilities of the liver causes accumulation of toxic chemicals in

the blood such as ammonia, in addition to many other impurities that

all collectively cause damage to the nervous system.

Diagnosis

The diagnosis of encephalopathy depends on the presence of acute or

chronic liver disease; altered mental state such as confusion, stupor,

or coma; symptoms of central nervous system damage; and abnormal wave

patterns on an encephalogram. Diagnostic tests that may be utilized to

establish the diagnosis include, but are not to limited to: complete

blood count; liver function tests; ammonia and glucose levels; lactate

levels (often elevated due to impaired tissue perfusion and because of

decreased clearance by the liver); arterial blood gases (may reveal

hypoxemia); kidney function tests; blood cultures (to detect

infectious agents); virology testing (for hepatitis); neuroimaging

studies; and ultrasound studies.

Here is another web site with very good info:

http://digestive-disorders.health-cares.net/liver-encephalopathy-causes.php

HTH Barb in Texas

January 31, 2007

Barb, I'm not sure what's up, but your last 2 messages have come through

as blank for me, except for the one line you are quoting from 's

post. I checked the website and they are blank there as well. Have

Maureen's computer gremlins moved to Texas? :-)

Regards,

Carolyn B. in SC

January 31, 2007

Barb,

I won't shoot, I promise--peace!

I want nothing more than for him not to have NO HE, but in dealing

with him on a daily basis...there IS something going on.

Forgetfulness, shaking, itching, personality changes...and I don't

want to forget something that came up on Liver Families that I had

actually forgotten that Urso can bring LFTs back to normal...so yes he

can look good.

To be honest, I think it has been taking so long to get from A to B,

meaning my call to the coordinator and then they need a few more calls

about his personality and behavior and getting up in the middle of the

night...etc...before they actually call or fax of Lord help us snail

mail labs for us...LOL! We seem to miss either the high bile acids or

whatever is up! AND as we have all learned from some paper on here

recently, ammonia levels are not THE indicator of that dreaded

HE...but behavior.

I have to tell you, it was the shaking, and the inability of him to

get off the couch the other night that was the worst! I was scared to

death. He was wigging out. Amy said next time we should head to the

ER. I just wanted to get him back. He was not in there at all.

How is Ken faring these days?

Blessings,

January 31, 2007

Barb,

It was mentioned that you had given a

chart on HE symptoms in the past, any chance that you can repost the chart?

Thank you,

LINDA

(Mom of Suzanne,

17; IBD 1/04; PSC 3/04)

January 31, 2007

> Barb,

>

> It was mentioned that you had given a chart on HE symptoms in the past,

> any chance that you can repost the chart?

>

Hi ,

I mentioned that I think Barb was the one who posted it originally, I

just can't remember for sure! I'm thinking it was put into the files on

the group website but I don't see it, so I'm attaching a copy. I know

that anyone reading posts on the website won't be able to see it, but if

anyone wants it, I'll happily email it to you.

Regards,

Carolyn B. in SC

January 31, 2007

> Barb,

>

> It was mentioned that you had given a chart on HE symptoms in the past,

> any chance that you can repost the chart?

>

Hi ,

I mentioned that I think Barb was the one who posted it originally, I

just can't remember for sure! I'm thinking it was put into the files on

the group website but I don't see it, so I'm attaching a copy. I know

that anyone reading posts on the website won't be able to see it, but if

anyone wants it, I'll happily email it to you.

Regards,

Carolyn B. in SC

January 31, 2007

> Barb,

>

> It was mentioned that you had given a chart on HE symptoms in the past,

> any chance that you can repost the chart?

>

Hi ,

I mentioned that I think Barb was the one who posted it originally, I

just can't remember for sure! I'm thinking it was put into the files on

the group website but I don't see it, so I'm attaching a copy. I know

that anyone reading posts on the website won't be able to see it, but if

anyone wants it, I'll happily email it to you.

Regards,

Carolyn B. in SC

February 2, 2007

Hi, . I'm so sorry little Noah is having HE problems and that

you're having trouble getting the doctors to listen. I suggest that

you go in to the doctor's office and say something to the effect

of, " so, how are you going to treat his HE " - bring the articles,

chart, etc. with you and be armed with your two or three best stories.

Then, if they express concern that they don't want to treat it cuz

they're not sure of the diagnosis, I think you're right to take the

high-dorse-Urso tack, and ask what they think the harm to him would

be. Also, I think Joanne's suggestion that a psychiatrist could be

helpful is a good one to bring up - something like, great, if you think

it's not HE then obviously it won't be helped by the medication you're

going to give him. Why don't you give us a referral to a psychiatrist

and, if the HE medication hasn't helped by then, hopefully s/he will

help us figure out what's going on. Hopefully if you are forceful but

still seem open-minded they will give you the medication Noah seems to

need so much. good luck,

nina

a good psychiatrist may be able to help sort out complex issues like

this)

February 2, 2007