RE: A little disappointed and confused

[Guest guest]

Oh, Deb, you hang in there!!! And you are multi-listing, aren't you???

You may have said that and I got interrupted and missed it in your

post...I don't want to sound bossy, Deb, but YOU know these things and

when you go to the doc YOU reinforce you want answers...they get all

caught up in paperwork, etc. and sometimes let " important things to us "

slip...I was always respectful and NICE, but I always got my

answers...of course I didn't start the process out that way...I learned

eventually throughout Bobby's four years!!!ha We don't want you to move

to a " lurker " status...we want to hear from you!!! We're all here for

you!!!

Bobby & Anne

A little disappointed and confused

Hi all,

I started to post this the other night, but then couldn't get my

thoughts together - felt like I was whining a bit. I probably still

am, sorry. First, one of my transplant centers recently changed the

form that they use to communicate about MELD scores. The form now

also includes a Child-Turcotte Pugh assessment, sodium levels, and

information on my previous lower score. All of this information is

very helpful, but since this was the first time I'd received it, I

was a little overwhelmed. (No one went over the information with my

either by phone or in person.)

Although I'd mentioned my memory problems to the PA who saw me last,

she had not told me her thoughts on my mental status (just took

notes). Since she hadn't said anything was wrong - I took her silence

as dispelling my fears. Well, I had it backwards, I'm now diagnosed

with mild encephalopathy. Although I've had increased memory

problems, I'm having trouble convincing my husband, the person who

has been with me for nearly fifteen years (all of my adult life),

that there's something amiss. Even with the PA's assessment, he still

isn't convinced since I function so well most of the time. I feel

very frustrated trying to determine whether I have this problem or

not since the diagnosis is so subjective (I still " pass " the flap

test). I feel uncomfortable taking one person's word for it. Is there

any sort of a memory test that I can do to find out if I have this

problem?

Mostly, I've noticed difficulties in trying to remember what word I

want to use - especially if it is a long one. I've also forgotten

where one doctor's office was, and I had to call my husband for help.

Other times, I've had to look up suite numbers of other doctors when

entering their buildings. I do things like bring one bunch of

information with me, and leave my planning book behind. I've only

once gotten so confused that I couldn't recognize my car in a parking

lot, and that was when I was going through an EXTREME bought of low

blood sugar (I had tunnel vision and was very near passing out).

Perhaps some of my annoyance with these symptoms is because I used to

be so sharp. I used to be able to juggle three to five things at once

at work, but I know I could never do that now.

Second, I had a conversation with my mother this week in which she

told me that she thinks my symptoms of PSC started in high school.

Once she refreshed my memory, I agreed this was possible. During my

senior year, I had a bought of " fatigue/exhaustion " when my

pediatrician investigated mono, but came up without a diagnosis. I

have my medical records from him, but the labs he took aren't

included. So, I'll never know if I had a bump in liver enzymes back

then or not. I know that I had autoimmune markers showing up in my

blood my sophomore year of high school because my mom's

rheumatologist drew my blood to help diagnose pain in my hands (it

was tendonitis). If I started PSC in high school, this puts my total

time as a PSCer as 15 to 17 years, not the 10 I was counting from my

first cholangitis attack in college. This might explain why my liver

is starting to fail now and not later. I guess we all want more time

before things become persistantly uncomfortable/difficult.

So, I'm a bit perplexed and feeling upset that while my MELD score

seems to be stabilizing and my bilirubin is dropping, my symptoms of

ESLD are progressing. I thought it was only fair that I let the group

as a whole know about my mental state since I post so frequently,

though if this keeps up, I'll probably move to lurker status...

Hope everyone has a wonderful holiday season and a happy new year!

I'm doing my best to maintain my holiday spirit despite these

realizations. Our neighborhood holiday party was fantastic - ten kids

ages 2-6 decorating gingerbread men that I'd made was just too much

fun! Appologies for the length -

Deb in VA

PSC 1998, UC 1999, Listed Ltx 2001, MELD 17

[Guest guest]

Hang in there Deb. We are all learning that the path you are on can

change at any time. Try to find some enjoyment in everyday and let some

of the day to day grind fall to your family, friends and your medical

worries to your medical team. Easier said than done, I know but when we

turn the focus onto something enjoyable it is automatically a mood

lifter. Watch a really funny movie with the kids, or read a really good

book that takes you away for awhile. By the way they say that a good

belly laugh massages the internal organs! In fact , why not go for a

good massage?

Take care,

Lee

[Guest guest]

Deb,

We're all in this with you. I certainly understand why you're feeling so overwhelmed, but I want to remind you to keep communicating with all of us. That's what we're here for, and we all want to continue hearing from you. It always helps me to remember all the members who constantly repeat the fact that PSC's progression is so unpredictable for all of us. ( You mentioned your concern about the new information that perhaps you've been a PSCer for 15-17 years instead of the 10 years you had previously thought. In my experience....I had 14-15 years of unexplained elevated LFTs with no symptoms until my first bout with cholangitis in 2003. This finally led to my PSC diagnosis and 6 difficult months fighting repeated cholangitis attacks, ERCPs with stenting, etc., but right now, life is good. ) Please try to focus on positive experiences like this that most of us can relate to you. Hang in there.

Ricky

A little disappointed and confused

Hi all,I started to post this the other night, but then couldn't get my thoughts together - felt like I was whining a bit. I probably still am, sorry. First, one of my transplant centers recently changed the form that they use to communicate about MELD scores. The form now also includes a Child-Turcotte Pugh assessment, sodium levels, and information on my previous lower score. All of this information is very helpful, but since this was the first time I'd received it, I was a little overwhelmed. (No one went over the information with my either by phone or in person.) Although I'd mentioned my memory problems to the PA who saw me last, she had not told me her thoughts on my mental status (just took notes). Since she hadn't said anything was wrong - I took her silence as dispelling my fears. Well, I had it backwards, I'm now diagnosed with mild encephalopathy. Although I've had increased memory problems, I'm having trouble convincing my husband, the person who has been with me for nearly fifteen years (all of my adult life), that there's something amiss. Even with the PA's assessment, he still isn't convinced since I function so well most of the time. I feel very frustrated trying to determine whether I have this problem or not since the diagnosis is so subjective (I still "pass" the flap test). I feel uncomfortable taking one person's word for it. Is there any sort of a memory test that I can do to find out if I have this problem? Mostly, I've noticed difficulties in trying to remember what word I want to use - especially if it is a long one. I've also forgotten where one doctor's office was, and I had to call my husband for help. Other times, I've had to look up suite numbers of other doctors when entering their buildings. I do things like bring one bunch of information with me, and leave my planning book behind. I've only once gotten so confused that I couldn't recognize my car in a parking lot, and that was when I was going through an EXTREME bought of low blood sugar (I had tunnel vision and was very near passing out). Perhaps some of my annoyance with these symptoms is because I used to be so sharp. I used to be able to juggle three to five things at once at work, but I know I could never do that now.Second, I had a conversation with my mother this week in which she told me that she thinks my symptoms of PSC started in high school. Once she refreshed my memory, I agreed this was possible. During my senior year, I had a bought of "fatigue/exhaustion" when my pediatrician investigated mono, but came up without a diagnosis. I have my medical records from him, but the labs he took aren't included. So, I'll never know if I had a bump in liver enzymes back then or not. I know that I had autoimmune markers showing up in my blood my sophomore year of high school because my mom's rheumatologist drew my blood to help diagnose pain in my hands (it was tendonitis). If I started PSC in high school, this puts my total time as a PSCer as 15 to 17 years, not the 10 I was counting from my first cholangitis attack in college. This might explain why my liver is starting to fail now and not later. I guess we all want more time before things become persistantly uncomfortable/difficult.So, I'm a bit perplexed and feeling upset that while my MELD score seems to be stabilizing and my bilirubin is dropping, my symptoms of ESLD are progressing. I thought it was only fair that I let the group as a whole know about my mental state since I post so frequently, though if this keeps up, I'll probably move to lurker status...Hope everyone has a wonderful holiday season and a happy new year! I'm doing my best to maintain my holiday spirit despite these realizations. Our neighborhood holiday party was fantastic - ten kids ages 2-6 decorating gingerbread men that I'd made was just too much fun! Appologies for the length -Deb in VAPSC 1998, UC 1999, Listed Ltx 2001, MELD 17

[Guest guest]

Hang in, Deb! You know we're all here for you whenever you need us.

One of the things that makes this group so great is we all know that

" But for the grace of God, there go I. "

If it means anything, one of the first things my GP told me when I

presented with off-the-chart elevated liver labs was that if they'd

been like that for very long, I should be feeling disoriented and

awkward. My wife thought that was just the way I was all the time.

;-) Getting my labs back under control cleared the fog pretty quickly.

Just remember, whatever you need... whenever you need it... one of us

will find a way.

VERY Merry Christmas,

Bill

PSC '00, Listed Tx 11/04

[Guest guest]

Deb

Why not give yourself time to digest all this new info, and let the

group be of support to you. I certainly have benifited from your

posts. Hang in there. Tough times never last but tough people do.

Best Holiday Wishes

jd

UC 1973, Jpouch 2000, Pouchitis 2001, PSC 10-04

ston City IL

krmpotich@...

[Guest guest]

Deb, sorry to hear your troubles. Let us suffer together - I just

got denied Life and also Disability insurances.

-Stef

[Guest guest]

-Hi Deb,

I am sorry to hear your agnst and it is so okay to whine a bit. WHat

you describe in your bouts of mild confusion are classic to the

stories I have heard in our support group and what I know from my

partner's progression of encephalopathy. The good thing is that it

can usually be treated effectively with a medicine that binds to the

ammonia and allows you to pass it out. I would strongly encourage you

to follow up with yoru GI about this... usually, its the caregivers

who notice it first, but in your case??? The thing to be very careful

about is driving and I would suggest you have someone ride with you

periodically to see if you are okay.. I know my partner was struggling

with driving for along time before I knew it, in fact, it was the

doctor who told her she had to stop driving. I am not bringing this

up as another blow, but just a caution and to follow up further. I am

glad to here you can enjoy those precious moments that kids create.

Funny that you mention Mono... Deb had that too pre-diagnosis, at age

18. Misdiagnosed with Hepatitis at age 24. Diagnosed with UC at age

28. Diagnosed with PSC at age 35. Diagnosed Type II Diabetes at 39.

Currently age 51. Deb has felt really sick for a long time and even

early on, her labs often did not reflect how she felt... bad labs and

felt okay and sometimes normal labs and felt awful... it doesn't make

sense.

Feel free to write my in private if you want to converse on

encephalopathy more... we have struggled with that aspect for over two

years and Deb is one of the unfortunate ones who has not had great

benefit from the meds. She tried them all.

Kate (in seattle)

[Guest guest]

-Hi Deb,

I am sorry to hear your agnst and it is so okay to whine a bit. WHat

you describe in your bouts of mild confusion are classic to the

stories I have heard in our support group and what I know from my

partner's progression of encephalopathy. The good thing is that it

can usually be treated effectively with a medicine that binds to the

ammonia and allows you to pass it out. I would strongly encourage you

to follow up with yoru GI about this... usually, its the caregivers

who notice it first, but in your case??? The thing to be very careful

about is driving and I would suggest you have someone ride with you

periodically to see if you are okay.. I know my partner was struggling

with driving for along time before I knew it, in fact, it was the

doctor who told her she had to stop driving. I am not bringing this

up as another blow, but just a caution and to follow up further. I am

glad to here you can enjoy those precious moments that kids create.

Funny that you mention Mono... Deb had that too pre-diagnosis, at age

18. Misdiagnosed with Hepatitis at age 24. Diagnosed with UC at age

28. Diagnosed with PSC at age 35. Diagnosed Type II Diabetes at 39.

Currently age 51. Deb has felt really sick for a long time and even

early on, her labs often did not reflect how she felt... bad labs and

felt okay and sometimes normal labs and felt awful... it doesn't make

sense.

Feel free to write my in private if you want to converse on

encephalopathy more... we have struggled with that aspect for over two

years and Deb is one of the unfortunate ones who has not had great

benefit from the meds. She tried them all.

Kate (in seattle)

[Guest guest]

-Hi Deb,

I am sorry to hear your agnst and it is so okay to whine a bit. WHat

you describe in your bouts of mild confusion are classic to the

stories I have heard in our support group and what I know from my

partner's progression of encephalopathy. The good thing is that it

can usually be treated effectively with a medicine that binds to the

ammonia and allows you to pass it out. I would strongly encourage you

to follow up with yoru GI about this... usually, its the caregivers

who notice it first, but in your case??? The thing to be very careful

about is driving and I would suggest you have someone ride with you

periodically to see if you are okay.. I know my partner was struggling

with driving for along time before I knew it, in fact, it was the

doctor who told her she had to stop driving. I am not bringing this

up as another blow, but just a caution and to follow up further. I am

glad to here you can enjoy those precious moments that kids create.

Funny that you mention Mono... Deb had that too pre-diagnosis, at age

18. Misdiagnosed with Hepatitis at age 24. Diagnosed with UC at age

28. Diagnosed with PSC at age 35. Diagnosed Type II Diabetes at 39.

Currently age 51. Deb has felt really sick for a long time and even

early on, her labs often did not reflect how she felt... bad labs and

felt okay and sometimes normal labs and felt awful... it doesn't make

sense.

Feel free to write my in private if you want to converse on

encephalopathy more... we have struggled with that aspect for over two

years and Deb is one of the unfortunate ones who has not had great

benefit from the meds. She tried them all.

Kate (in seattle)

[Guest guest]

Thanks to all who responded to my post. I talked to the coordinator

and learned the origin of the scoring and how they do it. I'm not

near as worried as I was originally. Evidently, they err on the side

of caution or overstating the problem rather than risk understating

it. Now that I'm over the shock, I'm glad that it appeared on the

report because I've had to take a look at what I'm dealing with now.

" Fog " is exactly what I feel much of the time. I've always been one

of those people who moves full steam ahead, thinking and acting very

quickly. I've had to slow down, and it has been a gradual thing, so

that's probably why my husband hasn't clued into it. Also, my GI told

him to look for the worst symptoms, not the initial ones, so perhaps

he thinks I'm fine until I start walking into walls? Kate, I will be

careful driving, and I've already begun to limit it. I just don't

feel safe doing long trips, and whenever possible, my husband drives.

Funny how you compensate without even realizing that you're doing so

with this disease! Also, what you said about labs is so true.

Although my symptoms do change when my labs get even worse, I felt

pretty rotten today, and I'm sure my labs wouldn't have showed it.

Stefan, I'm so sorry you were denied insurance - what a blow at this

important time (becoming a dad - congrats if I haven't said it!).

Perhaps in the near future, you will be hired as part of a large

hospital or practice that offers life and disability guaranteed up to

a certain amount for employees? I was very lucky that my former job

offered up to $100K in life insurance without medical screening, and

it was portable when one left the company. It isn't a huge amount,

but it is something. Hang in there...

Thanks for the pep talk! After spending the day fatigued on the

couch, I was able to spend a wonderful evening with my extended

family, and then to come home to this family with just the help I

needed - wow. It was just the emotional lift that I needed! Thanks!

Deb in VA

PSC 1998, UC 1999, Listed Ltx 2001, MELD 17