Re: hello

[Guest guest]

Hi Beth,

Welcome to the group, but sorry to see you here. This greeting is

a little late as I'm still trying to play catch-up on my messages. I

live in Grand Blanc, Mi and recently had a tx after 25+ yrs with PSC

and UC. You have come to the right place for knowledge, hope,

compassion and just plain listening. We have experts in all those

fields.

Tim L

Tim Long UC / PSC 25+ yrs TX 8/2/02

married 36 yrs, 2 daughters & 2 grandkids

[Guest guest]

Tim,

I am amazed that you lived with both PSC

and UC for 25 years before transplantation. How did your diagnosis come about?

What treatments/meds kept you going for 25 years? In my case, I went from

diagnosis to the brink of death in a little more than 4 years before

transplantation gave me back my life 17 years ago. The bad news is, the PSC has

recurred in my new liver, and I am suddenly again at the point where I was in

August of ’85. The good news has been that mine has been one of the

uncommon cases which is not associated with inflammatory

bowel disease. Between the typical list of symptoms(low

energy, encephalopathy, itching, etc.), the small pharmacy of meds that have be

taken at specific intervals, and the need to eat and well twice as often as

healthy people in order to recover the weight and muscle loss that resulted

from the sudden onset of the recurrence of PSC in August, I have found it

necessary to go on Disability. I can’t imagine living like this for more

than a couple of years.

Steve

Rahn

L Tx

9/85; Waiting for Re-Tx

" Face

the Worst, Expect the Best,

Do

the Most, Forget the Rest "

Re: Hello

Hi Beth,

Welcome to the group, but

sorry to see you here. This greeting is

a little late as I'm still trying to play catch-up

on my messages. I

live in Grand Blanc, Mi and recently had a tx

after 25+ yrs with PSC

and UC. You have come to the right place for

knowledge, hope,

compassion and just plain listening. We have

experts in all those

fields.

Tim L

Tim Long UC / PSC 25+ yrs TX 8/2/02

married 36 yrs, 2 daughters & 2 grandkids

Your use of

Yahoo! Groups is subject to the Yahoo!

Terms of Service.

[Guest guest]

Steve,

I was one of the lucky ones, my PSC progressed very slowly even

though I was mis diagnosed as having PBC. The thing that drove me nuts

for years was the itching, and that finally drove me to change my ins

and insist that I be sent to a liver specialist at Ann Arbor. He ran a

few tests along with an ERCP and colonoscopy and informedme that I had

PSC and UC. Oh yeah, forgot, my other DR had told me I had IBS not

UC. He put me on Rifampin, for the itching and Pentasa for the UC.

Within days I quit itching and in a short time my UC came under

control. Twenty years of terrible itching and diarrhea that I didn't

need to have. About 6 yrs later I was put on the list and received my

liver a yr later. You are indeed fortunate not to have a bowel problem.

Even though your PSC is back,I think that it is slower moving the

second time, maybe due to the meds.? Sorry to hear that yours is back

and hope all goes well.

Tim Long UC / PSC 25+ yrs TX 8/2/02

married 36 yrs, 2 daughters & 2 grandkids

[Guest guest]

Tim,

Unfortunately, when my PSC recurred, it

moved very quickly (in retrospect, within 6 months) from not present to ESLD.

But then, not very much about the course of my disease has been ordinary from

the beginning, so why should I expect this to be different? J

I only ever had limited success with Questran for itching previously, but my Hep

insisted that we try it first. When I see on Wednesday I’m going insist

that we try something else. It’s bad enough that I can’t do any

significant work for more than a couple of hours without needing a nap, and

have to write myself a note when I go downstairs so that I don’t forget

why I’m down there…but I’m about fed up with not being able

to sleep because of the itching.

Didn’t seem like it at the time, but

I was lucky that they had to open me up to remove my gallbladder just a few

months after I first went to the doctor in 1981, because they had misdiagnosed

me as PBC also, but when they removed the gallbladder they were quickly aware

of their error.

I’m hoping my time on the list won’t

too long – I want my life back. In the meantime, I’ll hang out

here, and continue to work on my pet project – organ donor awareness.

Thanks for your support.

Steve

Rahn

L Tx

9/85; Waiting for Re-Tx

" Face

the Worst, Expect the Best,

Do

the Most, Forget the Rest "

Re: RE:

Hello

Steve,

I was one of the lucky

ones, my PSC progressed very slowly even

though I was mis diagnosed as having PBC.

The thing that drove me nuts

for years was the itching, and that finally drove

me to change my ins

and insist that I be sent to a liver specialist at

Ann Arbor. He ran a

few tests along with an ERCP and colonoscopy and

informedme that I had

PSC and UC. Oh yeah, forgot, my other DR had

told me I had IBS not

UC. He put me on Rifampin, for the itching

and Pentasa for the UC.

Within days I quit itching and in a short time my

UC came under

control. Twenty years of terrible itching

and diarrhea that I didn't

need to have. About 6 yrs later I was put on

the list and received my

liver a yr later. You are indeed fortunate not to

have a bowel problem.

Even though your PSC is back,I think that it is

slower moving the

second time, maybe due to the meds.? Sorry to hear

that yours is back

and hope all goes well.

Tim Long UC / PSC 25+ yrs TX 8/2/02

married 36 yrs, 2 daughters & 2 grandkids

Your use of

Yahoo! Groups is subject to the Yahoo!

Terms of Service.

[Guest guest]

So, still praying for you all and wishing you a

blessed holiday.

Ruth and family

Same to you Ruth, God give you a special blessing this Christmas.

Love and Hugs,

Barbara (UK)

[Guest guest]

Welcome Rosella!

> Well, this is really scary. I have been participating in a group for

> people with BPD children,

> and that has been good and bad--what else?!--but not as scary as this,

> because now I'm

> going to try to hang out with people who are themselves the children of a

> BPD. In my

> case, the family configuration is even weirder, and I will admit to you

> that I'm not 100%

> positive that BPD would be the diagnosis for my mother....it might be NPD.

> In fact, I think

> it's both, and I think that is probably pretty common. My father is NPD,

> something I didn't

> realize until my mother died and his true nature came out (he had to dance

> attendance on

> her for so many years, I suppose it was only when she left that he could

> show his true

> colors. So a NPD father and a BPD/NPD mother. Oh--my grandfather, I'm

> entirely sure,

> was NPD/BPD/antisocial, and all his children were nuts in some way: not

> only my mother,

> but there was alcoholism, suicide, personality disorders, severe

> depression, etc., etc., etc.

> on my mother's side of the family.

>

> I had an adopted sister who was BPD/antisocial (truly). I married a BPD

> man, and left him

> when the baby we had was 14 months old. She is my BPD daughter.

>

> Are you confused yet? I sure am. I feel like a personality - disordered

> sandwich. Oh, and

> there's me: I'm the " lost child, " the codependent, the scapegoat, the

> survivor. Pia Mellody

> wrote a book about codependency, and she actually called codependency a

> personality

> disorder. That seems to be pushing it just a bit too far, but it was an

> interesting idea,

> because we really do get so terribly sick trying to " fix " everyone around

> us, huh?

>

> Anyway, I am now married to a wonderful man for some 20 years, and we have

> an entirely

> normal, lovely daughter. My BPD daughter hangs around the fringes--by her

> choice--

> trying to " split " and throwing tantrums, etc. She had her first baby a year

> ago, and I'm

> pretty sure her husband is BPD. Anyway, what seems terrifying and really

> interesting,

> here, is that this is a list for people who were raised by a BPD. I will

> look forward to

> reading your posts and writing some of my own, and I can certainly say that

> the few I've

> already looked at have left me nodding and saying, " Yeah, that's how it

> is. "

>

> Good to meet you.

>

> Rosella

>

>

>

[Guest guest]

Welcome!  My nada was never officially diagnosed but I am certain she is BPD. 

My daughter, now 25 was diagnosed as BPD and Bi-polar about a year ago.  She

follows up with the psychiatrist for the meds, which helps but sees no need for

therapy, even though I have offered to pay (I pay for the meds and

psychiatrist).  Typical borderline, to her way of thinking she has no problems. 

She has a beautiful daughter, now five, and my husband and I are raising her

since my daughter is not a loving mother; I too feel " sandwiched " by personality

disorders!  My daughter comes home one evening a week to see her daughter

(supervised) and she would get out of that if she could.  It is sad to see how

quickly she became bored with her child, like a new puppy that is no fun once it

gets a little older.  This is a wonderful place to find support and to realize

that you are not alone!

> Well, this is really scary. I have been participating in a group for

> people with BPD children,

> and that has been good and bad--what else?!--but not as scary as this,

> because now I'm

> going to try to hang out with people who are themselves the children of a

> BPD. In my

> case, the family configuration is even weirder, and I will admit to you

> that I'm not 100%

> positive that BPD would be the diagnosis for my mother....it might be NPD.

> In fact, I think

> it's both, and I think that is probably pretty common. My father is NPD,

> something I didn't

> realize until my mother died and his true nature came out (he had to dance

> attendance on

> her for so many years, I suppose it was only when she left that he could

> show his true

> colors. So a NPD father and a BPD/NPD mother. Oh--my grandfather, I'm

> entirely sure,

> was NPD/BPD/antisocial, and all his children were nuts in some way: not

> only my mother,

> but there was alcoholism, suicide, personality disorders, severe

> depression, etc., etc., etc.

> on my mother's side of the family.

>

> I had an adopted sister who was BPD/antisocial (truly). I married a BPD

> man, and left him

> when the baby we had was 14 months old. She is my BPD daughter.

>

> Are you confused yet? I sure am. I feel like a personality - disordered

> sandwich. Oh, and

> there's me: I'm the " lost child, " the codependent, the scapegoat, the

> survivor. Pia Mellody

> wrote a book about codependency, and she actually called codependency a

> personality

> disorder. That seems to be pushing it just a bit too far, but it was an

> interesting idea,

> because we really do get so terribly sick trying to " fix " everyone around

> us, huh?

>

> Anyway, I am now married to a wonderful man for some 20 years, and we have

> an entirely

> normal, lovely daughter. My BPD daughter hangs around the fringes--by her

> choice--

> trying to " split " and throwing tantrums, etc. She had her first baby a year

> ago, and I'm

> pretty sure her husband is BPD. Anyway, what seems terrifying and really

> interesting,

> here, is that this is a list for people who were raised by a BPD. I will

> look forward to

> reading your posts and writing some of my own, and I can certainly say that

> the few I've

> already looked at have left me nodding and saying, " Yeah, that's how it

> is. "

>

> Good to meet you.

>

> Rosella

>

>

>

[Guest guest]

Your messages are appearing here at the Group site, no problem.

If you've chosen to receive posts by e-mail, possibly there is a

problem with your e-mail engine?

-Annie

>

> hello,

> I seem to not be able to contact anyone, freak out

> TC

>

>

>

>

>