Re: I'm on Urso, but...(update, still need advice)

[Guest guest]

Sikeea,

Hi! You're absolutely welcome for the " listening. " Anytime you need me (or

anyone else on this board), please know that we're here for you. It sounds like

you're going through a rough time. I can completely empathize with your comment

about waiting forever for the doctors to call back. The only advice I can give

you is to keep on them. Even if you have to call daily, don't be afraid to do

it. Your health is important and you/we need to be vigilant about it. Do you

know if any of the GIs you're calling have a cancellation/waitlist that you

could place yourself on? I'm so sorry you're having to deal with this! Going

to the doctor is never pleasant and it's just ridiculous and ironic that we find

ourselves begging for somebody to see us at times. I hope you find somebody

great soon!

As to your job situation, how is your relationship with your boss? Is he/she

somebody you could sit down with and have an open/honest conversation? Maybe it

would be possible to arrange some work at home hours or a split shift that would

allow you to nap during the middle of the day. If you can think of some ideas

that might work for you, you may want to try presenting them to your boss and

see what happens from there.

Also, I know this is a touchy subject for some, but if you are feeling

overwhelmed, talking to an impartial third party like a therapist may help.

Sometimes just saying things out loud takes away their power to stress you and

having an objective ear can sometimes lend new perspective. It's a personal

choice, but I thought I'd mention it for what it's worth!

Hope things go your way very soon!

Sandi in VA

[Guest guest]

Sikeea,

Hi! You're absolutely welcome for the " listening. " Anytime you need me (or

anyone else on this board), please know that we're here for you. It sounds like

you're going through a rough time. I can completely empathize with your comment

about waiting forever for the doctors to call back. The only advice I can give

you is to keep on them. Even if you have to call daily, don't be afraid to do

it. Your health is important and you/we need to be vigilant about it. Do you

know if any of the GIs you're calling have a cancellation/waitlist that you

could place yourself on? I'm so sorry you're having to deal with this! Going

to the doctor is never pleasant and it's just ridiculous and ironic that we find

ourselves begging for somebody to see us at times. I hope you find somebody

great soon!

As to your job situation, how is your relationship with your boss? Is he/she

somebody you could sit down with and have an open/honest conversation? Maybe it

would be possible to arrange some work at home hours or a split shift that would

allow you to nap during the middle of the day. If you can think of some ideas

that might work for you, you may want to try presenting them to your boss and

see what happens from there.

Also, I know this is a touchy subject for some, but if you are feeling

overwhelmed, talking to an impartial third party like a therapist may help.

Sometimes just saying things out loud takes away their power to stress you and

having an objective ear can sometimes lend new perspective. It's a personal

choice, but I thought I'd mention it for what it's worth!

Hope things go your way very soon!

Sandi in VA

[Guest guest]

Serbrina:

For what it's worth, my doc told me just last week that he does not

like to put someone on a list with a MELD lower than 12 or so (25

being the typical point for transplant). He told me that the info

that would be put into all the databases would probably be obsolete

by the time I would really NEED the transplant. As far as HOW LONG to

a transplant? No one knows! In my case, he said it could be anywhere

from a year to 15 years to never. Go figure!

Wim (aka )

>

> Alison

> I too am new to the group. I was diagnosed with UC in 2001 and PSC

in 2004. I am listed on the transplant list but my MELD is an 8. Even

after I've done tons of research, I still don't understand so much

about this disease. Why do some people get sick quicker than others?

How long am I going to wait to get a transplant? And how sick am I

really going to get? I feel so lucky that I have found a group of

people that understand what I'm going through.

> Serbrina

> Sent via BlackBerry by AT&T

>

> Re: Re: I'm on Urso, but...(update, still

need advice)

>

[Guest guest]

Serbrina:

For what it's worth, my doc told me just last week that he does not

like to put someone on a list with a MELD lower than 12 or so (25

being the typical point for transplant). He told me that the info

that would be put into all the databases would probably be obsolete

by the time I would really NEED the transplant. As far as HOW LONG to

a transplant? No one knows! In my case, he said it could be anywhere

from a year to 15 years to never. Go figure!

Wim (aka )

>

> Alison

> I too am new to the group. I was diagnosed with UC in 2001 and PSC

in 2004. I am listed on the transplant list but my MELD is an 8. Even

after I've done tons of research, I still don't understand so much

about this disease. Why do some people get sick quicker than others?

How long am I going to wait to get a transplant? And how sick am I

really going to get? I feel so lucky that I have found a group of

people that understand what I'm going through.

> Serbrina

> Sent via BlackBerry by AT&T

>

> Re: Re: I'm on Urso, but...(update, still

need advice)

>

[Guest guest]

Serbrina:

For what it's worth, my doc told me just last week that he does not

like to put someone on a list with a MELD lower than 12 or so (25

being the typical point for transplant). He told me that the info

that would be put into all the databases would probably be obsolete

by the time I would really NEED the transplant. As far as HOW LONG to

a transplant? No one knows! In my case, he said it could be anywhere

from a year to 15 years to never. Go figure!

Wim (aka )

>

> Alison

> I too am new to the group. I was diagnosed with UC in 2001 and PSC

in 2004. I am listed on the transplant list but my MELD is an 8. Even

after I've done tons of research, I still don't understand so much

about this disease. Why do some people get sick quicker than others?

How long am I going to wait to get a transplant? And how sick am I

really going to get? I feel so lucky that I have found a group of

people that understand what I'm going through.

> Serbrina

> Sent via BlackBerry by AT&T

>

> Re: Re: I'm on Urso, but...(update, still

need advice)

>

[Guest guest]

Thanks I can only hope that by the time we really both need a transplant, they've come up with a cure for this nasty disease.SerbrinaSent via BlackBerry by AT&TFrom: " Drukker" Date: Fri, 06 Feb 2009 08:14:14 -0000To: < >Subject: Re: I'm on Urso, but...(update, still need advice) Serbrina: For what it's worth, my doc told me just last week that he does not like to put someone on a list with a MELD lower than 12 or so (25 being the typical point for transplant). He told me that the info that would be put into all the databases would probably be obsolete by the time I would really NEED the transplant. As far as HOW LONG to a transplant? No one knows! In my case, he said it could be anywhere from a year to 15 years to never. Go figure! Wim (aka ) > > Alison > I too am new to the group. I was diagnosed with UC in 2001 and PSC in 2004. I am listed on the transplant list but my MELD is an 8. Even after I've done tons of research, I still don't understand so much about this disease. Why do some people get sick quicker than others? How long am I going to wait to get a transplant? And how sick am I really going to get? I feel so lucky that I have found a group of people that understand what I'm going through. > Serbrina > Sent via BlackBerry by AT & T > > Re: Re: I'm on Urso, but...(update, still need advice) >

[Guest guest]

Thanks I can only hope that by the time we really both need a transplant, they've come up with a cure for this nasty disease.SerbrinaSent via BlackBerry by AT&TFrom: " Drukker" Date: Fri, 06 Feb 2009 08:14:14 -0000To: < >Subject: Re: I'm on Urso, but...(update, still need advice) Serbrina: For what it's worth, my doc told me just last week that he does not like to put someone on a list with a MELD lower than 12 or so (25 being the typical point for transplant). He told me that the info that would be put into all the databases would probably be obsolete by the time I would really NEED the transplant. As far as HOW LONG to a transplant? No one knows! In my case, he said it could be anywhere from a year to 15 years to never. Go figure! Wim (aka ) > > Alison > I too am new to the group. I was diagnosed with UC in 2001 and PSC in 2004. I am listed on the transplant list but my MELD is an 8. Even after I've done tons of research, I still don't understand so much about this disease. Why do some people get sick quicker than others? How long am I going to wait to get a transplant? And how sick am I really going to get? I feel so lucky that I have found a group of people that understand what I'm going through. > Serbrina > Sent via BlackBerry by AT & T > > Re: Re: I'm on Urso, but...(update, still need advice) >

[Guest guest]

Serbrina:

In my case, I was diagnosed in 1990;

however, I had symptoms of both PSC and UC in February, 1987. I had a

fairly normal life with minimal symptoms and only two or three flares until August,

2007. At that point, my health started on a fast downhill. My liver

numbers skyrocketed; I had a constant fever, jaundiced. My MELD went to 13

in September and to 28 in October. I was put on the transplant list in

early October and received the call on the 17th.

Joe

PSC & UC -

1990; Liver Transplant - 2007

From:

[mailto: ] On Behalf Of Drukker

Sent: Friday, February 06, 2009

2:14 AM

To:

Subject: Re: I'm on

Urso, but...(update, still need advice)

Serbrina:

For what it's worth, my doc told me just last week that he does not

like to put someone on a list with a MELD lower than 12 or so (25

being the typical point for transplant).

As far as HOW LONG to a transplant? No one knows! In my case, he said

it could be anywhere

from a year to 15 years to never. Go figure!

Wim (aka )

>

> Alison

> I too am new to the group. I was diagnosed with UC in 2001 and PSC

in 2004. I am listed on the transplant list but my MELD is an 8.

How long am I going to wait to get a transplant? And how sick am I

really going to get?

> Serbrina

_,_._,___

[Guest guest]

Serbrina:

In my case, I was diagnosed in 1990;

however, I had symptoms of both PSC and UC in February, 1987. I had a

fairly normal life with minimal symptoms and only two or three flares until August,

2007. At that point, my health started on a fast downhill. My liver

numbers skyrocketed; I had a constant fever, jaundiced. My MELD went to 13

in September and to 28 in October. I was put on the transplant list in

early October and received the call on the 17th.

Joe

PSC & UC -

1990; Liver Transplant - 2007

From:

[mailto: ] On Behalf Of Drukker

Sent: Friday, February 06, 2009

2:14 AM

To:

Subject: Re: I'm on

Urso, but...(update, still need advice)

Serbrina:

For what it's worth, my doc told me just last week that he does not

like to put someone on a list with a MELD lower than 12 or so (25

being the typical point for transplant).

As far as HOW LONG to a transplant? No one knows! In my case, he said

it could be anywhere

from a year to 15 years to never. Go figure!

Wim (aka )

>

> Alison

> I too am new to the group. I was diagnosed with UC in 2001 and PSC

in 2004. I am listed on the transplant list but my MELD is an 8.

How long am I going to wait to get a transplant? And how sick am I

really going to get?

> Serbrina

_,_._,___

[Guest guest]

Serbrina:

In my case, I was diagnosed in 1990;

however, I had symptoms of both PSC and UC in February, 1987. I had a

fairly normal life with minimal symptoms and only two or three flares until August,

2007. At that point, my health started on a fast downhill. My liver

numbers skyrocketed; I had a constant fever, jaundiced. My MELD went to 13

in September and to 28 in October. I was put on the transplant list in

early October and received the call on the 17th.

Joe

PSC & UC -

1990; Liver Transplant - 2007

From:

[mailto: ] On Behalf Of Drukker

Sent: Friday, February 06, 2009

2:14 AM

To:

Subject: Re: I'm on

Urso, but...(update, still need advice)

Serbrina:

For what it's worth, my doc told me just last week that he does not

like to put someone on a list with a MELD lower than 12 or so (25

being the typical point for transplant).

As far as HOW LONG to a transplant? No one knows! In my case, he said

it could be anywhere

from a year to 15 years to never. Go figure!

Wim (aka )

>

> Alison

> I too am new to the group. I was diagnosed with UC in 2001 and PSC

in 2004. I am listed on the transplant list but my MELD is an 8.

How long am I going to wait to get a transplant? And how sick am I

really going to get?

> Serbrina

_,_._,___

[Guest guest]

JoeWow it amazes me how this disease may be slow in progression but when it hits it hits hard. I hope you are doing well with the new liver. SerbrinaSent via BlackBerry by AT&TFrom: "Joe Berry" Date: Fri, 6 Feb 2009 09:18:18 -0600To: < >Subject: RE: Re: I'm on Urso, but...(update, still need advice) Serbrina: In my case, I was diagnosed in 1990; however, I had symptoms of both PSC and UC in February, 1987. I had a fairly normal life with minimal symptoms and only two or three flares until August, 2007. At that point, my health started on a fast downhill. My liver numbers skyrocketed; I had a constant fever, jaundiced. My MELD went to 13 in September and to 28 in October. I was put on the transplant list in early October and received the call on the 17th. Joe PSC & UC - 1990; Liver Transplant - 2007 From: [mailto: ] On Behalf Of DrukkerSent: Friday, February 06, 2009 2:14 AMTo: Subject: Re: I'm on Urso, but...(update, still need advice) Serbrina: For what it's worth, my doc told me just last week that he does not like to put someone on a list with a MELD lower than 12 or so (25 being the typical point for transplant). As far as HOW LONG to a transplant? No one knows! In my case, he said it could be anywhere from a year to 15 years to never. Go figure! Wim (aka ) > > Alison > I too am new to the group. I was diagnosed with UC in 2001 and PSC in 2004. I am listed on the transplant list but my MELD is an 8. How long am I going to wait to get a transplant? And how sick am I really going to get? > Serbrina _,_._,___

[Guest guest]

JoeWow it amazes me how this disease may be slow in progression but when it hits it hits hard. I hope you are doing well with the new liver. SerbrinaSent via BlackBerry by AT&TFrom: "Joe Berry" Date: Fri, 6 Feb 2009 09:18:18 -0600To: < >Subject: RE: Re: I'm on Urso, but...(update, still need advice) Serbrina: In my case, I was diagnosed in 1990; however, I had symptoms of both PSC and UC in February, 1987. I had a fairly normal life with minimal symptoms and only two or three flares until August, 2007. At that point, my health started on a fast downhill. My liver numbers skyrocketed; I had a constant fever, jaundiced. My MELD went to 13 in September and to 28 in October. I was put on the transplant list in early October and received the call on the 17th. Joe PSC & UC - 1990; Liver Transplant - 2007 From: [mailto: ] On Behalf Of DrukkerSent: Friday, February 06, 2009 2:14 AMTo: Subject: Re: I'm on Urso, but...(update, still need advice) Serbrina: For what it's worth, my doc told me just last week that he does not like to put someone on a list with a MELD lower than 12 or so (25 being the typical point for transplant). As far as HOW LONG to a transplant? No one knows! In my case, he said it could be anywhere from a year to 15 years to never. Go figure! Wim (aka ) > > Alison > I too am new to the group. I was diagnosed with UC in 2001 and PSC in 2004. I am listed on the transplant list but my MELD is an 8. How long am I going to wait to get a transplant? And how sick am I really going to get? > Serbrina _,_._,___

[Guest guest]

>Hi Sandy,

Thanks for yor kind words! I'm trying to get as much rest as I can

and waiting till I can see my GI on Thursday. I was able to go to

work today, so, I can attest to earlier posts by others on the

surprising effects of a positive attitude. I told my boss a few

months after I was diagnosed in 2007. She has been very understanding

so far, but I doubt she figured I'd need so much time to deal with

this recurring thing. I'm hoping that once my doctors and I decide

what is going on and what to do about it, that I will feel better

soon. Your idea of perhaps cutting some hours and/or working some

hours from home is awesome. That sounds really plausible. My boss is

pretty flexible and may say yes to that. I'll give it a lot of

thought and bring it up to my boss. I'll be sure to let you know what

she says.

Thanks Again,

Sikeea

> Sikeea,

>

> Hi! You're absolutely welcome for the " listening. " Anytime you

need me (or anyone else on this board), please know that we're here

for you. It sounds like you're going through a rough time. I can

completely empathize with your comment about waiting forever for the

doctors to call back. The only advice I can give you is to keep on

them. Even if you have to call daily, don't be afraid to do it.

Your health is important and you/we need to be vigilant about it. Do

you know if any of the GIs you're calling have a

cancellation/waitlist that you could place yourself on? I'm so sorry

you're having to deal with this! Going to the doctor is never

pleasant and it's just ridiculous and ironic that we find ourselves

begging for somebody to see us at times. I hope you find somebody

great soon!

>

> As to your job situation, how is your relationship with your boss?

Is he/she somebody you could sit down with and have an open/honest

conversation? Maybe it would be possible to arrange some work at

home hours or a split shift that would allow you to nap during the

middle of the day. If you can think of some ideas that might work

for you, you may want to try presenting them to your boss and see

what happens from there.

>

> Also, I know this is a touchy subject for some, but if you are

feeling overwhelmed, talking to an impartial third party like a

therapist may help. Sometimes just saying things out loud takes away

their power to stress you and having an objective ear can sometimes

lend new perspective. It's a personal choice, but I thought I'd

mention it for what it's worth!

>

> Hope things go your way very soon!

>

> Sandi in VA

>

[Guest guest]

> > >I really want to thank you and the other 2 people who actually

> wrote

> > back, thanks for " listening " . I can really also relate to the

post

> > about feeling angry sometimes, especially right now. I have taken

> > yesterday and today off work because I am so fatigued I can't do

> > anything. Also, decreased appetite and foul taste in my mouth and

> foul,

> > upset-feeling stomach. Kind of like before I was diagnosed. I am

> still

> > waiting for my labs (do drs ever really call back?) and can't get

> an

> > appointment with my GI till next Thursday. I need to see someone

> now.

> > But I have spent most of the day calling other GI's in my city

and

> they

> > are either not accepting new patients or are booked till at least

> the

> > end of this month. I've been feeling this way for at least 2

weeks.

> I

> > need to care for myself, but am also afraid of taking too much

time

> > from work. My boss is being fair, but anyone's understanding can

> only

> > be stretched so thin. How do all of you deal with stuff like

this?

> > Please help.

> >

> > > Hi! I'm so sorry to hear you're feeling worse. I have a lot of

> the

> > symptoms that you're talking about. I'm not sure what form of

Urso

> > you're on, but when I was on Ursodiol, I was continually in pain,

> > vomiting and nauseous. They switched me to Urso Forte and that

> > definitely made a difference. As to whether what's happening to

you

> is

> > PSC related or not, I can't give you an answer. You may want to

ask

> > your doctor about the possibility of something else going on if

> you're

> > not sure. At the very least, it might give you piece of mind.

> > >

> > > Hope you're feeling better soon!

> > >

> > > Sandi in VA

> > >

> >

>

>

> __.._,_.___

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[Guest guest]

>Yeah, you're right. A mini-summary for when/if I have to see someone

new.

> And. If you tell them that you think you may be having either a

reaction to

> the meds or a much deteriorated condition AND you can't get in to

see

> anyone, AND you are scared.

>

>

>

> From: [mailto:psc-

support ] On

> Behalf Of Ian Cribb

> Sent: Thursday, February 05, 2009 5:48 PM

> To:

> Subject: Re: Re: I'm on Urso, but...(update, still

need

> advice)

>

>

>

> Sikeea,

>

> If you have a sheet saying wath medications you are on and what

medical

> conditions you have it should make thing easlier for you when/if

you go to

> an ER. If you have it typed up you won't have to spell it out for

them and

> they can access infomation on the disease on the internet.

>

> Ian (52) PSC 89

>

[Guest guest]

>Yeah, you're right. A mini-summary for when/if I have to see someone

new.

> And. If you tell them that you think you may be having either a

reaction to

> the meds or a much deteriorated condition AND you can't get in to

see

> anyone, AND you are scared.

>

>

>

> From: [mailto:psc-

support ] On

> Behalf Of Ian Cribb

> Sent: Thursday, February 05, 2009 5:48 PM

> To:

> Subject: Re: Re: I'm on Urso, but...(update, still

need

> advice)

>

>

>

> Sikeea,

>

> If you have a sheet saying wath medications you are on and what

medical

> conditions you have it should make thing easlier for you when/if

you go to

> an ER. If you have it typed up you won't have to spell it out for

them and

> they can access infomation on the disease on the internet.

>

> Ian (52) PSC 89

>

[Guest guest]

>Yeah, you're right. A mini-summary for when/if I have to see someone

new.

> And. If you tell them that you think you may be having either a

reaction to

> the meds or a much deteriorated condition AND you can't get in to

see

> anyone, AND you are scared.

>

>

>

> From: [mailto:psc-

support ] On

> Behalf Of Ian Cribb

> Sent: Thursday, February 05, 2009 5:48 PM

> To:

> Subject: Re: Re: I'm on Urso, but...(update, still

need

> advice)

>

>

>

> Sikeea,

>

> If you have a sheet saying wath medications you are on and what

medical

> conditions you have it should make thing easlier for you when/if

you go to

> an ER. If you have it typed up you won't have to spell it out for

them and

> they can access infomation on the disease on the internet.

>

> Ian (52) PSC 89

>

[Guest guest]

Sikeea,

I'm glad you liked the ideas. Please do keep us updated. We're all wishing you

the best of luck!

Sandi in VA