Stefan

[Guest guest]

I couldn't help but notice in your email that you almost sound panicked -

My husband Mike had his transplant in May/2004 after 20 years with psc - at

the time of his transplant his outward physical symptoms were jaundice, and

fatigue - inwardly we had NO idea what was going on - he had grade 2

varicies, an umbilical hernia and hepatosplenomegaly - but he continued to

work and function - we were very proactive in alternative medicine - alot of

common sense stuff - nothing 'way out there' , just choices made by careful

research, lots of conversations with people living with the disease and even

some Dr.'s from around the world - we left no stone unturned and I (and his

transplant team) credit that to his amazing 'good' health right up to

transplant day.

I could never begin to understand the fear Mike and you and others go

through from the patient perspective - but as the caretaker and onlooker, I

have a bit of an idea - and some days panic was overwhelming - you can drive

yourself crazy with the 'what if's' - I work in a hospital also, and

sometimes more knowledge is worse than none at all, because you know and

especially you, being a Dr.- well, you've seen it all.

I just want you to take strength from Mike's story and the time it took him

to get to transplant - we are talking at least 20 years - and he never even

got symptomatic until 1997 - you can do so much to help yourself - step

outside the box - and kick some butt - stay positive (or at least try to) .

We are all grieving for Shauna tonight - her family - the struggles they

had, the positive attitude right up till the end -

and the greatest thing about this group - we have always been there for each

other - and we will all be there for you....

take care,

Patti

" the trouble with resisting temptation is it may never come your way again "

>

>Reply-To:

>To:

>Subject: PLEASE HELP ME UNDERSTAND Re: Status 1 & Shauna

>Date: Sat, 04 Dec 2004 00:50:34 -0000

>

>

>

>Deb,

>God it's so scary and sad and frustrating. As a young patient

>just 'officially' diagnosed with PSC (at the Mayo after 3 ERCPs in 3

>months) Shauna's situation sucks. God I hope she isn't/didn't suffer

>too much. I know she is/was in a coma. I know she is 29. Do you know

>how long she had PSC for?

>

>What really scares me too is how much I know about the medical

>aspects of a problem like hepatic failure. I've already been a pin-

>cushion for most of my life - much more recently. I've spent months

>working in the Surgical ICU managing fluids and vents and putting in

>100's of central lines. God I don't want to be on a vent I don't

>want to have a central line I don't want another disease I don't

>want . . . . to die young.

>

>I just hope everyones PSC is slow enough that they find a treatment

>that works to slow it down even more or that xenografts become a

>reality or that some scientist figures out tolerance or liver

>regeneration. I just hope we all live long enough to have children,

>to see our children grow up to live full lives.

>

>SDH

>

>

> >

> > Barb,

> > I'm obviously struggling with this as well. All I can surmise from

> > the information we've been given both from the family and from

>UNOS

> > is that you are correct - either those livers were rejected by the

> > Status 1 patients' docs - OR - those people weren't listed as

>Status

> > 1 when Shauna's case initially worsened so severely. Perhaps they

> > were deemed to be status 1 after those livers were offered? I

>agree,

> > it is sheer maddness for her docs not to have already have

>requested

> > an exception in her case. I know that hospitals get in trouble for

> > asking for exceptions if they aren't warranted, and they are

> > penalized if they do. So perhaps they've asked once too often in

>the

> > past - or maybe they're just gun-shy right now because of the

>rules?

> > I don't know. I certainly don't envy their life and death

>decisions.

> > I'd probably be thrown out of the profession for all I'd do to

>help

> > my patients! :-)

> >

> > As for Ken - share this with him - if the blood clotting gets

>worse,

> > he could get MUCH worse (don't mean to scare you - but him!). My

>INR

> > is 1.3 or 1.2 depending on when they draw my blood. I bruise

>fairly

> > easily, but nothing like what you describe. My INR is usually what

> > pushes my MELD score up from the middle teens to the high teens.

>At

> > the very least, this may be what he needs to get listed even if

>his

> > docs think that vitamin K shots aren't warranted. I'm sure

> > could point you in the direction of some " objective " articles on

> > blood clotting problems and PSC/ESLD.

> >

> > Perhaps if it comes from a source other than his parents, he'll be

> > more receptive to getting himself to the doctor...I wish I could

> > offer more ideas. I just know what might work with me if I were

>being

> > stubborn. (I once didn't go to the doc when my bilirubin as in the

> > middle teens because the doc had said to wait until my post-partum

> > period had passed. My husband pushed and pushed, but I was too

>scared

> > to go to the doc. Afterward, I got a good lecture from both of

>them!)

> >

> > As far as how I'm handling this - I guess it is no secret that

> > Shauna's condition has me scared to death! Add to this that I'm

> > supposed to be beginning to restrict my salt intake because of

>mild,

> > but persistant edema, and I'm feeling very frustrated and out of

> > control. (You all probably know that salt is EVERYWHERE!) I know

>how

> > difficult it was for Shauna to limit her salt intake, and that's

>what

> > scares me. All this year, I've felt like I've been on the edge of

> > decomposition, and here it is coming to pass - ever so slowly. I

>only

> > hope I can handle it all with the grace that Shauna has. I don't

>mean

> > to personalize this so much - I just can't help it. Shauna has

>been

> > my rock, and I feel like I'm totally failing her in her hour of

>need

> > because there isn't ANYTHING concrete that I can do to help the

> > situation. My friends and family think I'm nuts to be so worked up

> > over someone whom I've never met in person...Somehow, I feel that

> > email can be more personal than face-to-face meetings -

>particularly

> > in matters such as these. This is getting long, and I feel like

>I've

> > been monopolizing the board recently. I've probably gotten you all

> > tired of hearing my rambling...

> >

> > Hang in there, Barb, things HAVE to get better!

> > Deb in VA

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

> >

> > site.

>

>

>

>

>

>

>

>

[Guest guest]

I agree with Patti's message - that you need to stay positive and live life. I think Abbie is wrong to deny herself life's greatest gifts because she may die before reaching her life expectancy. I have a good friend who's fallen in love with a girl who had breast cancer in her early 30's. I wouldn't say this to him but I assume she is at great risk for cancer to come back someday. Should he break up with her because she has bad genes and a medical history? Of course not!

You don't want to wake up in 25 years, finally sick from the disease, and realize you wasted your whole life worrying about it. I have two daughters (3 and 1) and they are the best reason for fighting, not some poor souls who will have to struggle in life because Daddy got sick when they were young.

I am new to this group and never knew Shauna. Some of you think it's surprising how close you feel to her despite never meeting her. Well I didn't even know her through emails and I write these words with tears in my eyes. She will be an inspiration to me - while I am still doing well I will think of her and count my blessings. When I get sick, I will remember her and keep fighting till the end. I guess that's why we're in a support group to begin with.

My heart felt condolences go out to Shauna and her family.

in Cleveland

* * wrote:

I couldn't help but notice in your email that you almost sound panicked -My husband Mike had his transplant in May/2004 after 20 years with psc - at the time of his transplant his outward physical symptoms were jaundice, and fatigue - inwardly we had NO idea what was going on - he had grade 2 varicies, an umbilical hernia and hepatosplenomegaly - but he continued to work and function - we were very proactive in alternative medicine - alot of common sense stuff - nothing 'way out there' , just choices made by careful research, lots of conversations with people living with the disease and even some Dr.'s from around the world - we left no stone unturned and I (and his transplant team) credit that to his amazing 'good' health right up to transplant day.I could never begin to understand the fear Mike and you and others go through from

the patient perspective - but as the caretaker and onlooker, I have a bit of an idea - and some days panic was overwhelming - you can drive yourself crazy with the 'what if's' - I work in a hospital also, and sometimes more knowledge is worse than none at all, because you know and especially you, being a Dr.- well, you've seen it all.I just want you to take strength from Mike's story and the time it took him to get to transplant - we are talking at least 20 years - and he never even got symptomatic until 1997 - you can do so much to help yourself - step outside the box - and kick some butt - stay positive (or at least try to) .We are all grieving for Shauna tonight - her family - the struggles they had, the positive attitude right up till the end -and the greatest thing about this group - we have always been there for each other - and we will all be there for you....take care,Patti"the trouble with resisting

temptation is it may never come your way again">From: "Stefan Holubar" >Reply-To: >To: >Subject: PLEASE HELP ME UNDERSTAND Re: Status 1 & Shauna>Date: Sat, 04 Dec 2004 00:50:34 -0000>>>>Deb,>God it's so scary and sad and frustrating. As a young patient>just 'officially' diagnosed with PSC (at the Mayo after 3 ERCPs in 3>months) Shauna's situation sucks. God I hope she isn't/didn't suffer>too much. I know she is/was in a coma. I know she is 29. Do you know>how long she had PSC for?>>What really scares me too is how much I know about the medical>aspects of a problem like hepatic failure. I've already been a pin->cushion for most of my life - much more recently. I've spent months>working in the Surgical ICU managing fluids and vents and putting

in>100's of central lines. God I don't want to be on a vent I don't>want to have a central line I don't want another disease I don't>want . . . . to die young.>>I just hope everyones PSC is slow enough that they find a treatment>that works to slow it down even more or that xenografts become a>reality or that some scientist figures out tolerance or liver>regeneration. I just hope we all live long enough to have children,>to see our children grow up to live full lives.>>SDH>>> >> > Barb,> > I'm obviously struggling with this as well. All I can surmise from> > the information we've been given both from the family and from>UNOS> > is that you are correct - either those livers were rejected by the> > Status 1 patients' docs - OR - those people weren't listed

as>Status> > 1 when Shauna's case initially worsened so severely. Perhaps they> > were deemed to be status 1 after those livers were offered? I>agree,> > it is sheer maddness for her docs not to have already have>requested> > an exception in her case. I know that hospitals get in trouble for> > asking for exceptions if they aren't warranted, and they are> > penalized if they do. So perhaps they've asked once too often in>the> > past - or maybe they're just gun-shy right now because of the>rules?> > I don't know. I certainly don't envy their life and death>decisions.> > I'd probably be thrown out of the profession for all I'd do to>help> > my patients! :-)> >> > As for Ken - share this with him - if the blood clotting gets>worse,> > he could get MUCH worse (don't mean to scare you - but him!).

My>INR> > is 1.3 or 1.2 depending on when they draw my blood. I bruise>fairly> > easily, but nothing like what you describe. My INR is usually what> > pushes my MELD score up from the middle teens to the high teens.>At> > the very least, this may be what he needs to get listed even if>his> > docs think that vitamin K shots aren't warranted. I'm sure > > could point you in the direction of some "objective" articles on> > blood clotting problems and PSC/ESLD.> >> > Perhaps if it comes from a source other than his parents, he'll be> > more receptive to getting himself to the doctor...I wish I could> > offer more ideas. I just know what might work with me if I were>being> > stubborn. (I once didn't go to the doc when my bilirubin as in the> > middle teens because the doc had said to wait until my post-partum>

> period had passed. My husband pushed and pushed, but I was too>scared> > to go to the doc. Afterward, I got a good lecture from both of>them!)> >> > As far as how I'm handling this - I guess it is no secret that> > Shauna's condition has me scared to death! Add to this that I'm> > supposed to be beginning to restrict my salt intake because of>mild,> > but persistant edema, and I'm feeling very frustrated and out of> > control. (You all probably know that salt is EVERYWHERE!) I know>how> > difficult it was for Shauna to limit her salt intake, and that's>what> > scares me. All this year, I've felt like I've been on the edge of> > decomposition, and here it is coming to pass - ever so slowly. I>only> > hope I can handle it all with the grace that Shauna has. I don't>mean> > to personalize this so much - I just

can't help it. Shauna has>been> > my rock, and I feel like I'm totally failing her in her hour of>need> > because there isn't ANYTHING concrete that I can do to help the> > situation. My friends and family think I'm nuts to be so worked up> > over someone whom I've never met in person...Somehow, I feel that> > email can be more personal than face-to-face meetings ->particularly> > in matters such as these. This is getting long, and I feel like>I've> > been monopolizing the board recently. I've probably gotten you all> > tired of hearing my rambling...> >> > Hang in there, Barb, things HAVE to get better!> > Deb in VA> > PSC 1998, UC 1999, Listed Ltx 2001, MELD 17> >> > site.>>>>>>>>Yahoo! Groups

Links>>>>>>>

[Guest guest]

Thanks Patti. It's the paradox of this support group to learn the

good and the bad. And I think I am still in the mourning stage of my

own new diagnosis.

My wife ne wants to know what kind of alternative stuff?

-Stef

> > >

> > > Barb,

> > > I'm obviously struggling with this as well. All I can surmise

from

> > > the information we've been given both from the family and from

> >UNOS

> > > is that you are correct - either those livers were rejected by

the

> > > Status 1 patients' docs - OR - those people weren't listed as

> >Status

> > > 1 when Shauna's case initially worsened so severely. Perhaps

they

> > > were deemed to be status 1 after those livers were offered? I

> >agree,

> > > it is sheer maddness for her docs not to have already have

> >requested

> > > an exception in her case. I know that hospitals get in trouble

for

> > > asking for exceptions if they aren't warranted, and they are

> > > penalized if they do. So perhaps they've asked once too often

in

> >the

> > > past - or maybe they're just gun-shy right now because of the

> >rules?

> > > I don't know. I certainly don't envy their life and death

> >decisions.

> > > I'd probably be thrown out of the profession for all I'd do to

> >help

> > > my patients! :-)

> > >

> > > As for Ken - share this with him - if the blood clotting gets

> >worse,

> > > he could get MUCH worse (don't mean to scare you - but him!).

My

> >INR

> > > is 1.3 or 1.2 depending on when they draw my blood. I bruise

> >fairly

> > > easily, but nothing like what you describe. My INR is usually

what

> > > pushes my MELD score up from the middle teens to the high

teens.

> >At

> > > the very least, this may be what he needs to get listed even if

> >his

> > > docs think that vitamin K shots aren't warranted. I'm sure

> > > could point you in the direction of some " objective " articles

on

> > > blood clotting problems and PSC/ESLD.

> > >

> > > Perhaps if it comes from a source other than his parents,

he'll be

> > > more receptive to getting himself to the doctor...I wish I

could

> > > offer more ideas. I just know what might work with me if I were

> >being

> > > stubborn. (I once didn't go to the doc when my bilirubin as in

the

> > > middle teens because the doc had said to wait until my post-

partum

> > > period had passed. My husband pushed and pushed, but I was too

> >scared

> > > to go to the doc. Afterward, I got a good lecture from both of

> >them!)

> > >

> > > As far as how I'm handling this - I guess it is no secret that

> > > Shauna's condition has me scared to death! Add to this that I'm

> > > supposed to be beginning to restrict my salt intake because of

> >mild,

> > > but persistant edema, and I'm feeling very frustrated and out

of

> > > control. (You all probably know that salt is EVERYWHERE!) I

know

> >how

> > > difficult it was for Shauna to limit her salt intake, and

that's

> >what

> > > scares me. All this year, I've felt like I've been on the edge

of

> > > decomposition, and here it is coming to pass - ever so slowly.

I

> >only

> > > hope I can handle it all with the grace that Shauna has. I

don't

> >mean

> > > to personalize this so much - I just can't help it. Shauna has

> >been

> > > my rock, and I feel like I'm totally failing her in her hour of

> >need

> > > because there isn't ANYTHING concrete that I can do to help the

> > > situation. My friends and family think I'm nuts to be so

worked up

> > > over someone whom I've never met in person...Somehow, I feel

that

> > > email can be more personal than face-to-face meetings -

> >particularly

> > > in matters such as these. This is getting long, and I feel like

> >I've

> > > been monopolizing the board recently. I've probably gotten you

all

> > > tired of hearing my rambling...

> > >

> > > Hang in there, Barb, things HAVE to get better!

> > > Deb in VA

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

> > >

> > > site.

> >

> >

> >

> >

> >

> >

> >

> >