Nina - RE: Re: Jett-ScherderCB update

[Guest guest]

If we were talking Jim, not ... & had I been there, at his side, you

can bet your sweet bippy I'd have threatened " unsafe discharge, " demanding

to see the hospital's patient advocate, & basically turning that hospital

upside-down in order to REPEAT any tests to confirm just that, Nina! But

was alone at the time, probably in shock upon hearing the news of

her latest MELD score. She's a brilliant, brilliant gal... but this is a

lesson for everyone here: it's all about the proactive medical advocacy.

If she knew placement of a filter would move her MELD from a 27 to a 7, do

you think she would have consented to the procedure, knowing it would set

her back to square one (hot-under-the-collar Maureen asked, rhetorically!)?

Interesting question to ponder, isn't it?

Don't get me wrong, IMHO does an absolutely outstanding job being

proactive in her care, but if Jim were in her place & informed he'd just

been downgraded from a MELD 27 to a 7... Jim would have said " okay. "

And if informed he needed to pack up his stuff & get ready for hospital

discharge, Jim would have again said " okay, " probably adding, " thank you. "

Call me an ole stubborn Irishwoman, but it's my willingness to step right up

to such Goliaths, standing on a ladder if need be to look em all square in

the eye, & say things akin to " uh, NO!!! " that helped keep Jim alive.

As I've said before, told me her social worker was absolutely

screaming. To that, I say, God bless that social worker, for caring for

what is right, and fair, and true! But 's doctors were divided on

certain issues, some arguing for, others against.

Akin to, perhaps, those taking their Hippocratic Oath seriously one one end

of the see-saw, up & downing with bureaucrats conducting a wallet biopsy on

the other? I'll risk starting WWIII & actually dare to say it: has

been through SO MUCH on her unique PSC roller coaster saga so far, I find

myself beginning to wonder if there might be some in her vast medical

community with the hidden agenda that maybe, for whatever reason they are

not disclosing to , they just don't want to see her transplanted?).

Case in point: why else would a transplant coordinator take a file & thrust

it into the back of a drawer, to forget it even existed? That coordinator

is no longer in charge of their caseload & their employment has been

terminated, thank God... but still... it all just makes you think.

Go back to the archives & read how HARD I had to FIGHT to get Jim txd USC.

They " thought " he had cancer, they " thought " they detected what might be a

mass... when I assured them what they were actually seeing was Jim's liver

attempting to regenerate after one massive, gnarly cholangitis attack, they

dismissed me (after all, I'm no doctor). But thank God Aubrey in this group

empowered me to fight that fight, when I posted the medicalspeak to this

group, for him to explain things to me in dumbed-down English ( & Aubrey, God

bless him, said there was nothing that indicated to HIM what USC was telling

ME). When I brought up prior (original) ct-scan films to USC, to prove Jim

had this odd tendency to have these suspicious ct-scans (in close proximity

to cholangitis attacks), you know what happened? THEY LOST THE FILMS.

I asked the tx coordinator how much time she would require TO FIND THE ONLY

FILMS IN EXISTENCE, WHICH, PRIOR TO RECEIVING THEM, THEY SWORE THEY WOULD

NOT LOSE... and followed up that question with " if you cannot locate them,

then let me know how many people I can bring to assist me in MY search for

them, " she began her search. She was REALLY irked, later, when she called

me to say she'd founf them, adding " I want you to appreciate how much time

was spent looking for these films! "

You think I took that from her? No way! My response: " Well, since we are

talking about films that everyone at USC understood were originals, with no

copies in existence, & we were given every assurance they would NOT be lost,

nor misplaced. So, since these films are essentially medical evidence that

will prove Jim DOESN'T have cancer, you can console yourself with the

knowledge that all that time spent in the search ACTUALLY SAVED A LIFE!!! "

Criminy.

My point? Jim had the most upper-tier, PPO, incredible insurance EVER.

What additional horrors might have taken place had Jim NOT had top-notch

health care? I shudder to think...

....and it makes me wonder about , and some of the behind-the-scenes

forces that might (not are, but might) be at work. You know?

is a Christian, as am I (as are Jim & ), we make no secret

about that. And for us, it's easier to cling to our faith, & trust that God

does have a plan. God's Word commands us not to worry, & it says our God is

not a God of fear... but I have to be brutally honest with myself, and at

least admit to this group that I am worried, and I am afraid... for .

Excuse what has become a rant, but this kinda thing is painfully reminiscent

of when I lost my friend Shauna Saunders, from this group. Her family

didn't even KNOW Shauna wasn't status one until Shauna's condition was

already spiraling down. Her death so profoundly impacted me, & blew a hole

through my gut (my own family didn't even understand why I was so broken up

about someone I had not yet met in person... but Shauna & I were kindred

spirits), it made me NOT want to care that deeply for anyone else in this

group, lest they die, too...

....I didn't want my friendship with to grow to the same level of

genuine love... I didn't want to think about the possibility of losing

, too. I'm doing my best to tell not only , but myself, what

should be said out loud... IS going to be okay, & she WILL get her

transplant in time, and she will be returned to an amazing physical quality

of life that she's probably forgotten she once had. God DOES have a plan,

and things ARE going to work out for her, and this IS all going to turn her

into this world's most amazing motivational speaker (that's what she's

indicated she'd like to do, that, & write the book she promised the " other "

she'd write, for the two of them!).

I have to go... this has gone beyond making me sad ( & mad), it is starting

to absolutely crush my soul. :-(

*crying*

Jett-ScherderCB update

27 to 7 does seem like an awfully profound drop, especially for someone

that does not seem to have made such strides in terms of her actual

sickness. Are they really comfortable relying on one set of labs like

that? My understanding is that lab tests actually have a fairly high

error rate - shouldn't they at least run the tests again before

essentially taking her off the list? Does anyone know how this works?

Thanks,

Nina in Philly

[Guest guest]

I applaud your passion and praise GOD for his plan, which seems to include you.

Ian

If we were talking Jim, not ... & had I been there, at his side, youcan bet your sweet bippy I'd have threatened " unsafe discharge, " demandingto see the hospital's patient advocate, & basically turning that hospital

upside-down in order to REPEAT any tests to confirm just that, Nina! But was alone at the time, probably in shock upon hearing the news ofher latest MELD score. She's a brilliant, brilliant gal... but this is a

lesson for everyone here: it's all about the proactive medical advocacy.If she knew placement of a filter would move her MELD from a 27 to a 7, doyou think she would have consented to the procedure, knowing it would set

her back to square one (hot-under-the-collar Maureen asked, rhetorically!)?Interesting question to ponder, isn't it?Don't get me wrong, IMHO does an absolutely outstanding job beingproactive in her care, but if Jim were in her place & informed he'd just

been downgraded from a MELD 27 to a 7... Jim would have said " okay. " And if informed he needed to pack up his stuff & get ready for hospitaldischarge, Jim would have again said " okay, " probably adding, " thank you. "

Call me an ole stubborn Irishwoman, but it's my willingness to step right upto such Goliaths, standing on a ladder if need be to look em all square inthe eye, & say things akin to " uh, NO!!! " that helped keep Jim alive. As I've said before, told me her social worker was absolutelyscreaming. To that, I say, God bless that social worker, for caring forwhat is right, and fair, and true! But 's doctors were divided on

certain issues, some arguing for, others against. Akin to, perhaps, those taking their Hippocratic Oath seriously one one endof the see-saw, up & downing with bureaucrats conducting a wallet biopsy on

the other? I'll risk starting WWIII & actually dare to say it: hasbeen through SO MUCH on her unique PSC roller coaster saga so far, I findmyself beginning to wonder if there might be some in her vast medical

community with the hidden agenda that maybe, for whatever reason they arenot disclosing to , they just don't want to see her transplanted?).Case in point: why else would a transplant coordinator take a file & thrust

it into the back of a drawer, to forget it even existed? That coordinatoris no longer in charge of their caseload & their employment has beenterminated, thank God... but still... it all just makes you think.

Go back to the archives & read how HARD I had to FIGHT to get Jim txd USC.They " thought " he had cancer, they " thought " they detected what might be amass... when I assured them what they were actually seeing was Jim's liver

attempting to regenerate after one massive, gnarly cholangitis attack, theydismissed me (after all, I'm no doctor). But thank God Aubrey in this groupempowered me to fight that fight, when I posted the medicalspeak to this

group, for him to explain things to me in dumbed-down English ( & Aubrey, Godbless him, said there was nothing that indicated to HIM what USC was tellingME). When I brought up prior (original) ct-scan films to USC, to prove Jim

had this odd tendency to have these suspicious ct-scans (in close proximityto cholangitis attacks), you know what happened? THEY LOST THE FILMS. I asked the tx coordinator how much time she would require TO FIND THE ONLY

FILMS IN EXISTENCE, WHICH, PRIOR TO RECEIVING THEM, THEY SWORE THEY WOULDNOT LOSE... and followed up that question with " if you cannot locate them,then let me know how many people I can bring to assist me in MY search for

them, " she began her search. She was REALLY irked, later, when she calledme to say she'd founf them, adding " I want you to appreciate how much timewas spent looking for these films! "

You think I took that from her? No way! My response: " Well, since we aretalking about films that everyone at USC understood were originals, with nocopies in existence, & we were given every assurance they would NOT be lost,

nor misplaced. So, since these films are essentially medical evidence thatwill prove Jim DOESN'T have cancer, you can console yourself with theknowledge that all that time spent in the search ACTUALLY SAVED A LIFE!!! " Criminy.My point? Jim had the most upper-tier, PPO, incredible insurance EVER.What additional horrors might have taken place had Jim NOT had top-notchhealth care? I shudder to think......and it makes me wonder about , and some of the behind-the-scenes

forces that might (not are, but might) be at work. You know? is a Christian, as am I (as are Jim & ), we make no secretabout that. And for us, it's easier to cling to our faith, & trust that God

does have a plan. God's Word commands us not to worry, & it says our God isnot a God of fear... but I have to be brutally honest with myself, and atleast admit to this group that I am worried, and I am afraid... for .

Excuse what has become a rant, but this kinda thing is painfully reminiscentof when I lost my friend Shauna Saunders, from this group. Her familydidn't even KNOW Shauna wasn't status one until Shauna's condition was

already spiraling down. Her death so profoundly impacted me, & blew a holethrough my gut (my own family didn't even understand why I was so broken upabout someone I had not yet met in person... but Shauna & I were kindred

spirits), it made me NOT want to care that deeply for anyone else in thisgroup, lest they die, too... ...I didn't want my friendship with to grow to the same level ofgenuine love... I didn't want to think about the possibility of losing

, too. I'm doing my best to tell not only , but myself, whatshould be said out loud... IS going to be okay, & she WILL get hertransplant in time, and she will be returned to an amazing physical quality

of life that she's probably forgotten she once had. God DOES have a plan,and things ARE going to work out for her, and this IS all going to turn herinto this world's most amazing motivational speaker (that's what she's

indicated she'd like to do, that, & write the book she promised the " other " she'd write, for the two of them!).I have to go... this has gone beyond making me sad ( & mad), it is starting

to absolutely crush my soul. :-(*crying* Jett-ScherderCB update27 to 7 does seem like an awfully profound drop, especially for someone that does not seem to have made such strides in terms of her actual sickness. Are they really comfortable relying on one set of labs like that? My understanding is that lab tests actually have a fairly high

error rate - shouldn't they at least run the tests again before essentially taking her off the list? Does anyone know how this works? Thanks,Nina in Philly

-- Ian Cribb P.Eng.

[Guest guest]

Dear MAureen,

thank you for saying out loud what a lot of us are thinking,, but cannot

articulate.

Penny T

>

>

>

>>

>> If we were talking Jim, not ... & had I been there, at his side,

>> you

>> can bet your sweet bippy I'd have threatened " unsafe discharge, "

>> demanding

>> to see the hospital's patient advocate, & basically turning that hospital

>> upside-down in order to REPEAT any tests to confirm just that, Nina! But

>> was alone at the time, probably in shock upon hearing the news of

>> her latest MELD score. She's a brilliant, brilliant gal... but this is a

>> lesson for everyone here: it's all about the proactive medical advocacy.

>>

>> If she knew placement of a filter would move her MELD from a 27 to a 7,

>> do

>> you think she would have consented to the procedure, knowing it would set

>> her back to square one (hot-under-the-collar Maureen asked,

>> rhetorically!)?

>> Interesting question to ponder, isn't it?

>>

>> Don't get me wrong, IMHO does an absolutely outstanding job being

>> proactive in her care, but if Jim were in her place & informed he'd just

>> been downgraded from a MELD 27 to a 7... Jim would have said " okay. "

>>

>> And if informed he needed to pack up his stuff & get ready for hospital

>> discharge, Jim would have again said " okay, " probably adding, " thank

>> you. "

>>

>> Call me an ole stubborn Irishwoman, but it's my willingness to step right

>> up

>> to such Goliaths, standing on a ladder if need be to look em all square

>> in

>> the eye, & say things akin to " uh, NO!!! " that helped keep Jim alive.

>>

>> As I've said before, told me her social worker was absolutely

>> screaming. To that, I say, God bless that social worker, for caring for

>> what is right, and fair, and true! But 's doctors were divided on

>> certain issues, some arguing for, others against.

>>

>> Akin to, perhaps, those taking their Hippocratic Oath seriously one one

>> end

>> of the see-saw, up & downing with bureaucrats conducting a wallet biopsy

>> on

>> the other? I'll risk starting WWIII & actually dare to say it:

>> has

>> been through SO MUCH on her unique PSC roller coaster saga so far, I find

>> myself beginning to wonder if there might be some in her vast medical

>> community with the hidden agenda that maybe, for whatever reason they are

>> not disclosing to , they just don't want to see her

>> transplanted?).

>> Case in point: why else would a transplant coordinator take a file &

>> thrust

>> it into the back of a drawer, to forget it even existed? That coordinator

>> is no longer in charge of their caseload & their employment has been

>> terminated, thank God... but still... it all just makes you think.

>>

>> Go back to the archives & read how HARD I had to FIGHT to get Jim txd

>> USC.

>> They " thought " he had cancer, they " thought " they detected what might be

>> a

>> mass... when I assured them what they were actually seeing was Jim's

>> liver

>> attempting to regenerate after one massive, gnarly cholangitis attack,

>> they

>> dismissed me (after all, I'm no doctor). But thank God Aubrey in this

>> group

>> empowered me to fight that fight, when I posted the medicalspeak to this

>> group, for him to explain things to me in dumbed-down English ( & Aubrey,

>> God

>> bless him, said there was nothing that indicated to HIM what USC was

>> telling

>> ME). When I brought up prior (original) ct-scan films to USC, to prove

>> Jim

>> had this odd tendency to have these suspicious ct-scans (in close

>> proximity

>> to cholangitis attacks), you know what happened? THEY LOST THE FILMS.

>>

>> I asked the tx coordinator how much time she would require TO FIND THE

>> ONLY

>> FILMS IN EXISTENCE, WHICH, PRIOR TO RECEIVING THEM, THEY SWORE THEY WOULD

>> NOT LOSE... and followed up that question with " if you cannot locate

>> them,

>> then let me know how many people I can bring to assist me in MY search

>> for

>> them, " she began her search. She was REALLY irked, later, when she called

>> me to say she'd founf them, adding " I want you to appreciate how much

>> time

>> was spent looking for these films! "

>>

>> You think I took that from her? No way! My response: " Well, since we are

>> talking about films that everyone at USC understood were originals, with

>> no

>> copies in existence, & we were given every assurance they would NOT be

>> lost,

>> nor misplaced. So, since these films are essentially medical evidence

>> that

>> will prove Jim DOESN'T have cancer, you can console yourself with the

>> knowledge that all that time spent in the search ACTUALLY SAVED A

>> LIFE!!! "

>>

>>

>> Criminy.

>>

>> My point? Jim had the most upper-tier, PPO, incredible insurance EVER.

>> What additional horrors might have taken place had Jim NOT had top-notch

>> health care? I shudder to think...

>>

>> ...and it makes me wonder about , and some of the

>> behind-the-scenes

>> forces that might (not are, but might) be at work. You know?

>>

>> is a Christian, as am I (as are Jim & ), we make no secret

>> about that. And for us, it's easier to cling to our faith, & trust that

>> God

>> does have a plan. God's Word commands us not to worry, & it says our God

>> is

>> not a God of fear... but I have to be brutally honest with myself, and at

>> least admit to this group that I am worried, and I am afraid... for

>> .

>>

>> Excuse what has become a rant, but this kinda thing is painfully

>> reminiscent

>> of when I lost my friend Shauna Saunders, from this group. Her family

>> didn't even KNOW Shauna wasn't status one until Shauna's condition was

>> already spiraling down. Her death so profoundly impacted me, & blew a

>> hole

>> through my gut (my own family didn't even understand why I was so broken

>> up

>> about someone I had not yet met in person... but Shauna & I were kindred

>> spirits), it made me NOT want to care that deeply for anyone else in this

>> group, lest they die, too...

>>

>> ...I didn't want my friendship with to grow to the same level of

>> genuine love... I didn't want to think about the possibility of losing

>> , too. I'm doing my best to tell not only , but myself,

>> what

>> should be said out loud... IS going to be okay, & she WILL get

>> her

>> transplant in time, and she will be returned to an amazing physical

>> quality

>> of life that she's probably forgotten she once had. God DOES have a plan,

>> and things ARE going to work out for her, and this IS all going to turn

>> her

>> into this world's most amazing motivational speaker (that's what she's

>> indicated she'd like to do, that, & write the book she promised the

>> " other "

>> she'd write, for the two of them!).

>>

>> I have to go... this has gone beyond making me sad ( & mad), it is

>> starting

>> to absolutely crush my soul. :-(

>>

>> *crying*

>>

>>

>> Jett-ScherderCB update

>>

>> 27 to 7 does seem like an awfully profound drop, especially for someone

>> that does not seem to have made such strides in terms of her actual

>> sickness. Are they really comfortable relying on one set of labs like

>> that? My understanding is that lab tests actually have a fairly high

>> error rate - shouldn't they at least run the tests again before

>> essentially taking her off the list? Does anyone know how this works?

>> Thanks,

>>

>> Nina in Philly

>>

>>

>>

>

>

>

> --

> Ian Cribb P.Eng.

>

>