Re: Re: Husband's Insurance Denied Transplant

[Guest guest]

-----Original

Message-----On Behalf Of

McInerney

When my wife Lori was first evaluated to be placed on the waiting

list, her MELD was 13. And the only reason she was

placed on the list

was that she had a colectomy scheduled. The transplant team didn't

know

how the liver would react during

the removal of the

colon, so they placed

her on the waiting list *just in case*.

Maybe a colectomy is

the key to Lonnie’s early listing.

According to Lonnie’s

web site his team said almost

the same

exact thing.

Barb in Texas

[Guest guest]

-----Original

Message-----On Behalf Of

McInerney

When my wife Lori was first evaluated to be placed on the waiting

list, her MELD was 13. And the only reason she was

placed on the list

was that she had a colectomy scheduled. The transplant team didn't

know

how the liver would react during

the removal of the

colon, so they placed

her on the waiting list *just in case*.

Maybe a colectomy is

the key to Lonnie’s early listing.

According to Lonnie’s

web site his team said almost

the same

exact thing.

Barb in Texas

[Guest guest]

-----Original

Message-----On Behalf Of

McInerney

When my wife Lori was first evaluated to be placed on the waiting

list, her MELD was 13. And the only reason she was

placed on the list

was that she had a colectomy scheduled. The transplant team didn't

know

how the liver would react during

the removal of the

colon, so they placed

her on the waiting list *just in case*.

Maybe a colectomy is

the key to Lonnie’s early listing.

According to Lonnie’s

web site his team said almost

the same

exact thing.

Barb in Texas

[Guest guest]

Litsa and all,

I am sensitive

about the whole thing too. I think we are all human beings and while I am

in agreement with MELD too, I get frustrated with it. I get frustrated

with all the people here who are my friends who are suffering who need not be

and I don’t think one person any one person can say when it is too early.

It is hard enough to get a MELD to start with. Noah has not gotten to

that point yet, but when he does it is with baited breath that you don’t

know whether to rejoice or be sick. None of us WANT to be here.

Getting a MELD and when your MELD gets you transplanted is totally dependent on

where you are and where the center you are is transplanting. I am at this

point where I just don’t know what to want and I am sure there are lots

of us who are there. I guess I want him healed and incision free. Is

that realistic? No, so since that is not I guess I would like to be able

to help him while he is still small enough to accept a liver from me because of

his size.

I know I am

rambling now, but I am thinking about this a lot lately. He will

hopefully grow to be taller than me…will I be able to help then…probably

not. We do have a window here. Do I want him sick now?

NO! Is a cure coming down the pike? I sure hope so, but probably

not before he needs it. Sorry to be such a downer, but I am just trying

to be a realist for my own good here.

I think we need

to get back on to the fundraising bandwagon. I was supposed to do the corporate

fundraising thing and frankly have been quite depressed about the success or

lack there of the whole thing. We need to get some grants written and I

am up for the task. I am feeling the energy! Just give me the green

light!

Blessings,

Mom of Zoe (13) My very normal (teenager normal) soccer player;

Noah (8) Indeterminate colitis, PSC, Osteopenia (1-4 lumbar

vertebrae);

Aidan (4 1/2) Moderately-severe SNHL bilaterally

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[Guest guest]

I get the MELD

scoring thing, I just meant to get listed it takes a lot of work and time.

Sorry I said

anything.

M

Mom of Zoe (13) My very normal (teenager normal) soccer player;

Noah (8) Indeterminate colitis, PSC, Osteopenia (1-4 lumbar

vertebrae);

Aidan (4 1/2) Moderately-severe SNHL bilaterally

Recycle

Yourself

Become an

Organ Donor

[Guest guest]

-----Original

Message----jasonsea

Transplantation is a very risky procedure with a large potential

for complications.

I did a fast check on

MELD scores & transplants for 2006 – nation wide.

MELD under 10 - 48

people transplanted so far this year

MELD 11-18 – 264

people

MELD 19-24 – 538

MELD 25+ - 546

[Guest guest]

-----Original

Message----jasonsea

Transplantation is a very risky procedure with a large potential

for complications.

I did a fast check on

MELD scores & transplants for 2006 – nation wide.

MELD under 10 - 48

people transplanted so far this year

MELD 11-18 – 264

people

MELD 19-24 – 538

MELD 25+ - 546

[Guest guest]

will likely be one of those patients. His score is VERY low, as long as we keep on the every THREE WEEKS ERCP schedule. But no one, child or adult, should have to live like that. Throwing up every day. Itching constantly (the Rifampin they finally put him on does seem to be helping, though - but we have to watch his prograf much closer now, too). I know one of 's GI's did mention, too, that when the score is low, but the situation is similar to his, they can call UNOS and give them the situation and sometimes they will bump them higher on the list than what they would be by score alone, because a patient's situation IS more than numbers. AmiTim Romlein wrote: 30% of the transplants with MELD under 10 were pediatric - a much higher percentage than the 9% of all transplants this year that were for pediatric patients.> I did a fast check on MELD scores & transplants for 2006 - nation wide.> > MELD under 10 - 48 people transplanted so far this year> MELD 11-18 - 264 people > MELD 19-24 - 538> MELD 25+ - 546>Ami mom to - 8 yrs old - Double Lung Tx 2/26/2006, PSCholangitis - pre-liver Tx (Aug or Sept, 2006), Central DI, Steroid Induced Diabetes, HypoT, GERD, High Blood Pressure, ADD, Anemia, Malabsorption, Slow Motility http://www.caringbridge.com/visit/seanfox mom to Emma - 12 yrs old - Migraines, otherwise good & healthy (thankfully) stepmom to - 13 yrs old - ADD, RAD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Generosity begins with our recognition of our debt to others. -Master Hsing Yun, Fulfillment of desire is an illusion; desire leads to more desire, not satisfaction.-Kathleen Mc, "How to Meditate"

Ring'em or ping'em. Make PC-to-phone calls as low as 1¢/min with Yahoo! Messenger with Voice.

[Guest guest]

will likely be one of those patients. His score is VERY low, as long as we keep on the every THREE WEEKS ERCP schedule. But no one, child or adult, should have to live like that. Throwing up every day. Itching constantly (the Rifampin they finally put him on does seem to be helping, though - but we have to watch his prograf much closer now, too). I know one of 's GI's did mention, too, that when the score is low, but the situation is similar to his, they can call UNOS and give them the situation and sometimes they will bump them higher on the list than what they would be by score alone, because a patient's situation IS more than numbers. AmiTim Romlein wrote: 30% of the transplants with MELD under 10 were pediatric - a much higher percentage than the 9% of all transplants this year that were for pediatric patients.> I did a fast check on MELD scores & transplants for 2006 - nation wide.> > MELD under 10 - 48 people transplanted so far this year> MELD 11-18 - 264 people > MELD 19-24 - 538> MELD 25+ - 546>Ami mom to - 8 yrs old - Double Lung Tx 2/26/2006, PSCholangitis - pre-liver Tx (Aug or Sept, 2006), Central DI, Steroid Induced Diabetes, HypoT, GERD, High Blood Pressure, ADD, Anemia, Malabsorption, Slow Motility http://www.caringbridge.com/visit/seanfox mom to Emma - 12 yrs old - Migraines, otherwise good & healthy (thankfully) stepmom to - 13 yrs old - ADD, RAD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Generosity begins with our recognition of our debt to others. -Master Hsing Yun, Fulfillment of desire is an illusion; desire leads to more desire, not satisfaction.-Kathleen Mc, "How to Meditate"

Ring'em or ping'em. Make PC-to-phone calls as low as 1¢/min with Yahoo! Messenger with Voice.

[Guest guest]

will likely be one of those patients. His score is VERY low, as long as we keep on the every THREE WEEKS ERCP schedule. But no one, child or adult, should have to live like that. Throwing up every day. Itching constantly (the Rifampin they finally put him on does seem to be helping, though - but we have to watch his prograf much closer now, too). I know one of 's GI's did mention, too, that when the score is low, but the situation is similar to his, they can call UNOS and give them the situation and sometimes they will bump them higher on the list than what they would be by score alone, because a patient's situation IS more than numbers. AmiTim Romlein wrote: 30% of the transplants with MELD under 10 were pediatric - a much higher percentage than the 9% of all transplants this year that were for pediatric patients.> I did a fast check on MELD scores & transplants for 2006 - nation wide.> > MELD under 10 - 48 people transplanted so far this year> MELD 11-18 - 264 people > MELD 19-24 - 538> MELD 25+ - 546>Ami mom to - 8 yrs old - Double Lung Tx 2/26/2006, PSCholangitis - pre-liver Tx (Aug or Sept, 2006), Central DI, Steroid Induced Diabetes, HypoT, GERD, High Blood Pressure, ADD, Anemia, Malabsorption, Slow Motility http://www.caringbridge.com/visit/seanfox mom to Emma - 12 yrs old - Migraines, otherwise good & healthy (thankfully) stepmom to - 13 yrs old - ADD, RAD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Generosity begins with our recognition of our debt to others. -Master Hsing Yun, Fulfillment of desire is an illusion; desire leads to more desire, not satisfaction.-Kathleen Mc, "How to Meditate"

Ring'em or ping'em. Make PC-to-phone calls as low as 1¢/min with Yahoo! Messenger with Voice.

[Guest guest]

I think we all

are forgetting what we have had doctors tell many of us over and over which is

that MELD scoring is not completely fair to PSC patients in giving a good and

accurate picture of how bad PSCers really are and I think Ami’s is a

good one to look at to see how his quality of life is suffering.

P.S. I am

here for the support part of the group, I am hoping that is still why most of us

are. I really need the support, not the argumentative assertions that

seem to rise out of many of these subjects.

Mom of Zoe (13) My very normal (teenager normal) soccer player;

Noah (8) Indeterminate colitis, PSC, Osteopenia (1-4 lumbar

vertebrae);

Aidan (4 1/2) Moderately-severe SNHL bilaterally

Recycle

Yourself

Become an

Organ Donor

[Guest guest]

When had his living donor tx last year he had a score of about 13 and when they opened him up his liver fell apart and they said he probably would have been dead in a week without the tx. It was clear proof to me that with PSC the scoring system is flawed. MartiAmi Fox wrote: will likely be one of those patients. His score is VERY low, as long as we keep on the every THREE WEEKS ERCP schedule. But no one, child or adult, should have to live like that. Throwing up every day. Itching constantly (the Rifampin they finally put him on does seem to be helping, though - but we have to watch his prograf much closer now, too). I know one of 's GI's did mention, too, that when the score is low, but the situation is similar to his, they can call UNOS and

give them the situation and sometimes they will bump them higher on the list than what they would be by score alone, because a patient's situation IS more than numbers. AmiTim Romlein wrote: 30% of the transplants with MELD under 10 were pediatric - a much higher percentage than the 9% of all transplants this year that were for pediatric patients.> I did a fast check on MELD scores & transplants for 2006 - nation wide.> > MELD under 10 - 48 people transplanted so far this year> MELD 11-18 - 264 people > MELD 19-24 - 538> MELD 25+ -

546> Ami mom to - 8 yrs old - Double Lung Tx 2/26/2006, PSCholangitis - pre-liver Tx (Aug or Sept, 2006), Central DI, Steroid Induced Diabetes, HypoT, GERD, High Blood Pressure, ADD, Anemia, Malabsorption, Slow Motility http://www.caringbridge.com/visit/seanfox mom to Emma - 12 yrs old - Migraines, otherwise good & healthy (thankfully) stepmom to - 13 yrs old - ADD, RAD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Generosity begins with our recognition of our debt to others. -Master Hsing Yun, Fulfillment of desire is an illusion; desire leads to more desire, not satisfaction.-Kathleen Mc, "How

to Meditate" Ring'em or ping'em. Make PC-to-phone calls as low as 1¢/min with Yahoo! Messenger with Voice.

Sneak preview the all-new Yahoo.com. It's not radically different. Just radically better.

[Guest guest]

Do you mind if I email you to get some information about how the living donor tx was? 's brother is going htorugh testing right now to see if he is a match.

-------------- Original message --------------

When had his living donor tx last year he had a score of about 13 and when they opened him up his liver fell apart and they said he probably would have been dead in a week without the tx. It was clear proof to me that with PSC the scoring system is flawed.

Marti

..

[Guest guest]

Do you mind if I email you to get some information about how the living donor tx was? 's brother is going htorugh testing right now to see if he is a match.

-------------- Original message --------------

When had his living donor tx last year he had a score of about 13 and when they opened him up his liver fell apart and they said he probably would have been dead in a week without the tx. It was clear proof to me that with PSC the scoring system is flawed.

Marti

..

[Guest guest]

Do you mind if I email you to get some information about how the living donor tx was? 's brother is going htorugh testing right now to see if he is a match.

-------------- Original message --------------

When had his living donor tx last year he had a score of about 13 and when they opened him up his liver fell apart and they said he probably would have been dead in a week without the tx. It was clear proof to me that with PSC the scoring system is flawed.

Marti

..

[Guest guest]

-----Original

Message-----

P.S.

I really need the support, not the argumentative assertions that seem to rise

out of many of these subjects.

I understand what you’re saying and can appreciate

that. But, it’s through these

“argumentative assertions” that we all learn something new. I learned that a few people do actually

get a transplant with a MELD lower then 10. I also learned that some times a person

without a colon will have lower MELD scores. Both of those are important things to

know and we wouldn’t have learned them without this discussion. Many of us learn something new everyday.

Besides, it’s important for all of us to learn the truth

about things, even if we don’t like hearing it.

[Guest guest]

-----Original

Message-----

P.S.

I really need the support, not the argumentative assertions that seem to rise

out of many of these subjects.

I understand what you’re saying and can appreciate

that. But, it’s through these

“argumentative assertions” that we all learn something new. I learned that a few people do actually

get a transplant with a MELD lower then 10. I also learned that some times a person

without a colon will have lower MELD scores. Both of those are important things to

know and we wouldn’t have learned them without this discussion. Many of us learn something new everyday.

Besides, it’s important for all of us to learn the truth

about things, even if we don’t like hearing it.

[Guest guest]

-----Original

Message-----

P.S.

I really need the support, not the argumentative assertions that seem to rise

out of many of these subjects.

I understand what you’re saying and can appreciate

that. But, it’s through these

“argumentative assertions” that we all learn something new. I learned that a few people do actually

get a transplant with a MELD lower then 10. I also learned that some times a person

without a colon will have lower MELD scores. Both of those are important things to

know and we wouldn’t have learned them without this discussion. Many of us learn something new everyday.

Besides, it’s important for all of us to learn the truth

about things, even if we don’t like hearing it.

[Guest guest]

True! It is

tough when the thing we have thought to be the case for so long are blown to

pieces. That goes for everything in our lives…not just this stuff….

I hope you are

all drier than we are.

Blessings and

all the best,

Mom of Zoe (13) My very normal (teenager normal) soccer player;

Noah (8) Indeterminate colitis, PSC, Osteopenia (1-4 lumbar

vertebrae);

Aidan (4 1/2) Moderately-severe SNHL bilaterally

Recycle

Yourself

Become an

Organ Donor