Re: Re: Transplant Centers

[Guest guest]

Rita At your son's age he should be getting extra points because he is a child. Martirmellett2 wrote: I have not been involved with this list for many months as my 16 year son was diagnosed last February with PSC with a cirrhotic liver. He has only 3-5% reserve left. He has had 2 bouts of bile duct infections that required picc lines for antibiotics. Currently he is having issues with malabsorbtion. In spite of thse problems his MELD score is only 16 and

we have not been successful in attempts to get it increased. We live in Northern CA and Region 5 is very competitive. Therefore I am seriously thinking of taking him up to Seattle Children's Hospital and/or Nebraska Medical Center to get evaluated for their lists as they are in other regions. It has seemed like a no win situation. If I manage his disease so that he can have some quality of life, he doesn't get worse, if he doesn't get worse he can't get better. Has anyone had experience listing in other regions?? And specifically the above mention centers???Thank you,Rita

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Yahoo! Autos.

[Guest guest]

Rita At your son's age he should be getting extra points because he is a child. Martirmellett2 wrote: I have not been involved with this list for many months as my 16 year son was diagnosed last February with PSC with a cirrhotic liver. He has only 3-5% reserve left. He has had 2 bouts of bile duct infections that required picc lines for antibiotics. Currently he is having issues with malabsorbtion. In spite of thse problems his MELD score is only 16 and

we have not been successful in attempts to get it increased. We live in Northern CA and Region 5 is very competitive. Therefore I am seriously thinking of taking him up to Seattle Children's Hospital and/or Nebraska Medical Center to get evaluated for their lists as they are in other regions. It has seemed like a no win situation. If I manage his disease so that he can have some quality of life, he doesn't get worse, if he doesn't get worse he can't get better. Has anyone had experience listing in other regions?? And specifically the above mention centers???Thank you,Rita

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Yahoo! Autos.

[Guest guest]

the unos board will not budge. they don't have any paediatricians on the team.

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

> Rita

> At your son's age he should be getting extra points because he is a child.

> Marti

>

> rmellett2 wrote:

> I have not been involved with this list for many months as my 16

year

> son was diagnosed last February with PSC with a cirrhotic liver. He has

> only 3-5% reserve left. He has had 2 bouts of bile duct infections that

> required picc lines for antibiotics. Currently he is having issues with

> malabsorbtion. In spite of thse problems his MELD score is only 16 and

> we have not been successful in attempts to get it increased. We live in

> Northern CA and Region 5 is very competitive. Therefore I am seriously

> thinking of taking him up to Seattle Children's Hospital and/or

> Nebraska Medical Center to get evaluated for their lists as they are in

> other regions. It has seemed like a no win situation. If I manage his

> disease so that he can have some quality of life, he doesn't get worse,

> if he doesn't get worse he can't get better. Has anyone had experience

> listing in other regions?? And specifically the above mention centers???

>

> Thank you,

> Rita

>

>

>

>

>

>

> ---------------------------------

> Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Yahoo! Autos.

Rita At your son's age he should be getting extra points because he is a child. Martirmellett2 <rmellett2 (AT) comcast (DOT) net> wrote: I have not been involved with this list for many months as my 16 year son was diagnosed last February with PSC with a cirrhotic liver. He has only 3-5% reserve left. He has had 2 bouts of bile duct infections that required picc lines for antibiotics. Currently he is having issues with malabsorbtion. In spite of thse problems his MELD score is only 16 and

we have not been successful in attempts to get it increased. We live in Northern CA and Region 5 is very competitive. Therefore I am seriously thinking of taking him up to Seattle Children's Hospital and/or Nebraska Medical Center to get evaluated for their lists as they are in other regions. It has seemed like a no win situation. If I manage his disease so that he can have some quality of life, he doesn't get worse, if he doesn't get worse he can't get better. Has anyone had experience listing in other regions?? And specifically the above mention centers???Thank you,Rita

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Yahoo! Autos.

[Guest guest]

do they allow extra points for children???

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

Rita

At your son's age he should be getting extra points because he is a child.

Martirmellett2 <rmellett2 (AT) comcast (DOT) net> wrote:

I have not been involved with this list for many months as my 16 year son was diagnosed last February with PSC with a cirrhotic liver. He has only 3-5% reserve left. He has had 2 bouts of bile duct infections that required picc lines for antibiotics. Currently he is having issues with malabsorbtion. In spite of thse problems his MELD score is only 16 and we have not been successful in attempts to get it increased. We live in Northern CA and Region 5 is very competitive. Therefore I am seriously thinking of taking him up to Seattle Children's Hospital and/or Nebraska Medical Center to get evaluated for their lists as they are in other regions. It has seemed like a no win situation. If I manage his disease so that he can have some quality of life, he doesn't get worse, if he doesn't get worse he can't get better. Has anyone had experience listing in other regions?? And specifically the above mention centers???Thank you,

Rita

Ahhh...imagining that irresistible "new car" smell?Check out new cars at Yahoo! Autos.

[Guest guest]

Is your son being evaluated at a pediatirc center? I know you are west coast so the center my son was at is a long way a way. My son was at Bostin Children's. His primary DR was a hepatologist who was also a Harvard professor. She was also on the board. We got the points. He still did not have enough and eventually we did a living donor. Is that an option for you. They used 72% of my liver. Livers are quite amazing little things. In less than 3 months, the 28% I have left was back to full size. I have a very physical job (I am a nurse) and out side of having put on weight I would never know I had the surgery. Marti rmellett2@... wrote: the unos board will not budge. they don't have any paediatricians on the team.-------------- Original message ----------------------From: Marti <marti0355 (AT) yahoo (DOT) com>> Rita> At your son's age he should be getting extra points because he is a child.> Marti> > rmellett2 <rmellett2 (AT) comcast (DOT) net> wrote:> I have not been involved with this list for many months as my 16 year > son was diagnosed last February with PSC with a cirrhotic liver. He has > only 3-5% reserve left. He has had 2 bouts of bile duct infections that > required picc lines for antibiotics. Currently he is having issues with > malabsorbtion. In spite

of thse problems his MELD score is only 16 and > we have not been successful in attempts to get it increased. We live in > Northern CA and Region 5 is very competitive. Therefore I am seriously > thinking of taking him up to Seattle Children's Hospital and/or > Nebraska Medical Center to get evaluated for their lists as they are in > other regions. It has seemed like a no win situation. If I manage his > disease so that he can have some quality of life, he doesn't get worse, > if he doesn't get worse he can't get better. Has anyone had experience > listing in other regions?? And specifically the above mention centers???> > Thank you,> Rita> > > > > > > ---------------------------------> Ahhh...imagining that irresistible "new car" smell?Check outnew cars at Yahoo!

Autos.To: Subject: Re: Re: Transplant CentersDate: Sun, 29 Apr 2007 00:47:59 +0000 Rita At your son's age he should be getting extra points because he is a child. Martirmellett2 <rmellett2 (AT) comcast (DOT) net> wrote: I have not been involved with this list for many months as my 16 year son was diagnosed last February with PSC with a cirrhotic liver. He has only 3-5% reserve left. He has had 2 bouts of bile duct infections that required picc lines for antibiotics. Currently he is having issues with malabsorbtion. In spite of thse problems his MELD score is only 16 and we have not been successful in attempts to get it increased. We live in Northern CA and Region 5 is very competitive. Therefore I am seriously thinking of taking him up to Seattle Children's Hospital and/or Nebraska Medical Center to get evaluated for their lists as they are in other regions. It has seemed like a no win situation. If I manage his disease so that he can have some quality of life, he doesn't get worse, if he doesn't get worse he can't get better. Has anyone had experience listing in other regions?? And specifically the above mention

centers???Thank you,Rita Ahhh...imagining that irresistible "new car" smell?Check out new cars at Yahoo! Autos.

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Yahoo! Autos.