Re: transplant eligibility

[Guest guest]

Hi Cheryl;

Your mention of Wegener's granulamatosis immediately leads to suspicion of

rapidly progressive segmental necrotising glomerulonephritis as a possible cause

of your kidney problem; apparently 75% of patients with Wegener's granulamatosis

have this kidney disease:

http://en.wikipedia.org/wiki/Wegener's_granulomatosis

If this is the cause, then immunosuppression should help!

If your kidney disease was adequately suppressed by immunosuppressants, I don't

see a logical reason why this would reduce your eligibility for liver

transplantation in the long-run.

Best regards,

Dave

(father of (23); PSC 07/03; UC 08/03)

[Guest guest]

Cheryl,

Good luck and God bless. I know by the thought you are putting into your time with the surgeon you will make the most of your consult. I don't have any information for you. I just wanted to send you good ol positive vibes.

in MO.

Son, Nick(9)liver disease 1/09

Subject: transplant eligibilityTo: Date: Wednesday, April 8, 2009, 10:54 PM

or anyone else who can find an answer,I have not been able to find information about eligibility for transplant with concurrent systemic autoimmune diseases (say replapsing polychondritis or wegener's granulamatosis or even both). I have a friend that got multiple transplants (5+), but he had one disease process: hollow viscous myopathy. He has lived about 7 years now, but his quality of life is severely limited. I have an opportunity to consult with the chief liver transplant surgeon in the Intermountain West on Apr 18. My uncle knows him kind of and talked to him about me, and he offered to see me for a consult. I really want to have focused questions ready to ask him. I'm very concerned about going to the best place for my overall health since I have been dx with Relapsing Polychondritis and we've discovered there is something the matter with my kidneys. I don't know how to light a fire under doctors. I would really

like to get some tests done to find out exactly what is going on with my kidneys. If anyone has any ideas or information I would appreciate any and all. Doctors never seem to feel the urgency that we patients do, do they? Thanks for any help, take care, Cheryl ID, 50, PSC/UC/RP/undx kidney problem

[Guest guest]

Cheryl,

Good luck and God bless. I know by the thought you are putting into your time with the surgeon you will make the most of your consult. I don't have any information for you. I just wanted to send you good ol positive vibes.

in MO.

Son, Nick(9)liver disease 1/09

Subject: transplant eligibilityTo: Date: Wednesday, April 8, 2009, 10:54 PM

or anyone else who can find an answer,I have not been able to find information about eligibility for transplant with concurrent systemic autoimmune diseases (say replapsing polychondritis or wegener's granulamatosis or even both). I have a friend that got multiple transplants (5+), but he had one disease process: hollow viscous myopathy. He has lived about 7 years now, but his quality of life is severely limited. I have an opportunity to consult with the chief liver transplant surgeon in the Intermountain West on Apr 18. My uncle knows him kind of and talked to him about me, and he offered to see me for a consult. I really want to have focused questions ready to ask him. I'm very concerned about going to the best place for my overall health since I have been dx with Relapsing Polychondritis and we've discovered there is something the matter with my kidneys. I don't know how to light a fire under doctors. I would really

like to get some tests done to find out exactly what is going on with my kidneys. If anyone has any ideas or information I would appreciate any and all. Doctors never seem to feel the urgency that we patients do, do they? Thanks for any help, take care, Cheryl ID, 50, PSC/UC/RP/undx kidney problem

[Guest guest]

,

thank you very much. I feel the vibes. Take care, Cheryl

Re: transplant eligibility

> Cheryl,

>  

> Good luck and God bless. I know by the thought you are putting into your time

with the surgeon you will make the most of your consult. I don't have any

information for you. I just wanted to send you good ol positive vibes.

>  

> in MO.

> Son, Nick(9)liver disease 1/09

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[Guest guest]

,

thank you very much. I feel the vibes. Take care, Cheryl

Re: transplant eligibility

> Cheryl,

>  

> Good luck and God bless. I know by the thought you are putting into your time

with the surgeon you will make the most of your consult. I don't have any

information for you. I just wanted to send you good ol positive vibes.

>  

> in MO.

> Son, Nick(9)liver disease 1/09

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[Guest guest]

,

Thank you so much for finding that for me. I tried to get a hold of the dr who

dx the RP and told me he suspects WG might be involved in my kidney problem

(it's been over a week), but he is out of town till monday. When they were doing

all the tests while trying to dx me, I would stress while waiting for the

results. After dx, I researched like crazy the disease, how it might manifest

itself. I knew what to expect. Waiting for tests no longer bothered me. But

since the dr told me there was something the matter with my kidney, I find I am

very distressed. I can't figure out why dr would be hesitant to treat me with

DMARDs and pred. So my liver fails a little quicker. I get my transplant (Deo

Volente) and the protocol post transplant is DMARDs and Pred. I don't understand

why a doctor would want me to take the risk of destroying, my hearing, eyesight,

kidney failure, trachea collapse to save my failing liver?

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

From: " " rhodesdavid1@...

>

> If your kidney disease was adequately suppressed by immunosuppressants, I

don't see a logical reason why this would reduce your eligibility for liver

transplantation in the long-run.

>

> Best regards,

>

> Dave

> (father of (23); PSC 07/03; UC 08/03)

>

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