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[heart transplant]
Author: Elizabeth (---.proxy.aol.com)
Date: 10-15-02 15:31
Hi Lisa and everyone I was woundering if you can tell me if the transplant center I am taking Michael to is a center that know's alot about HMCA. I kniw that the Children's Hospital in Los Angele's does in fact have just a Cardiomyopathy clinic I don't think the one in Stanford does have a cardiomopathy clinic .Does Stanford even specialize in Cardiomopathy how can I fine out when I call and ask I get the run around all the time I really hate calling there when no one kniw's anything or they wont tell you.
Is there any body with teenage kid's out there with HMCA that would be willing to e-mail Michael?
Lisa can you please get in touch with me I have a couple of question's I would like to go over with you privately
thankyou once again for your time
Elizabeth
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[Re: heart transplant]
Author: Sarah B--Board Moderator (---.client.attbi.com)
Date: 10-15-02 15:56
Dear Elizabeth,
Please see Adam's post. He is 22, but volunteered to talk to kids/teens etc who wanted to discuss HCM. His dad and uncle both had transplants.
As for the doctor stuff, that is a Lisa question. Oh, Lisa??
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[response for Elizabeth]
Author: Adam (---.sfsu.edu)
Date: 10-15-02 19:56
Elizabeth,
I saw your post and thought I would write to you. I am 22 years old and have HCM. My father and uncle have had heart transplants (my dad was transplanted 12 years ago and my uncle ten years ago). I would be happy to talk to you. Feel free to email me anytime. I would be happy to talk to Michael as well (is Michael your son, just curious). I have some pretty good knowledge about being young with cardiomyopathy and dealing with family members who have it as well. Also, my Uncle Bob is pretty much an expert on this disease and if you want, you should post a message to him on here as well. He has helped me a lot over the years in ealing with this disease, among other things. But just to reiterate my point, I would be glad to speak to you or your son and offer any and all insight I may have that would be of help to you and your family. I wish you all the best in your journey to cope with this disease. Stay strong and feel free to write.
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[Re: response for Elizabeth]
Author: Lisa Salberg (208.47.172.---)
Date: 10-16-02 10:39
Elizabeth -
I know you took your son to see Dr. Shannon in LA - he is the best one to ask for referal infromation for regarding transplant facilities in CA for your needs. I will say that transplant centers do not need to "specialize" in HCM as the end result is that the patient will end up with a new heart and a new set of medical issues to deal with.
Bob P ...can you chime in here please, as you have been through a transplant you may well have some information to share here...And you too Chuck!
Thanks Lisa
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: response for Elizabeth]
Author: Lisa Salberg (208.47.172.---)
Date: 10-16-02 10:39
Elizabeth -
I know you took your son to see Dr. Shannon in LA - he is the best one to ask for referal infromation for regarding transplant facilities in CA for your needs. I will say that transplant centers do not need to "specialize" in HCM as the end result is that the patient will end up with a new heart and a new set of medical issues to deal with.
Bob P...can you chime in here please, as you have been through a transplant you may well have some information to share here...And you too Chuck!
Thanks Lisa
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: response for Elizabeth]
Author: Chuck M (---.proxy.aol.com)
Date: 10-17-02 15:02
Dr. Shannon at UCLA knows a lot about HCM and Heart Transplants. He takes care of my nephew & niece that have HCM and ICD's. I received a Heart at UCLA in Dec. 1995. Will be happy to answer any questions.
Author: Elizabeth (---.proxy.aol.com)
Date: 10-15-02 15:31
Hi Lisa and everyone I was woundering if you can tell me if the transplant center I am taking Michael to is a center that know's alot about HMCA. I kniw that the Children's Hospital in Los Angele's does in fact have just a Cardiomyopathy clinic I don't think the one in Stanford does have a cardiomopathy clinic .Does Stanford even specialize in Cardiomopathy how can I fine out when I call and ask I get the run around all the time I really hate calling there when no one kniw's anything or they wont tell you.
Is there any body with teenage kid's out there with HMCA that would be willing to e-mail Michael?
Lisa can you please get in touch with me I have a couple of question's I would like to go over with you privately
thankyou once again for your time
Elizabeth
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: heart transplant]
Author: Sarah B--Board Moderator (---.client.attbi.com)
Date: 10-15-02 15:56
Dear Elizabeth,
Please see Adam's post. He is 22, but volunteered to talk to kids/teens etc who wanted to discuss HCM. His dad and uncle both had transplants.
As for the doctor stuff, that is a Lisa question. Oh, Lisa??
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[response for Elizabeth]
Author: Adam (---.sfsu.edu)
Date: 10-15-02 19:56
Elizabeth,
I saw your post and thought I would write to you. I am 22 years old and have HCM. My father and uncle have had heart transplants (my dad was transplanted 12 years ago and my uncle ten years ago). I would be happy to talk to you. Feel free to email me anytime. I would be happy to talk to Michael as well (is Michael your son, just curious). I have some pretty good knowledge about being young with cardiomyopathy and dealing with family members who have it as well. Also, my Uncle Bob is pretty much an expert on this disease and if you want, you should post a message to him on here as well. He has helped me a lot over the years in ealing with this disease, among other things. But just to reiterate my point, I would be glad to speak to you or your son and offer any and all insight I may have that would be of help to you and your family. I wish you all the best in your journey to cope with this disease. Stay strong and feel free to write.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: response for Elizabeth]
Author: Lisa Salberg (208.47.172.---)
Date: 10-16-02 10:39
Elizabeth -
I know you took your son to see Dr. Shannon in LA - he is the best one to ask for referal infromation for regarding transplant facilities in CA for your needs. I will say that transplant centers do not need to "specialize" in HCM as the end result is that the patient will end up with a new heart and a new set of medical issues to deal with.
Bob P ...can you chime in here please, as you have been through a transplant you may well have some information to share here...And you too Chuck!
Thanks Lisa
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: response for Elizabeth]
Author: Lisa Salberg (208.47.172.---)
Date: 10-16-02 10:39
Elizabeth -
I know you took your son to see Dr. Shannon in LA - he is the best one to ask for referal infromation for regarding transplant facilities in CA for your needs. I will say that transplant centers do not need to "specialize" in HCM as the end result is that the patient will end up with a new heart and a new set of medical issues to deal with.
Bob P...can you chime in here please, as you have been through a transplant you may well have some information to share here...And you too Chuck!
Thanks Lisa
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: response for Elizabeth]
Author: Chuck M (---.proxy.aol.com)
Date: 10-17-02 15:02
Dr. Shannon at UCLA knows a lot about HCM and Heart Transplants. He takes care of my nephew & niece that have HCM and ICD's. I received a Heart at UCLA in Dec. 1995. Will be happy to answer any questions.