If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

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HCM Specialist

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  • HCM Specialist

    [HCM Specialist]

    Author: Leon (---.lncstr01.pa.comcast.net)

    Date: 11-14-02 13:35

    Hi Lisa (and everyone else).

    Today I met with the Dr. at Hershey Medical Center you recommended me to see. It was a wonderful experience. He took almost 45 minutes with me and let me ask every question I have ever had. Then he asked me lost of questions. He was a very kind, caring man. He also spoke highly of you. He said I should read the book you wrote. How do I do that?

    As far as the ICD is concerned, he agrees with my primary cardiologist. With my septal wall so thick, with my history (rhythm issues and near syncope) that I really should have an ICD. My meds are on target and I am doing all I should be doing for my condition. That was very reassuring! Thanks so much for helping me to make that connection. Please send me info on the book.

    Peace,

    Leon

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: HCM Specialist]

    Author: Sarah B. -Board Moderator (---.client.attbi.com)

    Date: 11-14-02 16:43

    Dear Leon,

    If you go to the Membership Info link at the top of this page, you can find the address and member info. You can mail a check for 25 bucks to the HCMA for the book or you can send $50 and become a member (which gets you the newsletter with the latest research, etc) and the book (and I think the membership is for 2 years with the member/book deal).

    I'm glad you are getting the right care. Don't wait on the ICD!

    take care,

    S

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: HCM Specialist]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 11-14-02 18:03

    Leon, I am glad you had a good visit and I know you made the right call by following up with Dr. Popjes, he is one of the 'good guys!"

    You can order the book on its own or join up for membership and get it for free with your 1st years membership.

    1st yr. membership is $50.00 renewal is $25.00 US (add $15.00 to both for out of the USA... extra mailing / phone costs)

    Best wishes... when are you doing the ICD??

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: HCM Specialist]

    Author: Leon (---.lncstr01.pa.comcast.net)

    Date: 11-15-02 02:32

    I get the ICD on January 14.

    Leon

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: HCM Specialist]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 11-15-02 04:10

    I am glad to here it...be well!

    lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: HCM Specialist]

    Author: Chris Brown (209.77.217.---)

    Date: 11-15-02 07:56

    Hi Sara & Leon,

    I sent Lisa a email last week I know she is really busy right now, this posting reminded me that I still am looking for answers to better understand my condition. I get in front of the cardiologist and I forget to ask the right questions.I have an appointment Nov 19 & I want to go into this appointment with my questions written out.

    Here is my story again to refresh your memory, Sorry if this is a repeat!

    I was diagnosed w/ IHSS in 1994 and my first pacemaker was put in then. I use to have all the symptoms of dizziness, not being able to walk up stairs. In 1999 I had my second pacer Dual mode put in. This has kept my heart rate from going into 150 bpm. I really don't have bad symptoms anymore, I exercise on a sit down bike 4-5 days a week, I walk up stairs without getting dizzy. This is the good news!. With pacing can your gradient decrease?

    I have developed constant A-Fib( for 3 years)that I can tolerate.

    And to throw in the mix here I had endocarditis 1996, that left some scar tissue on my heart(I think it is by a valve).

    If you asked me what my gradient, septum wall thickness is I couldn't tell you.

    What Questions should I ask at my appointment.What Type of rating/number system should the Dr. be using.?

    He also feels my medication is working for me.

    Coumadin 8mgs daily

    metroprolol 400mg daily

    Digitek .375 mcg

    I know these are high dosages, compared to everyone else on the board. And I seem to be the only one taking Digoxin medication. Could he be using this to primarily treat the A-fib since my HCM isn't as bad?

    Sorry for this long email, hopefully I can get the answers I need at my next appointment.

    SIncerely

    Chris Brown

    P.S.I just received Lisa's book, Thanks! I will start reading it soon.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: HCM Specialist]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 11-15-02 08:14

    Dear Chris,

    You aren't seeing an HCM specialist, are you? Your treatment plan is not top of the line. Please call Lisa next week (Thursday-Friday) and get the name of an HCM specialist --unless your next appt is with someone she recommended.

    There is no official tracking or numbering system. You may be referring to the post about Dr. McKenna's system, but he is in the UK and it's his personal scale --not in use anywhere else.

    I've been seeing a doctor every 6 months for 18 years and I still have to write down all of my questions every time and keep the list in front of me while I talk.

    You want a copy of your latest echo report, a copy of your ecg and an explanation fo what each says.

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [HCM Specialist]

    Author: Chris Brown (209.77.217.---)

    Date: 11-15-02 09:13

    Hi Sara,

    I am not seeing a specialist. Lisa is looking for one in Northern California but have not heard anything. You think with Stanford and University of San Francisco their would be somebody?

    I will call and get copies of the echo and ekg along with explanations. This should help me understand my condition better.

    Thanks for all your help. You are GREAT!

    Chris

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: HCM Specialist]

    Author: Leon Miller (---.cap.east.verizon.net)

    Date: 11-15-02 09:34

    Greetings Chris. I like the idea of writing down questions. While I have not always done that, I have tried to think through the questions I have before going into an appointment. After speaking with Lisa I found which questions are the important questions to be asked. That was very helpful! Also just understanding what this or that term means helps to demystify HCM and that in itself gives me a greater sense of control over my condition. Best of luck. Lisa will steer you right.

    Peace,

    Leon

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: HCM Specialist]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 11-15-02 09:50

    Dear Chris,

    Thanks! Just doin' my job (well, volunteer job).

    HCM is not "popular" --there are trends in medicine just like everywhere else. Someday soon....

    S

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: HCM Specialist]

    Author: Lisa Salberg (167.165.39.---)

    Date: 11-16-02 18:34

    Chris -

    You need to ask the following;

    what is your septal measurement?

    what is your left free wall measurement?

    are you obstructed? if so what is the gradient?

    What is the purpose of you being on Digetek as it is not indicated for HCM?

    (there maybe an underlying reason for it..)

    Where is the scar tissue from the endo. has it adversely affected you mitral valve?

    Lets start with these questions.... and read the book..in fact bring the book with you to the Dr. and write down your questions and the answers directly in the book, use the back coverf inside and leave room to note changes in the future, this way you will keep track of your own health and be able to work WITH you doctor.

    If you need anything before the appointment I do have my cell phone with me the # is 973-727-2450

    Good luck with the Dr.!

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: HCM Specialist]

    Author: Lisa Salberg (167.165.39.---)

    Date: 11-16-02 18:34

    Chris -

    You need to ask the following;

    what is your septal measurement?

    what is your left free wall measurement?

    are you obstructed? if so what is the gradient?

    What is the purpose of you being on Digetek as it is not indicated for HCM?

    (there maybe an underlying reason for it..)

    Where is the scar tissue from the endo. has it adversely affected you mitral valve?

    Lets start with these questions.... and read the book..in fact bring the book with you to the Dr. and write down your questions and the answers directly in the book, use the back coverf inside and leave room to note changes in the future, this way you will keep track of your own health and be able to work WITH you doctor.

    If you need anything before the appointment I do have my cell phone with me the # is 973-727-2450

    Good luck with the Dr.!

    Lisa
    NOTE: This is a post from the previous forum message board.

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