[Primary Physicians]

Author: Janice (---.rasserver.net)

Date: 12-04-02 08:32

Now that I am a member of HCMC I feel that I can write a note about something that has been on my mind for a long, long time. I belong to an HMO so it is not always easy to pick the doctor of your choice. As far as my cardiologist goes, he is great. He is not an expert on HCM and has admitted this to me. He has referred me to the Mayo Clinic where I did see an expert. They told me that my

medication I am taking is fine and also comfirmed that I should be on disability,

which I am. Now, the problem I am running across are all the other primary physicans you have to encounter for other non heart related issues. They do not

understand HCM but believe they are experts. If I have a cold and my cough gets

too excess they say, "Well, when is your next appointment with your cardiologist"

and leave it at that. Then my cardiologist says, "It is not my department to be

treating you for a cold". These primary physicians also do not understand my

dizzy spells, fainting spells, and my severe fatigue. One doctor put in my medical

records that I have beginning dementia. I need to go to these other doctors for my blood work and other tests, but sometimes I feel enough is enough and I just

let it go, for which I get into trouble with my cardiologist.

Anyone else have a similar problem????

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

[Re: Primary Physicians]

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

Date: 12-04-02 08:43

Sadly, this is all too common a situation.

I would ask your cardiologist to recommend a Primary that he/she knows and likes. This way you have someone good, and someone who will work with the cardiologist to make sure they don't do anything that would interfere with your HCM treatment.

You should have the right to change primarys whenever you want, so keep looking if you have to.

Good luck,

S

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

[Re: Primary Physicians]

Author: Linda, Bd of Directors (---.wmnsmd.adelphia.net)

Date: 12-04-02 09:08

Janice, have you considered asking Lisa to send from the HCMA office, an educational packet to each of the doctors you must see? I approached my son's pediatrician from the angle that "This is the info I have, and I wanted you to know what I know and where I am coming from" He was appreciative, didn't seem to learn a whole lot, but the communication was open without intimidation. It might help. Linda

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

[Re: Primary Physicians]

Author: Erica (---.biz.dsl.gtei.net)

Date: 12-04-02 09:20

Hi Linda! What is in the packet? I know for a fact that my father's cardiologist would be offended if he received this yet I know he doesn't have all the facts on HCM. For example, he doesn't even know the risk factors for SCD! Do you think I should sent a packet anyway? Thanks!

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

[Re: Primary Physicians]

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

Date: 12-04-02 09:45

Dear E

The packet has a poster that explains HCM in doctorese and shows internal views of HCM hearts as well as a flow chart on treatment options, the newsletter, and a few other things I think. Info on the HCMA and what we do.

You can usually hand the packet over and say ask them for their opinion of the materials (as in, could you look this over and let me know what you think about their materials --are they useful? etc.)

Sarah

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

[Re: Primary Physicians]

Author: Erica (---.biz.dsl.gtei.net)

Date: 12-04-02 10:05

Thanks! Will send an email to the HCMA requesting one!

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

[Re: Primary Physicians]

Author: Linda, Bd of Directors (---.wmnsmd.adelphia.net)

Date: 12-04-02 13:32

Erica, I asked my doc to read it so he would know how much and what I knew, and if he had any other info, please share it with me. I asked him to share his journal articles with me as I was not a subscriber. It kind of put him in control to a point and I wasn't trying to teach him. A team effort is always best, I hoped we would be able to learn from each other. It's a great system with our current cardiologist and family doctor. The pediatrician was agreeable and seemed happy with the idea, but he never seemed to gain any knowledge, so we left him. Hope it helps. Linda

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

[Re: Primary Physicians]

Author: Roxann (---.client.attbi.com)

Date: 12-06-02 20:35

The packet from the HCMA office noted above--I would like to see what that has to offer--Thanks!

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

[Re: Primary Physicians]

Author: Sarah B. -Board Moderator (---.dsl.chi.megapath.net)

Date: 12-08-02 11:02

Dear Roxann.

Please click onthe membership link at the top of this page to join the HCMA and get all of our information.

Take care,

S