[Questions about tee & medical treatment]

Author: Mary (---.wi.rr.com)

Date: 08-13-02 15:31

I just got off the phone with my cardiologist and I'm really frustrated. I had a tee done 1 1/2 weeks ago, and just now got a call from him with the results. Basically it's what they had thought, that the thickening of my heart isn't limited to the septum but it globalized. I also have a leaky valve, but he didn't say which one. And then he says we'll just continue on with the treatment I'm getting so far and he'll see me in a year. A YEAR??? Is that normal? I mean, don't you think a cardiologist should have a little more of a relationship with his patient than one a year? Please tell me if I'm just over-reacting, but I've just gotten the news that my surgical options (if it comes to that) are limited, but he only finds it necessary to see me once a year. This after spending all day yesterday in a-fib which medication didn't control, this after being on total disability and barely being able to walk half a block without dizziness and exhaustion. Please give me some idea if this is how cardiologists normally treat HCM. Always before my doctors have at least wanted to see me every couple of months to monitor me. Grrrr. Frustration everywhere! Mary

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

[Re: Questions about tee & medical treatment]

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

Date: 08-13-02 15:44

Dear Mary

I'm assuming that this is not an HCMA recommended HCM specialist. Please call the HCMA office at 973-983-7429 to get the name of someone who will treat your afib and everything else.

No, this is not good medical care and it is not typical at all. There are lots of good doctors out there, it is a matter of finding them and not settling for less.

let us know how it goes.

S

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

[Re: Questions about tee & medical treatment]

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

Date: 08-14-02 08:59

Mary,

I was afraid this is what was going to happen after you mentioned having had the TEE. This is what I have learned about the use of TEE in HCM. As a straight diagnostic tool, I have not seen them as a helpful tool. They are very useful presugury or non surgical procedure (myectomy / ablation) to help map the heart.

The quality of echo machines today are so good that a regular echo should give you all the measurements you need.

RE when to see your doctor....in your case I would strongly recomment a visit to an HCM specialist (sooner than later.). If you are not being controled with your A/F and this doc says come back in 1 year.thats a bit dangerous in my opinion.

Are you on blood thinners??? if not why...if so how is your doc going to manage your anticoagulation thereapy if he only sees you one time per year?

Mary...I think it is time to reevaluate your health care and take action to improve it.

I Know this is hard...but it is time to do something about it...call the office if you need some help.

Best wishes,

Lisa

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

[Re: Questions about tee & medical treatment]

Author: Mary (---.wi.rr.com)

Date: 08-14-02 22:09

Dear Sarah & Lisa,

thank you so much for your concern. I did find an hcm specialist here in MIlwaukee, and I'm going to call him tomorrow. I hope that this will be a major change for the good for me. Mary

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

[Re: Questions about tee & medical treatment]

Author: Connie (---.proxy.aol.com)

Date: 08-14-02 22:18

Oh MY ....this sounds like my vent post earlier........are all Cardiologists that dont specialize in HCM uneducated about HCM. Dont they have to take Brush UP courses every now and then. Mary...I understand you frustration completely as does everyone else here. When I got mad is when I decided I would take my health in my own hands and not take any more patting on the head by uneducated doctors, and get out there and get me the best care I could find. Those head patting doctors arent the ones who have to do the DYING....due to their lack of knowledge about HCM....we are, and that is just not acceptable in my book !!! connie

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

[Re: Questions about tee & medical treatment]

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

Date: 08-15-02 10:52

Venting is good.... not talking is bad....

With talking about our questions and concerns with our treatment we will all get better care in the long run!

Best to all!