Results from Doctor Visit

[Janet McClure]

As I said in my earlier message, my son was diagnosed last Friday. I went today to a second doctor. The one we had been going to the last few years. He had quit taking our insurance and that was why we changed. He came up with a little smaller measurement but still diagnosed him. The lady who did the echo said that James had a septum paritel band (or something like that, I can't remember what she called it) that you should not measure. She said when you measure that with the septum it is thicker. Has anyone ever heard of that? But she said you should not measure that. But anyway it still came out to 16.

They increased his Toprol to 25 mg and also are going to do a stress test and holter next week. The doctor was so great talking to James about it and how important it was to take his medicine and let me know when something is going on. James asked the doctor if he could cure him. The doctor promised him he would do everything to help bhim but did tell him there was no cure but there could be.

So I feel good after today, although I am confused as to two different doctors measuring differently. Any comments about that would be appreciated. Thanks for everyones comments and words of encouragement.

Janet

[shirleymahoney]

Janet

It really isn't usual for the 2 different tech's to get 2 different readings... I could have 2 from 2 different center on the same day and the measurements would be different, this is why i think it is very important to see an HCM specialist that sees this disease on a daily bases, i hope this helps and good luck

Shirley

[Burton Borrok]

Dear Janet,
A few interesting facts that you might not run across when you go investigating this disease - and try to figure out which doctor is giving you the straight info.

First, it is estimated that only one in five hundred on average have this disease. Second, it is estimated that about ninety percent of those with the genes / the disease – are not aware that they have it. Consequently, we represent an extremely small segment of the practice of cardiology. Almost all of these doctors spend their study hours on the conditions they see and treat every day, so by and large, they have little information of HCM, and not infrequently what they do know is out of date – or just plain wrong.

We who deal with HCM on a personal bases (including all family members) have to research its treatment and care for ourselves, and learn as much as possible about it. But the picture is really not all that black. A few cardiologists are right up to the mark with HCM (and are prized), and there is also three major centers in the US that specialize in HCM and its care. If and when you need help, Lisa Salberg, our Founder and President knows most of these ‘special’ cardiologists across the country – and in a number of other countries too. A conversation with her could steer you in exactly the right direction. That is why you will see so many people advising new members to call her for advice. She is also a fund of HCM information, and is happy to share it with us.

With this background you can see why it is important to learn all you can about the disease and its care; find a ‘special’ cardiologist and team to treat and do the proper testing of the patient; and to seek care from the specialized centers when or if that becomes necessary.

Finally, let me say that this is an excellent place to get started. There are lots and lots of straight information here, plus the board members will be happy to share their experiences with you, and provide what help they can. You, your son, and your entire family are welcome to join us in this life boat of ours, and we are happy to extend a helping hand when and if necessary. Please feel free to take full advantage of these opportunities – we hope that you do.
Burt

[Reenie]

Shirley is right, it's not unusual to have a slightly different reading from one technician to another. You're on the right track trying to learn what you're up against. Keep reading, keep learning. We're here for you.

Reenie

[Janet McClure]

Thanks

Thanks Burton for your information! It is SO WONDERFUL to have people I can talk to that understands what we are going thru and have knowledge and information. Most people ask me what James' disease is called. When I tell them, they look at me totally lost.

I thank God for this forum and organization! May God Bless each one of you!

[Lisa Salberg]

Janet - give me a call on Tuesday and we can go over this a little more.
It is early and I need to get a train so I do not have time to explain it all in a post.

Lisa