[Need Info.....]

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

Date: 09-29-02 21:29

Hi All

First I want to thank Lisa for all she does..and to everyone

here that posts.....your information and insight is priceless!

I posted here a few weeks ago and just received my packet

from Lisa...thank you....I had not been feeling well for the

last month after starting an exercise program...each day

I felt progressively worse and would be sick to my stomach,

ready to faint and just lousy....at almost the same time after

having to retrieve some medical records I came across one

from a doctor I had seen 10 years ago and I had had an echo

done as I was diagnosed with mitral valve and having some

problems ...anyhow...long story short...the test results state

"early left ventricular hypertropy and "cannot rule out abberant

coronary artery". NOONE ever CALLED me or told me these

results!.....anyhow I saw my PCP who looked at the report and

said "I think the guidelines are low but you can have it checked"

I have an appt for a stress test and echo at the Faulkner Hospital

in Boston. Since exercise makes me sick should the echo be

done first?.....Should I have a regular stress test or thalium stress

test?.....I would like to get the number to Dr. Maron in Boston and

make an appointment there if anyone has it....even though I am just

south of Boston I am not sure where Tufts is....is it at New England

Medical Center?.....My PCP did do some bloodwork last week and

I was feeling so lousy one day after shopping and having to lift some

heavy bags at the mall I was sooooo sick and then I got so exhausted

I thought I would fall asleep at the wheel!....I could not keep my eyes

open. I can't get over when this happens. It has happened alot lately

and I am NOT the type of person who tires easily....or at least I never

use to be....sorry for the lenghty post....if anyone has any advice

on the echo etc. and where Tufts and Dr. Maron is and if I should go

through with the appt. I have for Oct. 7 or make one with Dr. Maron.

To tell you the truth I am scared especially since most Dr.'s don't

seem to know much or put much stock in HCM.....

thanks for your comments and thanks for all the posts to help

me understand. What a great group of people you all are.

God Bless you all

Arlene

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[Re: Need Info.....]

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

Date: 09-29-02 21:39

Sorry...not to babble on and on but I have been having ALOT

of palpitations and my heart seems to race at times and each

time I tell the dr. they say its "normal" even though I say

it lasts longer than it ever has....I also have for years experienced

"anxiety attacks"....or at least thats what the dr.'s would say...

some may have been anxiety but I truly believe others were not..

my Mom had a severe MI at 52 years old...I am 44....my Aunt

died suddenly 3 years ago....she had shortness of breath after

going to a baseball game....my cousin took her right to a Boston

Hospital 2 minutes away and she was dead instantly.....they

did not do an autopsy only said it was a heart attack...she was

my Mom's sister and their father and his side of the family had

a long history of heart related and sudden deaths all before 50

years of age....I know that the echo is the tell tale of the tests

but any advice with regards to the stress test and holter?

Thanks again

Arlene

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[Re: Need Info.....]

Author: mary sharp (---.net299.fl.sprint-hsd.net)

Date: 09-29-02 22:00

Your story sounds all to familiar. In the words of Lisa you need to get to a specialitst! At 22 I have my bad days where just standing around work is too much for me and I end up getting hauled to the ER because my chest pain gets so bad. My drs. also confirmed that my troponin levels do infact elevate with each episode. They thought at first that they were chronically high but that is no longer the case. I am really relying on this trip to finally give me some peace of mind. I desperatly need to know if I can keep going on the road of my chosen career or do I need to step back and maybe consider changes. I am finally getting to the point where I can do something with my education and the thought of having to give it up before I even start is a bit depressing. But I am sure I will cope no matter what the news is!

I will definatly get that information to you tomorrow! If you go on a google search engine and type in new england medical center it will come up with there web sight and just go to the cardiovascular area that should get you the number or under dr. search do Udelson that should get it as well!

Mary

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[Re: Need Info.....]

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

Date: 09-29-02 22:50

Dear Arlene,

Tufts is the New England Medical Center in Boston. Dr. Martin Maron is the guy to see there. He is Barry Maron's son (Dr. B. Maron is the medical advisor to the HCMA and he is at the Minneapolis Heart Institute. The main number to the cardiology dept at Tufts is 617-636-2273.

Well, I'm kind of torn. It sound like to you need to be seen RIGHT AWAY! WIth your family history, you may be a candidate for an implantable cardioverter-defibrillator. However, since you are close to Boston, it makes sense to just get all the tests done with the specialist right off the bat.

I would call Tufts first thing Monday and tell them your situation and see if they can fit you in before the 7th, at least to get looked at. Make an apt for first available. If they can't, then keep the apt on the 7th and have them send the test results to Tufts.

If you think that the stress test will make you too sick to lay down for an echo, certainly tell them to do it first. I've always had them done first, so I suspect it is typical to do it in that order anyway. A regular stress test is probably fine. If the doctor really wants a thalium test, they'll tell you.

Take it easy and don't be afraid to go to the ER if you need to. Better safe than sorry.

hang in there,

Sarah

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[Re: Need Info.....]

Author: Bryan Lombardo (---.bos.east.verizon.net)

Date: 09-30-02 02:06

Tufts is almost right in the heart of China town.

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[Re: Need Info.....]

Author: Glen (---.com)

Date: 09-30-02 09:14

Arlene, They may want to do the echo during the test, so they may do it before you start and also during the stress. I maybe incorrect here and I am sure I'll get corrected, but I believe Thalium is a drug induced stress test.

On my last check up in March with my HCM specialist he wanted a stress test because I hadn't had one for quite some time and he wanted to test to make sure my BP was not dropping and my Gradient not going up during exercise.

He wanted the stress test on a tread mill, but I have arthritis in my hip and requested a bike stress test because I ride bikes all the time.

For some reason they didn't have a bike so he said they would do a drug induced test. They did an echo before I started and also while they were giving the drug which they give interveneously at the same time.

I had a bad reaction to the drug 3/4 of the way thru the test and my BP and heart rate went thru the roof.

They immediately stopped and they told me it would be OK in a minute once the drug ran thru and it did return to normal within minutes.

When I saw the Doc he said some people have that reaction once in awhile but they got the info they wanted.

My BP certainly did not go down and my Gradiant did not go up under that stress so that was good.

Apparently this rarely happens and when it did, it concerned me more than it did them so I assume I was in no great danger when it happened.

I am not trying to scare you, I'm just pointing out the differences in people and how each person reacts differently.

You get sick during exercise, I am fine.

I get sick during drug induced stress and you would probably be just fine.

Good luck with your tests.

Glen

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[Re: Need Info.....]

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

Date: 09-30-02 12:05

Thank you, thank you. thank you to all! I did call this morning

and after a few calls back and forth they are "squeezing" me

in for tomorrow. I will have an echo first and an ekg and then

see Dr. Marty Maron in the afternoon. I am very relieved to

say the least. I was very scared to think I would have a stress

test and echo with people that are not familiar with the diagnosis

and don't put alot of stock in it. I am so grateful to all of you

for your fast response and suggestions and caring.

I will let you know how I make out.

Thanks again and God Bless you all!

Arlene

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[Re: Need Info.....]

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

Date: 09-30-02 12:36

Dear Arlene,

Fantastic!!!!!!!!!!! With any luck, you won't need a stress test after all, wouldn't that be cool?

We all await your report with baited breath!

Tell Dr. Maron that everyone at the board gives him a big shout-out "Hello" and "thanks" for taking care of you.

Sarah

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[Re: Need Info.....]

Author: Linda (---.wmnsmd.adelphia.net)

Date: 09-30-02 20:15

Dear Arlene, I read your email to me before I read the message board today, so my ans to your email is already outdated. I am so glad you were able to get an appt quickly. Best wishes tomorrow and tell Dr. Maron, "Linda says Hi." We're all pulling for you, waiting for your next message . Linda Price

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[Re: Need Info.....]

Author: Lisa Salberg (208.47.172.---)

Date: 10-01-02 14:36

Happy to hear you are being seen today and hope all went well!

Let me know!

Lisa

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[Re: Need Info.....]

Author: Lisa Salberg (208.47.172.---)

Date: 10-01-02 14:36

Happy to hear you are being seen today and hope all went well!

Let me know!

Lisa

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[Re: Need Info.....]

Author: Lisa Salberg (208.47.172.---)

Date: 10-01-02 14:36

Happy to hear you are being seen today and hope all went well!

Let me know!

Lisa