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[how do you guys keep this up!]
Author: mary sharp (---.net307.fl.sprint-hsd.net)
Date: 07-18-02 23:02
I guess I am just in a really depressed mood today. I just get so tired of being tired all the time. The past couple of days have not been the best. I went to my so called specialist in Gainesville and they told me that my heart was absolutly fine that I had no possibilites for any type of cardiac event than some one my age (22). When I asked questions about my elevated enzyme levels when I had chest pain I was told that that was normal for me. So I went to my regular cardiologist and gave him the test that they did and he said that there claims were absured and that yes I did have a heart problem. Now I don't know what to believe. All I know is that I couldn't even Play in the parks ( Magic Kingdom) for more than a couple of hours without getting severe chestpain that radiates down my arm and to the back of my shoulder and having to be wheeled out in a wheelchair and then had to be driven home because of lightheadedness. i don't know how much longer I can keep going like this. I have this really weird thing called a life that I would like to live! I know it won't be the same as before all of this but I just want a good quality of life.
Just out of curiosity what do you guys do when you get bad chest pain. My doctors have not told me anything for relief of the pain. So most of the time I just end up in the Er and usually am admitted. Any help on this would greatly be appreciated. I am really glad I found this message board.
Mary Sharp
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[Re: how do you guys keep this up!]
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 07-19-02 07:58
Hang in there Mary (by the way I'll call you later with the # )
If you feel that you are in danger..go to the ER. You may want to lay down and put your feet up and try to relax. Focus on your breathing not the pain or dizziness, it has worked for me for over 20 years (in which time I have only landed in the ER 6-7 times). how about getting to someone who deals with HCM on a regular basis, that will help clear up any questions.
Best wishes,
Lisa
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[Re: how do you guys keep this up!]
Author: Sarah B-Board Moderator (---.244.67.201.Dial1.Chicago1.Level3.net)
Date: 07-19-02 08:03
Dear Mary
There is still a blind spot in a lot of doctor's minds about young women and heart problems: they just don't believe that it is possible. That is untrue, obviously, however, it is unusual enough for a lot of women to get pooh-poohed.
Please call thec HCMA office at 973-983-7429 to get the name of an HCM specialist who will make sure you get the appropriate treatment. There are medications that can help you achieve a good quality of life, not to mention a couple of surgical procedures, should you need them.
If you have having bad chest pain, you need to call your doctor. Some of us who are medicated and have had this a long time, just learn which pain just comes with the program and which pain requires an ER visit. You do not want to be masking chest pain with pain killers or anti-anxiety drugs b/c chest pain is an early warning system for serious cardiac events.
It is always hardest at the beginnig of this process before you get hooked up with a great doctor and a suitable treatment plan. Hang in there and it will get better.
Sarah
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: how do you guys keep this up!]
Author: Brie Rodighiero (---.dialup.sndg02.pacbell.net)
Date: 07-19-02 14:42
Hey Mary.
I understand your frustration. I'm 24 and was diagnosed with HCM about 10 months ago. But when I first walked into the Doctors office he looked at me and said it was probably just in my head. Well, he was wrong and he is no longer my doctor! I called Lisa and she hooked me up with two different doctors who I am much happier with. (Thanks Lisa!)
It is very important to see a doc who knows what their doing and who you feel safe with.
As far as the chest pains go.....it's something you (or maybe it's just me) have to deal with. Like Sarah said, you kinda figure out which ones are never going away and which ones to be alarmed about.
Are you taking meds yet? There is so many different types of treatment that can help you. Hang tight, things should get better once your with the right doc and treatment plan!
Good luck,
Brie
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: how do you guys keep this up!]
Author: Lisa Salberg (208.47.172.---)
Date: 07-19-02 14:44
Brie - Your welcome!
Lisa
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[Re: how do you guys keep this up!]
Author: mary sharp (---.net156.fl.sprint-hsd.net)
Date: 07-21-02 10:33
Does anyone know if nitroglycerin is good for this condition? Everytime I get taken to the ER by ambulance the first thing that they do is give it to me. And 90% of the time it bottoms my bp out. My bp is normaly 100/60 and with the nitro it gets down to 60/30 and the headaches are absolutly terrible! Any help would greatly be appreciated!
Mary sharp
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: how do you guys keep this up!]
Author: Sarah B-Board Moderator (---.ipt.aol.com)
Date: 07-21-02 12:59
Dear Mary
Regardless of any use of nitro for others, it clearly doesn't help you --I would ask you're doctor if there is any over-riding medical nessity for it--there are probably other meds the EMT can give you; and then go to medicalert.org to get a bracelet that says "no nitro" (so the EMT can't argue with you).
You may have other conditions that should be on there too.
take care
S
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: how do you guys keep this up!]
Author: susan (---.171-189.vldsgacbds.dial.optilinkcomm.net)
Date: 07-21-02 21:32
mary.
my doctors, all of them, told me absolutely no nirto. its not good for us. it just makes the pain worse. i got my medical alert braclet with the no nitro on it. here is another thing you can do, when they ask you if your allergic to anything tell them nitro, it will be in your records also then. i have had a quite a few trips to the ER myself with horrible horrible chest pain. at first they were shooting me up with demoral, not that i minded, just kidding. the last time i was in they tried just putting me on oxygen, you know it actually worked, after about 15 minuets everything eased off and bloodpressure returned to normal. i actually had one ER doctor tell me he wanted to check my ekg and see if there were any infarctions showing up. i told this to my regular doctor, he laughed and said they don't show up on ekgs. lets you know what kind of morons we deal with huh?
the first cardiologist i ever went to see, this was when i was 19 let me think the pain and all other symptoms were all in my head, i got wise and got new doctors, doctors who know what the heck they are talking about. it really helps if the doctors are intrested. anyway i could run on about this all day.
best wishes and take care
susan
Author: mary sharp (---.net307.fl.sprint-hsd.net)
Date: 07-18-02 23:02
I guess I am just in a really depressed mood today. I just get so tired of being tired all the time. The past couple of days have not been the best. I went to my so called specialist in Gainesville and they told me that my heart was absolutly fine that I had no possibilites for any type of cardiac event than some one my age (22). When I asked questions about my elevated enzyme levels when I had chest pain I was told that that was normal for me. So I went to my regular cardiologist and gave him the test that they did and he said that there claims were absured and that yes I did have a heart problem. Now I don't know what to believe. All I know is that I couldn't even Play in the parks ( Magic Kingdom) for more than a couple of hours without getting severe chestpain that radiates down my arm and to the back of my shoulder and having to be wheeled out in a wheelchair and then had to be driven home because of lightheadedness. i don't know how much longer I can keep going like this. I have this really weird thing called a life that I would like to live! I know it won't be the same as before all of this but I just want a good quality of life.
Just out of curiosity what do you guys do when you get bad chest pain. My doctors have not told me anything for relief of the pain. So most of the time I just end up in the Er and usually am admitted. Any help on this would greatly be appreciated. I am really glad I found this message board.
Mary Sharp
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: how do you guys keep this up!]
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 07-19-02 07:58
Hang in there Mary (by the way I'll call you later with the # )
If you feel that you are in danger..go to the ER. You may want to lay down and put your feet up and try to relax. Focus on your breathing not the pain or dizziness, it has worked for me for over 20 years (in which time I have only landed in the ER 6-7 times). how about getting to someone who deals with HCM on a regular basis, that will help clear up any questions.
Best wishes,
Lisa
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: how do you guys keep this up!]
Author: Sarah B-Board Moderator (---.244.67.201.Dial1.Chicago1.Level3.net)
Date: 07-19-02 08:03
Dear Mary
There is still a blind spot in a lot of doctor's minds about young women and heart problems: they just don't believe that it is possible. That is untrue, obviously, however, it is unusual enough for a lot of women to get pooh-poohed.
Please call thec HCMA office at 973-983-7429 to get the name of an HCM specialist who will make sure you get the appropriate treatment. There are medications that can help you achieve a good quality of life, not to mention a couple of surgical procedures, should you need them.
If you have having bad chest pain, you need to call your doctor. Some of us who are medicated and have had this a long time, just learn which pain just comes with the program and which pain requires an ER visit. You do not want to be masking chest pain with pain killers or anti-anxiety drugs b/c chest pain is an early warning system for serious cardiac events.
It is always hardest at the beginnig of this process before you get hooked up with a great doctor and a suitable treatment plan. Hang in there and it will get better.
Sarah
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: how do you guys keep this up!]
Author: Brie Rodighiero (---.dialup.sndg02.pacbell.net)
Date: 07-19-02 14:42
Hey Mary.
I understand your frustration. I'm 24 and was diagnosed with HCM about 10 months ago. But when I first walked into the Doctors office he looked at me and said it was probably just in my head. Well, he was wrong and he is no longer my doctor! I called Lisa and she hooked me up with two different doctors who I am much happier with. (Thanks Lisa!)
It is very important to see a doc who knows what their doing and who you feel safe with.As far as the chest pains go.....it's something you (or maybe it's just me) have to deal with. Like Sarah said, you kinda figure out which ones are never going away and which ones to be alarmed about.
Are you taking meds yet? There is so many different types of treatment that can help you. Hang tight, things should get better once your with the right doc and treatment plan!
Good luck,
Brie
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: how do you guys keep this up!]
Author: Lisa Salberg (208.47.172.---)
Date: 07-19-02 14:44
Brie - Your welcome!
Lisa
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: how do you guys keep this up!]
Author: mary sharp (---.net156.fl.sprint-hsd.net)
Date: 07-21-02 10:33
Does anyone know if nitroglycerin is good for this condition? Everytime I get taken to the ER by ambulance the first thing that they do is give it to me. And 90% of the time it bottoms my bp out. My bp is normaly 100/60 and with the nitro it gets down to 60/30 and the headaches are absolutly terrible! Any help would greatly be appreciated!
Mary sharp
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: how do you guys keep this up!]
Author: Sarah B-Board Moderator (---.ipt.aol.com)
Date: 07-21-02 12:59
Dear Mary
Regardless of any use of nitro for others, it clearly doesn't help you --I would ask you're doctor if there is any over-riding medical nessity for it--there are probably other meds the EMT can give you; and then go to medicalert.org to get a bracelet that says "no nitro" (so the EMT can't argue with you).
You may have other conditions that should be on there too.
take care
S
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: how do you guys keep this up!]
Author: susan (---.171-189.vldsgacbds.dial.optilinkcomm.net)
Date: 07-21-02 21:32
mary.
my doctors, all of them, told me absolutely no nirto. its not good for us. it just makes the pain worse. i got my medical alert braclet with the no nitro on it. here is another thing you can do, when they ask you if your allergic to anything tell them nitro, it will be in your records also then. i have had a quite a few trips to the ER myself with horrible horrible chest pain. at first they were shooting me up with demoral, not that i minded, just kidding. the last time i was in they tried just putting me on oxygen, you know it actually worked, after about 15 minuets everything eased off and bloodpressure returned to normal. i actually had one ER doctor tell me he wanted to check my ekg and see if there were any infarctions showing up. i told this to my regular doctor, he laughed and said they don't show up on ekgs. lets you know what kind of morons we deal with huh?
the first cardiologist i ever went to see, this was when i was 19 let me think the pain and all other symptoms were all in my head, i got wise and got new doctors, doctors who know what the heck they are talking about. it really helps if the doctors are intrested. anyway i could run on about this all day.
best wishes and take care
susan