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If this is your first visit, be sure to
check out the FAQ by clicking the
link above. You may have to register
before you can post: click the register link above to proceed. To start viewing messages,
select the forum that you want to visit from the selection below.
Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. As a good practice screen names should not be "full legal names" as we can not full assure your privacy from search engines if your FULL name appears on the messageboard
All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination.
I need to get a Medic Alert bracelet for Dylan, but I'm kind of stuck as far as what to put on it. Do any of you have them for yourself or your children, and if so, what does it say on it?
I guess I'm wondering what's the easiest words to use to explain his defect and what to look for first with him...
"Hypertrophic cardiomyopathy with obstruction"
"prior stroke"
"medications:XXXXX"
No nitro
clear that with your doctor but that should be fine.
Lisa
Knowledge is power ... Stay informed!
YOU can make a difference - all you have to do is try!
Dx age 12 current age 46 and counting!
lost: 5 family members to HCM (SCD, Stroke, CHF)
Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
Therapy - ICD (implanted 97, 01, 04 and 11, medication
Currently not obstructed
Complications - unnecessary pacemaker and stroke (unrelated to each other)
Be sure you get an actual Medic Alert bracelet from medicalert.org. They keep your medical records as well as family and doctor contact info on file, plus anything that is "good to know" but not urgent enough for the bracelet. Medics will get this info when they call.
They can also help you figure out what to put on it. I spent half an hour on the phone with a nurse one day for mine!!! They are very nice.
Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
So if you are capable of thought then you are capable of great things
Good luck and stay well.
Glen
Nitro is contraindicated in HCM (refer to the PDR)
It is a vasodilator and in most patients with HCM it can make symptoms worse and even cause death in some.
THERE are a very very few people with very "small vessels" that may benefit from minimal therapy from such meds. but the overwhelming # will have a poor reaction to it.
Lisa
Knowledge is power ... Stay informed!
YOU can make a difference - all you have to do is try!
Dx age 12 current age 46 and counting!
lost: 5 family members to HCM (SCD, Stroke, CHF)
Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
Therapy - ICD (implanted 97, 01, 04 and 11, medication
Currently not obstructed
Complications - unnecessary pacemaker and stroke (unrelated to each other)
Jewelers carry charms with the medical alert symbol on the front. They engrave the information on the back. They come in silver and gold. Some have a red background. If you're out of room on your bracelet, consider adding a charm to it for additional information.
My arm would stretch under the weight of all the extra charms I would need!!! OHMIGOSH!! SHRINKYDINKS!! I can write the info on a Shrinky Dink, shrink it, and use that as an extra charm! I'm so excited. I love Shrinky Dinks.
(I hear you laughing out there! But you would be amazed at what people are doing with shrink plastic these days.)
My arm would stretch under the weight of all the extra charms I would need!!! OHMIGOSH!! SHRINKYDINKS!! I can write the info on a Shrinky Dink, shrink it, and use that as an extra charm! I'm so excited. I love Shrinky Dinks.
(I hear you laughing out there! But you would be amazed at what people are doing with shrink plastic these days.)
Thanks, everyone.
S
Sarah,
You really made my day!!! You're right, Shrinkydinks rock!! I love those things. You know, you might be onto something here...... Hmmm.
R
Reenie
****************
Husband has HCM.
3 kids - ages 23, 21, & 19. All presently clear of HCM.
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