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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.
We are looking at a new feature to this message board - a Chat option. As this is YOUR organization, we thought we would ask you if you would find this a valuable option. So take a quick poll... and it will help guide us.
Thanks,
Lisa
14
Yes, I would and I would use it.
92.86%
13
Yes, I would but dont think I would use it.
7.14%
1
No, I would not use it.
0.00%
0
No, I think open chat is a bad idea on this board.
0.00%
0
The poll is expired.
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)
I think it would be good in addition to what Mark said above me but to also just get to know each other a bit better. We all talk and answer questions regarded to the condition we have but sometimes it would be nice to just talk to someone in the same boat. Maybe about HCM maybe about the weather or whatever else helps pass the time.
Diagnosed HCM October 2011(obstructed)
ICD Implanted 10/14/2011
First trip to Cleveland Clinic 11/16/2011
Septal Myectomey 12/14/2011
A better life started 12/15/2011
I think this is a great idea. I really like what Tom had to say. There have been many times I wish i had someone to talk to that knows how I feel and not think I'm crazy.
Chat would be a good idea, many of us go through hard times and it would be nice to have support. Perhaps bring on our doctors for Q%A and just all about a shoulder to cry on sometimes. Yesd LISA, please. And my gradient hit 50, so now i am scared.
It is unlikely that your gradient "hit 50" its likely been there for a while - it is a transient number and some days it may be lower.. some days higher. Taking your medication, and the proper medications, drinking water and monitoring your physical activity are keys to manage obstruction... rushing to invasive treatments myectomy or ASA.. is not wise.. take your time, try meds, and go slow... options chosen in panic mode... are usually mistakes.
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)
I'm in on a 'chat' feature to the forum. Would it be on a set time for gaurenteed 'live chat'? There have been times lately where I could of used a shoulder to comisserate with, a person totally familiar with the frustrations I'm going through.This 'waiting list'phase is another mountain that seems almost insurmountable but I dont't have much options.Sorry for sounding miserable, but I am with the quality of my life,and the new challenges with my health that have appeared. Ahh I'll get over it after a little more 'whine'. GO PATS!!!
John
had HCM since birth
'enlarged heart' identified in 96'
HOCM dx in 7/08
Myectomy 8/09
extended Myectomy 5/10
'End stage' HCM dx 8/10
CRT-D implanted 9/10
evaluated for Transplant 11/10
Listed for transplant 6/11
Jim.. are you trying to use the HCMA as a dating site?? LOL.. just teasing!
BTW.. somehow this thread got double posted... and there are votes on both so i am gonna let it say as is... for a month.. then merge the thread.
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)
Don - Scroll down in the main Forum page to the very last red bar - It all depends if someone is there!
Marc
Diagnosed @ 48
Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
AICD - Valentines Day '08, Spark Plug replaced 11/14
After much research, I had a Myectomy @ Mayo for my 50th Birthday '08 Quietly going insane . . .
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