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check out the FAQ by clicking the
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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.
Tonight I will fill you in on what it really means
Have a great day everyone!
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)
Follow your heart, huh? And all this time they’ve been telling me to follow my nose.
I guess it’s a good thing though, because when I was following my nose people started to think I was cross eyed. I’ll bet now that I’m supposed to be following my heart people will start telling me to keep my chin up. You just can’t win.
I remember when I was still working I was told to keep my eye on the ball, my ear to the ground, and my nose to the grindstone – but I found it impossible to work like that.
I guess I’ll sign off now with just this word of advice – When you follow your heart, remember to keep your best foot forward.
By the way, remember that old song about myectomies - “Part of my Heart?” (How I loved that melody.) In those days I had a song in my heart – now it’s heartburn.
Today - I took the first step in changing my life. After 17 years as an HR manager for a wonderful company - I spoke to the owners about only being a consultant thereby allowing me more time to work on the HCMA and more time to take care of my family and myself.
I have followed my heart and it leads me to all of you. I look forward to building the HCMA, getting you all involved in the process and helping more families with HCM.
Look out world - you aint seen nothin yet!
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 think your heart strings have helped you steer in the right direction. What great news for all of us too. More of you and your steadfast dedication can only help you, your family , your HCM family and the big old world out there. You are well deserving of following your heart and I hope it brings you continued peace, joy , happiness and great satisfaction.
We are all so lucky to have you!!! Thank you.
Pam
Dx @ 47 with HOCM & HF:11/00
Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
Lead failure,replaced 12/06.
SF lead recall:07,extracted leads and new device 2012 [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
Genetic mutation 4/09, mother(d), brother, son, gene+
Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin
On behalf of all the people in Phoenix AZ with HCM and future Phoenix HCMers, I thank you with all of my heart.
We need all the help we can get over here.
If it was not for your help Lisa, I would have never known I could call Cleveland. My cardiologist never told me to do so.
Thank you Lisa.
I sincerely appreciate all that you do.
With great appreciation and respect.
Eve
49 yrs. old
Diagnosed at 31.
Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
My brother passed away suddenly at 34 yrs old from HCM.
2 teenage children, ages 17 and 15.
I thought about your message today and I acted upon it too. Not anywhere to the aspect you did but I think it made a small difference.
Today I was standing in line at Walgreens to get another round of meds $15 bucks for six pills! Well, there was a couple ahead of me who had no insurance who had an expensive prescription they were searching everywhere for the money but just didn't have enough to get it. I think it was like a dollar or so. It made me think if it were my heart meds and I couldn't get it the devastating effects it would have on me. So, I said don't worry I'll cover the rest. The look on their faces were in complete shock. They said "that they couldn't believe someone would help them out esp, just a kid"
I know it wasn't much but I think it was the right thing to do.
What a big move--sometimes it is scary when you get to that "moment of truth" even though you know it is what you want to do, that moment when you actually act on it and make it fact. I wish you the very best.
If you can increase the effect of the HCMA and the number of people you reach, more power to you. Obviously, every one of us feels you have greatly affected our lives for the good and we are so very appreciative.
Me, I'm set to see Dr. Ommen in Rochester on March 31 and am so glad that I can have this level of evaluation. I didn't even know these clinics existed before literally "stumbling" upon the HCMA while doing a Google search for more info after being told I should get an ICD. A post at another site led me to try a Google search based on "hypertrophic cardiomyopathy" and "support group" thinking there was no chance in the world it would yield anything--instead I found you and the forum. My fortunate day.
Good luck, I hope it works out well to continue your HR work consulting as much as you wish to,
Lisa I.
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