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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.
Long time HCMA member Laura, has lost her sister Elaine yesterday. Elaine was the second sibiling Laura has lost to HCM.
I am on the phone now with Laura and I know she would appreciate your prayers and thoughts.
God Bless Elaine.
Peace to all,
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 am so sorry to hear of your loss! I will be praying for you and all your family. Please share Elaine's story with us when you feel that it will help you.
I want..in fact I need to share something with you all. Today I spoke to Elaines husband. As you can imagine he is very upset and dealing with tremendous pain with the loss of his 44 yr old wife.
While all calls dealing with the death of a loved one are very difficult, this one was even more so. After listening to Michael talk about what his wife has been through in the past 5 or so years it simply broke my heart. She received no clear information on her condition, her meds were all over the place and she was in fear of communicating with her health care providers much of the time. Doctors changed practices and never notified that they were no longer 'her doctor'.
Elaine makes it clear that "WE" - the HCMA - the patients - the doctors - the hospitals - the insurance companies...WE need to do MORE - we need to do it BETTER and we need to remember all of the "Elaines" of the world.
Elaine may be gone - but the lesson she has left behind will do much to help change the face of health care - HCM care - HCM ADVOCACY.
PLEASE DO NOT TAKE NO FOR AN ANSWER - if you are not feeling well - FIGHT for answers - PLEASE make sure you really understand your options and if in doubt - please reach out for help, we may not have all the answers - but we sure can lead you to those who know best.
May God bless Elaine, her husband, her sisters and her parents as they come to terms with all that has happened. I will make this promise - I will never forget what Elaine has taught us and I will work to do my best to STOP anyone from walking down the same road in the future.
Sincerely,
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)
You know as I read this post I could not help but think how many of us lived a version of what Elaine faced daily. If not for Lisa and this wonderfull, supportive, informative place she created for each of us , our families could be dealing with what Elaine's family is facing now. Perhaps as Lisa says it is truly time for some of us to be even more proactive as in at least trying to inform our extended families of what could also be happening to them. I know that I have tons of family that most I will only see at the next funeral. A large multicultural family that has drifted it's separate ways as the matriarcal and patriarcal members have since passed. Through the tagedy of Elaines death we need to bring about a positive inspiration to try and help others not go through this. We need to all keep trying harder. As Elaines family mourns her loss we too mourn the loss of another HCM family member. My Prayers are with each and all. Thank you Lisa for all you do. 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
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