Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 Hello Members of the Zaplist, It has been years since I have last posted. I am happy to report that my husband has adjusted well to his defibrillator and has only had one discharge in 4 yrs. I want to thank all of you long standing members who helped me during the early years of living with a defib. For those of you who have been around for the last 4 yrs or more, you may remember me, I am the one working on her Ph.D. I am doing my research about people who have survived sudden cardiac death. I have come all the way to the end of my doctoral education and am at the last step, finishing my dissertation. I will need the help of this community one more time. I would greatly appreciate it if some of you would graciously be willing to participate in my interviewing process. I need to speak to those of you who have had cardiac arrest and were externally defibrillated in the last 6 months to 2 years, and have not had any defib discharges in the last 3 months, and consider yourselves to be in good emotional and overall physical health. If you would like to share your survival stories with me and help me understand more about the aftermath of surviving cardiac arrest, I would be very happy to speak with you too. If you are interested in speaking with me, please email me, and I will go over the details with you. Please do not post your interest to the group, as I would like to make sure that your confidentiality is kept and I will not share your responses or the fact that you have participated with anyone else in the group. I thank you in advance for all the emotional support that has been provided by this group. Please email me directly at mashbevcasa@... With great appreciation, Eberhardt Left Ventricle Non Compaction @groups .com Date: Sunday, July 20, 2008, 8:45 AM Hello- I was diagnosed with Left Ventricle Non Compaction in January. I am 31 yrs old. My EF is getting slightly better now that I am on meds- Ace inhib, beta blocker, HCTZ, etc. We have gone from talking transplant all the way to just treating with meds and watching. There were many studies that showed one of reasons for the high mortality of this condition could be linked to sudden cardiac death due to Vfib so my Dr's decided I needed an ICD. This is fine with me because it does give me peace of mind that I won't just keel over. It's seems to be that same dilema probably alot of us have- "not crazy about having this thing in my chest but it is the lesser of the evils" mentality. I only have one lead at this time but they can add up to 3 momore if my EF decreases and I need to be paced. Anyhow- I am trying to locate more people with this condition and am in the process of setting up a website with info for patients and families with info about LVNC and to create a community so the LVNC'ers can contact each other. So far I have met one woman in Canada, one in Massachusetts, and one man in London with this condition. I am in Illinois. We are all being treated very differently and have enjoyed "comparing notes" so to say. If anyone has been diagnosed with this condition or has any experience wit this type of cardiomyopathy, I would love to hear from you. Thanks for reading! And thanks to the moderators and all who post- this is a great resource! Candi Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (6) 1d. Re: EF Posted by: "MARTHA or BILL MAHAN" billandmarthamahan@... Tue Jul 22, 2008 9:16 am (PDT) ----- Original Message ---- From: > got a phone call from the VA hospital said to call my EP asap , why does the VA want you to call your EP a sap? Seriously, hope all goes well. Hopefully your VA hospital is one of the better ones. It seems to me that the services and treatment vary greatly. The promise of "lifetime medical care" for retirees that was made when I went into the Air Force in 1961 ain't what it was made to seem. From California where it is always better to get a call from the VA hospital than from the VA cemetery. Bill Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (6) Recent Activity 2 New Members Visit Your Group Health Heartburn or Worse What symptoms are most serious? Meditation and Lovingkindness A Group to share and learn. New web site? Drive traffic now. Get your business on search. Need to Reply? Click one of the "Reply" links to respond to a specific message in the Daily Digest. 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