Guest guest Posted July 20, 2008 Report Share Posted July 20, 2008 EF stands for Ejection Fraction and is how your hearts pump is measured. Normal is 60-65 heart transplant thinking is 10-20. Mine was at 43 and with 18 mos of taking Coreg improved to normal - 60. Good luck - hope this helps. ~guin Left Ventricle Non Compaction 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2008 Report Share Posted July 20, 2008 thx guin am to also taking coreg for 5 years but still at 43 take 6.25mg of coreg john From: Candi <candi51gmail (DOT) com>Subject: Left Ventricle Non Compaction@groups .comDate: 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 john i'm sorry to learn that they have foudn a problemly with your icd i sure hope its soemthign they can fix without the need for sugery i know its got to be soooo worry some ! but take a deap rbeathe and wait it out i ahve to say if it was me i would be demanding to knwo what was wrogn or at least a sooner appointment i do wish you all the luck in the world sorry if this respons comes lat i just got this email due to my own "shockign life" please knwo i'll be thinking and hopeing all goes well for you tommorow stacie ,24 wonderign when the shockign life gets better ! <shadow061@...> wrote: hi guin and all well got a phone call from the VA hospital said to call my EP asap and go in to see him said i have a problem with my device, called my EP and will go in on Wednesday, they would not tellme what is wrong jsut that i had to get in asap. now im all worried and upset just took to pain meds so ican relax and be able to sleep tonight. think its time for a good swig of Jack daniels. Since this thing went off two weeks ago have been really tired and cal fall asleep almost anytime wonderng if this has something to do with my icd any thoughts? anyone? sure could use some cheer right now. crap am not ready to go yet lol. take care all john in az From: Candi <candi51gmail (DOT) com>Subject: Left Ventricle Non Compaction@groups .comDate: 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 Hi all first i have to apologize for being a butt head last night was geting pretty well messed up with the booze, one of those I feel sorry for myself things. Have been checking my blood pressure today and it keeps bouncing around i just check it before gtting on here and it was 95/64 pluse 93 so makes me wonder what is going on. I appreciate all the kind words and thoughts from everyone, jsut wish my daughter would reespond but....oh well. i did speak with my brother today and he said he will go with me tomorrow if i want him to, told him no need that everything will be ok. didnt sleep much last night lol so maybe tonight i will but have to get up at 4am to go down to Phx. My a/c went out on my truck so its gonna be really warm down there i guess, hate the heat well the real hot and Phx is a hot spot this time of year. Yuck !! yeepeee my diamond backs are winning beating the Cubs 5-1 sorry im baseball fan one of those exciting moments. always wanted to play ball but couldnt living on a farm , if anyone has lived on a farm you know what im saying. alway had chores to do lol. anyone know of any nice single ladies that would like a nice man ? been single for along time and think now i would like to find a good woman. have no idea why i saying this all this lol being a knucklehead tonight. oh well time to check more email. Again i thank all of you for your kind words and thoughts. will let you all know what happens when i get back, maybe. lol. Peace and Love to All. From: Candi <candi51gmail (DOT) com>Subject: Left Ventricle Non Compaction@groups .comDate: 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 well i sure do hope everythign goes well take a pocket fan with you ! or stop and put ice water in a spray bottle and spray yourface as needed to cool down ! please drive safely whats your bp normaly run since you seem concerned of it please elt us know how it goes ! i for one am worried for you ! <shadow061@...> wrote: Hi all first i have to apologize for being a butt head last night was geting pretty well messed up with the booze, one of those I feel sorry for myself things. Have been checking my blood pressure today and it keeps bouncing around i just check it before gtting on here and it was 95/64 pluse 93 so makes me wonder what is going on. I appreciate all the kind words and thoughts from everyone, jsut wish my daughter would reespond but....oh well. i did speak with my brother today and he said he will go with me tomorrow if i want him to, told him no need that everything will be ok. didnt sleep much last night lol so maybe tonight i will but have to get up at 4am to go down to Phx. My a/c went out on my truck so its gonna be really warm down there i guess, hate the heat well the real hot and Phx is a hot spot this time of year. Yuck !! yeepeee my diamond backs are winning beating the Cubs 5-1 sorry im baseball fan one of those exciting moments. always wanted to play ball but couldnt living on a farm , if anyone has lived on a farm you know what im saying. alway had chores to do lol. anyone know of any nice single ladies that would like a nice man ? been single for along time and think now i would like to find a good woman. have no idea why i saying this all this lol being a knucklehead tonight. oh well time to check more email. Again i thank all of you for your kind words and thoughts. will let you all know what happens when i get back, maybe. lol. Peace and Love to All. From: Candi <candi51gmail (DOT) com>Subject: Left Ventricle Non Compaction@groups .comDate: 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 Staci i will be fine. Right now i think laura needs alot of support. Let her know that she is very important to all. She is ! From: Candi <candi51gmail (DOT) com>Subject: Left Ventricle Non Compaction@groups .comDate: 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 : First off, you are not a butt head, you are frightened and rightly so. We all need a little help now and then and even though the nip of JD didn't do much for your typing skills, maybe it did help relax you enough to get through the night... :-! Let's all hope that tomorrow being Wednesday that you will finally get the help from your doctors that you really need. I have been praying for you and worrying about you too. I also wish help were more immediate for you than it has been the past few days. If I were living nearby to you, I'd drive over and take you where ever you needed to be and insist they help you now not later... Please try and get some sleep tonight and here is hoping that tomorrow will be the day you get the responses from the doctors. If need be throw a fit and make them listen to you. Do what ever it takes to get their attention. What have you got to lose? Go for it! As my father used to say, "No one takes care of you like you do." My favorite line is, "If I were your sister, what would you recommend I do? So change it up a little and ask, "If I were your father, what would you be doing for me? or at Ty Pennington would say on his bullhorn, "Well ok then, LET'S DO IT!" Gee, maybe you should bring in a bullhorn, maybe that will get their attention... What do you think? 8-) Sending you all my healing thoughts, Jody wrote: Hi all first i have to apologize for being a butt head last night was geting pretty well messed up with the booze, one of those I feel sorry for myself things. Have been checking my blood pressure today and it keeps bouncing around i just check it before gtting on here and it was 95/64 pluse 93 so makes me wonder what is going on. I appreciate all the kind words and thoughts from everyone, jsut wish my daughter would reespond but....oh well. i did speak with my brother today and he said he will go with me tomorrow if i want him to, told him no need that everything will be ok. didnt sleep much last night lol so maybe tonight i will but have to get up at 4am to go down to Phx. My a/c went out on my truck so its gonna be really warm down there i guess, hate the heat well the real hot and Phx is a hot spot this time of year. Yuck !! yeepeee my diamond backs are winning beating the Cubs 5-1 sorry im baseball fan one of those exciting moments. always wanted to play ball but couldnt living on a farm , if anyone has lived on a farm you know what im saying. alway had chores to do lol. anyone know of any nice single ladies that would like a nice man ? been single for along time and think now i would like to find a good woman. have no idea why i saying this all this lol being a knucklehead tonight. oh well time to check more email. Again i thank all of you for your kind words and thoughts. will let you all know what happens when i get back, maybe. lol. Peace and Love to All. From: Candi <candi51gmail (DOT) com> Subject: 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 everypne deserves help lara and you both do hwoever i ahve replyed to hear but cant seem to locate the origanl message there for am not sure my reply was helpful or not we all neeed support and it will be there for everyone but iu just wanted you to knwo i was think of you ! <shadow061@...> wrote: Staci i will be fine. Right now i think laura needs alot of support. Let her know that she is very important to all. She is ! From: Candi <candi51gmail (DOT) com>Subject: Left Ventricle Non Compaction@groups .comDate: 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 Jody you're a nut i apprecaite your thoughts and wishes but i will be ok. Just got to feeling sorry for myself last night. I know it is somewhat normal to feel this way, but my dad always says "buck-up", eeasier said than done at times. anyway i will be fine right now im concerned for so please let her know that she is loved very much by all of us and especially her children. they do need her ! I was never so scared when i had my first attack, ever hear of someone say they saw the light at the end of the tunnel, well beleive me its true. dogone scarey. i wanted to live so i could see my daughter one last time if it were to be, when she got to the hospital she started to cry thats all it took for me to fight like hell to stay alive, my child ! I wanted to live then and still do now even after all this heart stuff. We all are survivors and will continue to be more than other know of us. Only the strong shall survive as the saying goes. you will get thru all this and survive, we all have been thru tough times and you will make it also. Believe !! From: Candi <candi51gmail (DOT) com>Subject: Left Ventricle Non Compaction@groups .comDate: 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 Hey all time for me to hit the sack its 10pm and this old man needs some sleep. Keep and i in your prayers and thoughts, tomorrow will be a good day, i know. Good Night ! From: Candi <candi51gmail (DOT) com>Subject: Left Ventricle Non Compaction@groups .comDate: 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 Good Night Boy, Good Night Grampa, Good Night .... wrote: > > *Hey all time for me to hit the sack its 10pm and this old man needs > some sleep. Keep and i in your prayers and thoughts, tomorrow > will be a good day, i know. Good Night ! * > > > > From: Candi <candi51gmail (DOT) com> > Subject: 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 > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 good morning all its 5am here and thought i wold check in before taking off. have been awak since 230 am am really tired but tme to splash some cold water in the face and get moving. will check in when i get back later today. hope you are ok and doing better today. Jody well what i can i say, guess im speachless right now, . and Staci, keep smileing, makes people wonder what you're up to. Take care all >> From: Candi <candi51gmail (DOT) com>> Subject: 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>>>>>>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2008 Report Share Posted July 28, 2008 Hi , I noticed a few JD typos, one rule I live by........typing and drinking DON'T mix. been there, done that. sorry so late getting in on this. I live in Minne-snow-da, and I love summer!! Not much computer time these days. Left Ventricle Non Compaction@groups .comDate: 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2009 Report Share Posted September 3, 2009 http://www.mayoclinic.com/health/ejection-fraction/AN00360 Ejection fraction is a measurement of the capacity at which your heart is pumping. This website should explain it. Mine was 9% however over the years with medication and exercise I am between 23% to 30%. YOu still can live a normal life with those numbers as well. Kind regards, TURK From: shadow061 <shadow061@...>Subject: EF Date: Thursday, September 3, 2009, 9:11 AM Good morning all, i was at the VA on Tuesday for checkup on my ICD battery is at 2.49 but also was told my EF is at 25%, can anyone enlightend me on this, as im not so sure what it means. Was told that my EF should be up around 50-60%. Is this why i get so tired and feel fatigued all the time ? the meds i take are : Co-Reg, Lisinopril, Lastix, Potissium, Crestor. Thx all for any advice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2009 Report Share Posted September 4, 2009 The EF is gotten when they do an echo—that wand with the gel they move around your heart. Docs can get the size of the vessels & chambers of your heart as well as the EF. That way they tell whether you are changing for the good or bad. Our doc calls it “remodeling” as the heart changes. When my hubby got his ICD & was dx w/ heart failure 4/2004, he was 25%, after meds he went to 48% in 6 months & has stayed there till the last 2 times he was 35% in April & 38% last Nov. Not sure why –she did change his lasix (furosemide ) to daily instead of as needed (prn) as well as the spironolactone he was already taking to ease the load on his heart, but he still lost that 3%. Janet EF > > Date: Thursday, September 3, 2009, 6:11 AM > > > > > > > > > > > > > Good morning all, i was at the VA on Tuesday for checkup on my ICD battery is at 2.49 but also was told my EF is at 25%, can anyone enlightend me on this, as im not so sure what it means. Was told that my EF should be up around 50-60%. Is this why i get so tired and feel fatigued all the time ? the meds i take are : Co-Reg, Lisinopril, Lastix, Potissium, Crestor. Thx all for any advice. > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.