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Idiopathic Dilated Cardiomyopathy

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What is the Prognosis for a Patient with Idiopathic Dilated Cardiomyopathy?

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Current Postings on This Page (125):

• Follow up to my post December of 2012. Had my DCM in Sept. of 2012. Have religiously been taking my meds and sticking with the sodium restrictions. Have lost about 40 lbs. Was initially at an EF 0f 14% Have been taking COQ 10. magnesium, Acytyl-L-Carnetine and D-Ribose every day. Also take fish oil, D3, and multi Vitamin and Zinc. By April 2013 my EF had made it back to 27%. After reading about the inflammatory effect I drastically reduced my white sugar consumption to almost zero. My last echo has my EF at 50-55%. I walk about 1-1.5 miles per day. Stick with the meds and take the supplements. There is a lot of evidence that they work. My mainstream cardiologists have checked for any adverse interactions with the supplements and told me they can't hurt with the medications I take. Check into it with your doctor but there are people who have come out of hospice with these supplements.
Dan C, Atlanta, Georgia, USA, November 5, 2013

• PLEASE don't give up hope! I was diagnosed with idiopathic DCM in 1995 at the age of 27. My EF was 20%. I am now 43. I was on Coreg, Coumadin, LASIK and a host of 15 other drugs for about 5 yrs. my EF improved to 75% and I was allowed to get all all my mess. I was finally deemed as "cured". Sine then I got married and had 2 children now ages 5 and 6. I thought these were things I would never have. I have had no relapses and was monitored closely during both pregnancies. My EF stays between 70-75% now. I have taken no medication in the last 13 years and am only monitored if I am having symptoms. I read the 70% die in 5 yrs. DON'T let that be you death sentence. You can beat these odds. I did. I want to give others hope! Although my medical file is about a foot thick, I am here to tell the story. I celebrate every birthday as another gift. I am I am 16 years out and going strong!!! So Fight! Never give up. I made it my mission to beat this thing and I did. My prayers to all of you suffering and my hope for the future.
Alive and kickin2013, Dallas, Texas, USA, October 19, 2013

• hi.. myself Varsha. One of my relative has after heart enlargement had done with bypass operation...presently his heart working capacity is lying between 20-25%.my question is whether CRT /PACEMAKER can be used at this stage by keeping it outside the body or affixing it in the heart despite reduced working capacity of heart
varsha bothra, balaghat, madhyapradesh, INDIA, August 22, 2013

• I have just found this site & think it's wonderful, but some answers/responses would be good too. My 78yo mother has had idiopathic CM for nearly 20 years. At first she was told she had no more than 5-7 years to live. She has now outlived two of her cardiologists. I think the beta-blockers have been good for her. She has recently had a bivent pacemaker and defibrillator fitted. I am 52 and have recently been diagnosed with ICM too. I am now on beta-blockers. I hope and pray to be okay. I take CoQ10, hawthorn, ribose, taurine, ALA, carnitine, cactus, motherwort, curcumin, beetroot powder(for NO), astragalus, dan shen & other vitamins. I can't say I feel any different for taking them. I am also trying acupuncture. I think the acupuncture helps to deal with symptoms but does not fix the heart. I have always been fit and healthy, but a lot of stress in the last few years. I hope they find out what causes this and how to cure/fix it, either stem cell therapy or anything. If anybody out there has tried anything that works pls email me at lucianah@grapevine.com.au. Cardio told me to get my 2 daughters echoed every couple of years & that nowadays most patients with CHF die of something else.
water_lily, Canberra, Australia., August 5, 2013

• Hi - I was diagnosed with idiopathic cardiomyopathy in November, 2012. Who are the best doctor(s) in the US? I live close to Cleveland Clinic but would travel anywhere for a second opinion. EF 25-30 and staying consistent after several echos. Have not been able to return to 50-60 hr/wk demanding job and probably will have to take an early retirement. On Coreg and was on Cozar but thankfully was able to get off - it really made me feel bad w a lot of joint pain and dropped my BP way too low. Also, COQ10, fish oil, vit D and b-12 shots. Again, if there is a name or names of really good docs who may be doing research or trying new approaches, I would appreciate knowing. Thank you.
Catherine, Pittsburgh, Pennsylvania, USA, July 21, 2013

• My husband was diagnosed with DCM in December 2012 with an EF of 10%, and his lymph nodes glands were enlarged which they thought was cancer. We thought our world had come to an end. He was put on a drip of Furosemide for 24 hrs and lost over 5 litres of fluid and over a stone in weight in that time. His body had been drowning in fluid. He was put on medication and was home for Xmas. We have had a total lifestyle change, thankfully he hasn't got cancer, our way of eating has changed. Six months down the line his EF is now 22% and his heart is not far off being back to its normal size, he is having an angiogram this month to check his arteries so we are hoping for good news there. It hasn't been easy by far, loads of tears and frustration along the way, and there will probably be loads more. So frustrating for hubby as he has felt pretty useless not being able to provide for his family, but he is now back at work doing a different job. It might take at least 2 years for the heart to get back to some kind of normality or it might stay as it is,but having the love and support of a wonderful family and friends can help you look forward. He will be on medication for life but here with me.
Marion, Wales, United Kingdom, July 7, 2013

• In Australia we have recently heard of a new strain of cardiomyopathy called left ventricular non-compaction cardiomyopathy. It is apparently more prevalent in the USA amongst children but in Australia the cases we have been notified about are mostly adults. The newsletter for Cardiomyopathy Australia is featuring an article in our August issue written by Professor Chris Semsarian. If you want to know more about this please go to www.heartregistry.org.au. You can download the information from that site. When one knows that it was only in 1990 that there were distinctions made between the various types of cardiomyopathy it is obviously now a much bigger problem than first thought. If you're in Australia contact Cardiomyopathy Australia (Cardiomyopathy Association of Australia Ltd) & we can give you the support for your condition. You can also check out the website in the US just type in the name of the condition & the foundation is in Cincinnati. They recently contacted the Australian Facebook page & made themselves known to us.
Margot Maurice, Cardiomyopathy Australia, Gold Coast, Queensland, Australia, June 27, 2013

• Diagnosed with DCM at 29 years old. Told I would need a transplant in less than 10 years. I am now 5O years old and have had 21 great years of full-time work as a teacher. I did have an ICD implanted about 5 years ago and have had no episodes or shocks delivered. EF is about 32%. Since then my family had genetic testing done and my mom, her two brothers and one sister all had the gene. My sister does not carry it. Currently taking Coreg, Digoxin, enalapril and coated aspirin, along with Spironolactone and Lasix as needed. Would like to encourage all newly diagnosed people to remain positive, stay on your meds and always give thanks for each day!
Suebell, Ontario, Canada, June 26, 2013

• To grieving family, Huntsville, Ala. I also had adriamycin for breast cancer in 1996-97. In 2001, I began experiencing symptoms of heart failure and was admitted to hospital with an EF of 14. During my chemo treatment, the oncologist did not monitor my heart. He said at the level of chemo I was receiving the risk of heart damage was too small to worry about. Since then, doctors have seen too many women with damaged hearts because of adriamycin. I am so very sorry for your loss.
jholly, Jonesborough, Tennessee, USA, June 14, 2013

• My response is for Stacey in New Zealand. If your partner has been told he might get an ICD then that will be terrific for him. The results that come in from those with ICDs is how much better they can manage once it's put in. Last year I had a CRT-Pacemaker which paces both sides of the heart. All devices help patients so much these days so please be assured things will improve. There is a contact in New Zealand from Cardiomyopathy Australia which takes in NZ. You could email her andreafullerton@yahoo.com.au. She would happy to give support. Stay positive. Margot (Cardiomyopathy Australia)
Margot, Cardiomyopathy Australia, Surfers Paradise, Gold Coast Queensland Australia, May 5, 2013

• My message is for Jemma in Australia. You have youth on your side Jemma & these days a valve transplant is a common surgery so don't worry. I was 70 when I had 2 valves replaced & it made a huge difference to me. I have had dilated cardiomyopathy for nearly 30 years & since the valve replacement I have had several angiograms & more recently had a CRT Biventricular Pacemaker put in. Feeling great now although still have a low ejection fraction. It was 20% before the CRT but is now 25%. Don't worry about your ejection fraction (EF) as different people manage quite well with very low EF. If you want to read the Ebook that is on the market about my survival since being told I would only last 6 months in 1984. It is called "Six Months to Live... my cardiomyopathy story of Mind over Medicine" by Margot Maurice. It is available from most online bookstores in their Ebook section & also available from Australian online booksellers.
Margot, Cardiomyopathy Association of Australia, Surfers Paradise, Gold Coast, Australia, April 14, 2013

• All cardiomyopathy sufferers should consider joining a support group. Cardiomyopathy Association of Australia is one & Cardiomyopathy Association UK is another. I am a member of the Australian Association & can speak from experience that speaking with people who have the same condition can be so comforting. Some people are saying they have stopped taking their medication once they feel better but be assured you might only be in temporary remission & whilst you are feeling better it is essential that you continue with your medication. You are feeling better because of the medication. I speak from experience. Cardiomyopathy (both Dilated & Hypertrophic) is at this stage an incurable condition albeit you will feel as though you're cured but the medicos advise strongly to keep up your tablets. Even if your ejection fraction comes up higher than 50% you can relapse. Speak with your cardiologist about the matter.
Happy Heart, Australia, April 12, 2013

• I am thrilled to see a comment on this forum mentioning my recently released Ebook, Six Months to Live .. my cardiomyopathy story of Mind over Medicine. I wrote this book in the hope that it would inspire others who have cardiomyopathy as I was diagnosed in 1984 & told I had six months (thus the book name). I always say they didn't tell me which six months so that's why I'm here but in all seriousness if you are struggling with this condition please get a copy of my book as I feel it will help. There is also some info from medical experts & you'll see how there is so much more to help sufferers these days with the changes in medication & better diagnostics. The book is available from most Ebook retailers. Just Google my name... Margot Maurice & info will come up. Also go to my Facebook page & perhaps I can help in some way. Stay positive.
Margot Maurice, author & retired journalist, Surfers Paradise, Gold Coast, Australia, April 12, 2013

• Hello all. 49 y/o male diagnosed with DCM about 10 years ago, viral they say. Currently on 40mg of Coreg and 50mg of Accupril and aspirin. Also take multi-vitamin, fish oil and 200mg of CoQ10. Annual echo and check-up with cardiologist. Doc is hesitant to discuss EF in detail - says it's just a number. However, seems to be dropping, 40 with this started to current level of 30. No restrictions from doc. I consider myself to be with few, if any, symptoms. May have to take a deeper breath at the top of stairs. Currently exercise intensively every day including runs up to half-mary distance. I contribute my 'normal' lifestyle to coreg and exercise but start each run thinking it may be my last. I have an appt with a heart failure specialist in a few weeks for a second opinion (suggested by my GP). Hope to hear the same thing from him as my local doc but won't be surprised if he recommends an ICD. Hard to make that decision given the way I currently feel. Very good to be able to read about others that have managed the condition. Good luck to all.
Tbuck, Arkansas, USA, April 10, 2013

• This has been very helpful reading these blog offering information and hope. My mum was recently diagnosed with dilated cardiomyopathy- not that the cardiologist gives us much info! My mum is 66, no co-morbidities or risk factors, in severe heart failure- doc says her heart at 15-20% function. , now on relevant meds and I have her taking fish oil an Q10. We are trying to stay hopeful, but other data doesn't look great? Am hoping the meds help a lot, doc may also consider ICD device. Very scared about future but your stories of hope give comfort thank-you.
Nattles, Australia, April 4, 2013

• I'm 49 and have DCM genetic they think, in six months my EF has gone from 41% to 45% using q10 200mg per day for six weeks I have now added magnesium 400 mg per day. I have returned to work full time as a social worker so stressful job and I am not as tired or breathless as I was before q10. I get the pharma nord off line as it is higher in concentrate and my pharmacist takes it who had a heart attack. If you have just been diagnosed don't worry you can live a full life read Margot Maurice's book it is certainly one to make you see it's not all doom and gloom.
Shazzy, Manchester, United Kingdom, March 28, 2013

• Hi my partner who is 23 year old found out 6 months ago that he has cardiomyopathy. his EF is 29% and heart is still very enlarged. He went in thinking he was getting gall bladder out they took him in got the gall bladder out and crashed on the operating table. In ICU for a few days told he will not make it. He is home now with myself and his 3 children. he is going to have a ICD in. I'm just wondering what could help him through this any idea how can get heart EF up as well as taking meds.
Stacey, Otorohanga, New Zealand, February 23, 2013

• Hello - my husband was diagnosed with Idiopathic DCM 5 years ago and is now dead from sudden cardiac arrest. his cardiologist said he offered ICD but my husband would have never turned down pacemaker/defibrillator and if I had known he could experience sudden cardiac death, i would have purchased a automated portable defibrillator. not saying I would have save his life but he would have had more odds of surviving. for those out there that are afraid of ICD/pacemaker/defibrillator, please please let the doctor insert, it could save your life. my husband was 48 years old when he passed away. His brain was deprived of oxygen for 25 minutes which really caused his demised. he laid at the hospital for 11 days on a ventilator until I decided not to have them perform a tracheostomy & head him to a nursing home with no value of life.....please please stay on top of cardiologist and be an advocate for your own health. My husband's cardiologist thought my husband had time to lose a little weight & sent him home 12/9/12 with increased intake of Lasix and my husband had sudden cardiac death 12/20/12!!!!! Please do as much research for your own health!
Lisa, Los Angeles, California, USA, January 29, 2013

• Diagnosed w idiopathic dilated cardiomyopathy in April 1988!! My heart function was 31% swollen ankles, weak. I became short of breath after pneumonia. Had had little sleep since my baby was born and was experiencing grief over the sudden death of my sister. Trust your instincts. Three doctors said it was stress. A female doctor listened to me and ordered an echo. She was an angel. My daughter is grown and I've lived almost five years beyond expectations at the time " you won't die of old age". May need a pacemaker soon but I'm still here!! 300 affirmations a day kept me sane and able to ignore the horrid anxiety that accompanied my low heart function. Your spirit makes a difference.
Starfate, Sacramento, California, USA, January 23, 2013

• Can I fly 9hour with cardiomyopathy and myocardios
Maria, Scotland, January 6, 2013

Milind -- you wrote a post on 23rd May 2012 that your wife was diagnosed and cured for Idiopathic Cardiomyopathy in Ahmedabad. My Mother has similar problem, can you contact me on 09998945382 or pls give me your number, Amit.
Amit, Gujarat, India, January 4, 2013

• Well I had non ischemic dilated cardiomyopathy on Sept 7 2012. My ejection fraction was 14% and I am 60 years old. I had a previously healthy heart that was apparently infected by a virus. I took the prescribed medicines and after a month I was introduced to supplements by a naturopathic doctor. (DO). He got me taking Co Q10, acetyl L carnitine, and D- Ribose. I also took D3, Omega 3 Fish oil and magnesium. I added the magnesium because I read that there were some who thought the first three combined with magnesium was a miracle cure for heart failure. I just had a echocardiogram after 90 days and my ejection fraction has improved to 30-35% and I have substantially more energy. I can walk a mile and have begun going back to work. I am sticking to the sodium and fluid restrictions and regular moderate exercise. I think the supplements have made a difference. I don't tolerate the Coreg very well and am taking much less than a normal dose. Happy holidays everyone.
Dan C, Atlanta, Georgia, USA, December 20, 2012

• Hello I was Diagnosed with Non-ischemic Cardiomyopathy at age 28 With a Ejection Fraction of 14% my Ejection Fraction has went up to 57% & back Down to 35% 7 month's Ago I just had another Echo It's Back to 50% I'm 46 1/2 years Old,I've Been Living for 18 1/2 years After Being Told I'd be lucky to live a year or two,I'm on a lot of Meds,I Don't Worry About the Future I live Day by Day & have been Grateful I've lived this long,I don't give up I try & stay active & busy,Maybe this Will give Someone Else Hope.& I stay Close to the Lord Jesus.
Woody, Grayson, Kentucky, USA, November 7, 2012

• My son was diagnosed with DCM when I went in for my first ultrasound at 6 months. When he was born he was very swollen. He went on meds right away and was kept in the NICU for 10 days. They sent him home with us skeptical of his survival. It's been 3.5 years and he's still with us. Still no clue as to why he has this but we are enjoying him and not dwelling. I do worry about the day he starts questioning his condition and that saddens me. Soon he will start going to Lucille Packard/Stanford. His cardiologist tells me that this is very rare for a fetus to have this and I can't find much online about it either. I don't know how long he'll be with us but I know he's with us today and that makes a great day.
mom to heart baby, Sunnyvale, California, USA, September 26, 2012

• Hi there everyone. I hope this story of mine will give you hope. I was diagnosed with a dilated cardiomyopathy 9 years ago (at age 24) I'm now 33. When I was admitted to hospital I could barely walk a few feet without collapsing. I was coughing up blood (congestive heart failure) and was struggling to breathe. My legs all swelled up as well. While in hospital I was put on high dose diuretics which made me wee for England, ace inhibitors, gtn spray, oxygen, isosorbide mononitrate. Basically the works. While I was in there I had a TIA and was put on warfarin. The outlook wasn't good as you can tell. After 1 month in hospital and love and support from my family, not to mention my stubbornness and determination I eventually got better. Was put on beta blockers after my heart could take them for about a year and my heart eventually went back to normal. I now lead a full life, work 9-5.30 every day of the week and go to the gym 5-6 times a week. I take no medication whatsoever and there has been no lasting effects from my TIA. Stay positive, stay determined and remember that the body is an amazing thing. It isn't the end of the world.
BigStu7, Crewe, England, August 18, 2012

• i was diagnosed wit dilated CM at 21 but its been nearly 9yrs I've survived n lead a very normal life wit EF 19-20,never was worried about death may b its the phase of age like 21 where the priorities r different like career,however lately now being 30 and only after my guy dumped me wit the reason that he couldn't lead life wit me cause of my illness has broken me completly n making me suffer thru severe emotional breakdown,now m pretty sure it started affecting my condition and i do feel i should die soon.anyways the point i tried making here is u can surely ignore the myth of 5yrs lifespan for CMP patients survival ,what maters is will power and ignoring the fact that u ill n jus lead a normal life like every1 else around does.
illusioned, Kent, United Kingdom, August 15, 2012

• Hello everyone! I was diagnosed with cardiomyopathy after the birth of my daughter and given 6 months to live. My EF at that time was 18%; that was 15 years ago. I am now 44 yo and my EF is 50%. My heart is still enlarged and I've developed a prolonged QT wave. I'm experiencing syncope and am very scared because it has been several years since I was severely ill. I've gone from being attached to a defibrillator to living a fairly normal life. I can't tell my husband how I feel because he has been through so much with me that I try to have as normal a life for him as possible. I was very happy when I found this site so I could read about your lives and challenges you have overcome. They really encourage me. God Bless!!
Wendy, Memphis, Tennessee, USA, July 17, 2012

• I live in Mumbai India. My wife had DCM and her EF fell to 20% and used to have breathlessness while walking a distance of 20 feet. She underwent stem cell therapy in Ahmedabad in India. It is two years since the treatment. Her heart size has come to normal and EF increased to 40%. She does all normal activities with intermittent rests. This treatment on the heart was the first of its kind done in India. You may contact me for further help. I would love to.
Milind, India, May 23, 2012

• Dcm ef 20 9 years ago at age 35, Many cardioversions 2 ablations no success.150 coreg,10 altace, inspra, warfarin couldn't control beats. Had CRT ICD and left node ablation 3 months ago. Generally feel better, will go in for full cardiac workup in month. Will be interesting to see if any progress.
Li.ija, British Columbia, Canada, April 27, 2012

• Dear Rox0321 Utah - USA  I was diagnosed with idiopathic DCM in 1997 just like your husband and I am still around. It is not easy to live with 20 tablets a day, fluid and salt restrictions and a daily reminder that things will never be the same. Mostly I am in heart failure with an EF of between 16 % and 20%. Going uphill is very strenuous and am constantly out of breath when doing so. Apart from that I have an implanted defibrillator and full pacing pace maker, which incidently saved me three times so far when I had ventricular tachycardia. It paced me out of it within ten minutes without having to resort to shock. My life revolves around hospital appointments and prescriptions, but no more admissions due to atrial fibrillation or cardio versions, see pace maker. I am 67 and, according to earlier beliefs, dead long ago. My partner is 15 years younger and we avoid talking about death. Hey, guess what, - it is humour what keeps me going and the worst for the condition (I avoid to call it disease) is stress. Emotional stress. I am an atheist and think logical and seem sarkastisch to some. But inside I am optimistic. I wish your husband all the best for the long future xxx Rika
Ulrike, retired, Melbourne, Australia, April 13, 2012

• Found Cardiomyopathy when I was 47. Everyone said I had to be exhausted but I wasn't. I do remember lying down at night and feeling like my heart was thumping my chest. Initial EF of 25%, found by ER 3 yrs prior but sent home without being told. Had DVT and then Pulmonary Embolism that put me into Congestive Heart Failure. In same hospital that sent me home 3 yrs prior. Doctor explained "Sudden Death Syndrome". Very scary. On Coreg Cr, Lisinopril, warfarin, Lasix, and aldactone. EF is now 40% no need for a defibrillator. Also have CPAP at night so to not put any extra demand on heart. Heart is no longer enlarged. Don't feel this has limited my life. Quit smoking, gave up caffeine and now trying to lose weight. Still work 3 12 hours days a week. Won't let this stop me. Don't let this stop you from living.
Happy Heart, Ohio, USA, March 31, 2012

• Hello Everybody up in north America or any other countries around the world. I am a 38 year old male who was diagnosed with dilated cardiomyopathy just a few weeks ago and my EF 50%. All I can tell you is that i have read some of these wonderful stories for those who found improvement after therapy, and i like to say for those who have not yet, that there is an Almighty Lord that we all need to look out for. I am only taking digoxin 0.25, Coreg 6.25mg and lozartan for high blood pressure, which i take as prescribed since i am having dyspnea and trouble sleeping at night because of opthornea. I know all of you feel down because of this illness but tell me about it, when i didn't do drugs and alcohol longer than 6 months when i was 16 of age, and then i dedicated all my life to eat well and exercise until i was diagnosed with this problem. The bottom line is, that if take your medication as prescribed daily, eat well and most important, put your faith in GOD everyday that you are on earth, the medication would work for you no matter what. GOD bless all of you and keep you faith up in the Lord Jesus!
Ernesto Zepeda, Soldier of Jesus Christ forever, El Salvador, San Salvador, March 28, 2012

• I am 47 years old and male. At 39 i was diagnosed with Heart Failure (also my heart was dilated), EF of 35%. Went on Coreg and Altace. Also Digoxin and Coumadin (had Afib) and had Left Bundle Branch Block. Was told probably came from virus. I was asymptomatic. Initial Coreg Dose was 2.5mg twice a day with food. Would make me light headed if i stood up too fast, but i took this as a positive that meds were working. Coreg was increased to 50mg per day over time and then 80mg CR once that came out. After 18 months heart was improving and shrinking. 4 years in and EF was at 55% and heart normal size. Now EF of 60% plus and cardiologist says my prognosis same as anyone normal. I don't believe that but feel like Coreg is miracle drug. Afib is gone, i don't take Coumadin nor digoxin as i have good rhythm now. I take Coreg, Altace and a baby aspirin. I used to work out hard pre Heart Failure but now i am pretty sedentary. If you have this, there is hope. All studies gave me 50% chance to make it 5 years and 25% to make it ten when i was diagnosed. Honestly I feel like Coreg has made these old prognosis obsolete in some cases.
Alive and Well, Denver, Colorado, USA, March 18, 2012

• 14 years ago I developed DC when 5 months pregnant at the age of 40. Went to ER with 120 heart rate, sent to Cardiologist who sent me home saying I was 40, pregnant and overweight. Ok.... Was very tired and swollen by 36 weeks, OB Dr decided to deliver by c-section. I developed pulmonary edema during the c-sect so heart echo done and my EF was 25%. Whoops, must have missed that when I was 5 months pregnant Doc. I was able to return to 50% EF with diet, exercise and meds. Within the last year ever increasing PVC's (runs of them) so am seeing a new Cardio Doc today. Anyone have a return of symptoms after years of none? Thanks My email can be posted. susique333 AT aol.com
Susie, Omaha, Nebraska, USA, March 14, 2012

• Hi, I'm female, 75, two years post R-CHOP. Few symptoms of any problems....but a very attentive internist. So Cardiomyopathy probably from Chemo. LVEF 15%. Many of the usual meds. I see my cardio doc tomorrow. Have reviewed meds and am wondering if ALL sulfa based meds should be avoided if rash and itch only sx. More concerns about others which I have to work out. HOWEVER this vs w/MD is first after Angioplasty which confirmed Mitral valve regurgitation and a few other problems. This does not seem to be going into a long term management program any time soon. I really don't want to deal with micromanaging any more physical problems. In fewer than five years I have developed ophthalmic, orthopedic, carcinoid and otological conditions and now this. Yeah, add depression. How can I find information on opting out of any more attempts at "fixing" all this? Is there any info on time factor for an untreated condition? At this time I'm basically without symptoms.....only have multiple malfunction. No CAD, strictly heart failure. Thanks.
G., Patient, Winchester, Virginia, USA, March 11, 2012

• My husband diagnosed with IDCM Jan. 1997, EF 17. Cardiologist suggest the Bess (I think is name) study for a stronger beta-blocker than Coreg. EF improved to 45, study pulled for adverse affects. Hubby put on Coreg and Lisinopril Lasix + a few others I can't remember. Heart threw a clot (ended up in his thigh *WHEW*) in 98, bypass added Warfarin. CHF diagnosed somewhere in here, but isn't it always??? 2003 or so EF starts to decline...slowly. Summer 2010 EF approx. 30ish. Hubby says no to ICD. Jan 2011 end up in hospital, bp @ 57/41 EF now 20. Keep Coreg at max dose for his weight, drop Lisinopril to 2.5 Hubby says yes to ICD (no pacing). Heart holding steady-ish. Last visit Doc says , yep AFIB, can't hear heartbeat. It was "distant" 3 months ago. Dr. is fantastic, well published cardiologist, head of heart failure clinic and transplant team at local University (love teaching clinic). Hubby is extremely fatigued, still works at desk job. Has spells of memory loss, confusion, dizziness. I haven't ask Dr. what these new developments mean...not hearing heartbeat, afib., hubby doesn't want to know I'm lost, and scared. Don't know what we're headed for. Suggestions?
Rox0321, Utah, USA, March 8, 2012

• Hi, I am 40yrs old and diagnosed with DCMP 3 months back and my EF WAS 32%. It came down initially to 28% and then to 25%. on medication now it is 35% again. But I am often getting fainted. my cardiologist diagnosed it as postural hypotension due to low levels of water in body. I have stopped diuretics for few days and now it is OK. I want to know about my condition and prognosis. can anybody help?
SHAILAJA R., HYDERABAD, INDIA, March 1, 2012

• This is to address the lady whose sister had chemotherapy for breast cancer 10 years ago at age 34 and died on August 27, 2011.grieving family, Huntsville, Alabama, USA, I want to say that I am truly sorry about your sister. My mother had breast cancer and was treated with the chemo drug Doxorubicin(adriamycin) a drug which is known by doctors to damage the heart. The only thing is we didn't know that chemo damages the heart. Her EF dropped 30 points after her chemotherapy was finished then 6 months after the mastectomy She was diagnosed with an enlarged heart, CHF, dilated cardiomyopathy with an EF of 20%. Now she is taking Digoxin 0.25 which I believe is not a good drug for CHF long term because she is experiencing bone pain, fatigue, weakness, numbness, pain stemming from nerve damage, loss of appetite and weight loss. I think when breast cancer is limited to the breast or lymph nodes,and it has not spread a lumpectomy or mastectomy should be a sufficient treatment, remove the lump or cut the breast and the heal the wound and then a less harsh chemotherapy treatment may be given after recovering from the surgery to help reduce the chance of breast cancer recurrence. My opinion.
ladiesbegentlemen, Chicago, Illinois, USA, February 12, 2012

• I have similar circumstances as many of the posters. Does anyone communicate or respond?
Marlo, Houston, Texas, USA, February 10, 2012

• Female diagnosed at age 52 six years ago. EF was about 12?. and I was told to prepare for a transplant. Since my blood pressure was always low I was gradually started on Coreg and now take 80 mg Coreg cr. EF improved to 35. 18 months ago i was given a defibrillator with cardiac resynchronization therapy and my EF has improved to 45. I've been skiing and feel better than I have in years. I've also decided that if my heart should start to fail I will go wherever in the world I need to to receive stem cell therapy. The US needs to aggressively study and approve this technique which has shown amazing promise. There is hope!
Susan in WV, West Virginia, USA, February 8, 2012

• Hi All I am Vijayanand, My baby just 3 months old. my baby heart pump EF of 36%. Is it normal or low. please advise anyone and also tell us further treatment.
samritha, Chennai, Tamilnadu, India, February 7, 2012

• I was diagnosed with Dilated Cardiomyopathy 4 years ago (age 21) after volunteering for an EKG during nursing school. My EKG revealed tachycardia and a left bundle branch block. Scared to death, I went to the doctor who got me into a cardiologist. My ECHO showed a EF% at 40. I was so confused because I felt normal, but had a failing heart. I was started on Coreg. After 2.5 years of Coreg my heart was stable and had an EF% of 55. My doc at that time said I could come off Coreg. Six months into the weening process I became pregnant. My cardiologist was not familiar with high risk pregnancy so my care was transferred to UAB hospital in Birmingham, Al. I delivered a healthy baby boy. I felt like my pregnancy went great. I did have a "slip" in heart function, but my Coreg was increased and my heart recovered in a month. I will be on Coreg and Lisinopril for life now, which I'm okay with. My heart function is currently 55%.
Katie, Huntsville, Alabama, USA, February 4, 2012

• I am a 40 y.o. female with 5 children. I was diagnosed with Cardiomyopathy 4 months ago with an EF of 40%. I have worn monitors frequently which has shown as many as 42,000 PVC's in 24 hours. I have also had runs of V-tach. I also have a severely regurgitative MV. I had a PVC ablation which was ineffective and am going for another in 2 weeks and I am taking several meds including Lisinopril, metoprolol and mag sulfate. My mother died from Cardiomyopathy at 58, her twin brother at 63, and I have a cousin with the same diagnosis as well. I am symptomatic every day, and I try to keep a positive outlook..yet I know I don't have a crystal ball. Was just reading these posts and wanted to add my story with a few thoughts...There are so many worse things out there in the world. (I have seen most as I am an ER nurse). This is not the end, only a new challenge. Whatever any of our outcomes, in the end..everything will be OK. my Mom said that when she was diagnosed at 55. Even though she lost her battle, I know she is OK and so are we...just miss her a lot!! Love your families as though today was your last and fight to live as long as you can. God Bless all of you! Keep up the good fight!
Christina Esposito, Magnolia, Delaware, USA, January 29, 2012

• Thanks so much for this web site..I am a 56 yr old women who was diagnosed with dilated cardiomyopathy in June 2011..my cardiologist. Didn't even explain my condition to me...he told me to look it up online...well when I saw that there was no cure and the death rate was high...I went into depression thinking I am going to die in a few years ...I am on all the was meds. I have been reading that everyone is on.my heart rate function was at 15% when I was in the hospital...it has gone up to 35-40% ...I am having complication with irregular heart beat...I'm going in tomorrow they are going to do an ablation on my heart to help stop the irregular heart beat...I hope it helps...I have fatigue on a regular basis...all I do is try to relax in watch a movie so I won't dwell on it. This blog has really encouraged me to heard what others are feeling and how they are treating this disease. I am going to find an other doctor who will discuss my condition more openly...with the prayers of my friends and my Creator I'm trying to live each as my last, and enjoy my family and tell them I love them everyday.
Sara in vegas, Las Vegas, Nevada, USA, January 22, 2012

• Diagnosed with Asymptomatic Idiopathic DCM in January 1998. First cardiologist misdiagnosed me with EF of 25 and intra ventricular blood clots. He gave me 5 years. Second opinion- EF 35, no blood clots, enlarged size, out of range wall thickness. Treatment included massive doses of Coreg (100mg/day) which was pretty radical in 1999. No ICD. My heart size shrunk back to normal along with a normal wall thickness by 2005. EF of 60-65 in 2009. Still on beta blockers and other meds. Feeling good and active at age 63. Still play tennis 4 hours/week and work out 3 hours/week plus working 40 hours/week. The Coreg was brutal especially when going from 50mg/day to 100mg. Thank God I'm on maintenance Toprol XL these days. It's like candy compared to Coreg.
Bill in Cleveland, Cleveland, Ohio, USA, January 16, 2012

• My husband was diagnosed in 1992 with idiopathic CM thought to be from exposure to a Coxsackie virus as an ER nurse. EF was 17% when dx. Meds - amiodarone, lasix, vasotec, digoxin, spironolactone to name a few helped. At the time, they gave him ONE year to live. Following year he developed Ventricular Tachycardia. He wound up having an AICD implanted - first one was big and took three incisions and wasn't redundant so when the wires fractured there was no coverage! Thankfully we did not know that until he developed a severe URI which caused CHF and off to the ER. On chest x-ray, they saw the broken wires. My husband managed to live until 2007 and did not die because of his cardiac problems. He was misdiagnosed as having a malignancy that was actually an abscess and one of the doctors at the VA poked it and four hours later he was dead. Bottom line, the cardiac care he received was extraordinary. The fact that we both are RNs was a mixed blessing - we knew all the problems and liabilities involved. My husband, especially after the AICD implant, lived his life to the fullest. The medication regimen managed to increase his EF to over 30%. Live all your life to the max.
Maryellen - widow, nurse, advocate 2011, private individual - psychiatric nurse, Newport News, Virginia, USA, December 22, 2011

• diagnosed in Jan '03 with IDC. EF was 10%. Once meds (coreg, altace, thyroid, lasix, aldactone, digoxin) to maximum doses over first two months, EF rose to 40%. It is now almost 9 years later--on third defibrillator. This one resynchronizes my ventricles. I feel more fatigued over past few months. Harder to walk even on flat surface w/o any SOB or laboring. However, today's echo showed IMPROVEMENT in the cardiac muscle and an EF of 50%. So, yes, one can improve. Must be another reason for fatiguability and laborious respirations with exertion.
Kschu15103, Long Island, New York, USA, November 29, 2011

• I was diagnosed with CM in June of this year. EF of 30% was put on a small dose of Coreg, ACE inhibitor, baby aspirin. I have exercised most my life, don't feel symptoms, or shortness of breath around this. I have consulted two cardiologists. One says since it is now November and last echocardiogram was about the same 35% I should put a pace/defibrillator in, also diagnosed with sever sleep apnea, other cardiologists believes C-pap will improve the EF...anyone hear this before? Right now very depressed which isn't helping but can EF improve either with medication (increasing Coreg) of C-Pap..new at this any experience with EF improving over time...one cardiologist says if it hasn't changed yet it won't? Not sure who to believe...any feedback around improving EF is appreciated. I have stopped drinking, never smoked and lost 20 lbs (mostly from depression) I can walk run 3 miles with out issues but not sure if I should be exercising...this illness is difficult to understand...When i was told i had CM I did not believe i had heart damage, meaning that my heart would improve...is that not the case most of the time.
MB Connecticut, Connecticut, USA, November 15, 2011

• Am 87. My progressive heart block became total Jan.1998. Heart normal otherwise. Had one-wire pacemaker. Echo in 2003 showed enlarged LV and EF 30. Cardiologist thought cause might be virus or desynchronization. Got an ICD with 3 wires, Coreg 2x37 1/2, Losartan, Spironolactone and lots of vitamins. Latest echo shows LV was rebuilt with normal wall thickness, but echo still 30. (Was told EF is not as important as we think it is) Reduced Coreg to 2x25, other meds same. Live on 9 acres, not as chipper as I used to be, my wife says it's my age. Tough to have a young spirit in an old body. Cardiologist says I can live another 10 years, hope so, am curious to see how the occupation will fare. Wish I could be there...
Oscar, Washington State, USA, October 18, 2011

• I'm a 32 year old male in reasonable good health, wife and 3 children, diagnosed just 3 weeks ago with idiopathic DCM, my EF is 10/15%, has anybody any experience at this level?
Irishmccabe, Ireland, October 13, 2011

• My sister had chemotherapy for breast cancer 10 years ago at age 34. In spring of this year she began having symptoms of CHF which she thought was asthma. In June she became very ill and was finally diagnosed with an enlarged heart, CHF, dilated cardiomyopathy with an EF of 10%. We have now been told that her EF dropped 26 points after her chemotherapy was finished - unfortunately she was never told that she had sustained heart damage. She died on August 27, 2011. Has anyone else experienced anything similar? I think ALL chemotherapy patients should be followed up at least annually by a cardiologist and am seeking answers as to why this is not being done. She leaves behind her husband and 3 daughters. I welcome any comments.
grieving family, Huntsville, Alabama, USA, September 24, 2011

• This is to address the lady who's 28 and wanting to get pregnant. I was 6 months pregnant and 26 years old when I found out that I had IDC. Me and my baby almost didn't make it. It was a miracle we both survived the delivery. That was the biggest problem because when you go in labour your heart has to pump 500 cc of blood per something...I went into heart failure, water in my lungs. I had an emergency c-section and was in ICU for 3 days. My baby was born 5 minutes after they sedated me and she was great, thank God. She had no problem, but I was in trouble, big trouble. I was advised that another pregnancy would kill me so we decided not to have anymore children, but remember I was already pregnant when I found out about my condition...
coeur, Windsor, Ontario, Canada, September 10, 2011

• Just over a year since diagnosis of non-ischemic CM. EF was 15, went to 20 over 90 days on meds. stayed there. now - max beta blockers, statin, aspirin, lasix, spironolactone, avapro, Feeling really good - light physical working 6-hour day no prob. (I'm 70 now. Only remaining symptom is I sweat easily. Regained 20 of the 40 pounds lost during onset and early recovery, not delighted with that but i look more "normal". not obese but 20 over ideal. ICD was implanted 9 months ago - no triggers yet, but much pacing activity (THEY guess that's at night).Doing MUCH better than anyone thought i would - and not really doing anything special except religiously taking scrip drugs plus co-q-10.hope you all fare as well.
Seaboy, ,Glastonbury, Connecticut, USA, August 16, 2011

• I am a 53yr old women, diagnosed with CHF in 2000 and then had a pacemaker put in back in 2003. I have been in hospital several times over the years. I am on coreg, lasix and several other meds. My GP doctor says he doesn't know how I keep going, I just amaze him. My cardio doctor is also happily amazed and my echo last week went from EF of 13-15% 20-25%. We have discussed Heart Transplant, but I am not sure I want to do it. So, it is on hold. I live in Colorado and there is pretty good air here. I am now thinking to move to San Diego, CA and I know the air is very bad there. I know the altitude will help me breath easier, but an concerned about the air quality now that I have been ill. I am from CA, but I have been in CO 11yrs, and wonder if the air quality in CO could be what has helped me stay alive - well of course plus my pacemaker and good doctors. Is San Diego, CA a good move for someone with CHF?
Rose, Colorado Springs, Colorado, USA, August 11, 2011

• I just turned 60 and have had Idiopathic Dilated Cardiomyopathy for 9 years. I have bounced between 20 % 30% EF. I have been converted by my ICD 21 times with the last time taking 5 shocks to get me out of V-Tach. I have gone into V-Fib 3 times. I found the best "To live by Info" at http://hartfalenderwijs.nl/en/lifestyle.htmI just wished I had found and followed his advice sooner. I have had to give up all exercise but swimming. By swimming slow I can keep heart rate below 100. I swim with a pull buoy or just fins. I can't kick and arm pull at the same time because my heart rate gets too high. It have gotten my workout up to 2500 yards. Of Course there is a nap afterward have to shut it down after about 3 weeks and give my body a rest. I have to completely shut down for a week before and after a vacation.Is anyone else swimming?There is a Summer Camp for kids 7-16 http://heartcamp.com/ I believe that it is free the first year. Sitting up in a reclined position helps when you are feeling bad.Last but not least - I am waiting for cloned hearts.
Fritz, Port Allen, Louisiana, USA, August 10, 2011

• Hello all! I am 28 years old and 3 months ago I was diagnosed with idiopathic cardiomyopathy my EF was 38%. My cardiologist hasn't given me an exact reason but thinks I may have gotten an infection in my heart. She isn't really telling me much at this point but am on medications and will have another ultrasound on my heart in august. The biggest part of this that is troubling to me is that I was told for the next 6 months it would be dangerous for me to get pregnant. My husband and I want to try for our first child next summer and my dr said that I would have to be at 45% to even consider getting pregnant and still be high risk, she would prefer I wait until I am at 50%. Has anyone here dealt with this while they were pregnant and could give me some advice or information. I really feel that as soon as my dr gives us any type of okay i want to try to get pregnant but am also afraid of what could happen to me or my future child if I decide to get pregnant before I hit the 50% mark. Thanks!
Carrie, Lawrenceburg, Indiana, USA, May 23, 2011

• Hello, I’m going to be 34 the next day, and just found out about my heart EF is at 40% and valves leaking on both right and left, i have 2 boys and 1 girl, you could have never told me that this would have happened to me. I’m scared for my children finding me dead, or where they will end up. every day i have chest daily and they radiate across my right breast and down my right arm. trying not to think of the worst,i try to show my babies love every second and take life one day at a time. if anyone that is a single mom with small kids ages 11-16mths,please email me with info on how to coupe and style changes. Thank you to whoever came up with this post idea, i feel a little better knowing I’m not the only one. Thank you.....
Love, Single Mom, Ocala, Florida, USA, May 21, 2011

• I am a 57 yr old male with DCM-HF (diagnosed last year) and Narcolepsy (N-diagnosed 1996). Last echo had LV @ approximately 9.0. My EF approximately 30%, give or take. AICD implanted 1/16/2011. On 2/16/2011, 4th lead added to AICD, placed on back of heart; charge was insufficient with 3 leads for effective cardioversion. Awkward position, as meds for N exacerbate my heart and AFIB (diagnosed 1996), while DCM related symptomology and meds increases fatigue, etc., further aggravating my day-to-day struggles with N. Pending outcome of VA rating, which should place me at 100% disability. Working as a tax auditor is very stressful. Whole situation is very depressing. Am I the only narcoleptic with DCM-HF and AICD?
Mika, Kansas, USA, May 18, 2011

• I was diagnosed with ICM in 2004. An EF of 40% and plummeting. I was overweight at about 70 lbs. Even before I had lost the 70 lbs. I started a regimen of Coq10 (NSI CoQ10 + Alpha Lipoic Acid + Acetyl L-Carnitine HCl 600-1000 mg daily) Corvalen- Hawthorne Berry-Fish Oil 8 grams-Am now 57% EF after 6 years. Thank you Dr. Sinatra!!
Ray, Arizona, USA, May 9, 2011

• One thing that I have realised is that the statistic shows that patients after being diagnosed do ok with medications I have been taking enalipril, lasix, K-dur and xanax because I also have arrhythmias I wear a life vest (externally worn defibrillator) because of the SCD that cause my mother demise, this was until my Doctors figured out my unusual presentations which was I started with PVC's in dec 2009 then within 6 months of taking propranolol for PVC's my EF when from 60% on echo to 28/30% on MRI, Since then I have been out of work since october of 2010 and considered disabled I am a nurse with a cardiac background. Now that I have genetics to blame my entire family will be tested including my 2 year old who has a murmur at this time and gets an echo yearly. But I believe that the drugs work and that if we as patient take them as we should along with a little restrictions (fluid/sodium) that we can all discount the statistics. I have found a lot of help with cooking meals myself and using more herbs and spices rather than salt products that are salt free with a pinch of salt is great. metalozone is great with lasix but everyone should consult their physicians before taking any meds
Latania Parkes, Plainfield, Illinois, USA, April 28, 2011

• I'm a 49 y/o male who was diagnosed with idiopathic cardiomyopathy 16 months ago. My ef was 10% and I was admitted to the hosp. once with CHF. With the use of medication i.e.; Coreg, Norvasc, Lasix and life style changes i.e.; reduction of alcohol and tobacco, I now have an ef of almost 60%! I also exercise more and try to watch my diet. I won't say these results are typical for everyone, but I do believe lifestyle changes are essential.
Steve Duguid, patient, Garrett, Indiana, USA, April 26, 2011

• hey guys I am 27 years old female diagnosed with IDC genetic positive, i had a EF of 28% and after and ablation for 30% pvc's my EF went up to 40% after 7 months since I was diagnosed to be genetic positive and my mom died of SCD then i will be getting a pacemaker and AICD.
Latania Parkes, Plainfield, Illinois, USA, April 25, 2011

• Firstly, Thank you very much to the person who started this blog. I am a 28yr old male and was diagnosed 5 month ago (Nov, 2010) I'm on carvedilol, bisoprolol, and spironolactone. (10mg, 10mg, and 25mg respectively) My ef was 15% at diagnosis and recently still at 15% a month ago. I am currently in the midst of further testing to determine if I will be put on the transplant list. I am determined that I can better my situation through diet, exercise and rest. Some days are better than others. From time to time I find myself getting upset, angry and scared but it's places like this where I can read of other peoples good results that give me hope that I will indeed better my health. I wish everyone all the best and hope some day they will find a way to permanently reverse the effects of DCM. Cheers,
Tim K, Kitchener, Ontario, Canada, April 25, 2011

• diagnosed at 20 with moderate IDCM with an ef of 35%. Its been a year and a half and I'm still trying to cope with it. You would think after a while you would get over it but its not that easy. Thanks to meds, positive support and light exercise I have been able to cope. I know i will one day require a transplant or some major surgery but a positive attitude takes you a long way. to date my ef is 50%
Bruno, Australia, April 20, 2011

• Hi my name is TIM, i was diagnosed many years ago with this Cardiomyopathy. i had always believed that it was normal to have to bend over and use my arms and hands to rest on my knees and gasping for air and feeling like my heart was going to fly out of my chest. I am on many meds but i still feel the same and i can tell I'm going down hill fast. I have 2 boys that i love dearly and want only the best for them and a new wife that i love with all my heart but i feel as if my life is draining from my body and feel like theirs very little time left for me, its ok i have had a great life and i wouldn't change a thing but i hate the thought of putting my loved ones through the pain because of my death. I guess it cant be avoided but i just hope god sees fit to let the loss of me not way so hard on them and just try to move on and remember the good times we shared while i was here. Just want timmy (JR) and Travis know how dearly i love you both,and to my wife, i feel so LUCKY to have you in my life and will miss you dearly, (I'm a lucky, lucky man.(THANKS GOD)
Tim Dunn, Shepherdsville, Kentucky, USA, March 30, 2011

• I am a 47 yr old female diagnosed with cardiomyopathy after second child 16 years ago. Diagnosed with irregular heartbeat during first pregnancy, progressed into cardiomyopathy. EF was 28 at one point. For past 9 years heart was great, almost back to normal. Probably caused by anorexia, then two pregnancies - too much for heart to handle. All has been great until white blood cell count came in too low. Not sure what that is about. Cardiomyopathy can't be cured but it can be maintained! kfibkins@yahoo.com feel free to give my email to others.
KF, East Moriches, New York, USA, March 4, 2011

• I totally understand that this is not an "ask the doc" type forum, just seemed odd that more posters do not respond to what others have said... that was the point I was trying to make :) My Cardio is very happy my EF is up to 50 and he actually referred to it as "having" a cardiomyopathy...my heart size is also down to a normal 5.6 I know I should be incredibly relieved and thankful, but I am always doubtful about things coming crashing back down....
Sharyn, Milford, Connecticut, USA, February 26, 2011

• Sharyn -- First of all, the fact that your EF is up to 50 is great news. As for your questions, these Forums are not "ask the doctor" Q&A's, but places where patients can share their experiences, information, etc. From time-to-time a Forum editor or moderator may chime in with a specific piece of information or reference to a study but, as we state in several places, nothing here should be viewed as a substitute for medical advice from a healthcare professional. That being said, hopefully some readers will help you out here with their stories. By the way, what has your cardiologist said about your increased EF?
Angioplasty.Org Staff, Angioplasty.Org, February 25, 2011

• Why am I not seeing any responses to these messages? It seems odd to me and I am wondering if I am "missing" something here? I was diagnosed in 2008 with DCM and an EF of 20.... on all the regular drugs since then but have stopped digoxin and lasix over a year ago because my EF is up to 50 by MUGA Scan...I want to know what are the chances that my EF will remain good and not do a back slide? Can it remain stable for the rest of a normal life span?
Sharyn, Milford, Connecticut, USA, February 25, 2011

• Hi, I am 45 and have suffered from Atrial Fibrillation for a long time. I have just been diagnosed with Cardiomyopathy and have to have a ICD. I have two children and am scared. I have read that other moms are in the same situation. Please email me and maybe we can help each other. Very scared and not sure how to function knowing the mortality rate and how to help my children and husband. [Editor's note: we don't post patients' email addresses in order to protect their privacy. However, replies to this post will be put up and the poster will be notified.]
Michelle, Miramar Beach, Florida, USA, February 14, 2011

• Back to Cardiologist 2 weeks ago. In spite of feeling really good my echo showed only an increase of my EF of 10, was 10 is now 20. He recommended a biventricular pacemaker with automatic implanted cardioverter defibrillator. Bummed out but considering and still feeling fine, (if puzzled).
seaboy, Glastonbury, Connecticut, USA, November 7, 2010

• Danny G -- We try to keep communications between users of these Forums as public as possible -- only because information exchanged may be helpful to others. We also don't post email addresses to protect users from Spambots that collect these off web pages. However, if Bill K or anyone wishes to communicate privately with you, they can post here, and we'll relay the request privately -- as we have done to Bill K.
Angioplasty.Org Staff, Angioplasty.Org, October 28, 2010

Bill K from Ohio -- how can someone email you? I am exactly what you described. I am looking for emails from anyone who has lived 10 years with dilated cardiomyopathy
Danny G, Las Vegas, Nevada, USA, October 28, 2010

• I am a 53 year old woman who was diagnosed with idiopathic Cardiomyopathy in 2004. My EF was 15% for 9 months after that, I was scared that it would never go back up! I felt okay, tired easily but was able to get out and around. Hated being on coumadin! Against my cardiologist's advice, I did start CoQ 10, and after a few trials of on it, off it, I DO feel better on it. I stopped work for almost a year, then went back part time as my EF rose SLOOOOWLY. At 6 years post diagnosis I am back to work full time (took me 1.5 years to do that), my EF is 48%. I don't do anything really exertional, I can do light gardening, occasional lifting, cooking, most housework,shopping and horseback riding, etc. I still drink wine occasionally, but do restrict how much and how frequently. I take 100 mgs of Toprol XL 2X a day, and 10 mgs of lisinopril 2X a day. I like the long acting Toprol/metoprolol (XL) much better. When I get a cold my heart can get a little funky, I hear cardiac muscle doesn't like histamines! I use a neti pot and it seems to really help to prevent colds and lessen their symptoms if you do get one. I also take anti-oxidants and vitamin D3 and get flu vaccines.Good nutrition helps.
Nuthatch, Albany, New York, USA, October 13, 2010

• I have a friend 36 yrs of age that tells me that his heart is only working at 15% capacity. They say he is a deadman walking. I guess it's congestive heart failure. I am scared for him, but would like to understand more. What is the death rate with this prognosis. He cannot seem to find anyone that will help him and they send him away with a survival timeline of 6 months to a year. Is there anything that can be done to regain what he's lost? Really worried, he is my best friend. Please Help.
Steve Stanton, Las Vegas, Nevada, USA, October 7, 2010

• I'm 69, diagnosed with CM 70 days ago during ER and hospital admission. Arteries good with exception of partial blockage of Ramus (stent inserted). Short of breath, couldn't lie on back, sick "cardiac" cough, depression, panic etc. EF of 10% at the time. Cardiologist initially put me on Carvedilol, lasix, spironolactone, aspirin, simvastatin and this week, added diovan. Carvedilol started at 6.25 twice a day, now up to 25mg twice a day. Carvedilol knocked me down pretty good in the beginning but I guess I adapted to it and no adverse effects now. Feeling GREAT now ! Energy almost back up to "normal". Likely due for echo soon and will be interested in EF. If I felt a 1.5 of 10 at the outset, I'm a 9.0 now. Surprised and pleased.
Seaboy, Glastonbury, Connecticut, USA, October 7, 2010

• I am 46 and had an EF of 10% at 44 years old. Responded to medications and had EF of 51% by Muga scan. Now, 2.5 years later and still on meds, my EF is 34%. I am pretty scared and worried. Anyone else that can comment on this? Thanks. My cardiologist wants me to get a CRT. I wonder why I got worse, will I get better without CRT. My left bundle branch block is also back. Thank god for Coreg or I would be dead already, I take 100 milligrams daily again, was only taking about 25 mgs a day and wonder if that's why I got worse. Any thoughts?
Barb, Shavertown, Pennsylvania, USA, October 2, 2010

• I am 34yrs women living with a dilated cardiomyopathy at first said to be idiopathic until further testing that shows my LVBB had not developed so the electrical blockage was the beginning of a domino effect leading to end stage heart failure. I am on the highest dosages of all my meds 2yrs. I have not shown any change -- my energy levels vary I am tired and feel weak most of the time. I have problems with my legs terrible bruising and burst veins if I stand for any length of time. I have 4 children and am having all of them tested I look for any warnings of heart related symptoms because until the doc asked me a list of questions I had no clue that it wasn't normal to feel as I always have. I was a very athletic person: swimming was my sport, basketball I excelled at most of the sports I played but I had to breathe differently than everyone. I had many scary moments as a child even to this day but breathing exercises are a must if you are like me and lose your breath walking & talking. I am so depressed angry just an emotional nightmare I know my body very well and I am feeling myself worsen. I wish I could stop feeling like this I am scared for my loved ones. How can I help them be ok???
monikaAK49, Leather-N-Lacenestika.org, Kenai, Alaska, September 25, 2010

• I checked with my cardiologist regarding CoQ10. He said there is no scientific evidence to support that it helps with the DCM and therefore does no suggest that his patients take it. However, he said that some of his patients take it and report feeling better. He said there is no evidence that it does any harm and if the patient believes it is helping he does not see any reason it should not be taken. As I said before you should always check with your personal MD before taking any supplements. Also had a good report from my doc!!! The meds appear to be working and EF is now between 30-40%. He says my target is 50% so hoping the progress continues. Much less edema and a bit more energy now. Yahoo!!
bayougal, Texas, USA, August 16, 2010

• To everyone wondering why they have this. It is possible that it is just a genetic thing we have and they will never be able to give us an exact answer as to why we got this condition. This is not what we want to hear. Most of us want a cause and a fix. I know I did when I got the diagnosis. With this condition we hope to stabilize it. The damage already caused will not resolve since it is the heart muscle itself that is affected. But as I said in another post, 80% of us will respond and stabilize on meds. That is very good odds in the medical world.
bayougal, Texas, USA, August 3, 2010

To Sandy 12 -- As a nurse who works in research, I would advise you to always check with your MD before adding any over the counter supplements. Although they are labeled as "all natural", etc, some can have significant interactions with RX meds. Years ago I had a very bad reaction to a natural OTC diet aid that everyone else in my office was taking and raving about. I did not know that it was the "natural" version of ephedrine and should not take it if you are prone to having a low blood sugar. While this may not be the case with the ones you are taking, it is always a good idea to have the MD check OTC PDR before you take them. Good luck.
bayougal, Texas, USA, August 3, 2010

• Has anyone with Dialated Cardiomyopethy also been diagnosed with Multiple Sclerosis on here? If so email me at walshfarm@hotmail.com please I need your help!
Michelle Walsh, MS Village Canada, Beechy, Sask, CANADA, August 3, 2010

• I am a 53 year old female who has been diagnosed with DCM in the past month after going to the MD for swelling in my feet. As no cause was identified, we are treating with Diavan, Coreg, Lasix, and Aldactone. EF was <25%. As my cardiologist explained, 80% of patients will improve on meds, 10% will remain unchanged, and 10% will worsen. I am hoping to be in the 80% group. Good luck to us all.
bayougal, Texas, USA, August 2, 2010

• i am 54 yr female with idiopathic cardiomyopathy and i have asked for a prognosis only once. they didn't know why i have this and they don't know for how long. my meds are lisinopril and carvedilol. also have had thyroid problems for 30 years. it's scary and i'm grateful for meds as I can now walk and talk but i don't know what else is going to happen.
kkelley239, Florida, USA, July 24, 2010

• I am a 53 old white male diagnosed with idiopathic dilated cardiomyopathy in March 2010. EF was 22%. I am on all the regular meds with no signs of improvement after 2 months and another eco. 6 days ago I decided to add 100mg of ubiquinone (co q10) 1000mg l-carnitine 2 times per day. I have not been back to my cardiologist yet. That will be next week and I will probably get chewed out, but I can tell you that I feel so much more energetic after starting the co q10 and l-carnitine that I don't care. I will continue taking even if he tells me not to. Good luck to all.
sandy12, Mississippi, USA, May 26, 2010

• I'm 33 and was recently diagnosed with DCM It was found during a routine echocardiogram which showed an EJ of 40% and a dilated left ventricle. I was put on Benicar for bp. Six month later my EJ improved to 50%. I work out rigorously 5 times a week and never felt symptoms. I am confused why I would have this. I guess it could be worse. Cardiologist said it could be from working out. Confused by that statement. He said I don't have to worry about my myocardium being stretched or thinned. Still confused by this. Help
Carbone1, Lakewood, Ohio, USA, May 18, 2010

• Just a few days ago I found out I have a dilated left ventricle with an EF slightly less 40%. I was told it could have been caused by a virus or ischemic event(s). I'm still going through a Rule Out causes process and return to my Cardiologist in a few days. Are there any specific questions I should ask my Cardiologist? I'm a 42 year old male in great shape and no significant history of medical issues. I ran a marathon a few years back, swim team for 7 years and I've never had high BP and my lab work within limits. I'm really confused but more so in denial. Thanks for any suggestions you can give. Markanthonyhamm@aol.com
Mark Anthony Hamm, Children's Healthcare of Atlanta, Atlanta, Georgia, May 8, 2010

• I am only 13 yrs old, and am about to have open heart surgery. I have aortic valve regurgitation which has kinda caused dilated cardiomyopathy. at least i think that's how it works its really confusing. I have already had 2 surgeries to treat ventricular septal defect. can someone tell me what my chances are?? the doctor hasn't said much and I'm a bit scared to ask. please i wanna know. thanx :)
Jemma, Australia, March 26, 2010

• I was 26 when I was diagnosed with chf and primary dilated cardiomyopathy, in march of 2006. My ef was 10%. I've been on every medication under the sun for this. They can't up it or change anything because then my blood pressure drops down to heart failure rates. I have the icd put in in jan of 2008 when my ef dropped from 40% to 25-30% in 6 months. I've been through hell and back with this. But I have a will to live and fight this for my son.
Megan Lech, Jeromesville, Ohio, March 1, 2010

• Diagnosed on December 1st 2008 with EF of 15. Since that time have followed advice of my cardiologist regarding diet and exercise. Take carvedilol, lisinopril and digoxin. Supplements of CoQ10, Fish Oil, and low dose aspirin daily. Have progressed from thought of needing a transplant to normal. Just have to keep watch of what I eat and exercise. Having a positive outlook and saying a few helps out a lot. Keep positive and watch the sodium intake..... Have been able to shock both my doctors with the progress that I have made. Just don't give up. Miracles can happen! d(^-^)b
Jerry Kasch, Abreon Group, Indianapolis, Indiana, USA, January 28, 2010

• I was diagnosed with dilated cardiomyopathy 2 months ago. I am 47 and a mother of 4. I am on lisinopril 5mg once a day, coreg 6.25 twice a day, aspirin, and meds for hypothyroidism, which I've had since I was 11. Not sure why exactly I got this, but, suspect due to my thyroid disease and being on too much of one of those meds that was added 1.5 years ago. I think it damaged my heart. But, I also had flu really bad in spring for several weeks, and LOTS OF STRESS FOR 6 MONTHS PRIOR. Right now I suffer with A LOT of back pain. It seems to get better if I take more Coreg and lay down. Back pain and left arm pain were my presenting symptoms. My husband is an internist and sats that with the treatment with ace inhibitors & beta blockers life expectancy is way longer than previously. My cardiologist said to reduce my cholesterol or I could have some problems in 10 - 15 years, so I take that as a POSITIVE! He said I have no activity restrictions so I am going to exercise A LOT. I think thinking positive, praying, and giving to others is important. Live like you have only a little time, but, expect to live a long time! Get rid of resentments & love everybody!
Laura, Sioux Falls, South Dakota, USA, December 20, 2009

• My dad was diagnosed at 50 years old in 2003 with DCM and was a triathlete before this. He took it easy for a few years and just competed in his first triathlon since the diagnosis last month (Oct 09). He still trains but feels a bit tired after lots of training. I tell him it's his age!... he's now 56. He has his echo in March 2010 and I hope that his heart hasn't enlarged since his last check-up over a year ago. It's important to take each day as it comes and not let it be the main focus in your life. It will be interesting to see what his EF is.
Michelle, Melbourne, Australia, November 26, 2009

• To Lorena: I read your story and I am surprised that we share so much. I too have RA and was treated with ENBREL. My life has not been the same since. First was atrial fib, then endometrial precancer, congestive heart failure, atrial fib, lymphoma, then cardiogenic shock due to adriamycin. I have been dx with dilated cardiomyopathy due to the chemo. I had chemo from 10/08-3/09. Adriamycin discontinued after my EF went from 55% to 40% after 3 round. I went into cardiogenic shock the DAY AFTER I got my good PET scan results and had to have a interaortic balloon pump put in and then had to have a pacemaker/defib put in later that week. I also had pericardial effusion 2 weeks later when one of the wires poked through my heart muscle. I would love to discuss further with you.
Ingrid Kirschbaum, Island Lake, Illinois, USA, November 15, 2009

• I'm a 40 y/o female and I was dx with Dilated Cardiomyopathy and CHF last month. They said it was probably caused by a virus. I have 2 daughters 11 and 8 and it takes all I have to take care of them. My EF was 15% when I was dx. This is all new to me and I am very scared. I'm on lots of meds and I do what the dr's say but I still feel tired all the time. I'm just trying to get some facts about this but every website I pull up is very negative on the prognosis. Does anyone have any encouraging websites? And I am having trouble finding information on a low sodium diet.
Kandi Mcdonald, Texarkana, Texas, USA, November 2, 2009

• I was diagnosed last March 2009 and my EF was 15%. I started meds and at some point EF was 30% in July. Last week was back to 15%. I am not feeling well but doctors said just to wait and keep taking coreq 12.5 twice a day because when we tried 18 was too much for me. Please give me some advice, hope, information. I am 40 yrs old recently married and planting to become a father next year. I feel strong but sad...
S, Brooklyn, New York, USA, October 28, 2009

• I am an RN who's husband was recently dx'd with dilated cardiomyopathy. He has been on CoQ10 since 1990 for dental issues. Now that he is 63 and just rec'd this dx, he has been depressed but . . .I've told him that he has been walking 4 miles a day and asked him how he felt. He said he feels great so I told him to quit worrying about it. That is with an EF of 16. ALL of his MDs have commented on the fact that he has been taking 100 mg 3 x a day of the CoQ10. He will continue on it. It is protective of the kidneys and useful for dialysis pts too. We are going to take it one day at a time and he will take his Coreg and Lasix as ordered. I am convinced of the positive benefit of CoEnzymeQ10 in the treatment of cardiomyopathy. He went from 16% to 20% in a week after diuresing with Lasix (2 gallons of fluid lost). Now we wait for the heart cath and further ECHOs. My personal opinion is that CoQ10 can't hurt and there's lots of evidence that it helps. I prefer the TwinLab brand from Swanson Vitamins as it was used in the original tests at Wilford Hall in San Antonio that I read initially.
Crystal Griffith RN CCS, Baker, Florida, USA, August 11, 2009

• Long term idiopathic dilated Dilated Cardiomyopathy survivor. Originally diagnosed in 1998 with EF of 25%. Second opinion diagnosis was 35%. I went to a CM specialist at the Cleveland Clinic who put me on a regimen of several drugs with the most prominent being a 100MG of Coreg/day. That's right, a 100MG which was pretty controversial in 1998. Fast forward to today. EF is 65% with normal heart size and wall thickness. No restrictions but still take BP medication and 50MG of Beta blockers per day.. I am a happy 60 year old with a very active life style. I thank God every day for having a great doctor and being one of the lucky ones.
Bill K, Cleveland, Ohio, USA, August 11, 2009

• my husband is 33yrs old.his dialated cardiomiopathy was diagnosed in 2001. an ICD is implanted but now his E.F is 18%.he ia on good medication but health is going down day by day.plz pray for him.
Khadija, Punjab, Pakistan, August 4, 2009

• Diagnosed with dcm in 2007 on lisinopri,bisopolorol,furesmide,statins and amlodipine, also have left bundle branch block and mild heart failure. Always tired, very short of breath and low at moment my ef is now 60%. Any tips on dealing with everyday life and trying to stay positive. I am 40 and my cardiologist says that 5 years prognosis is rubbish.
Joanna M., United Kingdom, June 18, 2009

• My father was dianosed with a form of viral cardiomyopathy 3 years ago and is not doing very well to date. he is going down hill very fast i think, if anyone could give me any advice on whats going to happend or how long he might have because he doesnt like to talk about it, anythin would be greatly appreciated!!!
Brittney, Hodgenville, Kentucky, USA, April 20, 2009

• Well let's see. I am a 31 year old female who was diagnosed with dilated cardiomyopathy after the birth of my 2nd child on August 31, 1999 right after I turned 22. I have been on strong doses of Coreg, Enalapril, Furosemide, Digitek and Sprironolactone since the very beginning. I found out that I have diabetes as well. First off let me say that having a strong mind is very important when receiving news like this. I am in my 9th year of the disease and I have to say I feel great. The beginning was a bit rough but once I got into the mind frame of "I have a disease, it doesn't have me", I started to feel better. You must not let it get you down and enjoy every day that you get to continue to live. When you allow this condition to get into your head, that is when you start to go down hill. So my advice to you all is to keep your head up, keep a positive attitude and a positive outlook and you will defy all of the odds. My EF when I was diagnosed was 21%. Now it is 48%. I have setbacks every now and then but I never let them get the best of me. I always say..."I may not feel good today but tomorrow will be better". I have to say that it always is.
Alicia W., patient, Madison, Georgia, USA., February 2, 2009

• I do not know what to do or think I am so confused. I am a firefighter & paramedic. During fire academy in 2000 I noticed when I would run or do our circuit drills my heart would feel sluggish, like it could not give me what I needed. ( I ignored it--we are worst patients-firefighters are healthy, right!!) Them a stress test for fire-medic-the cardiologist told me I needed a cardiac cath-I told him he was crazy. I was 34 y/o. Anyway I ignored many signs, symptoms. Well at 36 y/o on July 18 I went into respiratory arrest then cardiac arrest, woke in er on ventilator. #@ days later I was extubated and learned I have heart failure and cardiomyopathy(viral, probably). The nurse was so cold-told me the diagnosis as she walked out door backwards!! UCH tampa ICU, My ef is 40%. The md cardiology says this is forever--and will get worse--my primary says it will go away because I'm young!!I don't know what to believe no health ins, no job now,cant work as fire-medic at this time or never again So I ve been told--i get so out of breath, dizzy, passing out, exhausted. My bill is 150,000 now--what to do--Im scared--I don't want to die in 5 years I have children or a heart transplant!! I eat very little, my children have to stay with their dad because I cant afford to feed them!!!-DO YOU KNOW WHAT A HORRIBLE MOTHER I FEEL LIKE!! my email is taliduke@yahoo.com, please send info on these conditions--i feel I'm not getting far. I also have pharyngeal spasm, and pneumonia--my belly swells then my hands and feet--very uncomfortable. I can gain up to 5-7 lbs in ONE day!!! Thank G-d I'm alive.
TALI DUKE, SCARED!!!, TAMPA, FLORIDA, USA, September 8, 2008

• I've have Dilated Cardiomyopathy for over 15 years and doing very well. I also had an ICD implanted 15 years ago. To answer your question ... if you want to be the odds of the 70%-75% death rate within the first 5 years, you MUST get acutely involved with your own health! There are many supplements you can take to help increase your EF rate , your energy level along with decreasing any VF or abnormal heart rhythms. For starters do a google search for: Hawthorn Berry, Taurine, CoQ10, antioxidants and Germanium, Magnesium. I have no financial interest in the following news letters and highly recommend them: www.natutalnews.com, www.hsibaltimore.com and www.douglassreport.com. If you have questions about IOCD's, go to my web site at: www.DefibrillatorAnswers.com.
Wm. Grayson, Royal Oak, Michigan, USA, July 12, 2008

• WHAT DOES IT MEAN EJECTION FRACTION 82%
SHERRIE, OCKLAWAHA, FLORIDA.USA, July 10, 2008

• I am 46 year old male and have been diagnosed with dilated cardiomyopathy due to inherited familial reasons. My EF was 37% on diagnosis and I was not able to be prescribed beta blockers due to having asthma, so I was only prescribed ACE inhibitors. But after a year of being on ACE inhibitors, my EF is now 50% What are the prospects for my life span?
Steve P., Sydney, Australia, July 8, 2008

• I'm very happy to have stumbled across this site and hope it's still active. I'm 47 yrs old I've been struggling through the medical system for more than 2 yrs, at which time I started becoming short of breath and unable to complete my regular workout. The shortness of breath continued to worsen and eventually I was referred to a cardiologist who dismissed an EF of 43% and decided I had some other cardiac abnormality. After not being able to prove this abnormality he basically sent me back to my family doc who luckily is terrific and I now have another cardiologist. I'm on lasix and coversyl. I also have rheumatoid arthritis so between that and the continuing fatigue and shortness of breath I've not been able to work in two years. I have a (l) ventricular dilated cardiomyopathy. We are speculating that it could be a late effect of a cancer chemo drug (adriamycin) I took in 1995. Is anyone else experiencing cardiomyopathy from this cause.
Lorena McManus, Winnipeg, Manitoba, Canada, January 11, 2008

• i am 23 years old and have been diagnosed with dilated cardiomyopathy due to viral illness and also have an ICD, i hope everyone can recover on medication and i wish everyone the best of luck, i have found a friendly community at www.cardiomyopathy.org. There is a message board for people and friends with this problem. my question is, my EF is 22 and appeared to be 15 on the last echo before i left, the 15 avg. was them verbally guessing the estimate while doing the echo.
Ryan, England, United Kingdom, December 23, 2007

• HEllo: I have a diagnosis of dilated cardiomyopathy with EF of 20%. Doctor saying I need implanted ICD. Not sure I like the idea. What is the operation like and does it mean my life will be cut shorter? Do others think it would be a good thing? Thanks.
Lynn M., Florida, USA, October 25, 2007

• my son was diagnosed with dilated cardiomyopathy in 2001. He is also on the highest dose of coreg, lanoxin, zestril, lasix, spiralactone, and a host of other medications. His EF now is 50%. He has since been diagnosed with diabetes and plantar fasciitis (as his feet hurt all the time). My question is does heart failure get better and then all of a sudden get worse? Will he ever be able to come off the medications? How long can you live with this disease? I was told he will need a new heart by the time he is 40 and he is 32 now and is this true? Please email me and let me know some of you that have experienced this. My son's father died of the same thing when his father was 25 years old.
Linda D., Georgia, USA, October 7, 2007

• I am 55 years old and was diagnosed with Idiopathic Dilated Cardiomyopathy in May of this year. I am currently on Carvedilol, Perindopril, Lasix, Amiodarone and Warfarin. I entered hospital with atrial fibrillation and an EF of 10-15%. After medication I am up to 25-30%My shortness of breath has abated but I have no energy and tired with the least exertion. I have read so many Mortality stats I don't know which to believe. My doctor says he just doesn't know how it will play out.
John F., Nova Scotia, Canada, July 24, 2007

• I am a 53 year old professional. dxed 1 year ago during insurance PE, EF= 19%. Was in bigimini. Had ICD put in, on correg and altace, Lot better, EF about 60%. Have beem back at work full time for 11 months. Doing well, but boy, at end of day I am tired. My wife is told I am doing well and doesn't understand, if I'm doing so well, why I don't get up and do some things in the yard like I used to. No win deal.
R.G., April 24, 2006

• Hello! I have a 3 1/2 year old daughter who was diagnosed with Dilated Cardiomyopathy in January 2006. She has her tonsils taken out on Dec 29/05 and the doctor discovered an irregular heartbeat. A stress test was done and it was discovered her septum has a major defect causing loss of blood flow. Her ejection factor is somewhere between 28-33. Her doctors say this is unusual and one doctor said he has never seen this before. Do any of you have information on young children having this disease? What is the expected life for a child with this? She is now on medication for her heart and blood pressure. She is not showing any symptoms. Any information or story you can provide would be helpful. Thanks!
Charlene Frizzell, Moncton, New Brunswick, Canada, February 22, 2006

• My mother died at age 54 of cardiomyopathy. I am 53 and was diagnosed 8 months ago. I am in early stages. I am on Coreg and my EF has increased about 5 pts. Does anyone else have shortness of breath on this drug? Do you have double vision? I have other neurological problems (familial) that may have caused my cardiomyopathy. This problem runs in my mother's family. I am a college professor and I had to quit work this semester because of my fatigue and depression. I also have fibromyalgia.
Jan, Muncie, IN, October 23, 2005

• I was diagnosed in April 2004 with Idiopathic Dilated Cardiomyopathy with an EF of 19%. I was treated by my local cardiologist as well as the clinic at St. Vincents Hospital heart/lung unit (Victor Chang Unit). I was prescribed Carvedilol, Tritace, Lasix, Aldactone, Asprin, Digoxin, and Progout(to control the Uric Acid) for the condition. My ejection fraction improved from 19% to 67% over the period April to March 2005, this has reduced to 50% since May 2005 and remains stable. I have subsequently returned to work. I am 51 years of age. The learned medical professionals believe I had a predisposition to the disease given my father(deceased 1963) and both siblings suffer from a form of the disease, the trigger in my case is unknown. A rehabilitation program run by the local hospital was of enormous benefit in raising fitness levels (safely) and adjusting to life with a poorly functioning enlarged heart. As for the stats on death rates - they bear no relation to how you deal with your illness. AVOID BECOMING ONE! Take control of managing your health, seek to do the best you can in those things you can control, ie, diet, (safe) exercise, positive activities,the advice you receive from all your health professionals - and let the statistics take care of themselves
P. J. Travers, Patient, Sydney, Australia, October 18, 2005

• Forget "70% dead in 5 years"--For a technical discussion of prognosis and survival of people diagnosed with various kinds of cardiomyopathies, see: UNDERLYING CAUSES AND LONG-TERM SURVIVAL IN PATIENTS WITH INITIALLY UNEXPLAINED CARDIOMYOPATHY. Felker GM, Thompson RT, et.al. New England Journal of Medicine:2000. Vol. 332 (15) pages 1077-1084. Figure 1 on page 1081 uses survival curves to graphically display relative survival rates of different diagnoses. These analyses were done using patient data from 1982-1997, so these patients were not getting some of the very advanced therapies now available. Idiopathic cardiomyopathy, which includes viral cardiomyopathies, has a curve that levels out at about ten years with about 57% surviving more than 13-14 years--the cut-off point for this particular dataset. Please see a qualified specialist who can help you live with this disease as comfortably as possible. As demonstrated by people posting to this chat, it is possible to improve your functional status and overall health with good medical care and good self-care.
SEC, Bandon, Oregon, October 02, 2005

• I was diagnosed with dilated cardiomyopathy in Feb/2005 with an EF of 15%. I am a 46-year-old female. The doctors believe this condition is a result of Novantrone, a chemotherapy drug I took from 08/2002 - 04/2004 to try and slow down the progression of my Multiple Sclerosis. I started on some medications: Lisinopril, Digoxin, Coreg, and Lasix. I haved limited mobility, but try to exercise and watch my diet. Yesterday another echo showed I still have an EF of 15%. My neurologist believes over time my EF should improve. My cardiologist believes if it was going to improve from being off the chemo drug, it would have already improved. The cardologist is recommending that I get an ICD. The prognosis for this condition are not very encouraging ( mortality rate - 5 years?). Are these numbers reliable when you consider my age? I have three children, ages 12, 9 and 7. Are there other options available? Is there more things I should be doing? I want to do everything possible to see my kids grown.
Cheri Wolfe, Birmingham, Alabama, September 21, 2005

• I am 54 year woman diagnosed 11/2 years ago with cardiomophathy. My ejection factor was 20% at diagnosis and has improved to 27% in the last year and a half. I am taking co-reg, digitek, & altace. What is my prognosis? I have read so many conflicting reports that I am confused. I just want an honest report as to life expectency.
Sharon Bonnette, Navarre, FL, United States, September 17, 2005

• I currently celebrated my 43 birthday and have been diagnosed with Congestive Heart Failure and Idiopathic Dilated Cardiomyopathy in November 2002 with an enjection fraction of 15%. The Doctors were wonderful, they didn't know what the causes were, they gave me a 25% chance of getting better or worse and a 50% chance of staying the same. Six Months of monthly doctors appointments, and a second Echocardiogram I was up to 35% on the enjection fraction, Last December 2004 I had another test completed it was at 37%. I am on four drugs, Digoxin, Lasik, Metropol, Lotensin. They say it may have been a virus, they also say that I have to be patient and continue to exercise, sleep eat right and take the drugs. I have added vitamins (one a day) and CoQ10. As to longevity, I try not to think about it, it's depressing. But am going to believe that as long as the symptoms don't manafest themselves it's another day and that's a good ting
Melissa Strandberg, Patient, Highlands Ranch, Colorado, September 09, 2005

• I am 56 yr old female dx with IDC in March 2005 poss cause adriamycin for tx of Hodgkins.E fract 20-25% taking lasix,altace,synthroid,and toprol-xl,watching NA intake and fluid restriction.in 5 months E fract improved to 30-45%.Due to b/p meds tired and very low stamina.I have been trying to increase by walking daily. Was scheduled for defib/pacemaker but due to improvement was put on hold.Problem:phy wants me to return to work full time as nurse in large hosp. I am very scared I will die because of the phy work and strain. I was having great difficulty trying to do my job. I feel alot better and am breathing so much better. Now that I am up to 30-45% what are my chances of having sudden death due to arrythemias. I am considered class 3 almost a 2. Help?
Betty Martin, Smithville,Tn, August 10, 2005

• I have a very dear friend that has just been diagnosed with viral cardiomopathy he is 54 years old. was feeling well until about 3 months ago. his ef today was 25. I work in the medical field but his own doctor has not been honest with him about what he has. I have seen his reports because I work for his internist, who happens to be very much into natural medicine. His cardiologist has not told him the consequences of his disease
Pearl Stafford, Naples, Florida, January 12, 2005

• I was 38 when diagnosed with Dilated Cardiomyopathy. I am now 45 female. I had an EF of about 33%. I am now at EF 55%. I was told by cardiologist that he had a pt that was good for 10 yrs & then the condition came back. He said 33% get better 33% get worse 33% stay the same. By the way I outlived my cardiologist. He died of a sudden heart attack. I take lopressor 50mg/2x day.cozaar, kdur, lanoxin,lasix, & ambien 5mg at nite.they think virus or childbirth could have brought it on. Never any clear answers. Its a wait & see condition. I was told yrs ago if my condition didn't improve heart trans.or possible pacemaker.
Angela, Long Island, New York, 09 Dec 2003

• I was just diagnosed with dilated cardiomyopathy with an EF of 40%. I turned 43 yesterday and am the mother of a 3 year old. I was told today from a doctor friend that his cardiomopathy patient went from a EF of 20% and being non-mobile to 35%just from taking CoQ10. He said the dose can vary from 30-100mg per day. His patient feels good now. I am going to ask my doctor about it this week, because he believes in alternative treatments.
Lori, Chicago, Illinois, USA, 20 Jan 2002

• My 36-year-old brother has chf and cardiomyopathy. He is also on coreg and a host of other medications. He really has problems with the fluids. He is now in atrial fib. They tried to do a carioversion on him yesterday with no success. They plan to take him back again next mondaY to try it again. Is there anyone out there who has gone through this and has found a successful method to keeping off the fluids and getting back into sinus rhythm? Please write. Some people have been telling us to try the co-q10. They say it works wonders? Can anyone tell us about this from personal experience? we are desperate and need help. Thanks
Sammi, Denver, Colorado, USA, February 9, 2000
 
• I also have dilated cardiomyopathy, and a number of other diseases. I am recommending that you visit and join our family of CHFer's at Jon's Place. Jon has over 200 pages with explanations of symptoms, helpful information, and a forum that will help you get through this very tough disease. Most of us get depressed, and are always trying to figure the questions that you are asking. Even the doctors don't always know just how long we may live. But keep a positive attitude Charles. Check it out at http://www.geocities.com/Heartland/Hills/2571/jonsplace.htm. Tell em Doug sent ya! Good luck.
Doug Knuth, Michigan, USA, March 27, 1999

• Hello, I am also a heart patient, 36 years old with similar problems. For a more detailed look at my condition go to www.healthyheartmarket.com. I am on a medication called Coreg that seems to be improving my condition. My EF 3 years ago was 10, now it is up to 27. My doctors believe that with the introduction of Coreg, and taking good care of myself, i.e. exercise and low sodium diet (see my website) I can beat the statistics. These mortality statistics seem to be changing day by day. Feel free to contact me for more info and other resources.
Pete E., Healthy Heart Market, Minnesota, USA, December 13, 1998

• What is the prognosis for a patient with Idiopathic Dilated Cardiomyopathy?
THE PATIENT: 48 year old white male, 6' tall, weighs 195lbs and lives in Dallas, Texas
THE MEDICAL HISTORY/CONDITION: Idiopathic Dilated Cardiomyopathy (Dr. suspects viral caused) which was originally diagnosed in Feb 95 with 40% Ejection Fraction. Was also diagnosed as having Crohn's Disease at same time. Diagnosis made a Mayo Clinic in Rochester, MN. Prescribed 10 mg Lisinopril and a Beta Blocker (I have forgotten dosage).
June 95: Echocardiogram shows EJ at 55%. Local Doctor takes me off of all medicines.
October 95: Sudden Death episode in restaurant. Was dead 15-20 minutes with CPR performed by nurses who were also in restaurant. Before leaving hospital an ICD was implanted and testing showed an EF of 35%. Prescribed 10mg of Zestril (Lisinopril).
June 96: EF 45%
Sept. 96: Sudden Death aborted by ICD
Nov 96: Holter monitor reports 1,000+ PVC's and 3 brief episodes of V-Tach.
March 97: Atrial Fibrillation for 60+ hours leading into Ventricular Fibrillation aborted by ICD.
January 98: Scheduled stress echo test.
THE QUESTIONS: While I am typically a very positive person, I find myself in need of information which will allow me the opportunity to carefully weigh all of the relevant information about my illness. These questions, therefore, purposely exclude the possibilities of a heart transplant or other new surgery techniques that seem to offer a greater chance of extending life.
(1) Fairly extensive Internet and library research in Dilated Cardiomyopathy reveals studies that indicate that 70-75%+ die within 5 years. What are the death rates for the next five years and ten years?
(2) My ICD fairly well rules out death by Cardiac Arrest/Ventricular Fibrillation/Sudden Death. Does this mean that if I fall into the statistical percentage of those who die that it will be as a result of heart failure?
(3) With the understanding that heart failure can be rather slow or swift in its failing process, what are the typical problems associated with congestive heart failure (organ failure, etc…)?
Charles Taylor, patient, Dallas, Texas, USA, December 17, 1997

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