About Cardiomyopathy

I am 59 yr old male with a 25 yr history of heart problems (3-MI’s, 3-angioplasties, several stents). EF has been fairly consistent 35-45%, with very little impact on activity other than moderate “huffin’ and puffin’. In the last 15 months or so, EF dropped dramatically to ~20%, with no indication of why. Digoxin raised the EF a little. I had a defibrilator installed in Oct. It paces regularly, but hasn’t “fired” (fortunately!). Meds are the standards: Lisinopril, Coreg, Furucimide, Imdur (with attendant migraines), digoxin, Lipitor & Zetia. I’m anxious to get another Echo in early 2009 to see if the rapid rate of decline in EF continues. It doesn’t take a rocket scientist see where I’m headed if it is. Seattle HF Model gives an optomistic 8+ years, but doesn’t take the rapid rate of decline into consideration. Impact is quite severe with very low endurance and extreme “huffin’ and puffin’”
with the slightest activity. The only change in conjunction with the decline was an accidental prescription for Crestor at twice the max. allowed amt (80 mg). I was basically overdosing every day for over a year. Although controversial, I know, I suspect Statin induced cardiomyopathy caused my problem … but can’t be proved. I just
discovered this group and am looking forward to learning more.

I guess I have too much time on my hands. Maybe I am one of those who’s way too fixated on my heart failure. It just sounds so horrible to say those two words: “heart failure.” ugh. I’m only 47 years old, for crying out loud! I was an “A” level racquetball player! I just finally got my black belt in Shotokan karate! I
have kids to grow, grandchildren to play with! I’ve lived a pretty healthy, clean life. Still married to the same girl after 26 years. Haven’t smoked for 25 years. Why me??? This illness SUCKS! I’m tired all the freaking time yet I sleep like CRAP, tethered to a CPAP like a fish on a hook, and then I have to get up and take pills that make me MORE tired, I lose my breath when I climb more than about 5 stairs, my brain is in an almost constant fog of some kind, probably starved for oxygen, I get these lousy palpitations way too often, and the lump that sticks out on my chest from the ICD is irritating, ugly, and even embarrassing. Okay,
okay - I’ll stop there. Sound familiar?

Well, because of this group, at least know I’m not alone. Because of my family, I have a reason to live. Because of my faith, I know I should not fear death.  Because of WHERE I am blessed to live, I have medical care that is catching up to this illness.

Said all that to get to my point - if you’re depressed with your heart failure, and by what all the world seems to be saying about how heart failure is going to make you die within five years, consider doing what I did this morning - check out the Seattle Heart Failure Life Expectancy Model. It’s online - you plug in all your data, and voila! -it provides you with an estimated life expectancy, based on CURRENT information and treatment variables.

This kind of site is not for everyone. As a matter of fact, unless you click the block that says you’re a health care provider, it won’t even let you type in the data. But I decided to be a health care provider today, and after I clicked that block, then clicked all the buttons that apply to me, it says I have a life expectancy of over 20 years!!! I couldn’t find a guarantee anywhere on the site, …but that made my day. I know everyone won’t have a number over 20 years, but I’ll bet most of you will get a result that’s higher than you expected,
especially if you’re taking all the right meds.

In any case, I want to wish all of you a very Merry Christmas, and I hope you make the very best of every day you have to live on this earth. Steal an extra hug from someone you love today, and say what you need to say.

i was Diagnosed in February last year after getting palpitations from Christmas 2007 onwards, the week leading up to 16 February i was getting worse and found myself fighting for breath when i tried to sleep. i went to my doctors on the Friday with a rapid heartbeat of around 150bpm and he told me to go home and relax and gave me some beta blockers. that night i felt bloated and it was getting worse. on the Saturday i could not eat and
by the evening i thought that i should ring the emergency doctors, he suggested i get an ecg at the hospital. my wife and sister and daughter went to our local hospital and within ten minutes of getting there i was in the crash room. they tried to slow my heart down and after 2 shots of a drug and four hours of treatment they couldn’t slow my heart rate. next thing i know i was told that if they did not do anything i might die and that they needed to defibrillate my heart to get it in the correct rhythm, there was a risk though that they may
not be able to restart it. i cried, my family were told to wait outside and then it was done and all went well. two days later i was told after a echo that i had Dilated Cardiomyopathy and i had two weeks of treatment. first an MRI scan then a week later an Angiogram, then two days later i had electrical physiological studies to see if
they could start my VT off again. then two days later i had my St Jude ICD fitted and bingo i am now bionic. my EF at DX was 12% and by August this was back up to 60% with all the drug therapy and treatment but i was getting a lot of Atrial Flutter which set my ICD off and i had 3 Shocks from it. in December i had an ABlation and the three weeks that followed were a nightmare. now i feel great and at the moment i am very stable. sorry to have posted such a long post but being my first i thought i needed to let you all know what i am about.

I was diagnosed with cardiomyopathy in 1994 and have done reasonably well since. I’ve been able to continue most of my former activities taking care to maintain my diet, etc.
My ICD was implanted three years ago. I felt very secure knowing it was there to help me. At first I was concerned about what I might feel if the defibrillator fired. But as time went by I became even more comfortable with the idea that I had this wonderful device to help me. About a month ago however, the defibrillator fired when I was asleep. After I got to the ER, on my doctor’s instructions, the device continued to fire 23 times. I was given additional medication to help regulate my heart rhythm and released after three days. Follow up visits with my doctor and monitoring of the device have shown no further episodes of the device firing. My problem now is that now I find myself having a difficult time getting over the event. Although I consider myself a fairly rational person, I find that at times I’m afraid to lie down for fear that it will go off again and I find myself fearful of every little twitch I experience. My doctors tell me this is not unusual and I accept that
intellectually but sometimes I find myself worrying needlessly. Have any of you experienced these feelings and if so, how did you cope?

Thank you for any advice.

Looking for info from anyone that has had to have a lead (or two) replaced for their pacemaker. My 3 1/2 year old pacemaker/icd (Dec 2005)needs to be replaced. Last time it was replaced I was told that they would probably need to replace at least one of the leads the next time it was done. I was surprised that it only
lasted 3 1/2 years but was told due to the one lead they had to raise the threshold/voltage which shortened the battery life. The original leads are 15 years old (1994)and at the time it was placed in it was an experimental type with two leads to the attrium and one to the ventricle. When it was changed to a pm/icd they added a lead for the icd. So there is already 4 leads (one is capped) in the vein. They do not think they will be able to get another one in there. And to add to the fun the lead that was added for the icd is one of the medtronic fidellis leads that was on recall. Has anyone gone through a lead replacement and wish to share their experience?

Hi, i wanted to know if anybody has ciotting problem due to dcm .as my first symtomns of sickness i had severe pain in my neck which later was fouund to be a clot in my jugular vein known as thrombus too and that was caused due to thickening of my blood along with that i was diagnosed of dcm also but after some months of medication and due to jaundice it got normal and medications for that stopped which doctors told me before i have to take medication whole my life or else i will have more clotting till date its okay my question is that
can blood thickening cause dcm or dcm can cause blood thickening are they related to each other.

After reading an article this morning showing the positive effects of carvedilol on influencing cytokines (signaling molecules, or more precisely relative to our discussions- immunomodulating agents that contribute to cardio inflammation) I continued on, perusing information regarding cardio inflammation, specifically
the role cytokines, play in contributing to the pathology resulting in dilated cardiomyopathy, hypertrophic and other cardio conditions. I found that scientists researching the use of ubiquinol and ubiquinone, commonly known as CoQ10, also proposed positive claims as to the effect of that substance on cytokines, and as I looked further I began to read that the research scientists in the medical community are not in concert as to what approach, if any should be pursued concerning targeted therapies in lieu of cardio-inflammation and
subsequent heart failure (there is agreement that cytokines play a role).

As is perhaps necessary in all human endeavors, I believe, optimists and skeptics must find common ground in order for the whole group to advance. In that frame of mind I found the following article most useful in describing a palatable approach to this particular dilemma, and a means to move forward for those of us who are intent on agreeing to disagree concerning the management of our mutually frustrating disease (well at least I’m frustrated).

Woow I have much to share here. To begin with the more I’ve read on the subject of A-fib and the thyroid gland. I found out that what I was taking for my thyroid issues sent me into all of this. It started in early ’90s but I had forgot about it. To shorten story abit, present doc, and because of Wal-Mart’s $4. script price, I started taking the Levoxyl. We kept close eye on, but not close enough.

As stated before, I am so allergic to so much that back in, ‘99-2001′ and after getting a nuclear stress test, I ended up in hospital for ‘fast rhythm and a small blockage that they did the cat on. Still being fast, Doc at that time remembered about my allergies to most genetic drugs. This included “Synthroid” was the only one that worked for me. Any of the genetics’ of Synthroid, through me. All the others put me in atrial arrhythmia or flutter.

I had to go deep into the biological make up of each, Synthroid and Levothyroxin, Levoxyl, which are both a lesser generic for the Real Synthroid. This was done at a college close by. University of Mary Washington, and local community college’s libraries. There is a true difference. It’s in the ‘bi-chemicals’ certain companies put in
for lower cost. This is what and where I am. If even my doctor, looked it up. Then I showed her what I had. Her eyes got big. Yes I did my homework. One must be their own advocate, epically when it comes to our health.
I should have remembered this this time too. But not until last week or so, it hit me as I woke up. OMG! I stopped the Levoxyl, 225mcg. and for 4 days I began feeling so much better. My heart rate is now down below 90bpm. My bp is 100/70 which is normal for me. Now to shorten this even more, the thyroid gland can and does effect most every part of our bodies, including our mental status. I hope this share info just may help another.

My father had CM but a stroke is what took him at the age of 78 less than 2 years ago.  He had 4 children.  In the last 3 years, 3 of us have had heart surgeries.  We all have cardiomyopathy and then from their the dignosis are different.  One had quadruple bypass surgery.  The 2nd, has had numerous heart attacks and a valve replacement.  I  have CM, CHF, VTAC with a recent vfib (heart rate hit 315 bpm-aicd saved me).  We are all in different levels of physical health (height, weight, condition) yes within a 3 year period these things happened.

I used to love pot pies as well, how bout macaroni and cheese!  I found a low sodium mac and cheese, frozen, at Whole Foods.  It is sooo good, but very pricey.

I miss the convenience of convenience foods!

And I totally agree, foods can taste so salty.  I am amazed at that.  If I try something processed, I cannot taste the food itself - only the salt.  That lets me know I’m being good about my diet!  I can’t stand the taste of salty foods anymore.

I’ve had dilated cardiomyopathy with EF=.26 for 3 years now. Now something new. A couple months ago, my hemoglobin measured low(10.6). My GP ordered other tests to rule out kidney issues and wanted me to liminate Coreg as a test to see if Coreg is causing the anemia. But my cardiologist said “No. That’s not the way to do it”. He ordered 2 other tests, and nothing found. (He claims my 10.6 Hemoglogin is “normal” even tho the reference said normal=12-16. (My hemocrit is also low at 30.7 which he calls normal, but chart says should be
37-47. So I’m curious if any of you have anemia and if it has been attributed to coreg? And if any of you have low HCT or HGB and your cardiologist calls it normal?

A related tangle is feeling like a kid asking mom and dad the same question and they disagree, and I’m the kid in the middle saying “Well he said” and “She said”.

Thanks much for any info.

I have a 31 yr old daughter, dilated with DCM, viral..almost 3 years ago. She has been told she cannot have another pregnancy, primarily because of the medications she takes. She was fine with this, but somehow is now pregnant, just found out. She knows she has to have an abortion for more than one reason, this is a high risk for her also.
Does anyone know if any consequences of you do not have an abortion right away..? Last night she was showing me her heart..and i could see it pounding fast and hard from the next chair. Does the pregnancy at this early stage affect the heart rate already..make it work harder? Any input would be appreciated.

Hi all,
Has anyone ever had muscle twitches that scare you. I know they’re different from when my ICD fired off - 23 times over a few hours time in the hospital (turns out they had to make adjustments to it and put me on another med ) I was a basket case after that. Anyway the twitches are different and the doc explained them but they add to my anxiety anyway. By the way they only happen when I lay down and am close to falling asleep. I feel ridiculous for feeling this way but I can’t seem to stop. My doc did put me on Xanax - 0.5MG - I take 1/2 once a day. Thanks for listening.

Hi,  Went with my son yesterday to have his defibulator checked, They said it went off 90 times in the last 6 months.  It went off to stop a fast heart beat before it went into v.f.  The defibulator did’nt give him big shocks just smaller ones to correct a rapid heart beat.  The defib. is set to go off at 185 beats per min..  Anyone with a icd have this happen alot?   Is 90 times a normal amount?  Any advise would me helpful.

Went to see my cardiologist. Or should I say his Physician’s Assistant. Apparently he only sees his patients once per year, with a 6 month visit in between with his PA.

Nothing new to report. Told the PA I’m always tired. She said it was normal with a weak heart. And my being about 150 lbs overweight doesn’t help either. She did say my initial EF was 15 - 20. I was told it was 20 in the hospital. No idea if my EF has improved because I haven’t had an echocardiogram since my hospital stay and diagnosis in Sept 2008. She didn’t order another echo because I am self pay. EKG looked fine. Lungs sounded good. No noticeable swelling or water retention. Next appointment will be with my cardiologist in October.

I am now following Dr. Sinatra’s daily vitamin and supplement recommendations. It may not help much, but it won’t hurt to try either.

Fish oil: 1000mg
Coenzyme Q10: 300 - 360 mg
L-carnitine: 2,000 - 2,500 mg
D-ribose: 10 - 15cc
Magnesium: 400 - 800 mg

I also take these prescription medications.

COREG: 25mg тАУ 2x Daily
LISINOPRIL: 10mg тАУ 2x Daily
DIGOXIN 0.125mg: тАУ 1x Daily
FUROSEMIDE 80mg: тАУ 1x Daily
SPIRONOLACT 25mg: тАУ 1x Daily
ASPIRIN 81mg: - 1x Daily

I read Mark (and other’s) recommendation that we have a Cardiomyopathy specialist. I’m in Tampa half the year and 50 miles E of Portland,OR the other half. I have DM, diag. 3 years ago, EF=26 (EF stayed the same all 3 years). I have a general cardiologist in FL, but he has NOT ordered any blood work, says he is mainly concerned about symptoms. If I feel good, he’s not worried. I DO feel good. I walk briskly 1 1/2 hours a day, but get dizzy in the heat (low BP, I presume). My GP looked at blood work I’d gotten at a health fare, was worried about my anemia (low hemocrit and hemoglobin).

Any advice for how to track down a specialist … I would appreciate.

I was first dx in 1996 after being sick for 2-3 yrs. The mds told me there was nothing wrong and it was all in my head.  I was 45 when dx and was admitted to the hosp. with 3 other dx.  I insisted on a cardiac work-up and when my echo was done, the dr said “now you know your not crazy.”  Two days later i had a cath and was told my EF was 15% and I needed a transplant.  Over the next 2 weeks, I lost 86 lbs of fluid but couldn’t find a center that would accept me. My last cath in 2001 showed an EF of 30% but my wedge pressure was 48.[Normal is 9-12]  The Dr said the only reason i was still alive was because my heart had compensated.  I now have a heart that is approximately 6X the normal size and hits my ribs on the left.  I’ve had an SA node ablation, a mitral valve ring put in and now had mitral/tricuspid stenosis and it is beginning to start on my aortic valve. Keeping a positive attitude is important but not always possible. I take my meds and listen to my body. I now have pulmonary hypertension also. It’s been estemated as moderately severe so my activity is now severely restricted. thanks for listening!

I am a 35 year old male who has had MVP all my life, and was diagnosed with CM and Mitral Valve regurgitation last summer. I had an ICD implanted in October for VT, then had an ablation done just before New Years. The meds were helping, but after the ablation my heart rhythm is *much* more regular. I had been having lots of skipped beats/PVC’s which were causing my VT’s.

As far as the CM, I have never had any CM or HF symptoms. I was jogging 1-1/2 miles a couple days a week and all normal activities. What made me go to the cardiologist was dizzy spells and a syncope, which led to the VT diagnosis. I feel very good other than the side effects of my medications. I am currently taking Lisinopril and Coreg. I had an echo and a chest CT done in February, before I had a discectomy surgery on my back, which showed nothing unusual other than my MVP and some irregular beats, which was assumed
to be due to the MVP. The same cardiologist who made the later CM determination was the one who cleared me for the back surgery. Since my dilation and VT’s seemed to come on so fast, I am hopeful that the PVCs/VT was the cause of the DCM and that it could recover on it’s own, since I have no symptoms and am young and in otherwise good shape.

My EF varies from 35% by cath (original diagnosis last summer) to 40-45% by an echo and 50-57% by an MRI in October just before getting my ICD. The MRI said my left ventricle was “dilated at 6-cm”, and my mitral regurgitation was “+2″. I saw the cardiologist on Thursday, and he describes me as having ‘moderate’ CM and ‘moderate’ regurgitation. He said my heart was responding very well to medication, and that he could no
longer hear my murmur or regurgitation, which sounds excellent to me. He wants to see me back in 6
months for another echo, and annually thereafter. Is a yearly echo good practice for DCM patients, or should it be more often?

What has my wife and I worried is the uncertainty about the future. Some of the things we have been finding out about DCM are disturbing, but there seem to be some people who have had great recoveries as well. My cardiologist said that I could stay the same for years, the DCM could reverse, or it could degrade. He said there is just ‘not enough data’ for someone my age with DCM to make a prediction. I understand that this is
serious and I have been working on eating healthier, have lost some weight and am exercising. Of course we have to be prepared for the possibility of the worst as well.

I have been having some left side chest pain also. I was hooked up to a King of Hearts moniter and they found that when I was having the pain I was having a very fast pulse/A-fib. I am taking a new medicine for it and it seems to be helping. I would mention it to your doctor ( as everyone else has mentioned). I hope it goes away soon!
On another note…. Does anyone know of a good cold medicine that we can take. I feel horrible!

I hear that some DCM comes with chest pain, can someone tell me how that kind of pain would feel, I have no blockages of any kind and im 1 year into DCM with ICD and ef of 15% last nite I had kind of a burning turn to
heavy pain in chest, rolled over onto my back it went away just that fast, nothing in arms neck jaw so on, if i even have a hang nail on chest again im calling 911 but leaning tword a cramp please help me out here, tell me about your pains?