Dilated Cardiomyopathy

[newheart1]

I was diagnosed in March 07 with Dilated Cardiomyopathy (unknown cause) and Ventricular Tachycardia.  My meds are Lipitor, Coreq CR, Lisinopril, Aspirin and Aldactone and am just coming off of Amiodarone.  I have a defib/pacemaker that is set at 133 because I have slow VT's.  My 7th hospital stay in 8 months (yes 7) was for a VT ablation which went well.  I show no signs of Heart failure - which is good.  I am 51 years old.

I would like more information about CM and how it is treated.  I know the meds reduce the workload on the heart but wondered does the enlargement ever get better?  Can CM be reversible or am I looking at a progressive disease of heart failure, Biventricular pacemaker and a heart transplant?  I can't find anything online besides this and a 5 yr mortality rate and know there must be more.  I'd like to learn all I can so I can and would appreciate any help.

Thanks,
Angel

[ajrenalli]

2003

[newheart1]

I don't get short of breath when I raise my arms above my head, they just feel very very weak like my I have no strength.  Actually I never get short of breath, my BP just falls and I am dizzy when I take a hot shower sometimes or lean over.  Maybe the weakness I'm feeling in my upper body is simply because I haven't been able to do anything training wise yet.  I've actually had to change the way I do my hair, and just let it air dry.  I can manage a curling iron ok, but not blow drying.  I think I may have started out to heavy of weights upper body and am encouraged to know of your progress.  I may wait a few more months before I try again.  Meanwhile, my goal is to do a 5K walk every month - it really feels wonderful to be able to do that!  

How many years ago were you diagnosed?

Angel

[ajrenalli]

I really do not understand why you get short of breath when raising your arms above your head, but I remember those days well............blowing my hair dry, washing my hair, even a hot shower..................also folding towels and the rest of the laundry.   And bending over to get something our of a lower cabinet still makes me short of breath. With the weight training I was told no more than 10 lbs..........so I started with 10 lbs (in each hand) which is 20 lbs, ( and wrong!) and could NOT do it.  After a year or so of 2-5lbs, I had a sudden improvement, and now do 40 lbs upper body, and much more lower body............even 120 lbs lower.  I don't want anything heavier with upper, because I get too muscular.  Just do what feels good, and what you doctor approves of.  2 5K races is EXCELLENT!  Hang in there.  There are good and bad days.  And after years, I now feel almost normal, or maybe I have forgotten what normal feels like. :)  Best wishes, Sue

[newheart1]

Thanks to all for your encouraging words.  It helps to hear your stories of success and improvement.  I am trying to keep a positive attitude and know that is soo important, but the multiple hospital visits are beginning to wear on me.  And I've always been under the assumption that in time, I will develop Heart failure and need a transplant.  I just thought that was the course of my disease.  Add to that my VT's, and I've been pretty scared.  My EF is 30% and it has not improved in 8 months, but it has not gotten worse either.  I'm hoping that my meds can be steadily increased in dosage - right now I'm on minimum dosages (I've had multiple challenges finding the right combination).  I really do appreciate you replying to my post - the other heart patients I know are all congestive heart failure - heart attack, and its' not the same.

Regarding exercise: I went through 3 months of cardiac rehab (mostly treadmill/bike) and joined a gym when I was done.  The strength training was very very hard on me,,dropping my BP considerably so under the guidance of the cardiac rehab nurses, quit doing strength training for now.  I do walking mostly, aerobics for 20 minutes/4-5 days a week.  I've heard different things regarding exercise.  Another heart patient - myocarditis says her Dr. says no strength training at all.  I feel great when I do the walking etc, (in fact I've completed 2 5K walks in the past 2 months!!!  But strength training and any movements above my head (like blow drying my hair), just wears me out.  Does anyone know why that would effect me so much?

I've been hospitalized twice in the last 3 weeks, so this my first week back walking again.  Before the hospital visits, I was walking, aerobic etc. 40 minutes/4-5 times a week.

Hope to hear from you guys...

Angel

[FLBrat]

frozen veg are ok, they will do in a pinch, but nothing beats fresh.  Living in the south gives me an advantage though, costs are not inflated by freight etc.

[ajrenalli]

Yes, you are right..........I was thinking of forzen veggies, which are like fresh, and lately, I have found they are much cheaper.  Of course you have to avoid the ones with cream sauces, or butter additives.  Pure, cheap,  plain frozen vegetables.......I love them!
I disagree with you, however, regarding  frequent PVCs weakening the heart.  I have heard of this in the rare and extreme cases, but there is no scientific rationale or data correlating PVCs, V Tach, etc with exacerbation of left ventricular failure /CHF.  The only indication for treatment really seems to be the presence of syncope or near syncope.

[anacyde]

Im going to echo what others have said here, yes!  You can improve.  Your med regimen sounds excellent.  A successful VT ablation is a huge step in the right direction too.  Frequent ventricular arrhythmias can stress a weak heart muscle, having less of that will afford you more opportunity to heal.

And ajrenalli - you're thinking frozen veggies, which are highly preferable to canned due to a much lower sodium content.  Frozen dinners on the other hand typically exceed the whole daily value on sodium.

[often]

I was diagnosed with 10-13% ef, enlarged heart etc etc, 3 years later, with meds, diet and a bi-v/ICD, my heart was normal size/normal function.  YES!....you can improve.  As maggie says, ignore the stats....they are outdated.  Avoid the processed foods...keeping the sodium low is a key factor with this.  (I don't even exercise that much, but shhhhh  don't tell anyone).  I am doing great.

[maggiemag]

Hi AJ!  Umm, most frozen food has a ton of preservatives in them.  There are a couple of frozen veg that have very little sodium.  90% of  all frozen dinners of course, have TONS of sodium.  I read the labels for amusement purposes sometimes in the grocery store.  I do, however, allow myself a Weight Watchers frozen chocolate (fake) ice cream bar now and then!

[ajrenalli]

why most frozen food?  I thought frozen food was very low sodium.

[maggiemag]

Well you are on all the correct meds already.  Ignore the statistics.  Everyone is different but I can attest that you may get significantly better.  Some return to normal EF and heart size.  My EF went from 15% gradually to 55 and is now at 40%, which is enough!  :-)  My heart is still enlarged but oh well.  My arrhythmias significantly improved since diagnosis, although they have not gone away.  You can only get a bi-v pacemaker if you have the qualifying criteria, one of which is a significant left bundle branch block.  I did not qualify.  It took several years for my EF to improve.  Regular exercise is key with your physician's approval of course.  Mild resistance training is recommended as long as you don't strain.  If you show no signs of heart failure that is very important, and a very good thing since you haven't even been diagnosed that long ago.  I don't remember what your EF is, but it is possible that you could completely recover.  For me a positive attitude was paramount, and easier said than done when you are told to go have a transplant eval!  Low sodium diet under 1500-2000 mg/day was also key for me.  Read all labels and avoid all fast food. canned food. most frozen food, the salt shaker of course!  It isn't hard after a while, really.  You are educating yourself which will help too.  Try chf patients dot com as there is a lot of info there.  Hope this helps!