I urgently need your advice for my cardiomyopathy / marked left ventricular dilatation / low EF

[Wello]

i have a case of cardiomyopathy with marked dilated left ventricle and a moderate dilated left atrium,
my blood pressure = 110 / 75
my resting ejection fraction was 26% four months ago but now its 31% ( normal 53-77 % )
End diastolic diameter = 83 mm ( normal 38-57 mm )
End systolic diameter = 70 mm ( normal 22-40 mm )
% diameter shortening = 15% ( normal 27-46 % )
post wall thickness = 9 mm ( normal 7-11 mm)
Ventricular Septum Thickness  10 mm ( normal 7-11 mm )
left atium diameter 53 mm ( normal 15-40 mm )
normal aortic root & aortic valve cusps
moderate dilatation of LA
marked dilatation of LV with marked global hypokensia
mild mitral & tricuspid regruge
normal pericardium
I am on the fol. drugs :
- ACE inhibitors ( Coversyl )  4mg / 1 Tab / day
- Diuretic ( Burinex )
- B-blocker ( Vastarel MR )  1 Tab after breakfast & another after supper
- Marivan 5mg / day
- Asprin 75 mg / 2 per day

I totally stopped smoking and alcohol but need to lose wait by eating less plus walking for 20-30 minutes / day.

Please let me know your opinion.

Walid EL-Hennawy

[maggiemag]

Relax, and don't be so touchy!!  I was not referring to anything you said at all, period. The OP had mentioned transplant and I was responding to that one mainly.  I have some experience with twice being told to go get evaluated for transplant, so I have researched it some.  Remember that lay people are gonna freak out if they see the word transplant.  They will not be able to take in any info after that.

[cmt51597]

Good points from often.  Also a lot of folks cannot take going through the MRI or have to take meds to lie in that confined space.  A lot of patients I do echoes on say that they would not do the MRI again unmedicated or would want to avoid it all together if possible.  

[often]

I apologize...I was mixing up my tests...I was actually thinking CT, not MRI"s.  as far as unnecessary risk.  However, taking into consideration, I think I would stick with the echo or the MUGA

[often]

Considering the recent info on unnecessary MRI"s, I think that I would stick with the echo..or a MUGA to determine EF.  It is best to go with other tests that are available, rather than the MRI, unless totally necessary.  Also, 4 months is not that long, and I would continue to take the meds, get the exercise and diet under control.  Coreg is the benchmark for DCM, and it will be a good idea to discuss with your doc.  

[cmt51597]

First of all (especially to maggiemag)-- I never said to get a transplant.  I said, "You just need to manage it as best you can UNLESS you get a transplant."  It is always a POSSIBILITY that you get a transplant even if it's a .005% chance, it's still a possibility.  It's funny how what you say can get completely construed.  

Anyways, I went back to your earlier comments and noticed that your 3 echo results were so close (only a 5% range).  Given the variable nature of echoes and the variability of numbers from one tech to another (a 20% difference in result is not uncommon if you have 2 different techs doing the same patient within a couple days period), those 3 echoes don't convince me that your EF actually got better.  it's possible, but such a close range to me is accounted for by just some variations in the placement of the probe, the tech, the way your were breathing during the picture and some other technical consideration.  At the same time, given the numbers are close and consistent, it tells me that the techs or tech did do a consistent job.  

Now, I'm assuming all of these were 2D echoes.  You should ask your doctor for a 3D echocardiogram.  This is a fairly new technology and is not available everywhere-- especially in the out-patient environment.  So you might have to seek out a facility that provides it.  What is different about the 3D echo is that is uses a much more advanced in accurate approach in calculating your EF.  2D echo uses a lot of assumptions about the heart's geometry in calculating the EF.  3D Echo, in which a more precise measurement of heart blood volume in systole and diastole can produce a more accurate EF.  You're a perfect candidate for a 3D volume measurement and I believe it would help us get to the bottom of where your EF really stands and hence better direct your care plan.  The 3D echo will also provide further insight into your wall motion.  Dilated cardiomyopathy is a good application of 3D echo.  You will have to hold your breath when they take the measurements.  Your cooperation and patience will be critical to the success to the test.  Listen very carefully to the technician.  It might take up to an hour to get everything done.  There are very precise measurements that need to be made.  Before the exam ask the doc if he wants you to take the normal meds, he might have you alter some or not.  Again, you want a 3D echo with a volume measurement.  Go to a major hospital with a good reputation for heartcare.  You need a technician who really knows what he or she is doing..the test is very technician dependent.  After the test, the tech will have to do some post-processing on special software to analyze the results and get good numbers so you may not get results right away plus it will need to be read by the cardiologist.  

If you are also willing to spend the money you can get an MRI of your heart to get a good EF.  You will have to stay still and hold your breath while in the machine.  you have to cooperate in these tests- it's very important.  And then you're going to  have to get it again in a year or so to see how you're progressing.  That's why the 3D echo will be a better route as you want the lower cost test if you're having it done repeatedly and still give you strong accuracy.  Try to go to the same echo lab every time you get the test.  

Diagnostic testing is really a key for care these days.  But, you need to seek out the best testing facilities with the most competent techs and with the most up-to-date technology.  

[Wello]

I will talk to my doctor about Coreg and i will forget about the transplant matter, thanks.

[Wello]

I used Vastarel MR for 12-14 weeks, is this Coreg ?   I tried Coradrone for 6-7 days which caused me some side effects and i stopped it.
Thanks & hope to hear from you soon.

[Wello]

Thankyou so much for your message and your valuable advice, keep intouch.   I wish your daughter all the best.

[maggiemag]

Heart transplant is not decided based on EF.  I would advise you to let the physicians worry about that for now.  :-)  IF they feel that you may be a candidate, they would refer you to a transplant center, if theirs isn't one, and perform a number of tests.  One of the most important tests is called a vo2max.  You are transplant material if you are at 14 or below for that test.  Coreg has been shown to significantly help reverse the *remodeling* that your heart does as it enlarges, mostly the left ventricle.  It can help the heart kinda start going back to the original shape it was in.  Some people's hearts return to a normal size.  Yours is rather large but it can still get better.  My EF improved a lot although my heart isn't smaller.  Try to focus on how you feel.  Also be glad your physician will echo you so often, most will only do every 6 months or even only once a year!

[anacyde]

Hi :)  If you're overweight, losing weight will take additional burden off of your heart and improve it's ability to heal.  Quitting smoking was an excellent move, smoking causes the vessels to constrict and this stresses the heart.  Not drinking is important, since alcohol is toxic to the myocardium.  In other words, you're on the right track :)

Salt reduction is important because salt increased the volume load on your heart.  The big part of treating cardiomyopathy is reducing the workload on the heart as much as possible.

While it is a *possibility* that your heart may never get to the 50-70% range which is considered normal, people can live long, comfortable lives with a reduced EF as long as their condition stays stable.  With proper treatment, it can remain stable (or even improve, in some cases) for many long years.  There is also the possibility you *could* heal too.

Now is not the time to think of transplant.  When you get to 15%, they start considering you.  Since your EF is double that, you are in good shape in terms of keeping the heart you have.

Coreg is a type of beta blocker that may have some advantages over other similar beta blockers in treating heart failure.

As far as vitamins and minerals, many people have many differing opinions, but a multivitamin like Centrum, combined with a healthy diet should be good for you.  DO NOT mess with supplements like potassium, magnesium or anything like that unless your doctor puts you on it.

I hope your heart continues to improve and heal.  Best wishes to you!

[ddavey]

you really should talk to your drs. about coreg,  it is a very good med for cardiomyopathy. the meds you are taking now seem to be helping, and adding coreg should give you a bit more improvement. the thing about coreg is it will lower your bp more than it is now, and can have some side effects at the beginning, which is why a low dose is started and gradually increased.  the fact that your ef is coming up is good, my daughter's ef didn't start to go up until recently when digoxin was added to her coreg, vasotec, and inspra.   the drugs that are available now, and the more they know about cardiomyopathy has changed the old thinking about the disease, and it doesn't always mean a transplant like it used to.     hope you continue to do well

[Wello]

Forgot to mention that i am on the fol. meds : Burinex ( Diuretic ), Marivan, Vastarel MR, Coversyl, Ator ( for lowering cholesterol ), L-Carnitine Tabs & aspocid.
My first echo was 26%, second was 28%, third was 31% in 4 and a half months.

[Wello]

Thankyou so much and i need to do more about my salt intake, eating habits, weight and walking.
I am glad to hear that you have recovered but do you still take the meds ?
It all started 4 and a half months ago, i visit my doctor every 3-4 weeks and did 3 echo's, the first gave a result of 26%, the second 28% and the third 31%, my next echo is due mid Jan 08.
Thanks again and hoping to hear from you soon.

[Wello]

Thankyou so much for your advice.  
Why is salt so important when my BP is 110/70 and i am on diuretics ?
Is it true that i may ever completely recover ?   or do you recommend a transplant ?
When should i start thinking of a transplant
How much will it cost to have a heart transplant in the USA ?
What is coreg ?
Which vitamins and minerals should i take inorder to help my heart mucsle ?
Sorry for my loads of questions but your advice is needed and very much appreciated.

[often]

You have already improved your ef....just keep working on the exercise and taking the meds.  Have the docs discussed the need to eliminate sodium from your diet as much as possible??  That is a critical part of managing this disease.  Your sodium levels should be about 1500 mg per day.  Less if possible.  That pretty much means no pre-packaged foods, canned foods, junk foods etc etc.  You need to do more than toss out the salt shaker.  You need to read labels and notice the serving sizes..learn to buy fresh veggies or frozen...learn to flavor foods with herbs and spices.  This may also help in the weight loss.  There is sodium in darn near every thing out there that we consume...including meds and vitamins etc....

It is possible to get better....at diagnosis I had an ef of 10-13% depending on the test one wanted to believe...3 and a half years later my heart is functioning normally and has normal size.  

I assume you will have regular follow up visits with your cardiologist.  

Oh...by the way....its NOT too late to make the changes...congrats on quitting the smokes and the alcohol....and as you adjust to the walking, you will find yourself walking for longer periods.

[cmt51597]

Sounds like typical dilated cardiomyopathy.  Just follow the Dr.'s advice.  You just need to manage it as best you can unless you get a transplant.  Have you asked your Dr. about Coreg?  Might help your EF.  Losing weight is definitely key as you want to do anything you can to lower the stress on your heart--- which is bad for the heart in a healthy overweight person (I  know kind of an oxymoron.).  And it's very important for you to keep on top of your diagnostic tests.  You probably need an echo every year now.  This can become a very serious condition and sounds significant already.  You really need to focus on changing your lifestyle.  I see patients like you all the time.  But, unfortunately you waited too long to make the critical changes.  We need to be responsible in our lives as adults for our actions.  People need to start realizing this about their health.  It's not a game.