Cardiomyopathy Cure?

[beachjay]

Is it possible for IDCM to be cured? I have been taking Coreg ,Diovan and aspirin for three years with not much improvement in my symptoms until the past three weeks. Now I am virtually symptom free! Or is this just classed as 'well compensated' and is it because of the meds? I would really like to reduce some of the medication.

[rbbns]

I

[gsan]

Hi everyone,

I am 43, with dilated cardiomyopathy.  I have had it for the past three years, and until this year my EF was approximately 43 percent.  This July things seemed to worsen, so it sent me on a quest to try to find out who was doing what in regards to cardiomyopathy and stem cell therapy.  

In December I am planning on going to Thailand, and have stem cell therapy under the supervision of an American cardiac surgeon, who is also a pioneer in the field of adult stem cell applications.  So far this Doctor has had very positive results using this therapy.  I met one of his patients with a condition similar to mine, and she has improved, not only in EF, but her heart apparantly shrank between 10 and 15 percent.  

Don't want to put out false hope, but just wanted to let you know what I'm about to do, and will share the results and my experience in the future.

All my best to everyone!!!!!

[Gui]

Well I am happy to report that the meds are working, my test results today indicated that I have jump back up to 48% mark. I will continue with the meds and have a follow up in 1 year.  Who would have thought this would have been working so fast.

I was concerned this morning, but I was also feeling great in general. I hope others get the same results too.

[beachjay]

Just to let you know, it can take months for the meds to become completely effective. I think Coreg is a miracle drug I also take Diovan . My echos have been stable since I started these drugs three years ago  and finally, (see above)have improved considerably. It does take time....Good luck!

[Gui]

Hello, I am 6'2 205 exercise routinely, bike for 40 miles a week, don't drink, smoke or do drugs. I turn 40 in Feb and then in April I had a echo and heart cath that reveiled Non eschemic Cardiomyopathy, no clogged arteries, EF of 45% second echo in April show ef 30 to 38% been on Diovan, and was also place on coreg, my BP was already low, 127/66 cholesterols good, heart rate range 55 and when I sleep drops to 49. This was all prior to meds.
My family history is not the greatest either, my nephew just had a hole repaired in his heart at 17. My other nephew has a mumur. My mom indicated that we do have some cardiac history but really doesn't know what it is.

I am scheduled for another echo this week, but I am scared to see what they find. Anyone have any idea what I could do, or what I can expect as the next stage of this process.

I am just looking for some kind of information that I can use.

thanks
Gui

[Momto3]

CONGRATULATIONS on the improving EF!!!  Here's to continued improvement.

When I developed CM because of frequent ectopics I had 2 ablations.  My EF improved 5% each subsequent visit (from 40 to 60%)....Hope the same happens for you!!!

[beachjay]

In case anyone is checking old posts! My EF is 45 %.Yeah!!! Only snag I now have fluid in the pericardium. Haven't a clue what this means and if it has anything to do with cardiomyopathy. I see the cardio next week unless I have pain! Any info would be appreciated.

[beachjay]

I think you have proved to me I don't stop taking the meds! Had echo Friday results Thursday (I hope!) The doc has been talking 'bi-ventricular pacer' to me but I feel good at the moment so am sure my EF will be higher!

[NJEMT1968]

In 1997 I was first dx. with cardiomyopaty, non-ischemic, unknown etiology.  Since then I've had two Right and Left Cardiac Catheterizations and all the vessels appear to be clean.  My echo originally showed an EF of 40-45%.  There was a period of time in the past 3 years that I stopped taking the medications (ACE, Diuretic, Beta Blocker) due to financial reasons.  That was the biggest mistake.  Early in the summer of 2005 I decided I had to see the doctor for my chronic shortness of breath, so I made an appointment, I was admitted to the hospital for acute CHF, diuresed and sent home on medications.  It was then that my EF was discovered to be 20-25% and that i had a Left Bundle Branch Block. After being on the medications for 3 consectutive months, I felt relief, but not as ideal as I would have liked it.  About 2 weeks ago, on a follow up visit with the cardiologist and Electrophysiologist, it was recomended to me that I receive Cardiac Resynchronization Therapy (CRT-D).  I was implanted with a bi-ventricular pacer with an ICD.  I was told that I was at risk for a lifethreatening tachyarrhythmia, the reason for the ICD portion of the device.  The bi-ventricular pacer, tracks and senses my heart, resynchronizing my ventricles to beat together.  Since this was implanted about 2 weeks ago; outside of residual surgical pain, I feel a major improvement in symptoms, I no longer have swelling in my legs or ankles, I am not constantly short of breath, I have more energy, and feel much better overall, and the doctors say that this will only improve. I wouldn't say this is a cure, but it sure does help!!!

[Momto3]

Just wondering if your doctor mentioned the possibility of the arrythmias causing your cardiomyopathy?  That's exactly what happened to me.  My EF had always been "normal" (good, in fact) until one day a serial echo revealed it had dropped to 40%!!  Was diagnosed with CM and began more aggressive treatment for my ectopics.  Long story, but the bottom line is that my pvcs, nsvt caused the cardiomyopathy.  After a couple of rounds of medicine, I decided to pursue ablation.  In 2003, I had 2 successful ablations and am doing well.  My EF slowly climbed back to 60% (last echo in May 2005).  

Prior to the meds/ablations, I was soooo tired, short of breath and definitely noticed going up a flight of stairs.  I noticed in your post that you have nsvt....any mention of that being the cause.  In my case, I was having about 22,000 pvcs/day (calculated at 24% of total daily heart beats).

Here's hoping the medicine continues to work well for you!!

[LynnSB]

Coincidentally, I just got an e-mail from a friend  -- electcrophysiologist and scientist -- he was sitting in Heathrow Airport and he said he's heading to Bankok to present a fascinating study of a successful stem cell treatment in a patient with cardiomyopathy. I don't know the details but maybe it will be in the medical news.  I'm not posting this to raise false hope , just to point out that lots of research is being done and lots of progress IS being made! Another example -- not the same problem you have but i have a friend who had such bad heart failure ( damage from chemotherapy due to breast cancer) that her doc's nurse called me (friend has no family) and said she was never getting better and would eventually die or face a heart transplant and she was in denial.. long story short: she got better and better (even after to moving to high altitude which was supposed to be bad for her) and at age 60, just had a couple of normal echos and normal ejection fraction! She's still on meds, beta blockers, but she no longer technically appears ot have heart failure!! So i know this is unusual, but doggone if it even bad hearts don't sometimes get better. good luck!

[beachjay]

Don't know how I can post an update a couple of weeks later! Any answer?

[Christie2004]

Please post updates!

[beachjay]

Six months ago EF 40% having risen from 35%. Original symptons arrthymias - PVCs PACs NSVT. Extreme fatigue developed slowly as did weakness going up stairs and using my arms above my shoulder height. Original echo showed 40 - 49% and six months later 35% with thallium stress test.
PVCs have virtually stopped and had tachy. very briefly twice in the past month. Fatigue lessened as have problems on stairs. I feel so much better I can hardly believe it and there has been no med. change in a year.
Echo was postponed from last Tuesday due to Rita evacuation and rescheduled for Oct. 14, I guess I have to wait for that before I get too excited!

[lak]

Hi,

What is your ejection fraction and what were your symptoms when you were diagnosed?

[Cleveland Clinic]

jmwb,

Most likely if you had significant LV dysfucntion you will be comitted to medications lifelong. There have been some instances where some of the medications have been tapered off, but I would approach this as a slow process with some degree of apprehension.  If you've had improvement, I would be thankful for it and realize that the medication while inconvienent may have a big impact.

good luck