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1293682 tn?1311956071

Dilated Cardiomyopathy severe class 2 EF 27%

Age 38. Diagnosed a few months ago.  Am on Coreg 40mg and Lisiopril 10 mg and waiting to see if meds work... then the next step is a pacemaker if meds dont work by 6mos.  If I do have to get a pacemaker, will that include a defib too?  I have non ischemic DCM and normal rythym as far as I know, but the risk of SCD makes me think a defib along with a pacemaker would be good. Hopefully I wont have to get one!

its pretty scary.  I already have RA, hypothyroidism, Fibro, Sjogrens... and was used to chronic disease for years now, but this DCM is a whole different ballgame.  

ALSO... is it normal to have episodes of shortness of breath with this?  My doc didnt want to up my meds anymore the last time I called the nurse to say I was having an "episode" so I just want to know if that is part of having this now...?
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Avatar universal
Dear Kenkeith,
What is your age..? Actually my Daughter is suffering with DCM and her EF is 27%, She is only 9Yrs.

Suggestion please.
Helpful - 0
367994 tn?1304953593
Thank you for your response.  I consider myself fortunate not to have heart rhythm problems, and I can understand the frustration. Hope it goes well with you.

Regards,
Helpful - 0
1293682 tn?1311956071
hey there! How are you today?

I told my cardio doc the other day about an episode of shortness of breath while exercising and he asked if I had any dizziness, etc... and I said yes... for sure... and felt that my legs were not getting any O2.  He is ordering a monitor for me to wear for a week and said I might have to get a defib early if it indicates for one.  I have worn a Holter M. for 24 hours before but a week will be a pain.  He said it was slightly different from the Holter.  What a pain.  I havent even heard back from them on that... probably have to see if my insurance covers it.  

I had read that the procedure for implanting an ICD is to do it when the patient is awake!  Just with a local. Is that the case?  This was from a good site meant for docs too... but that doesnt sound good.  I just hope I dont have to find out!  (meds... you gotta work!)

anyway, I have to not push myself to hard till I get better.  I do want my heart to heal dammit!  Its so frustrating to have this.  You know its bad when I say, can I just go back to my RA and other 3-4 diseases and not have this!

cheers, friends!  Hope everyone is feeling well today!
Helpful - 0
367994 tn?1304953593
QUOTE:"So... are you still on those meds now?  I had read that once you have the heart muscle damage that it is permanent... even with improvement in function.  I may be wrong... hope so actually.  I just had the impression that this is also a chronic disease much like my other ones and that we have to be on those meds forever too"

I had heart muscle damage, but when the flow of blood to an area not getting sufficient supply the cells were revitalized.  The condition was hypokinesis (impaired heart wall movement), and stent on at the time of a heart attack 6 years ago revitalized what is medically termed hibernating or stunned heart cells.  If the heart cells are necrotic, it appears the cells cannot come back to normal....stem cell therapy is the only option.

Medication will continue indefinitely.
Helpful - 0
1293682 tn?1311956071
hi there,
Hope you are doing well.
Yeah, I knew the shortness of breath was part of it all, but thought that maybe being on the meds for a while would have helped it by now.  Since my PCP had the suggestion from her collegue that I be on more meds, it just made me wonder if that was standard for other people too.  It gives me hope that you had improvement on the same 2 meds that I am currently on.  My cardio doc also said it would be a test period of 6 mos to see if they do work.  Hope so!  Anyway, yeah, I am on a bizillion meds already for those other things so its frustrating.  You know its crappy when you wish to just have the other 4 diseases and not this heart thing! doh! haha!

So... are you still on those meds now?  I had read that once you have the heart muscle damage that it is permanent... even with improvement in function.  I may be wrong... hope so actually.  I just had the impression that this is also a chronic disease much like my other ones and that we have to be on those meds forever too.

I just get sick of that short of breath thing... its so weird... I know you understand, that feeling when you cant get any oxygen no matter how you try... since the heart is not pumping enough O2 into your system.  Its such a strange and unpleasant feeling.  

I am due back to the cardiologist for a recheck in a few weeks.  Not to the 6mos part yet.  Is it me or are most cardiologists not great at bedside manor?  I have been thru like 3 of them before this since I had tachycardia and they were all kinda like that.  Sort of like surgeons... that ego factor...

Anyway, thank so very much for your support here.  Let me know how you are in regards to meds now, if you dont mind.  I hope you are feeling great!  Take care.  
Helpful - 0
367994 tn?1304953593
My meds have been coreg (beta blocker for stabilizing pulse rate & blood pressure)lisinopril (ace inhibitor) to dilate vessels to lower blood pressure.  These two meds are to lower the heart's workload, and it may take a few months for the heart to reverse remodeling back to a more normal size (took about 6 months for me).  Yes, I had shortness of breath, and that condition caused me to go to ER for what I thought was a pulmonary problem...diagnosed with congested heart failure.

You have concomitant issues that I didn't have, and how that plays into prognosis I don't know, but I had/have valve regurgitation. No other doctors involved.  Take care and let us know your test results
Helpful - 0
1293682 tn?1311956071
thanks for the reply.

Were you on these same meds as well?  My primary doc had called her cardio. friend and he told her I should also be on another drug for this.  I asked her to call my CD first and he said no.  I figure he has his own plan, but I do wonder if I am getting the best care.  That is crucial to avoid the whole defib implanting thing!  Anyway...

Your case gives me hope.  Just curious what meds you were on... and I assume you have to continue taking them?  I have other serious chronic illnesses that I have to take meds for life for, so I was assuming this is in that category as well.

Also, did you have "episodes" of shortness of breath too? My PCP said at that EF that it was probably to be expected.  I have to go to a pulmonoligst too... did you see one of those?  I already have so many specialists!

take care!
Helpful - 0
367994 tn?1304953593
The DCM is the result when the heart is overworked.  The coreg and lisiopril dilates the vessels and the enlarged  left ventricle should return to normal size and your EF should improve.  I had the same problem 6 years ago.  The LV was enlarged and an EF below 29%.  Currently, the LV is normal size and EF 59%.

For some insight, when the left ventricle enlarges (DCM) it reduces the contractility of the LV and there is a loss of the heart's output.  Also, an enlarged LV can cause arrhythmia (irregular heartbeats) and that condition may require a pacemaker.  

The medication worked for me, and with DCM meds may work well for you as well.  Take care and I wish you well..
Helpful - 0
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