Chronic heart failure

[justJRN]

Hello,
I was diagnosed with dilated cardiomyopathy (probable viral or idopathic) in May, with an EF of 16%.  Prior to diagnosis my PMD had put me on Diovan HCT, and a medrol dose pack as he was thinking my cough/SOB was from my lungs. The week between seeing him and having the ECHO and stress and being diagnosed I began felta alot better.
My cardio put me on "heart rest" and Coreg 6.25mg BID

In July had another echo, my EF was 40% and my heart had grew smaller (almost normal) .  Echo reports say that I have mild PAH(pressure is 30), global hyposkines and also mention A/E reversal and diastolic failure.  My cardio added demadex and KCL as needed (based on my daily weight)  he told me i could increase my activity to "comfort" only stop if any CP or SOB

In August I was admitted in CHF needing IV diuresis (weight had been up as much as 20 lbs within a couple of days) very SOB/Chest pain with any activity.   After discharge i was back to "heart rest"

MY BP started elevated 180/120 first visit to PMD (no history of HTN and as a nurse I checked my BP regularily)  through out end of August and Sepember my BP has been running about 90/60.

I had another stress test this month, and couldn't complete 1 stage (5 METs)  my original stress test in May I completed 2 stages (7METs).    In both my heart rate went up to 140s but much quicker in the second one. Oh and my EF is now 47%

I have problems with retaining fluid almost daily.  My cardio currently has me on coreg 6.25, toresemdie 10 to 40 mg (based on wieght) diovan 80, dyazide 37.5/25, aldactone 25, KCL 10 to 40 (match to toresemide).  When I attempt any activity i become sob (or coughing) and have chest pain.  

I have no ischemia (my first stress was a thallium, I also have had a MUGA, VQ scan and PE study so my cardio got a good look at my coronary

Why would I still being having fluid issues (have been on 2 gram Na diet the whole time)?

Could the pain/SOB be from deconditioning?

[justJRN]

Thanks so much for the reply.   I have several copies of my EKG, I have an incomplete left BBB, have never had an atrial or ventricular arrthymmias.  Although MY QRS is a bit widened I don't know how mnay boxes would equal to 120 mseconds.  Reading EKGs is something I am not so good at.   From my understanding with an EF of 478 i don't qualify for a CRT or a CRTD per the CMS guidlines.  

My blood pressure has been maintained at around 90/60 on the above regimene, and frequently wound up in the 80s especially when I increased my toresemide for increasing overload.  

My cardio feels that as soon as he can get my neural hormonal system under control with the right drug combination my fluid problems should be under control.  He feels at that time we can try a cardiac rehab program.   The chest pain I have so frequently he feels is not cardiac, and this confuses me.  I understand that it is not ischemic but it is substernal, comes on with any exertion (along with SOB or cough) usually resolves with rest (atleast 30 minutes of rest sometimes more).  When I was hospitalized in august for CHF the pain was constant, but the O2 did help decrease it on a apin scale.

any ideas on what the pain is caused by?

Thanks

[Cleveland Clinic]

I think you may also need a CRT-D device, at least if your EKG shows a prologued QRS duration of greater than 120 msec. This addresses at least some of the problem that your heart may still be having, despite an increase in left ventricular ejection fraction relating to dyssynchrony, where there is significantly delay in the contraction between various parts of the heart. This leads to ineficient contraction adn possible volume overload.
Another reason could be not enough blood pressure control ( should be below 120 / 65 at rest) or not enough diuretic dosing. Sometimes some people respond better to torsemide than lasix, so that can be tried as well, but sometimes the reverse is true.
Finally there may be arrhythmic issues ( atrial fibrillation or ventricular tachycardia or PVCs) which can decrease cardiac function and precipitate volume overload.

[justJRN]

sorry forgot to mention
I am a 42 year old female
only PMH is SVT (AV nodal reentry)
Family history of CAD, HTN, and CA.
basically ehalthy prior to diagnosis except for being overwieght (110 kg)

One other thing my cardio was toying with a biopsy (as well as Right and left cath) and immunsuppression but after consulting with another cardio he decided against it.

Any thoughts would be appreciated!

Thanks!