CHF or HF?

[Mom2four85]

Can you tell me how congestive heart failure & regular heart failure is diagnosed and what's the difference in diagnosing? I've been reading and researching so I know what questions to ask my dr and what to expect.

I've had CP, arrythmia's & fainting  since I was 9 years old.  I've been told nothing was wrong until I turned 42, then found out I had roughly 50,000 [unifocal & multi focal] pvc's.  I had an EPS; TTT, EKG's, Xrays, CT's, Cardiac MRI, Cardiac Cath, Echo, bloodwork,  Holter Monitor and Treadmill stress test.

I started asking alot of questions with really no answers but alot of maybe's.  Are there things I need to look for specifically in my testing I've had done that will point to HF or CHF?

After almost 2 years the only answers I have are these - I have Polymorphic VT (no cause found yet), Non-ischemic Cardiomyopathy [ef 40%], NCS & OI, CLVH, Enlarged heart, decreased LV mass, decreased LVEDV, increased LVESV, increased wall thickness and a low cardiac index.

Does a moderately elevated LVEDP of 34 and mild systemic hypertension put me in the Diastolic heart failure category? Do any of these results point specifically to CHF or HF? I only ask because when I went to the ER their notes say suspicious CP & CHF symptoms.

Why my dr's didn't just do a biopsy when I was in the hospital for 4 days is beyond me, plus other than Midodrine & a BB they haven't treated me or suggested treatment for anything else.

[Mom2four85]

that's why I gave up...let the dr's sort it out and then move me on to the next DX...I may be waiting a few years to find a name but at least it's better than waiting and being told they won't do anything else to help me

[is_something_wrong]

You do, indeed.

But even that won't explain the sudden LV dysfunction, or will it?

I tried to match your symptoms and results with the 2010 ARVD criteria. But I realized I'm not nearly skilled enough.

I can only wish you the best and pray that you will find a cardiologist that can give you a diagnosis. And treatment. You've suffered enough from this.

[Mom2four85]

I saw a new cardiologist today who thinks as my first EP did - I have classic symptoms of ARVD. Also, he referred me to Vanderbilt Autonomic Center because my ANS issues are so complex he thinks I need more help and he will coordinate care after.

He is going to take my case apart with some top notch doctors who specialize in reading Cardiac MRI's; not just rely on what another examiner says.

He spent over an hour with me, after 30 min with his nurse going over history & tests, & a new ekg and is doing another echo in 3 weeks then will see if I need another stress test or whatever else after he looks at my files closer.

yay! finally I may have some answers and found a doctor who cares enough to go an extra step to help me.

[is_something_wrong]

Oh, I forgot the AV blocks and atrial conduction disturbances :( Sorry.

[is_something_wrong]

Hi! :)

Conduction disturbances (the most common ones)

RBBB (complete or incomplete) - On EKG rSR pattern in V1. If complete, QRS >120 msec. Possibly visible IRBBB on one of your EKGs, must be a small one if it exists.

LBBB (complete or incomplete) - On EKG RsR pattern in V5/V6, ST depression or inverted T in those leads. The normal QRS complexes looks like your PVCs. Indicates heart disease. You don't have that.

IVCD: (intraventricular conduction delay): Widened QRS without RBBB/LBBB pattern. Your QRS are a little wide, though narrower than mine. A doctor must conclude if you have this, I doubt it.

In addition, there are fascicular blocks, hemiblocks, etc.. which often manifest with changed R axis.

With LVH you can have somewhat wide QRS complexes, due to fibrosis and slower electrical conduction abilities. I believe some of the diseases listed by the cardiologist can be a cause, too. This is far beyond my knowledge and I can't say anything for sure.

[Mom2four85]

hmmm, I see what Is_something_wrong is talking about with my ekg's; even the ones on 8/26/2009 varies completely from the one on 8/27/2009 that were done by the same tech in the same hospital with the same equipment.

What causes the P waves (PRT) in my EKG to keep changing?

For instance: my P-R-T axis have been -
4/27/2007         58 80 63
11/28/2008       12 53 22
6/25/2009         61 59 29
6/25/2009         63 59 34
7/14/2009         81 84 68
7/26/2009         61 56 36
8/26/2009         70 74 43
8/27/2009         30 56 19
8/28/2009         56 70 42
1/15/2010         26 61 26

thank you again and sorry for all of the questions =)

[Mom2four85]

yup always had the QRS thing when my EF was normal and low and always had larger breasts but for the rare things like Amiloyidosis [sp] don't think that matters - it could always be there? no clue I'm tired of trying to figure it out - will just let my heart give out and let them figure it out after the autopsy LOL

they checked for inflammation along with the tons of other stuff they checked for - BUT you know me and my dr's...what would they have to do to find inflammation - wouldn't it have shown up on any of the tests I had?

what are conduction disturbances on the EKG? brain fog and I can't even think what it is and why I posted my ekg's in my profile =) so some ekg nerd or caring dr may look and say - oh I'm going to try and help this person

Oh yes I've asked about the P waves because you told me - they have NO answers...that's why I'm still trying to find out what's wrong with me and what caused this - maybe the new dr today will have some answers; who knows - if not my next stop is Cleveland in S FL to see one of their heart dr's (btw which EKG was that 11/2008?)

Yes on bradycardia; I go from profound bradycardia <20's, to resting 50-60, then it jumps tachycardia 125 then 180's and VT runs and all round like a mixed up roller coaster! my heart's whacko I'm telling you...

why why why....

[is_something_wrong]

I thought you always had the low voltage QRS complexes, even when your EF was high?

I've always had high voltage QRS (both R spike in V1 and S spike in V1/R spike in V5) and my echo doesn't show any hypertrophy. However my EF is close to 80 so there may be some correlation, I don't know.

I remember I once asked my cardiologist what could cause the sudden high amounts of PVCs and malignant arrhythmias (of course I couldn't provide your entire history, cardiologists in my country charge about $10 a minute and we don't have health insurance here) and I believe he said something about a possible subclinical heart inflammation causing an irritable spot in the heart? You've never answered this before, but is this ruled out?

I didn't think you had conduction disturbances in your EKGs?

By the way (you know I'm just a stupid EKG nerd and no doctor ;) have you asked your doctor why the P waves in your EKG keeps changing? I can see from your first normal EKG your P wave axis was 12 degrees, and it changes to >80 degrees in the later EKGs. Are you sure you are in sinus rhythm at all times (or a possible atrial ectopic rhythm that may origin close to the SA node)? Or some changes in the atrias that may indicate something?

Bradycardia may (as you know) cause PVCs because irritable spots may try to take over the rhythm.

Just throwing some ideas on the table here :)

[Mom2four85]

typo sorry - that should be Now I just have to find out what caused my problems :P

[Mom2four85]

Thank you for the reply =)  

I will make sure I ask the dr just to be sure about those 2 things.  Now I just have to find out what my problems =)

[CCF HeartMD-1]

I don't really use the Boston Criteria.  Honestly, if you have a low EF, you have cardiomyopathy or heart failure.  In your case it is non-ischemic.  Most likely the etiology is due to your PVC's, conduction abnormality, etc.  However, like I said earlier, sarcoidosis and amyloidosis could be rare causes.  There are many, many reasons for low voltage on an EKG including large breast tissue, obesity, hypothyroidism, an infiltrate or restrictive cardiomyopathy (amyloid or sarcoid included), a past heart attack, etc. the list goes on.  Most likely your low voltage is due to your breast tissue but I still think you should be screened for sarcoid and amyoid.  Although, now that I think about it both of those would likely show up on an MRI and you have had that study which was essentially normal.  So, you probably don't have either.  

[Mom2four85]

Sorry for asking so many questions but I have a follow up.  One of dr's put a link for the Boston Criteria for Diagnosing Heart Failure; is that still accurate information for diagnosing HF/CHF?

Do you know how accurate this is? "Low voltage on the ECG in association with conduction disturbances may suggest the presence of amyloidosis"  every ekg I have says Low Voltage QRS; is this what it's referring to? I was told this was due to being a larger breasted female.

My HF score just on test results alone was 9, without my doctor's notes, exam or input - so maybe a new doctor will listen when I show him this =)

Category I: history [4 pts]
Rest dyspnea                                  
Orthopnea
Dyspnea while walking on level area
Dyspnea while climbing

Category II: physical examination  [2 pts]
Heart rate abnormality (1 point if 91 to 110 beats per min; 2 points if more than 110 beats per min)

Category III: chest radiography  [3 pts]
Cardiothoracic ratio greater than 0.50    [7/26/2009 xray & ct]
[Cardiomegaly is usually manifested by the presence of an increased cardiothoracic ratio (greater than 0.50) on a posteroanterior view]                                      

[Mom2four85]

I've been told I have a very complex case; stumped many dr's and after #9 I still am no closer to an answer than I was in June 2009 when I first went to the dr.  If dr#10 isn't the charm Friday - I'm driving the 4 1/2 hours to Cleveland Clinic - I want answers and some relief.

thanks for the reply I appreciate your kind words; if you want to know more please feel free to look at my profile and journals I have most of my stuff listed there under test results.

Here's the Treadmill Stress Test: (not nuclear)

7/6/2009 Stress test:  4:55 min test
Resting - Sinus rhythm with slow R wave progression in the precordial leads
Stress - Frequent pvc's w/ 2 PVC couplets and 1 PVC triplet in recovery [1 min]
Sinus Tachycardia with no signifiant ST-T wave changes
QRS segment of PVC's narrowed substantially with exercise, widening again in recovery (180 ms to 80 ms)
BP - 130/70 - 150/90

Heart rate response: resting 74 bpm, peak 154 bpm, 87% age predicted maximum. 1 min into recovery heart rate decreased to 121 bpm
Functional aerobic impairment of 35% 6 mETS achieved
Increasing Dyspnea was noted with exercise stress as well as increasing dizziness.  Nausea was noted in recovery and I fainted

let me know if you have any other questions =)

[Sunspot00]

I am so sorry that you must endure so much anxiety. Your symptoms sound complex. Are you in pain?  If you do not mind, I would like to ask you a question. What was the result of your stress test? When was it? What kind was it?  Thank you for any response you might offer.

[Mom2four85]

yes NCS Neurocardiogenic Syncope and OI Orthostatic Intolerance, I'm sorry I should have typed it out.

This is where I get confused, because dr's have told me my cardiac issues and fainting are connected because my Tilt test showed when I faint my bp tanked [profound bradycardia] and my heart stopped.

NCS - In most patients with any evidence of previously known heart disease, it is likely that  syncope is related to a cardiac arrhythmia, usually VT.  I've had VT runs caught on tests that I've had and confirmed during my EPS after my TTT. Yet, I had no previous evidence of heart disease and did not develop anything structural until after my ablation, which is when they did my cardiac MRI and Cath along with a pacemaker/icd implant.

If it were sarcoidosis or amyloidosis wouldn't they have been seen on one of the tests I've had, or is there any conclusive test that can diagnose either of these?

I did have someone else suggest sarcoidosis because I had Group B streptococcus on 11/8/1997; [blood sepsis]; 11/28/2005 – Baseball sized lump under left arm [sonogram was normal]; 12/9/2004 Enlarged Liver, which was diffusely echogenic [normal blood test & cholesterol]; 7/26/2009 Cardiomegaly of the heart and Vascular crowding on Xrays and CT.

My neurologist did suggest something autoimmune in February 2010 and did several tests, but they were all negative.  I'm going to read more on these and talk to my dr this Friday, if they're rare they may not even been on his list of possibilities.

Thank you again so much for your response; I know I have a very complex case and I am desperate to find some answers.

[is_something_wrong]

Neurocardiogenic syncope and orthostatic intolerance I think

[CCF HeartMD-1]

Rare disorders that we would sometimes consider would be sarcoidosis or amyloidosis which can also cause VT.  

Lisinopril is used as an anti-hypertensive so yes it will lower your blood pressure some.  What are the acronyms for NCS and OI? Orthostatic something I presume...

[Mom2four85]

sorry just a follow up - I have had so many tests with results I may not have included everything.

It's overwhelming just reading it but here's the link to my journal with it all listed if that would be any help:  http://www.medhelp.org/user_journals/show/258977/Test--Surgery-Results-updated-January-2011?personal_page_id=861727

[Mom2four85]

Thank you so much for taking the time to reply.

My dr at the time did testing for ARVD but the test was inconclusive and nothing pointed to ARVD but wall motion degredation made it hard for the results to be accurate they said. He said it may be something rare I have and he really didn't know what it was, but did no further testing.  I contacted Dr. Brugada and he said my tests were negative for that syndrome.

Is there anything I can mention to my dr that comes to mind that may point him in the right direction? I know SSS is rare, but could that be the cause? What could cause both  systolic and diastolic elements of HF?

What would Lisinopril do my bp? I do have NCS and OI with hypotension.

[CCF HeartMD-1]

I would say that you have CHF or HR because your EF is low at 40%.  A normal EF (ejection fraction) is > 55% and normal is between 55-60%.  I cannot tell you exactly why your heart is weak specifically because I don't have enough information.  Congestive heart failure (CHF) and heart failure (HF) are synonomous.  People can have diastolic heart failure (where the EF is normal) or systolic heart failure and rarely, some people have both.  Sounds like you have some mild systolic heart failure with your mildly depressed EF and this would likely be the reason for your elevated LVEDP although when you describe your heart muscle being thick you may have an element of diastolic heart failure also.  

We don't normally do heart biopsies unless we think a patient may have a rare disorder because it can be a risky procedure.  The other medicine you should be on with a lower EF would be Lisinopril (an ace-inhibitor) if your blood pressure could tolerate it because it in addition to BB's can improve the EF.

Hope this helps.