Tired and frustrated, Need advice Dr. Fett

[4girlsmama]

I have been feeling crappy for months now. I was hospitalized in March when I was passing out from PVC's. A stresss echo and multiple tests later showed that my EF is still at 43% and the holter is showing 3000 pvc's a day, which is far lower than my 8,000 in 2008. My electrophysiologist is hesitant to re-do my ablation at this point and thinks my cardiologist should be able to manage my symptoms with medications. They have increased my lasix to 40 mg twice a day, with 10meq of potassium twice a day as well as increasing my lisinopril to 10 mg a day, along with my 40mg of Coreg CR and 12.5 mg of spirinolactone. I still am fluid saturated and having atrial flutters to boot. What should I be asking my cardiologist or is this just normal? Am I ever going to fully recover? It has been almost four years since I've been getting treated. I did go 3 years without treatment or proper diagnosis, is that damage irreprable?

Tillie

[JAMESFETT]

You are still within a "window of opportunity" to gain heart function and to see your LVEF increase.

Have you had a cardiac MRI with gadolinium contrast? With late responders the MRI may help to identify either ongoing inflammatory process (early gadolinium enhancement) or evidence of fibrosis/scarring (late gadolinium enhancement). Scarring may limit the ability to make more gains, but inflammation is treatable with promise of gains. The increased lisinopril and carvedilol are certainly good, and time will tell how much response you experience.

After MRI, sometimes slow responders benefit from information gained by endomyocardial biopsy. Have you ever had that done? The reason for that is to be sure that there is no other cause(s) for your cardiomyopathy. One example of this is the persistent presence of virus, as determined by the PCR (polymerase chain reaction) testing for the viruses that can cause myocarditis, namely adenovirus, coxsackievirus, parvovirus B19, E-B virus, human herpesvirus 6, cytomegalovirus. That biopsy tissue must be handled by quick freeze rather than to be fixed in formalin preservative.

Best wishes,

JD

[4girlsmama]

Thank you Dr. Fett. I will be asking about these tomorrow! I had great results when they did my first ablation. My Pvc's dropped from 8,000 to 1 and my ef increased from 35% TO 43%, But nothing since.

[4girlsmama]

Dr. Fett,
I went and saw my cardiologist and left feeling very frustrated and disappointed. I have had the MRI contrast test and it showed minimal scarring which is a good thing. I was told that a biopsy wasn't necessary because I've shown improvement. The Dr. also cited study after study for reasons why I am on my current meds, something that I already undersood. Then I was basically told to quit complaining about the pvc's, shortness or breath, and fatigue because not everyone hits full recovery and I should just accept that I am probably one of those people.
So I left with no change in meds and a follow up with him and my electryphysiologist in 6 months. In the meantime, I have passed out from diizziness twice in the last week. Is there something I may be missing? I know the meds can cause dizziness, but I've never passed out from it.

[JAMESFETT]

Could you send me your cardiac MRI report? If your B.P. tolerates it, you still have room to increase your lisinopril and your carvedilol, as worked out with your cardiologist. If I were you, I would consider seeking a second opinion, and not be satisfied with "status quo."

Also, I think there is no harm in being sure that some critical micronutrients are in adequate supply. Following an article in American Heart Journal 2002;143:1092-100, about nutritional supplements, for those who are slow to recover, it may be a good idea to supplement with Coenzyme Q10, Selenium, Chromium, and Zinc, because these may boost the immune system, an important element in PPCM since there is evidence of immune system dysfunction.

JD

[4girlsmama]

I will try and get a copy of my MRI report. Also, I am looking into going to Intermountain Memorial Clinic. I participated in their PPCM study, but at the time my insurance didn't cover them, not sure if it does now either.

[JAMESFETT]

Intermountain works with us at Peripartum Cardiomyopathy Network (PCN) in the IPAC study (Investigation of Pregnancy-Associated Cardiomyopathy). That will be good if you can consult with them.

JD