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CandyR1018
07-02-2007, 02:14 PM
Hello Dr. Fett,

I am new here and this board may save my sanity. I was diagnosed with PPCM on 01-26-07 3 days after the birth of my first son. I left the hospital with the idea that in 6 months to a year it would be as though nothing ever happened to me.

I am now almost 6 months into it, left my old cardiologist because he was pacifying me as if i were an 80 year old woman ready to die. So I have this new cardiologist here in Raleigh, NC who I adore, Dr. James Falsone, and he just ran a cardiolite stress test. He says that my EKG looked WONDERFUL, no blockages, but that the pictures were showing my EF as 30%. He wants to continue me on the meds, but says that if I am not better in 3 months that we need to consider a defibrillator such as a pacemaker. Needless to say that I was shocked to hear the word pacemaker in my 36 years old ears. But now that I have recovered from that shock and have started research i'm seeing information about both pacemakers, ICD's and PaceMaker with ICD. Could you describe what the differences are in these devices?

I'm currently taking:
Toprol: 25MG
Potassium CL 20MEQ Tab
Aldactone 50 Mg 2X a day
Magnesium Oxide 400MG Tab 2X a day
Vasotec 5 mg 2X a day
Iron 28mg 2X a day

I have been on these for almost 6 months and apparently there has been no improvement in my EF% even though I am feeling great and have resumed my normal life PLUS adding taking care of a new born baby.

How can my EF not be any better when I am feeling so much better?

JAMESFETT
07-02-2007, 03:49 PM
Thank you for sharing your story. Let me in turn share my impressions, and at the same time assure you that I respect your fine cardiologist, and offer these considerations for you to discuss with him and to work out what may seem best, with a good chance of helping you see more improvement.

1)You feel good and that is extremely important, especially as you consider increasing some medications with a very gradual rate of increase so that side effects do not cause you to feel worse. Importantly, your treatment includes 3 medications that are excellent for recovery, namely a beta-blocker (Toprol or metoprolol), an ACE-inhhibitor (Vasotec or enalopril) and aldactone (spironolactone). You do have the potential to increase your heart function (EF) by adjustments of meds. Let me deal with them one at a time:
a)Toprol. Are you on the extended release or XL toprol? Because of the short duration of action of the plain metoprolol it is advisable to use the extended release--succinate, not proprionate--and your dosage of metoprolol extended release can be increased very gradually to a maximum of 200 mg daily. If with discussions with your cardiologist you do increase it is important to do it in small increments, such as 25 mg every 1 to 2 weeks. An excellent alternative beta-blocker is carvedilol (Coreg in USA), possibly with some additional advantages in that it is documented do prevent or partially correct the undesirable and less efficient remodeling that has occurred with the left ventricle in the process of developing a dilated cardiomyopathy.
b)Vasotec or enalopril. Also very important because aside from the hemodynamic effects of that and beta-blockers there is a side-benefit to help normalize an overactive immune system that has produced proinflammatory cytokines in PPCM. Max dosage of enalopril is 20 mg twice daily; thus you have room to increase, but again, if you do, it should be at small increments.
c)Aldactone or spironolactone. Also beneficial in heart failure in terms of survival and recovery. I usually do not exceed 50 mg per day, and more often stay at 25 mg/day, in order to prevent too high levels of potassium, which I am sure you are monitoring closely, especially since you are also on supplemental potassium. You do not want to develop hyperkalemia or excess potassium, and aldactone does block the excretion of potassium by the kidneys.

2)I would certainly like to see your EF at greater than 30 % at 5 to 6 months post-diagnosis. I have seen many women with PPCM having an EF of 30 %, and still feel perfectly fine. And maybe you will see a jump with the adjustment of medications. You may want to look at the thread on my Q & A forum about the investigation of delayed recovery, which I become concerned about if an EF of 40 to 45 has not been reached by 3 to 6 months post-diagnosis. Three tests may help with knowing if other interventions are needed: They are 1-blood B-type natriuretic peptide to know if the left ventricle is still stressed; 2-blood high sensitivity C-Reactive Protein, to see if there is a clue about an inflammatory process in your heart (level >5 to 10 mg/liter); and 3-cardiac magnetic resonance imaging with gadolinium enhancement to have a clue if there is an inflammatory cardiomyopathy. This is important to know about if one is considering an endomyocardial biopsy including PCR testing for the presence of viral particles.

3)I think that what your cardiologist is talking about in terms of an implantable defibrillator (ICD) is actually the same as a pacemaker, since from your report of EKG, your rhythm is normal, and you do not need a pacer--unless you should have a bad rhythm develop, which I surely hope you do not. Do you need an ICD? Usually that is reserved for those in the EF range of 20 to 25 % or lower; and it appears you are above that and on the way to even better than that. Something to review with your cardiologist.

Sorry for the long response, but there are several points to consider with your cardiologist. If I can be of help to clarify, please let me know. Best wishes. The suggestions I offer come from experience with treating scores of PPCM patients and extensively studying the medical literature on the subject as well as continuing research.

JD

JAMESFETT
07-05-2007, 01:28 PM
I hope you are doing well, and making progress.

JD

JAMESFETT
07-07-2007, 09:04 AM
I continue to be concerned about your progress, and hope you are well.

JD

CandyR1018
07-10-2007, 08:08 AM
After reading your post and other posts from other ladies, I scheduled a follow up appointment with my cardiologist for Thursday 07-12 to discuss the results from my stress test and the different ideas you presented about increasing my meds.

My primary physician told me yesterday that women present huge challenges for cardiologists in that some times the pictures do not paint an accurate picture of what truly may be going on with us? I found that interesting.

Thanks for checking in w/ me!

Candy