Understanding PPCM

[JAMESFETT]

Consider a stress echo if you are thinking of any future pregnancy and you have returned to normal LVEF (55 % or more).

JD

[Dani & Jaden]

Hi, my name is Danielle and I was diagnosed 8/9/08. I'm still wondering (actually panicing) about prognosis, mortality, etc. I've been on disability since last April and am wondering if any of you have been successful with an appeal. I read all these great stories of all you strong, strong woman and wonder how in the heck you are all managing with kids, husbands, your condition/syptoms and still working a 40 hour work week.. I'm still out of breath taking a shower, changing my 17 month old's diaper, walking up & down stairs.. How do you all do it???? my EF is 40%, however i had a stress echo this past tuesday and it went up to approx. 55% (which is confusing as well)...Any replies would be greatly appreciated!!! Thank you!!!

[JAMESFETT]

Best wishes for continuing improvement. What medications are you taking? I suggest you also post on the message forum, "General Support" and you are likely to have more of your "sisters" see it and respond.

JD

[LovinLife]

I see you sister I think things get easier with time and with the rise of your EF. I have always stayed home with my kids and can rest when needed. These other warriors will have to speak for themselves. I don't see how they do it either! It sure does make me proud!

[4girlsmama]

It is difficult when you are chasing a little one. I have always had to work full time and my EF is hanging out around 45-47% these days. I find it key to know your limits and rest when you are starting to get fatigued. LovinLife is right, it does get easier in time. Hang in there and make sure you get plenty of life.

[Dani & Jaden]

Thanks for all your kind words of support. It's comforting to know that there are other women out there who understand what my family is going through

[JAMESFETT]

Thank you for posting your medications. It appears that you are not yet 2 years out from diagnosis; so you still have time for improvement. Working with your cardiologist, you have the possibility of helping reach better heart function by:
1)considering increasing your carvedilol (Coreg) since you are on a very low dosage, 1/4 of maximum, if tolerated and needed.
2)considering going to a longer-acting ACE-I (such as lisinopril) since the captopril is one of the earliest ACE-I, requires multiple daily dosages, and your current dosage is also very low.

In the message forum, "PPCM for patients and health professionals," I have posted a message at the top about what one could do if there is recovery delay:

What Might Be Done to Improve Systolic Heart Function in Delayed Recovery* ("Slow Responder") of Peripartum Cardiomyopathy?

*Definition of “delayed recovery" or "Slow Responder": Left ventricular ejection fraction (LVEF) <25-30 % at 2months post-diagnosis or <35 to 40 % at 4 months post-diagnosis and/or LVEF <45 % at 6 months post-diagnosis.

First, review data to confirm that all criteria are met for a diagnosis of peripartum cardiomyopathy (PPCM) and to be sure that other causes of heart failure have been excluded.

Treatment regimen should include both ACE-Inhibitors (ACE-I) and beta-blockers (BB) at maximum tolerated dosages. If that dosage has not yet been reached, very slow increases, one medicine at a time and at approximately two-week intervals, should be attempted, until maximum dosage or limit of tolerance of side-effects has been reached.

Some laboratory testing or scans may indicate ongoing activity of disease:
a)Plasma high sensivity-C-Reactive Protein (hsCRP), in excess of 5 mg/liter may indicate ongoing inflammatory process.
b)Plasma B-type Natriuretic Peptide (BNP) above established “cut-off” level may indicate continuing stress on left ventricle.
c)Cardiac magnetic resonance imaging (CMR), with gadolinium enhancement, may indicate inflammatory process and/or fibrosis.

If these tests indicate evidence of ongoing activity of disease, consideration can be given to endomyocardial biopsy (EMB). EMB tissue should be preserved both in formalin and with liquid nitrogen “quick-freeze” so as to be available for H & E staining, immunohistochemical staining, and polymerase chain reaction testing for DNA/RNA viral genômes.

Because of the number of women who still fail to reach recovery levels, it is important to give consideration on a research basis protocol to alternative methods of treatment:
a)Intravenous immunoglobulin therapy (IVIG) in the acute fulminant and deteriorating situation (earlier studies = no benefit).
b)Immunoabsorption, excellent potential.
c)Anti-viral treatment when tissue viral PCR-positive.
d)Immune suppression when tissue viral PCR-negative.
e)Prolactin inhibition when elevated plasma Cathepsin-D, abnormally elevated plasma Prolactin 23-kDa, and/or presence of plasma Prolactin-16 kDa (basic foundational research still required regarding the latter three, but so far encouraging prospects for some cases of PPCM).

----James D. Fett, MD, 1 August 2009

[Dani & Jaden]

Dear Dr. Fett,
Thank you so much for your message and your concern, I feel as though I have a new guardian angel As I mentioned on my message, I had an appt with Dr. Uri Elkayam with USC Internal Medicine for this morning 1/25, but they cancelled my appt and said that he wasn't seeing patients. My current Cardiologist, Dr. M. Leila Rasouli was anxious to hear what he would say re: my condition/test results and to see if increasing my meds would be ok at this time, also considering adding Digoxin as well, as another Cardiologist had suggested. I did a stress echo last Tuesday, 1/19/10 and my resting EF was still around the 40% mark and treadmill EF was close to 55%, which she said was encouraging. I will pass your informative article onto her this week. Dr. Rasouli also wanted to up my Coreg but only wants to increase my meds at small increments and only one at a time to see how each one effects me (Due to my anxiety, I started Wellbutrin last month and only wanted to change one med at a time). I see her again mid February. Thank you again for your post, I really, really appreciate the info and concern....Dani

[JAMESFETT]

Thank you for the follow-up. I wish you could have seen Dr. Elkayam because I have great confidence in his opinions; however, I am sure the other cardiologist(s) will be just fine.

When the LVEF is above 30 % there is little extra benefit from digoxin, and it carries its own risk of adverse effects, especially upon increasing possibility of myocardial irritability and ventricular tachyarrhythmias. In any event, should you ever go on it, in women there may be higher risk of side effects than in men, and one is prudent to stay on the low-dose side, which is 0.125 mg per day if normal kidney function. However, it is not much used when the LVEF is above 30 %.

Captopril, as an ACE-I is one of the first (oldest) in that class if not the first, and it may also have a higher profile of adverse effects; so one of the longer acting (newer) ACE-I may be easier to take and even more effective.

Your projected increase of carvedilol sounds good to me.

I think you have very good potential to experience additional healing if you can move to the higher dosages of ACE-I and BB (of course only one at a time, and as you say, in slow increments). Best wishes.

JD