Please help with my falling EF

[threeboys]

I have PPCM, I am 6.5 yrs out and my EF is around 45%  
on my last Echo, it showed I had all of these
with
the mild diastolic dysfuntion,
mild systolic dysfuncton,
and mild concentric ventricular hypertrophy.
and lastly mild aortic valve sclerosis

is it comparable to the 45% EF? Or is it something I still need to watch for.

Thank you very much..


I was just switched to Coreg becuase the 200mg of Toprol XL wqasn't working anymore. I am also on enalapril, coumadin(stroke)
HCTZ andpotassium.

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Last edited by amyls : Today at 07:45 AM.

[Forum-M.D.-MJM]

Hello,
I am sorry to hear about your peripartum cardiomyopathy.  The mainstay treatment is to not get pregnant again.  After that, stardard heart failure theray is the standard of care.  It should consist of:
1. Beta blocker (like Coreg and Metop/Toprol XL).  The maximum tolerated dose is best.  For most people that is coreg 25 mg po bid.
2. ACEI or ARB if ACEI is not tolerated (like Enalapril).  That also should be the maximum tolerated dose.
In general, we only use digoxin or diuretics like lasix if needed for symptoms.  There is no survival benefit with them, only decreased symptoms.

There is a +/- 5% given with most echocardiogram interpretations, meaning if your EF is 45% that means 40-50%.  Don't take small variations in the number seriously as this can simply be inter observer variability.

I hope this helps.  Thanks for posting.

[mary2]

You EF is just mildly reduced (mildly is around 45-50 %) and PPCM has a quite good prognosis. I would think if it is stable to 6.5 years that's a good sign.

I would think you are stable and doing well. Meds sound right except for coumadin. Do you have atrial fibrillation or history of clots?

Hope the doc with give you some words of support and you will not have to worry any more

[threeboys]

Actually my EF has fallen since last yr, which is why I am concerned. My EF has never been recovered, but I was steady on the meds until last Nov. I was on toprol XL 200mg, and it stopped working, my HR was over 120 resting. They switched me to Coreg, and it seems to help with the fast HR.

I know 45% is fine, I am just concerned with the drop and the diastolic dysfunction.

[threeboys]

I was on toprol XL for 6.5 years, then it stopped working. I am on Coreg 25 mg. BID and enalapril as well. I am on the coumadin for a stroke I had the same time I was diagnosed with the PPCM. I ma on the HCTZ and potassium for my kidneys, and my hyperparatyroidism.

thank you again...I know 45% is fine, it's just scares me when it falls.

amy

[Flycaster305]

My ejection fraction was in the 30% range after two heart attacks and six stents in a year, started taking Coreg, 3.125 mg twice a day, and that daily dose was increased to 25 mg twice a day.  Every time it was increased I really struggled with fatigue and exercise was really tough to do, but I adjusted, and a very recent angioplasty procedure to open up a blockage that can't accept a stent measured my EF at 49%.  I believe that in my case Coreg is a wonder drug, but expect some really rough symptoms as your body accepts it.  I'm male, much older than you, we have different situations.  Best wishes to you.  

[Fionajnz]

Yay, I finally met someone else who had PPCM!!!  How weird is that celebrating knowing someone else who has had the condition.  I am sorry to hear that your EF is falling.  45% is the level I was when I was dx, but they strongly suspected I had had it thru the third trimester and definitely during the delivery, so it was estimated to be lower - they would not discharge me after delivery because of my tachycardia and slight SOB which got much more severe, but they only thought of asthma and thyroid issues, not heart issues.  I was tachy for mths and kept mentioning it and my SOB but the OB just put it down to pg.  

Sounds like the coreg may make the difference, but it will take a while for it to take effect.  Its taken me 17mths to get back to 60-65% EF, so to compare a falling EF, you need to think was it the same machine, tech, reader etc, how realistic is it to expect a huge improvement.  The one thing I would suggest is getting a second opinion and another ECHO. We are still looking for answers to some of my health puzzle 17 mths out.  

I also was on heparin and then coumadin after DX.  I still have a lot of weird symptoms but my most significant was SEVERE SOB for mths, I failed pulmonary eval after pulmonary eval for mths.  Not just a slight failure, a huge amt of lost lung function and I could barely walk 10 steps without being breathless for Hour upon Hour.  They figured a probable PE (pulmonary embolism) that they suspected but could not see.  My D Dimer was elevated and some other clinical tests came back weird like my muscle enzymes and my liver and kidneys went sth too big time.

This happened with my third pg.  The biggest issue I have left over is a leaky mitral valve, but its mild to moderate at this point.  My meds for the PPCM were diovan, atenolol (I was allergic to enalapril), heparin and then coumadin for a few mths, plus lasix when I put on weight that I know is water.  I also have to be careful at altitude.  I also do the potassium as the lasix screws with my levels and strips the electrolytes.

Just thinking over your post, I would really encourage you to get that second opinion asap, then your mind will rest a bit easier, plus if your heart is doing something odd, then you will be on top of the issues sooner.

I cannot say how much I appreciate you posting.

GL,  

Fiona

[EchoTech]

The main concern should be does the reduced EF affect your quality of life?  If it doesn't then really, it's just a number to you.  There is an aerobics instructor who has an EF of 12%.  That isn't a mistype, it's that low.  She still does what she wants, how she wants.  Some folks tend to tolerate lower EFs better than others, and I hope you are one of those people.  You will be wtched for the rest of your life unless your heart gets back to normal, but even then they may still follow up on you.  If the EF is still falling and you feel worse, then you would presumably need to get your medicine regimn tuned up.  The diastolic dysfunction can be  a side effect of aging or could be secondary to the cardiomyopathy.  The sclerotic aortic valve is an age related change thing too.

Good night, and good luck Amy.

[threeboys]

I just turned 40, so I am not sure these are age related. I had the PPCM at 33..along with the stroke. I have delt with this for almost 7 yrs and have never let it get me down..Not only was I dealing with the CHF and stroke, but to be told no more kids at the same time...it's a lot to deal with. But it isn't something that I ever let get me down.  I just wanted to know if I should be watching those.  

thank-you..

[threeboys]

I'm sorry you had to deal with PPCM too. It's a shock to find out when you've just had a baby. I had to have an e-mergency c-sect at 35 weeks becuase I had preeclamsia. When my body didn't recover they did all sorts of test, from pnumonia to PE..I was tested for everything. Finally on Friday my OB's partner made cardiology come down to the OB floor.(they were going to wait 'til monday.) It was then they found the PPCM my EF was 20%,and I was in CHF. At 28 weeks I was in the hospital because my heart ws in A-Fib. They did and ECHO then and my EF was 61%, so in just 7 weeks It fell to that. I was moved to the CCU...and then I had the stroke...so thats why I'm on coumadin. Ater 2 weeks of being in the hospital, I fianlly begged to go home my cardio let me go a home a couple days early with the promise to reutn for an INR check. I lost like 40 pounds of fluid.

But here I am 6.5 years later....If you'd like to e-mail me..pls do!

[EchoTech]

Middle age is typically when diastolic dysfunction starts showing up in people.  Along with the cardiomyopathy, I'm not really surprised that you would have that.  You will most likely get another echo to watch 1. the EF and 2. the left ventricualr hypertrophy (LVH).  I hope the LVH is not secondary to hypertension.  If it is, I would beg of you to get it under control in a very aggressive manner.  It would be the best thing for you, especially since you've had a stroke.  The other things that you mentioned in the echo aren't anything that you can control, nor should you be worried about them at this time or in the near future (5-10 years).

Good night and good luck.

[threeboys]

Thank you for the concerns, I do not have hypertention, the only time my BP has ever been high was with the preeclamsia almost 7 yrs ago. I had a stroke from one of 3 things..my APS, the CHF, or the emergency c-sect. They are not sure where it came from. I am on coumadin because of the APS and the stroke.

Thank you for your response

[Fionajnz]

Would really appreciate emailing you.

Mine is fionajnz at gmail dot com.

You need to replace the written words with the symbols, writing it this way makes less easy for spam to find me.

I so know how you feel about the whole illness post newborn.  It was horrendous but like you, I have seldom let it get me down - too busy with the kids and it did not seem fair to add more burden to an already lousy situation.  Fortunately I have an AWESOME PCP and bunch of specialists, helped by a personal family friend who is a local PCP and helped us tease out the important stuff.

Thanks for your input.  Hope to em soon.  HOpe you see this post, cannot think how else to email.

Fiona

[anacyde]

I'm also a PPCM mom.

What was your EF before the 45%?  I know many PPCMers see variations +/- 5% or so and it really doesn't mean anything, though we do tend to freak out.  Systolic function is directly proportional to your ejection fraction - hence, lower EF correlates with systolic dysfunction.

Perhaps the more important number for you would be your fractional shortening (FS).  You can calculate this yourself if you know your end systolic and end diastolic dimensions.  The way to calculate it is EDD - ESD then divide that number by your EDD.

Ex: If your EDD is 4.6 and your ESD is 2.6, you get 2.0.  2.0 divided by 4.6 gives you a fractional shortening of 43%.  Above 30% is the goal.

[threeboys]

Actually my Fractional Shortening is 27%. So all of that in addition to the fall kind of freaked me out. I've been dealing with this for over 6 yrs..you would think I would know better!

Thanks!

[threeboys]

that should have been to you.

[anacyde]

Hey :)  My cardiologist was okay with my SF at 25%.  Of course over 30% is what is ideal, but even at 27 you're very close and that's a good function.  I do understand your concerns though.  It sounds like you have been through a lot.  PPCM moms are pretty tough though!  Hang in there.  I'm sending good thoughts your way for continued improvement.  It can happen!

[threeboys]

Thanks...I usually don't let it get me down. But you now..the occassion YIKES keeps you on your toes. I tend to think too much.

We are strong! When were you diagnosed?

[anacyde]

Last March.  Celebrated with green cake this year since I have improved :)  Was kind of fun.  Never had green cake before, lol