Is it safe?

[SarahsMom]

To all the courageous women that have had a post-PPCM baby,

As you may or may not know, my husband and I are considering another baby. I was diagnosed in Feb. 2004 with an ef of 25%. I was "recovered" with an EF of 55% 6 months later. I've been off all medication for 6 months and my echo showed my heart was strong and still normal after being off the med's.

My question is....If I do decide to have another, I want to go back to taking the coreg / lisiniprol....are these safe for the baby? I've been researching and I can't find any studies on the effects of these med's on the fetus.

Thanks,
Kari

[carrob]

Kari,

Through all of our dilemna's over the last few months.....ALL of my docs have said that it's OK to stay on Coreg. In fact, it's the one thing they seem to agree on.......mainly because the benefits out-number the risks.

If I were you and had made a prompt recovery like you have, I'd definitely go for it. You're young and strong and seem to have a good support system. And, they will watch you very closely.

Good luck with your decision.

[SarahsMom]

Thanks Carla! You're so supportive. You've been through this, you know how hard it is. It's especially hard because I don't have the blessing of my cardiologist. I guess he HAS to say "NO" so he's covered in case something happens.....and that "something happens" is what scares me...what if???? My cardiologist says there's just not enough evidence to support that I'd be fine, so he's a (doctor) and lives by EMPERICAL / PROVEN data and I understand that.

Oh well, still deciding.....I'll let you know!

Love,
Kari

(In my HEART, I know I'll be fine...but, It's still a difficult decision as I have a little girl that REALLY needs a Mommy).

[mikeyandBellesmommy]

I'll give you my honest opinion :)

1. I feel Coreg should be taken for ALL PPCM moms that have recovered and have another, it seems to me that a majority of women that remained on the coreg DID NOT have reoccurence vs, those on NO meds..

2. I do think there is a chance of reoccurrence even if you "feel" you'll be OK. I felt I'd be OK and I DID have a reoccurrence..

3. I DID have a reoccurence and I am fine now, I will not lie to you and say i wasnt scared or upset and that my docs weren't ready for additional decline, but my docs took action and I never went below 40% and now I am back up to 50-60%

4. I will say I was at 65% pre mikey and I felt better than I do now, but that could also be stress..

5. I am back on meds too just vasotec but I was off meds before..

6. I also will say I would not change anything, Mikey is amazing and I am glad I had him, he was well worth it..

7. and I will say statistically you are in the ++++ outcome percentage

8. and I think you should go for it if that is what you really want once you weigh your options, it is a personal decision that you and your family have to make but...

I do think some women who have this want to cheer on other woman let them know that it will be fine that they will be fine and to go for it

I hate to say it but that just isn't true, there IS a real chance of reoccurrence..I was recovered 3 months out at 65% and off all meds I was statistically not supposed to have a reoccurrence and I did...

Just don't go into it blindly, which I am SURE you wouldn't do, I don't want to freak you out or scare you, but I do want you to see that everything ISN"T ok with every woman that has gone on to have another..

I hope you areen't mad at me becuase I don't want to sound like the evil person gettign you upset I just want you to hear both sides of the story not just the I had the perfect seond pregnancy stories..

Good luck and please feel free to e mail me with any questions any time!

[SarahsMom]

Carianne,

No, not mad at all! I'm glad you're being honest. I know there is a "REAL" chance of reoccurance and I want to be prepared for EVERYTHING that can happen. I'm just so torn on what to do. I just wish I had a crystal ball that told me the future!!!!!

Carrianne, were you on Coreg?

Thanks for your honesty...I really appreciate it! I hope you continue to heal and you feel as good as "pre-Mikey"

Love,
Kari

[melissamph]

Carianne,

What you shared was wonderful and informative! Thanks for doing that for all of the ladies here. It is a blessing to many who read it and get the "real heads up"! Thanks again!

[mikeyandBellesmommy]

Thanks Melissa and Sarah I was so worried when I psoted it I would make someone mad, LOl! ANyway NO I wasn't on coreg and I think I should have been.

I WILL say though, My PG with Mikey was awesome other then the reoccurence. Maybe God knew or something, I did have alot of morning sickness, but I looked so cute and felt great up until the end.. My PG with Belle swas nightmare from the beginning..

Good luck with your decision

[naturalmama1012]

I would definitely take a beta blocker as a precaution... my cardio also feels very strongly about this, she thinks it may give the heart some extra support through all the hemodynamic changes. In my case she chose Toprol XL because she felt there wasn't enough data on Coreg in pg (and more on the Toprol) but I know of many women who have been on the Coreg and everything was just fine.

You cannot take Lisinopril or any of the ace inhibitors while pg. However, my cardio did switch me from that to a combination of hydralazine and imdur, which seemed to work just fine. I am on Vasotec now that I am no longer pg.

Interestingly, despite my drop to 30% EF, my OB strongly feels that if my EF recovers I could still go on to have more... and my cardio will not say absolutely not. I think we are finding more and more that each case is very individual but that in general, with a recovered EF you should have little or no complications.

[carriep]

My cardio also said the problem with this condition is that it is not text book in nature. The maternal fetal specialist I consulted said his experience with the condition mimicked the studies (Elykam) and I have a 7-30% chance of reoccurance with it being towards the lesser end.
From what I understand about Coreg, it has been shown to impact the growth of the fetus (ie born small for gestational age), but babies catch up quickly once born. My cardio and high risk both said only if I show a decline in ef would I be put on anything and it would be coreg/carvedol.
We did decide to try and I could be preggers as we speak. I know its a chance we are taking and you certainly are realistic Carianne...one needs to be. But you are also proof that having an aggressive dr improved your outcome and Mikey was worth the scare to you. But as I said, not every case is textbook and I could be on a transplant list next time. Let's let God worry about that one:)

[SusanD]

Carianne...I just want to say once again that your detailed and honest and insightful posts are *very* helpful to all these women who are cnosidering a post-PPCM baby. Thanks for all of your info and all you do.

And to the original poster, all of the ACE inhibitors that I know of are supposedly contraindicated during pg and are known teratogens.

[miachic]

Question for Carrianne - When you say to be on a beta blocker, do you mean BEFORE pregnancy or during pregnancy or both? I am currently not on a beta blocker with a recovered EF of 54% at 4.5 pp (no meds). I am wondering if you mean it should be started before TTC again. We wouldn't be for awhile but was just curious. I would definitely be on during pregnancy if we got to that point.

Emily
Isaac 04/23/05

[Kimberly Sidden]

Hello all!! I am a new member, PPCM survivor, and mother of a beautiful 20 month old little girl!! I was 38 when I delivered Baylee and just turned 40 a few weeks ago and found out last week, that I am pregnant again. As I started searching the web to find out more about PPCM, I really started getting scared about this pregnancy. I so want to be here to see my little girl grow up! I gained approximately 80 lbs with Baylee, about 40 of it was fluid, my blood pressure was 180/120 6 days after delivery, EF of 40%. I was on coreg and lisinipril from January 04 until May 04. Had a follow up echogram in August 05 and my EF is in the 60's %. Reading this message board I have the following questions: what is CHF? when were you diagnosed with PPCM? how has your cardiologist managed your pregnancy this time? for second pregnancy mom's, are you taking coreg without showing symptons? what are some good tests to request? Good questions to ask my OB? Thank you so much for this web site and message board. It is really helping me cope!!!

[SarahsMom]

Hi Kimberly,

Welcome and congratulations on your pregnancy. I'm pregnant with my post PPCM baby (I'm 8 weeks along).

1. CHF = Congestive Heart Failure
2. I was diagnosed (2) days after the birth of my daughter - she was induced at 37 weeks due to high blood pressure.
3. I see the cardiologist every 4 weeks. He'll do an echo after trimester to ensure my heart is holding up. He'll also do an BNP blood test every trimester.
4. I'm on 50mg's of Toprol / Magnesium / calcium / baby asprin....I'm currently showing no symptoms and my cardiologist is confident that it won't happen again (that remains to be seen).
5. Dobutine Stress Test (it's how your heart responds under stress), BNP, Echocardiogram, EKG, 24 hour urine test/protein (you'll need to get some baselines)

Hope the above helps! Please let me know if you need anything else. You can e-mail me at my personal e-mail addres atkar@hmm21.com

Love,
Kari