Has anyone here gotten a green light to go ahead and have a baby with pre-exsisting cardiomyopathy?

We have been given a "cautious" green light. My EF is 40% and all enlargement is gone. My Cardio says that if my heart "stays" at 40, I'll do fine. I'll keep taking my Coreg, but will have to switch from Enalapril to another "safer" BP med. However, I can keep taking the Enalapril for a while in the beginning of the pregnancy. It's dangerous at the end as it can cause kidney failure in the fetus. I've consulted with a High Risk/OB and he's also told us it's "do-able" but there will be lots of tests and monitoring. Also, he just cautioned us to the fact the my health "trumps" the baby....and if I start to decline at anytime, we have to terminate. That's what we're having a hard time with now. I go back in July and have another echo.....and, if stronger, we'll proceed with trying.

Good luck!

Wow, I wish you all the best. Please keep me posted.
Your EF is 40% now? How do you feel? Do you have any symptoms at all?
What type of myopathty do you have? Dialated? Hypotorphic ? (sp)
Take care!!
Keep in touch

I have Dilated Cardiomyopathy....most likely caused by a virus. Whatever it was came and went and is now gone. All of my enlargement is gone and I feel absolutely great. I exercise, mow the lawn.......I'd never know it. Except for the hand full of pills I take twice a day. :rolleyes:

I rarely feel bad at all, just tired on some days when the humidity is high. That seems to make me really draggy. But, I don't have swelling....anything!

Keep in touch!
Carla

That is great! I may have cardiomyopathy r/t virus. I had a cardiac arrest JUne 04. My EF was 10 percent, went to 70 percent, and now back down to 45 percent. I switched medication, Coreg and Enalapril to Topril and it caused my EF to go back down..... You can have a baby on coreg??? PLEASE KEEP ME UPDATED....we are really wanting to try, but we are afraid with my EF being so low and the medication....how old are you? I am 23 Do you have arrythmias?

Hi there!!!! It's nice to meet you...and feel free to ask me anything! I'm 37 now and my bio clock is winding down. That's why we're pushing to make these decisions. If you're only 23....you have LOTS of time to get yourself healed before you proceed. My High-Risk OB said that I will be on Coreg for the whole pregnancy.....but will have to taper off the Enalapril. I do have a few "flutters" now and then.....but I've worn the holter twice and my Cardio is not at all concerned. I seem to notice them when things are really stressful in my life and maybe if I haven't slept enough or had too much caffeine. I wish you the best. What was the time frame on your EF jump from 10% to 70%????

From June 2004 to March 2005, my EF improved!! Are you the one who went to Boston? What symptoms do you have for them to diagnose you with cardiomyopathy....did a virus attack your heart

No, I didn't go to Boston. And, yes...they "believe" it was a virus. I have no others blockages or signs of distress. I started getting really short of breath and had swelling in my ankles. They thought I had bronchitus/pneumonia....... Go figure! I really got on my local hospital when this was all over with and told them not to "ignore" these types of symptoms in young women!!! I could have died if I wouldn't have gone elsewhere.

O my

Immediately,after the birth of my son, I had a cardio myopathy and pulmonary edemas. I almost died. I was on a respirator for 5 days after it happened. It went undetected during my pregnancy. I had heart failure during my pregnancy, which caused me to swell up uncontrollably. I was in the hospital for two weeks after my newborn went home, trying to recover. I was tested for toximea, gestational diabeties, (which went undeteced until I was 8 months) and everything under the sun. They could not find the cause of my swelling.

I was also 38 at the time, with my first and only full term pregnancy. My baby also 9 lbs, 14.7 ounces.

It was pretty horrible lying in bed on a respirator, thinking you are dying, and leaving behind your gorgeous newborn.

I also took Phen-fen, in late ninties, which I truly believed was the cause of it.

Long story short, I was told not to EVER GET PREGNANT AGAIN! I actually had my tubes tied during my stay in the hospital.

I still have a slightly enlarged heart.

But, Jordan was worth it, and I would do it again if it would be the only way I could have him.

Did you have cardiomyopathy before you were pregnant?

NO, it was supposedly brought on by the pregnancy


I really think it was the diet drugs that I had taken. They caused heart valve damage, which lead to the heart failure and the cardiomyopathy.

In my last trimester, I was always short of breath, and gained a lot of fluid.

I lost 45 pounds while in the hospital. And the baby was 10 lbs...over half was excess fluid....

Sounds very very similiar to my story. I had the constant cough too, and my dr also thought it was a sinus infection.

Turns out I was actually suffocating from all of the fluid that was building up in my body.

Horrible Horrible experience, but at least I am alive and I also got the greatest joy of my life from it:
JORDAN - My BOY!

I hear these stories all the time, and I'm so sorry for your loss. I know that I should be scared to death, but I feel like mine was found and I've had the chance to recover AND be monitored throughout pregnancy. We don't have ANY children and I think I'd regret if I didn't try at least ONCE .....

Carrob2003, I am in the same situation as you. My husband and I have talked about us having our own child so many times. I've told my story in past posts, maybe you have read it maybe not. When I was diagnosed with Cardiomyopathy I was 20 weeks pregnant. My EF was at 10% and my heart was very enlarged. I had to terminate, it was the hardest desicion that I have ever had to make. Just be sure you are ready for what ever may come down the road. It's been 3 years and it's still really hard for me to deal with. My husband always says yes I'd love to have a child with you but I want a child to raise with you not alone. I hope everything works out for you, I thought like you for a long long time. I'd say they found it I'm better now so why not try? But then I think about what if something goes wrong again, am I ready to die? Do I really want to have a child and then be too sick or dead to raise it? It's hard I know and you are young, you still have time. With medicine today they may have a cure for us next week. Good luck to you and I really do wish you the best and hope your dreams come true.

I am 38 and I am in my 5th month of pregnancy. I had a Defib/ pacemaker put in last year and I take Coreg right now. So far so good. I am handling pregnancy well and the baby is growing and has no signs of any problems.
My medical team wasnt thrilled that I became pregnant but they are working with me, despite their opinions. I can't find too many women or studies out there of successful pregnancies with congestive heart failure patients BEFORE becoming pregnant. Anyone have any sites they have found or personal testimonies?
God Bless..

Leigh

Hi,
I am a little over 5 months pregnant and I am taking Coreg. I also had congestive Heart failure and havea defib/ pacemaker. Let me know if you want more information.
God Bless,
Leigh

Hi Leigh,
I am sorry I just read your reply now. Better late then never. I hope all is well with you. And yes I would like some more information from you if you wouldn't mind.
Thanks,
Christina

Hello,
I'm just now beginning my research on having a baby and am not sure what to do. My story...I found out I have cardiomyopathy two years ago. My EF was at 30ish%, but what scared everyone was that both my father (31) and grandmother (42) died of heart problems.
My dilemma, I am 32 years old, getting married this January and would really love to have a child with my husband. I would also love to adopt but for some reason I feel very strongly about having at least one child through childbirth. My EF is at 62% now, and my doctor is willing to work with me thus far. He's cut my Coreg dose in half and has taken me off the cozaar and spirolanct?whatever. I go back in two months for more tests with the possiblity of cutting all meds for another 4 months, then more tests or if my EF goes down again, well my hopes of pregnancy are pretty much history.
What is my question? Anyone out there with good news?
Is there any information on how the fetus/baby might react to Coreg...any future side effects? Any websites that might help?
Thanks,
Ali

Hi,
I am a little over 5 months pregnant and I am taking Coreg. I also had congestive Heart failure and havea defib/ pacemaker. Let me know if you want more information.
God Bless,
Leigh

Hi Leigh and everyone else. I am just joining today and my story is similar to everyone else's. Last summer, a month after celebrating my 1-yr wedding anniversary, I was diagnosed at 37 with cardiomyopathy (dilated). There is no family history and the doctors are not certain of the cause. The guess is that it resulted from some sort of undetected viral infection, but no one knows. My EF was less than 20%, so I had the surgery 2 weeks after being diagnosed to implant the defib/pacemaker. We were told by the cardiologist last summer not to get pregnant because of my condition and that we needed to focus on adopting a child. The good news is that at last month's cardiology appointment I had an echo done and my EF is now up to 40% and the cardiologist has cleared us to "talk" with an OB. We have an appointment with a high-risk pregnancy OB next week. As everyone else has said, it is difficult to find any information about women who already have cardiomyopathy and then get pregnant or the effects of the Coreg or other medications on the baby. I would appreciate it if you or anyone else would send me/direct me to any information concerning this, so my husband and I can be as informed as possible as we embark on this next journey together.

Thanks in advance,
and God Bless.

Hi igdaughter,
Just wanted to say good luck on your high-risk pregnancy OB appointment next week. I know exactly how you feel. It is very scary because you cannot find anyone out there who has gone through this already. And doctors don't really want the responsibility. But there is so much new technology now that I am sure everything will be fine. I am going to start trying as soon as I get back from Florida at the end of May. The only thing that sucks is I wanted to lose atleast 20 lbs before I do it. But ever since I got sick and had to go on meds I cannot lose no matter what I do. It is very frustrating. But I think I have waited long enough already and if I have not lost it by now I am not going to. The only thing I am losing is my mind....lol Well good luck again and let us know how everything turns out

Just wanted to see how you guys that decided to go ahead with pregnancy are doing? i had ppcm w/chf after my first was born in 93. they "think" it was from a virus. but i didn't have to stay on meds or anything. then i had my daughter in 97. nothing happened that time but i had my tubes tied. now i'm thinking of getting a reversal and having one more with my bf. i'm healthy and don't have any medical problems. so i guess i will see what happens......

Hi igdaughter,
Just wanted to say good luck on your high-risk pregnancy OB appointment next week. I know exactly how you feel. It is very scary because you cannot find anyone out there who has gone through this already. And doctors don't really want the responsibility. But there is so much new technology now that I am sure everything will be fine. I am going to start trying as soon as I get back from Florida at the end of May. The only thing that sucks is I wanted to lose atleast 20 lbs before I do it. But ever since I got sick and had to go on meds I cannot lose no matter what I do. It is very frustrating. But I think I have waited long enough already and if I have not lost it by now I am not going to. The only thing I am losing is my mind....lol Well good luck again and let us know how everything turns out

Hi Eeyore1973! So great to hear from you and thank you for the well wishes. It's just good to know that I am not alone and that someone else can relate to what I am going through. You are not losing your mind! All is going to be fine.

Our appointment with the high risk OB was very informative. He did a good job of explaining the risks to us and actually had one patient who already had cardiomyopathy and then went through a pregnancy successfully (which I think is pretty unheard of). He said she had a rough road, but she made it through. Our next step is to go back to the cardiologist in August and if we have an EF reading of at least 40% again, the high risk OB said that he will work with us if we decide to go forward and try to get pregnant. My husband and I are still talking and praying about it. Anyway, I am excited for you that you are moving forward. Hope your Florida vacation was great! Please stay in touch and let me know how you are progressing. I would be really interested to hear about the process (i.e. what medications you stay on, when they take you off certain medications, how you're feeling, etc.) that you are going through at each stage. You guys will be in our prayers.
Take care.

Never got a green light for it but was diagnosed after my second child and had another one 4 years later. Nothin went wrong thru the whole pregnancy except i couldn't walk much without gettin dizzy and i blacked out once. Every heart doc tells you not 2 but i was stubborn and did it anyway ;)
All depends on how bad it is i guess i mean back then i only had mild heart failure

Wow I have not been on here in a long time. I am now 25 and I have a 13 month old!! I actually went ahead and got pregnant without my doctor's consent of course :) I had a PERFECT pregnancy, no swelling at all. I went off my medicine the first trimester, but I started having v-tach and had to go on topril the rest of the pregnancy. My EF went down from 45 to 35 after I had him, but I am getting another echo in August to see if my EF has gone back up after a year of medicine. I am debating on having another baby. That is why i got back on here to see if anyone has ever had two successful pregnancies with cardiomyopathy. Anyways, He was worth the risk!!

Wow arrest04 :)

That is awesome. Congratulations!!! It is so good to hear someone finally did it. I am glad everything turned out well for you. I am trying to get pregnant now with the help of a fertility specialist.
Did you have any palpatations during pregnancy? How fast did your heart rate get? Did you get out of breath at all? That is one thing that scares me. The other is CHF and swelling. Did you have to be put on bed rest? Were you able to work during those nine months? Sorry for all the questions. I am seeing a perinatologist now who would probabaly see me not go through with this at all. But I am determined now. I have been givin the green light by my cardiologist so I am ready now. The only thing that I wish is I could have lost some extra weight put on by meds before I do it but I don't want to wait anymore. I think I have waited long enough.
Congrats again!! That is great! I am so happy for you. See you just proved these doctors wrong and that is awesome. Keep in touch!
Take care,
Christina

Hi again igdaughter,

We can definately be here for each other. I am glad you had a good visit with your OB. Believe me it helps the more doctors you have on your side. I am pretty good except for the high risk doctor. I want to dump her and find a new one. If it was up to her I would not be doing this. But everyone else has said go for it. Yes this will be high risk pregnancy and I will be watched like a hawk which is fine as long as we are all on the same page. I can't have one rotten apple bringing me down. She already is sending me to another cardiologist who has experience with cardiomyopathy and pregnancy so I will see what she has to say. She actually had nerve to ask me to put it off this month until I speak to her. Well I put it off this month not because of her but the stress I have been under caused me not to ovulate so I couldn't do it anyway. I need to relax or I will never get pregnant. I must get rid of this negative person. I don't want her delivering my baby. No way!! Oh I am already taking Prenatal vitamins for the last 2 months and they have taken me off Lexapro and Cozaar so far. I will stay on Toprol XL 12.5 mg and I will ask this doctor on Wednesday if I should be on any other meds to prevent CHF and swelling.
Well I hope all goes well for you at your next Cardio appointment in August. I will be praying for you.

Florida was awesome. Thanks! I would go back again in a heartbeat.
I will keep you posted. Please do the same.
Take care,
Christina

Oh arrest04......
I forgot one more question....Sorry
How did you deliver? C-section or natural?
I will be having a scheduled C-section.

I did not have any swelling at all. I worked full time as a registered nurse too, so I was on my feet all day taking care of patients. When I was 8 months, I stopped working just because I wanted some weeks off before the baby. I did have a scheduled c-section that went wonderfully! You should have seen that OR room.....I had two OB doctors, my cardiologist, defib. representative, 3 anesthesiologist, and a room full of nurses and the crash cart outside my door!! HA! I was pretty nervous (which is unlike me). However, my EF did drop 10 points, but I am going to have another echo in a couple of weeks, I am on coreg, enalapril, mexilitine, and magnesium right now. I ALWAYS have PVC's, everday, so yes I continued to have PVC's and vtach during pregnancy. When I started having vtach they put me back on topril. I had two ablations prior to pregnancy that were unsuccessful, but did allow me to go my first trimester without medication. Now, I can't even miss a dose of my medicine without being Short Of Breath. I want to have another one eventually, but I may adopt. I had a good feeling about the first pregnancy, but the second I am anxious about. Keep me updated and I will answer your questions, I don't mind them at all... I remember getting on here to find other people going through the same thing! ( I am not overweight, so I don't know if that will having a factor on things at all)>

just checking in to see how everyone is doing?

Eeyore - i was overweight a good bit when i got pregnant with my daughter. i didn't have any problems during or after my pregnancy. but i did have to see a nutritionist. and the cardiologist and high risk ob kept a close look at my weightgain. needless to say i still gained about 30 or 40 lbs..but all went well.

its funny about the all people in the or during dlv. i think there were 26 docs and a ton for others in there for mine. it was wild...:)

still wanna have one more...but i dunno... might not push my luck too much...:D

I was relieved to finally find people who understand what I'm going through.

To make a long story short...At age 27 I was told that my ejection fraction had dropped from 70 to 27 over two years due to dilated cardiomypothy. I was put on diovan and have sustained a EF of 30-35 since. I also have ventricular arrhythmia on both the left and right side so I have an ICD. I've consulted a number of doctors about having a child and all say that there is no way to predict how my heart will react -- and that it is not recommended. Everyone is concerned that going off my meds and adding extra strain to my heart will cause further irreversable damage.

Emotionally I have not made a decision and I'm still hoping that there will be a way. Logically, I know I can't take the risk. I've read comments that say if they could go back, they would do it again (get pregnant). What if I don't have the opportunity "look back" because I don't make it? I guess I'm wondering about others' decision-making process and what factors made them decide to get pregnant -- or not get pregnant.

My ef for my second baby was 30 when I got pregnant. My cardiologist wanted me to end the pregnancy. But I refused. I had a very good High Risk OB in the Navy. And I had to go get checked every week the entire pregnancy. And at the end I went twice a week. I went to the cardiologist once a month. My cardiomyopathy started with my first pregnancy. But I wanted two kids.. I knew the risk..but I also know the feeling of regret. Once you are at a certain age you shouldn't even think about it. So I decided to take the chance. I figure if its my time to go then I'm going to go anyway.. I was on bedrest the entire pregnancy. My daughter was born and everything went fine. No problems at all.... But I didn't have to take meds before I was pregnant. but they did put me on a few while I was pregnant...so maybe that helped..