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pregnant with dilated cardiomyopathy

jellybell
0 Recommendations

I have recently found out that i'm pregnant and was told by my doctor to stop taking some of my medication and im worried of what effects this may have on me and the baby. I have stopped taking my ace inhibitor, water tablet and asprin. I am still currenting taking my beta blocker until i get to see my cardiologist. Does any one know of any safe alternatives that i can take to keep my ef at the level it is? I am also concerned that i may retain water now i'm not taking my water tablet. My ef was 15% in 2002 when i first found out that i had dilated cardiomyopathy possibly caused by a virus, and was looking at possibly having to have a heart transplant, but within 1 year my ef had risen to 45% and now is at 57%. I know that this may only be due to the medication. Any help or advice would be greatly recieved. Many thanks.

Explore topics in this discussion:

Heart transplant Eclampsia Heart failure Carvedilol Pregnancy Beta blockers Pneumonia Lasix Coreg Digoxin Folic acid Stress Asthma Vasotec Aspirin Miscarriage Stroke Cardiomyopathy Breast feeding Pain Aldactone Congestive heart failure Preeclampsia

16 replies

Winglover

Kelly,
Thank you for your heartfelt message. I'm so happy to hear you are doing well and expecting a new little one. My son is a fighter also. He refuses to let this get him down. Some days I think I dwell on it more than he does. He does not think of it as having heart "failure", he chooses to call it a heart "condition". He informs me he does not FAIL at anything. How can I argue with that? It is hard to let him grow and do without hovering and worrying that something awful may happen and I might not be there to stop it. I am an ICU nurse who missed this horrible diagnosis. Who thinks a 15 year old boy has a weakened heart? His EF was 20% the day we found out and he was severely compromised. Docs told us most likely he would end up on the transplant list. After 3 months of minimal change in his EF we were told he would probably not improve. He was put on Digoxin, Coreg, Vasotec, Lasix, Aldactone and Aspirin and has not varied from this regime. Thankfully he has had no adverse side effects and they have done there job to keep him out of the hospital with no relapses of CHF. He has not had an angiogram. Oodles of labs while in the hospital with no definite virus identified. He had an upper respiratory infection a few months before, but nothing significant jumps out at me. I was not home a lot before he got sick as my father was dying in the hospital for 5 months prior. It wasn't until after my father passed that I really looked at him and saw how sick he looked. Wish I could turn back time or paid more attention. We caught it in the nick of time. A few more days and he would have collapsed at school with no one knowing what was happening. We are very hopeful here that all this promising research will come up with something to help him live the long life he deserves. Three universities have just received grant money to study how stem cells regenerate cardiac muscle. Yeah!! Hopefully youth is on his side with no health issues other than his Asthma. Thanks for the link to the AHA article also. Just saw that you are from the UK. I just received a booklet from the Cardiomyopathy Association there for my son. One of the ladies on this site recommended their website and they were nice enough to mail me a copy. Very informative reading. I will keep you in mind for any further questions I may have. Thanks.

Lisa

jellybell

Hi lisaIve sent you a link to the american heart assosiation which explains about stem cell treatment. Hope this helps in some way
http://circ.ahajournals.org/cgi/content/abstract/107/18/2294

kelly

jellybell

Hi lisa
I'm sorry to hear about your son having developed CM at such a young age. My heart went from 15% to its 40's in the first year, then has gradually increased over the next 6 years to 57% due to medication. I must quote that the doctors told me that after one year no more improvement could be made, but ive proved them wrong, im a fighter! So it shows that they do not always know themselfs about this disease.

I know that with CM anything can be possible, were just all different and recover in different ways and at different speeds. I would like to ask you what was your sons ef when he was diagnosed, and what medication is he on? Also has your gp carried out any tests to eliminate all the possible causes? i.e angiogram, blood tests for any underlying problems such as thyroid or vitamin def etc. Did your son doc's find the virus in his bloods or is it put down to a virus when it is actually idopathic?

i must say this to give you a ray of hope that carried me through the toughest time of my life.... When i was first diagnosed 7 years ago my cardiologist nurse told me that in america at that time they were currently doing loads of research into advanced medications and treatments to help people live a better quality of life, i think there is even research into stem cell treatment to replace heart muscle, as they have now found out that this can be used for stroke victim as it regenerates and can turn into any form of muscle by mimicing what it has been attached to.

so maybe there is hope for us all.

please tell your son to be strong, and more importantly dont give up! I hope for him that this is just a tempory pause in his life and he will soon be feeling better and living his life like a young man should, free from restrictions of this disease. I cannot stress to you how important it is for him to be put on the medication that is right for him as some meds do not agree with us all.

If you would like to ask anymore questions feel free to send me a message.

Take good care
kelly

Winglover

Jellybell,

How long was it before your EF went from 15% to 57%?
The reason I ask is my 16 year old son has Dilated Cardiomyopathy from a virus. His EF is 20% and it has been one year now. Just hopeful here that miracles happen.
Lisa

jellybell

Hi jay
yes were based in the uk. Thanks for the link, will look at it straight away.
take care
kelly x x

jay73

Hi
Congrats! This link is from the Cleveland Clinic and gives detail on the drugs which can be given during pregnancy.
http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/cardiolog y/pregnancy-and-heart-disease/#cesec27

I also posted a link a few weeks ago do a search on this site on 'pregnacy and heart disease/SCAD' for the details.

I saw an ob/gyn a few weeks ago and she said aspirin should be stopped at conception because it increases a miscarriage risk in the very early stages but once a positive preg test is confirmed it's ok to go back on aspirin. She also mentioned that specific beta blockers are not to be taken but there is an alpha and beta blocker which is prescibed to women with preeclampsia from the 2nd trimester.
Try not to worry too much (easier said than done!) you'll have a healthy baby and you will be fine too.

BTW are you based in the UK?
Jay73

jellybell

Hi all Thank you for your input and support, im busy making a list of questions for my cardiologist from everyones input. My cardiologist is sure that my cardiomyopathy was caused by a virus and was not genetic or underlying as i had a servere throat infection prior to being diagnosed with CM, which they felt was a classic sign of viral CM. I was fit and active before hand then after my throat infection had pneumonia (due to dilation stretching my heart valves), breathlessness, and eptopics. I had no signs of CM when i had my son at 19 ( i was 25 when i had CM).

I have previously been to see my cardiologist about having a baby, he had blood tests done to see what risk i was at from clotting, but never gave me the results!
My cardiologist clearly stated that he would have sleepless nights as my heart was at 15% when diagnosed, he was concerned that it may go back to there without meds. Im presently stable at 57% and now fall in the normal range.

He just told me that it was possible, but a high risk and that he didnt want to see me for two years because I do not show any symptoms at all, other than on the onset of having CM. At presant i currently have a full time job working 40 hours per week, walk my dog, play football with my son etc, so i consider myself very lucky to be living free of symtoms at presant and for the last 7 years.

I went to see my GP to stop my meds and he has made an urgent referral to my cardiologist, and have seen my midwife who i have another appointment with on friday to have a scan and to have my bloods taken. One concern i have is that they havent put me on any folic acid or iron, i think im about 6-7 weeks and should really be taking some. My gp thinks that i may be referred to a London specalist team who deal with pregnant ladys with heart problems. The only problem is-how long will i have to wait!

thank you all for your valued input
Will keep you updated
kelly x x

MMaslek

P.S. Fresh parsley boiled in water works as a natural diaretic during pregnancy. My sister was pre-eclamsic & it help a lot. Tastes really gross so she hid the taste as best she could with chamomile tea... but it was quite effective with the water retention. Her OB was the one who told her to do it so it's not some wives tale.

MMaslek

Ask you doc to check on your antinuclear antibodies. If you are positive (many heart patients are, don't know why) you need to be on baby aspirin through your pregnancy. Doesn't hurt the baby, just keeps the blood from forming clots in the placenta. Lots of ob's don't check for this so be specific!!! Good Luck & congratulations!!! My kids are the best thing I've ever accomplished!!!!!

Amy

da_fruitloop

Hey, You need to get in touch with your cardiologist as soon as you can and start getting this managed. Dilated cardiomyopathy is quite a different thing from postpartum cardiomyopathy, in that PPCM is caused by the pregnancy itself, while DCM is already there, in most cases it is there from birth, it just takes time to manifest.
I have DCM and went through a sucessful pregnancy that was fully managed by specialists.
In my case I was stopped from my ace inhibitor and carvedilol before I got pregnant and put onto aspirin and metroprolol. The reason I was put onto aspirin is because not only can it help prevent clotting, it also has been shown to help prevent pre-eclampsia, and it's been shown to be pretty safe during pregnancy (the low dose stuff that is). As for swapping from carvedilol, my cardio felt that there isn't enough info about it during pregnancy, but there is heaps of data which shows that metroprolol is safe. He considered metroprolol to be an inferior drug and warned me that it isn't as good. It wasn't, my EF dropped from 48% to 40% on metroprolol.
As for the pregnancy itself, the most strain is placed on the body from conception to 28 weeks, at 28 weeks your heart is having to cope with 50% more blood in your system. I've been told if at that 28 week mark you're still okay, it's likely you'll get through the rest of your pregnancy okay.
The most dangerous time for you isn't during your pregnancy, it's after the baby comes out. When the baby comes out, your uterus clamps down and that 50% extra blood is forced back into your body. This makes your heart go into overdrive to cope with it, and the danger with DCM is that your heart will fail, get out of rhythm or it will cause damage to it. That's why you need to be properly managed through this phase. They normally insist on an epidural as it can help to stop your physical response to pain, which can help your heart not be stressed.
As for me, my EF dropped to 20% at week 38, so they decided to pull bubs out early, I had a balloon pump inserted into my aorta to help my heart cope and I was on a dobutimine drip as well. I was also on infused heprin (and had been having heprin injections for the 3 days before). Once bubs was out, I had to have the epidural in place for the next 12 hours and then was put back onto my old regieme of medications as they were safer for breast feeding.
I didn't need all the precautions as my heart coped perfectly with the birth and I surprised my cardio with the outcome. 3 months later I had an echo and my heart has fully recovered with my EF back to 42%.
It's now been a year since I gave birth and life is pretty awesome, but I wouldn't have survived if it wasn't for the attention and care I got from my cardio, high risk specialist and all the hospital team.
You need to get in touch with your cardio and make sure they get you on the right drugs with the right monitoring in place (I was having my BNP monitored every 2 weeks through a blood test and if it hadn't been for that they would have never caught my almost heart failure as the only symptom I was showing was I was a little breathless if I tried to walk and talk - when they found out my EF was 20%, they couldn't believe it as I was still really active and from appearences and their other checks I looked fine).
I wish you all the best for a great outcome!!

jellybell

Thanks martha
thats a great help, will let you know how i get on
Take care
kelly & steve
x x

Patybluetx

Hi Kelly!
I believe cervididol is the one that my cardiologist is planning on putting me on should I need it. And PPCM is so rare that there is very little research however the little bit of research shows that if your EF is at or above 55% your chances of 'relapse' or having congestive heart failure again is less than 20% so my best educated guess would be that you'll more than likely be safe as long as you get an echo every trimester and an echo each month of your last trimester (which is what they recommend for PPCM patients). Eitherway, become a member of A Mother's Heart
http://www.amothersheart.org/members/index.php?

and talk to Dr. Fett, he'll be able to give you better info. Dr. Fett is one of the pioneering Drs in the field esp when it comes to research, he's got patients all over the world and is very dedicated to helping women with PPCM lead happy healthy (childbearing) lives....he's completely transformed my life (looooong story LOL) Oh! And there are tons of articles about women with cardiomyopathy (beit PPCM or not) and pregnancy in there...look under the PPCM For Patients and Healthcare Professionals section.
Good luck!
Martha

jellybell

Hi marthaThanks for your input, all advice and info is greatly recieved. Do you know if carvedilol is safe to use? Also do you know if PPCM effects people who already have cardiomyopathy caused by a virus, or if people are more likely to experiance it? i would like to have a look at that site if you could forward me the address.
Thanks again and take good care!
kelly x x

Patybluetx

Congrats!! And I happen to know for a fact that there are beta blockers that can help you control your cardiomyopathy while pregnant and they are totally safe. You'll have to stay off the A-I thought. I also know that as long as your EF was about 55% before you got pg (which in your case it was) your less likely to have severe health issues. Just make sure to watch out for PPCM (peripartum cardiomyopathy) towards the end of your pregnancy and after giving birth (it affects women in the last month of pregnancy up to 5 most post partum. I can also recommend a site on PPCM that has a PPCM specialist that you can converse with. (I had PPCM about a yr and a half ago and am getting ready to get pg again so I'm educated on the subject :D)

Let me know if I can help you in any way!
Good luck!
Martha

jellybell

hi lidia
thanks for your kind thoughts
kellyxx

grace5

Congratulations!
Sorry I can't help you with your questions, but I hope someone here will be able to shed some light, I just wanted to say hi and try not to worry, I'm sure everyone involved in your care will pull out all the stops to make sure you and your baby stay well.
Good luck, take care and hugs!
Lidia xx

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