New to group and need help!!

[kapellegrom]

Hi everyone, I am soooo happy that I found this site and have been reading alot of the forums and they have really helped me deal with this situation and not feeling so alone.
I was diagnosed in December of 2002 during delivery. It has now been 2 and 1/2 years (I was 33% during delivery) and I have went up a percentage or so every 6 mos with MUGA tests. Last one was in Nov and I was 52%. My cardiologist wants to see me reach 55% and then maintain it for 6 mos before considering pregnancy #2.
I will get my most recent results on Monday and am just so torn up about what the answer may be. If its 55% then in 6mos I can go ahead and get pregnant under extreme care but not with 100% of a blessing or certainity by the Drs.
My worries is that do I take the risk especially being how long it has taken me to recover or not? I know I will be closely monitored, but what if something goes wrong? I don't want my son to grow up without a mother because I wanted to give him a sibling.
I know all of you have gone through these struggles but really would appreciate your opinion being its taken me 2 and 1/2 years to possibly be around 55% EF although I wasn't that low being 33% the first time. It seems alot of the threads I have read had recovery rates within 6 months time with a low EF at delivery.
Thank you!
-Keri

[Mindyt]

Hi Keri,
Welcome and I am glad you found this group. I am fairly new here too and the girls here are amazingly helpful and supportive. I was diagnosed with an idiopathic dilated cardiomyopathy approximately 9 months after my son was born. In my case, it is unclear if I have PPCM. Anyway, my EF at dx was also around 30-35% and has been slowly increasing but nothing dramatic. My EF is now 40%. I too struggle with the question of ever having more children. I would love to give my son a sibling but I worry about what the cost will be. My EF was never extremely low but I am slower at recovering.
There are quite a few women here who have had successful pregnancies after a PPCM pregnancy. It gives me hope too.
Anyway, I really don't have any good answers for you but wanted to let you know that there is someone else in a similar situation.
I received several articles from a cardiomyopathy nurse on pregnancy and cardiomyopathy. If you would like me to send them to you, please let me know. They contain a lot of research-based information. Ultimately, it will be a decision that you will have to make with yourself and your doctors. They will know what is best for you. I was told that I would have to work closely with a high-risk OBGYN before ever considering another pregnancy.
Good luck with your decision.
Mindy

[kapellegrom]

Mindy - Thank you so much for getting back to me, I would love for you to send the information you have from your nurse. I just need more answers from my Dr.s as well, but they are just so conservative and alot of times just looking to save themselves - I wish someone could just look into the future! We are also considering adoption which seems to be another overwhelmingly long road with its own ups and downs!
Thank you, its so refreshing to finally talk to someone with the same condition and feelings that I have.
-Keri

[Mindyt]

Keri,
I sent the information to your regular e-mail address that was in your biography. Please let me know if you don't get it.]
Mindy

[SarahsMom]

Mindy,

Can you send the information that you sent to Keri to me as well. I'm also conidering a second pregnancy, much to the sha-grin of my cardiologist.

My e-mail address is: atkar@hmm21.com

Thanks so much!

Kari

[tinabowen]

I wasn't planning on getting pregnant with #2 until my son was one(born 8-13-04) or Feb of 2006 whne my cardiologist was going to take me off my meds..I am now 15 wks pregnant with my big suprise..My Cardiologist doesn't mind it since my 6 month EF was 55% but I am dealing wiht OB's that are scared out of their minds..

I still take my Coreg, and Lasix which has helped a lot and I am monitored very well..

I was told that you can chance it as long as your EF is 55% or higher..
The main key is to do what they say stay on fluid/sodium restrictions, take meds(even if you are scared of what they COULD do to the baby) see the Dr's and listen to them..

I was having a day where I was thinking of what if I die and then I thought well I could walk outside and get hit by something and die..


Tina

[carrob]

Mindy,

I'd love the information too...... :D

carla@cnbt.com

Thanks!

[naturalmama1012]

I was having a day where I was thinking of what if I die and then I thought well I could walk outside and get hit by something and die..

That's kind of my take on it too! I think it's a really personal decision, and it's kind of hard to really know the risks, there is such limited data out there. I can tell you from my own experience, at 1.5 years out I finally got to 59% EF by MUGA, there was no change for several months out following my diagnosis. I still get a 45-50% EF by echo. There is some doubt in my case though if I have PPCM or IDCM since I have had symptoms for many years prior to my first pg, it just was after that pg that it was discovered.

The best data we have seems to show that if you are fully recovered with a normal EF, your odds of having a catastrophic event are extremely low, but there is still some risk, and the possibility of reoccurance and/or permanent loss of some function. I don't know how accurate that is because there are alot of women just here on this board alone who have gone on to have post-PPCM pgs with zero complications... there really has never been a large study done.

I am currently 39 weeks pg with #2 and have not had any issues at all!

[Lisa V]

For me chancing losing my family and leaving them with no wife or mother was not for me. Just so I can fillful my desire to have more children. No, thank you. This is just the way that I feel and other woman on here do feel different. Alot of woman have gone on to have more pregnancy's and yes. they have all survived and have not developed PPCM again. We did have 1 mother who did go on to have another pregnancy after PPCM and almost 1 year out she died. We were all very upset and hurt by this. She left behind 2 sons and a husband. My doctor has always said that the first 6 months after diagnosis are the most important, if you recover up to 55% then your chances of another pregnancy without PPCM are high but if you do not recover to 50% then you should not chance those odds and have more children. In my case I did not and my husband and I already had suffered enough when our 6 month old daughter died from a heart defect that we were not willing to take any chances on me. We both agreed...........
The final decision should really be up to you and your family, you have to be willing to take those chances and be able to live with them no matter what the outcome maybe.

[jbrunetti]

I know exactly how you are feeling and the decision you make will be one of the hardest things you will ever have to decide.
I was dx after my 1st pg and had an ef of 10-15% and almost didn't make it.
I recovered very quickly, probably before the 6 month mark but we will never know because I had an echo at 3 months which was borderline normal and then 6 months I was back to normal.
It took me 2.5 years to convince my Dr's to support another pg and I just had my little miracle baby 6 weeks ago and have had no problems at all.
For me, not knowing if I could have another baby was harder than any outcome from a second pg.
You have found a great group of women here that will support you in whatever decision you decide to make.
I wish you the best in whatever you decide!

[ladyacura28]

Hi all after 8 years of marriage i was blessed with a beautiful baby boy then i was diagnosed with congestive heart failure. My heart has stayed at 30% and I am also overweight. Which I am working on that. My son is now 8 months old. I just recently found out I was pregnant and my cardio told me to end my pregnancy or I would die. I am scared and concerned. So I started doing research and I found out about PPCM. Is there any hope for me?