New here with questions

[Mindyt]

Hello to all,
I am so glad that I found this site. I was referred here from a dilated cardiomyopathy forum. I have found some wonderful support there.
A little about me-
I gave birth to my wonderful son in December 2003 when I was 28 years old. My pregnancy was uneventful. I had a c-section because I was not progressing but other than that it was a pretty normal delivery. After his birth I felt tired and depressed but it went away fairly quickly. When my son was almost 10 months old, I really began to notice significant fatigue, shortness of breath and just a general feeling of not being well. I was eventually diagnosed with an idiopathic cardiomyopathy. My doctor suspects a virus. My diagnosis was approximately 6 months ago and my EF is around 40%. It has gone up (started at 30%) but is not at normal limits yet.
I have a few questions-
1. I know that PPCM is usually diagnosed within the first 5 months after birth but could my case be PPCM that went undiagnosed for several months? I began to notice the shortness of breath after a traumatic event involving a close friend.....intially thought it was just anxiety. I wonder if something like that could trigger symptoms even when the problem had been there for quite some time.
2. Does it make a difference for future pregnancies? Am I more at risk if it is PPCM versus a cardiomyopathy caused by a virus?

My husband and I are definitly not going to try for another baby anytime soon but would like to know what all of our options are before making a final decision. I am still hoping for an increase in my EF over the next 6 months.

Thanks for any advice. I have been reading other posts and you seem like such a wonderful caring group of people! It is great to have a place like this to turn to.
Mindy

[mikeyandBellesmommy]

Hi and welcome

I will try and answer your questions the best I can

1. PPCM can and has been diagnosed on this board well past the 6 month post partum mark, there have been girls on here that have gone over a year undiagnosed..

2. With PPCM it is not advised to go through with another pregnancy with an ef less than 55% or what is considered a normal heart fully recovered, the chances of reocurence and even death are much much greater if your heart is not fully recovered
With a viral cardiomyopathy I believe you CAN get pregnant with a lowered ef ( Carla would be a good person to answer on this as she is wantign to conceive and she has a viral cardiomyapthy and she is more knoweldgable than me on that subject), I am not sure though, but I think it is possible with less of a risk of deterioration

MANY MANY of us have recovered well past the 6 month mark, you have already seen improvement and I think you will see more!

Cari

[carrob]

Welcome Mindy! You've found a very loving and wonderful place to come with all of your questions, and fears! I also have Dilated Cardiomyopathy. They feel like it was caused by a virus at some point as they see no other damage to my heart like a heart attack, etc.

All I can tell you is to stay strong and keep pushing forward. We have struggled with the pregnancy decision for the last 15 months since DX. My current EF is 40% (up from 25%) and my cardio and high-risk have "cautiously" given us the go-ahead for a pregnancy.

I'm scared to death though and really having to do alot of soul-searching. However, we don't currently have any children, so that makes our decision a little different.

I can't really answer most of your questions.....but there are many wonderful people here that can!

Carla :)

[carrob]

I did want to add that my high-risk doc was very helpful and supportive regarding pregnancy. The cardios are "naturally" negative.....because they have to be. But, both agree on the EF of 40% being safe...as long as it's maintained. And, I will also add that I now have NO ENLARGEMENT. I will stay on all meds (Coreg, Enalapril, Lasix) until the last trimester of the pregnancy. At that point....we will wean me off of the Enalapril and use something else to help with the BP. Enalapril (Vasotec) causes kidney failure in the fetus during the last trimester.

And.....I'm trying to calculate how old you are now....but don't fret that either right now. You've got plenty of time. My High-Risk says the majority of his patients are older 36-38. Some are even well over 40 and have successful pregnancies.

Anytime you want to talk......I'm here! Or, my email is carla@cnbt.com.

Carla

[Lauren]

okay now im confused??? Your heart can improve to the point of NO enlargement? I wasn't aware of that...My heart is still enlarged and the doctor said that it always would be, am i being misinformed?????

[dawn]

I have NO enlargement. I started at severe enlargement, EF 15-20%.

[marissar]

Yes your heart can improve to the point of no enlargement. Mine was enlarged and thought to be that it would not recover but it is a zero enlargement. Your ef is your ejection fraction and is determined by your % of flow of your blood through your heart.


As far as missing a dx of ppcm there are women who have had other pregnancies before they were dx. We are talking years of missing it. It is believed that I may have had it with my first in 1994 but didn't present with symptoms until my 2nd child in 2004 :eek: .

As far as pregnancy goes I was told no, then wait at least 2 years after I recovered. We have decided not to take the chance. I have an infant that is very sick and what would she do with out me around.

[JAMESFETT]

Mindy, your experiences are not unusual. You've already received helpful comments, and I will add a few--along with prayers and best wishes for complete healing.
1)Both idiopathic dilated cardiomyopathy(IDCM) and PPCM may be post-viral myocarditis conditions--that has been fairly convincingly shown to be the case with IDCM, and we are waiting for biopsy proof in PPCM, using PCR technology to identify virus particles in heart tissue.
2)Although you cannot be technically diagnosed with PPCM because the discovery of heart failure (HF) did not occur in the last month of pregnancy or within 5 months after delivery, it does not matter that much. What matters is the course of your heart performance. If it recovers with EF > 50 percent, that will be more like PPCM than IDCM.
3)Recovery of left ventricle (LV) size always lags behind recovery of LV systolic functioin (EF). The EF is far more important than the LV size.
4)I have been for some time putting forth the concept of "Unrecognized PPCM" with plenty of substantiation. Published reports of that are in the literature and those from our PPCM Project will soon appear.
5)The answers are not yet in regarding the risk of subsequent pregnancy. However, there is a growing documentation of the ability of certain of those who recover from PPCM to go safely through another pregnancy. We just need to pin down how to more clearly identify those who can tolerate and those who can't. Again, prayers and best wishes for you.

James

[JAMESFETT]

P.S. to Mindy:

Both PPCM and post-viral DCM can continue to improve far past the first 6 months following diagnosis. We have documented improvement in PPCM in the first year, the second year, the third year, and the fourth year followiing diagnosis.

James

[momofthree]

Hi Mindy and a very big welcome. This is an awesome place. You seem to be on the right path and that is awesome. I also pray for continued recovery for you. Regardless of the source, "to him who believes, all things are possible!"

Alison

[Mindyt]

Thanks to everyone who responded to my initial post. You all are wonderful and very supportive. I really appreciate all of your advice!
Mindy