New Member

[mandyb]

Hi!

I am a new member. I have lived with ppcm for over a year now (December of 2003). I am glad to have the first year behind me but still struggle with so many things. I am excited to say that I had a muga scan on Friday and it showed my ef at 64%! The highest it has been since my diagnosis! I am very excited but still feel very uncertain about the future and what could happen. It has all made life very scary and I feel as if I never know what could hit me at any time. I am only twenty-six years old and I can't believe that I have a heart condition and have been told (especially by my husband and mom) that I can never have any more children. It has been an unreal year.

I love my little boy, but I live with fear every day that I won't be around to raise him. Has anyone else experienced this? How do you deal with it? I don't want to spend the time that I am here on earth worrying, but how do you get past it? Also, have any of you been angry with your doctors? I feel like the doctor was so negligient and wonder what I should do about it? I feel that I should make an example of it so that doctors are aware of this problem. How can they be so ignorant? Sorry... I guess I am angrier than I realize!

Thanks for having this board here. I really helps. I love reading about all of the different stories of ppcm. I have felt so alone in the last year that it is amazing to finally have something to connect to. Thanks again.

mandyb

[Natasha]

Mandy,
I'm glad you found us!

What was your EF when you were diagnosed? 64% is very good! Many healthy people without CM don't have an EF that high.

For me, time and improving health were the biggest aid in improving my mental health. For the first year, I thought about it all of the time. I kept thinking, "I would have missed this" for nearly every event. After passing the 1 year mark, it was much easier. I was then on the 2nd mother's day, 2nd birthdays, etc. Between that and having my EF get all the way to 45% (not even as good as you are now!), it gradually faded to the background.

With your good health and having passed the one year mark, I think things should get easier for you. If not, you should talk to your doctor. An incredibly high percentage of heart patients goes on anti depressants. My doctor also had me talk to a counselor because she thought that I had signs of post traumatic stress. If your fears don't begin to ease, I highly recommend talking to your doctor.

We're all thinking good thoughts for you!

[dawn]

Hi Mandy!

I hope you find some friendship and support here. I found the first year after my diagnosis to be very difficult. Immediately after the crisis, I guess I was in shock or denial, but as things settled down I began to experience what you're describing.

It did get easier for me. I saw a counselor, she was a great help. And like Natasha said, many women facing this issue take meds for anxiety/depression. My bio is posted, and I struggled with the 'no more kids' ruling, too. Now I'm 4.5 years post diagnosis, and we're in the middle of adopting another. I'm giddy.

Glad you found us, and I look forward to getting to know you and your little one!

dawn

[mandyb]

Thanks everyone!

It is great to have somewhere to say what I feel without judgement and also to know that others have gone through the same thing. Hope I can return the favor.

Mandy

[Lisa V]

Welcome Mandy,
Glad you have founf this wonderful site of amazing woman. We are here to lend sipport, advice and our opinions. All of our stories are pretty much the same and the end result has been the same also, we have all gotten better and increased our EF's. It sounds as if you are doing great....................I know that the Dr.'s diagnosis's are frustrating since most of us were all disgnosed incrrectly at first but just remember that we are here now and we proved them wrong. Several woman on these boards including myself have tried to sue our Doctors that misdisgnosed us and we were told that there was nothing there unless we had passed away. Yes, it pissed me off then but I am hearing raising my daughter and living life day be day. I hope you visit the site often and I hope you are able to get comfort and help here when needed. My name is Lisa and I was diagnosed over 5 years ago with an EF of 10%. I am currently around 50% and hoping to see more improvement. If you would like to learn more about please please read my BIO.

[momofthree]

Hi...nice to meet you. I am 5 months post dx. I am "technically" 3 months out as I got out of the hospital for the last time in January. What a mess. Anyway, you have to let go of the anger and the fear. It is a conscious choice to release others...to forgive and let God heal. It is as easy as we allow it to be. You can do it. With so much to be thankful for, I try to focus on that rather than what got me here. There is a scripture in the Bible that totally ministered to me. It may or may not help you. But it tells us that we are not to ask "why are the former days better than these," because we do not ask wisely. We do not ask with all the inside knowledge. So, I choose to not ask and to focus on recovery an my life as it continues. I have great kids. God has proved himself strong on my behalf. My hubby has been with me through it all. I hope you will find peace because ultimately that makes all the difference. I am so glad for your major recovery. What a blessing. I am headed that way myself. God bless and keep us posted. So glad you found this site. Alison

[mikeyandBellesmommy]

Welcome!!!! I am Cari and I am 10 months post my second diagnosis.. almost 4 years post my first. I have two beautiful children and my ef has just gone up to 60%! YAY!

We have all been angry at one time or another. I am one of the girls that tried to sue and well I couldn't cause I am still alive and doing well!

A peice of advice I have given a few if you can''t sue you can still report your docs to the licensing board for negligence. That is even worse because enough complaints or a severe enough complaint can cost a doc their license!

Cari

[mandyb]

Thanks again for all of the advice. I am interested to know that many of you have tried to sue. I have been thinking about it strongly these last few days, but I am not sure at all about it. I know that I went into heart failure about three weeks before I delivered. I called my doctor a couple of times a week in addition to weekly appointments. I gained about twenty plus pounds in those weeks... she ignored it. I just can't help feeling that it is so wrong and more than anything I want there to be some accountability and also awareness about this condition. Why don't ob/gyn's remember it from med school? It is a disgrace! I wish I could start some kind of foundation/organization for awareness, education, and support for others like us. I have tried to contact so many news organizations and talk shows about this to no avail. If anyone is interested, maybe we could all get together and contact someone big and see if so many voices get their attention? (like Oprah, Ellen, anyone!) Let me know what you think! It may be a better course of action rather than suuing someone!

Mandy

[Lisa V]

Just to let you know we have been trying to get on Oprah for about 4 years now. I remember trying with the other board and all of us sending email on the same exact day. There was probably 30 emails that went out and not 1 response. That is why we have this website open to spread the word on the computer and by word of mouth.

[NursCEO]

Mandy,

I just wanted to say hi. I am Carrie, I am one of the nurses that hangs around here, and I am also 26. I was diagnosed a little over two years ago. It is really hard being in your twenties and getting this kind of diagnosis!!!!!

The interesting thing about me is that at the time I was an L&D nurse (I have since moved on). I totally understand your frustration with your doctors and I am not going to defend them, but this condition is so extremely rare. Afterall I wasn't a new nurse, and I had never seen it and only heard of it a couple of times. The interesting thing about PPCM is that at a lot of the symptoms either go hand in hand with pregnancy or are commonly seen with other complications. My doctor did in my mind the best she could, and being a nurse I thought I was getting the best care, yet I ended up in the ER 4 days after delivery. My doctor came to my room in the cardio unit and actually told me I could sue her if I was looking for someone to blame. I didn't. I genuinly believe that she really felt bad for not figuring what was wrong with me.

I am not going to say that about all doctors. :rolleyes:, and I don't want to come off as being against the whole law suit situation,I just think that after time we all gain prespective.

Now on to you. I am very sorry that this has happened to you, but I can say that this is a great place to be. The girls are so wonderful. I would be happy to answer any questions that I can. It has taken me along time to come to terms with PPCM, and I can honestly say that I still have my moments!! I have a great son and I have to keep remembering that. It is hard to think of not seeing him growup, but now that thing have clamed down and my EF is back up I don't think of it as often.

I do want more children, and I think for most of us this is the hardest part. I am much better now, but I still have days where I just don't understand why me. I think I am a great mom, I know my hubby is a great dad, I feel like we should be able to have another child. It is just something that takes time. I think that a counselor is a great idea, it wasn't for me but others have greatly benefited.

Anyway, I have talked too much. You can read my bio if you would like to know the whole story.

Carrie

[mandyb]

Your stories are all so interesting and I love to know that all of you have some of the same feelings as I do. It is nice to know there are others out there. I can't believe some of you have had ef's of 10%... I can't complain. The lowest mine ever was was 45%. I realize I have a lot to be grateful for.

I am still so unsure about the "lawsuit" thing. I have felt many ways about it. I really liked my doctor at the time, but she had me push for three hours with no mention of a c-section. My doctor and the delivery nurses saw that my little boy had not budged an inch but insisted that I keep pushing. I was so swollen and had to be on oxygen. Do you really think she shouldn't have caught it? Also, when she FINALLY took me in for the c-section, my little boy was so stuck in the birth canal that they had to vacuum extract him. The consulting ob/gyn told my mom "This is not normal." My little boy was so bruised and battered that everyone (except me who was totally out of it) was worried that he would have severe problems. He is doing great now, but suffers from something called benign extra-axial fluid of infancy, which is where the spinal fluid does not drain properly. It can be caused by a traumatic delivery (which totally describes his!). He has minor problems from it--like not being able to crawl (he is fifteen months!); he also couldn't roll over until he was a year old! He is great kid... he has overcome so much of it and actually walked at eleven months despite everything. So.... do I forget the past and move on? I can't decide. I appreciate your opinions! Those of you who have gone to court, was it awful? I don't know that I want to face my doctor and accuse her of malpractice?

Thanks again!

Mandy

[carrob]

Hello Mandy and WELCOME to this wonderful place. I hope you find as much love and support as I have. And, it's terrific that your EF is so high!!!! I think that's a very positive sign that you've recovered so quickly!

About the lawsuit thing.... I thought I had a "cut and dried" case because my PCP actually "missed" my heart enlargement on a chest xray done 2 years before my diagnosis. He thought I had pneumonia because I was so short of breath......and totally missed it. However, I had to "prove" he had endangered my life. And, since I'm in such good shape "outwardly"....that's hard to do! And, like Carrie mentioned.....this CM stuff is so rare. Especially in "healthy" young women! After a while.....the bitterness does become a little easier. If I would have known 2 years ago what I know now........I probably would have called me wedding off because I was so freaked out initially that I couldn't give my new husband a child. Things work out for reasons we don't always understand.

We have just been given a "cautious" go-ahead from my Cardio to begin pursuing pregnancy......at least once. My EF is now up to 40% with no signs of enlargement. Although my CM was caused by a virus....there's still a probability that PPCM could strike as well. I have an appt with a High Risk OB on April 20.

Good luck and hang in there! :)

[mikeyandBellesmommy]

I think the problem is that yuo don't have a lawsuit unless you have damage that incapacitates you for the rest of your life. The way my lawyer put it is what are we going to sue for their are NO damages. My lawyers wehre great and actually close friends of my family so I know they had my best interest in mind. I know they saw me at my worst (15%ef) and knew their was a total total screw up done with the docs, but they knew they couldn't sue becasue there was nothing to sue for.

I don't think any of us have actually made it to the court part. Myabe one, or two. I think if your child was harmed due to your heart maybe, but that sounds like delivery trauma which has nothing to do with your heart trauma. I don't know your whole story and if you think you have a case then go for it, but I am warning you it will not be easy.

I don't want to upset you adn I hope I am not, I wish all the docs could pay for what they did to us, but you will see in time you will move on and the hurt and pain will be less.

We have our awareness campaign you can DOWNLOAD letters to send to your OB's and OB's in your area to make them aware for the next person..who comes along.. we also are incorporating and becoming a non profit org to really make those aware, you can donate or walk in Karens walk that benefits cardiomyopathies, in memory of a girl who passed on from PPCM, and there will be many things to come to keep those aware..

[tabs]

Suing for PPCM is really hard. There are lots of loopholes and lots of things that you would need to prove that are nearly impossible to find. Lack of research and knowledge in this area is not going to prove negligence(sp?) on the part of your doctor. But.....

You may have a case for your son. If your child was harmed by delivery and exhibited signs of distress that were ignored....you just might have a case. It still would not be easy, but it is a possibility.

Twilah