"HELP"............I need some advise !!

[Iltwinmommy]

Hi to you all,

My name is Jodie, I am 33 and was diagnosed 2 weeks after the birth of my twins in March 2004. I was at home and went into SVT with a HR of 304. My EF was 45%. I was put on Toprol XL 50 mg. once a day and have remained on it. My ECHO's have been great....my latest 6 mos. ago was 65%. I have had zero trouble since being diagnosed.

My Cardiologist said that if I were to have children I would need to be monitored really closely...ect...

Well we have moved out of state and I found out I am pregnant. It was not planned....but I am thrilled. My only worry was me taking the Toprol.

So today I went to a new Cardiologist in our new town..........I had requested my records to be sent to him.....but somehow they did not. AND HE HAD ZERO of my history. He told me " to terminate my pregnancy and have my tubes tied":eek: ..........................I FLIPPED OUT !!!!! He had "ZERO" history on me.

Is this normal.........I left crying, and will not be back to him.

ANY WORDS OF WISDOM from anyone will be soooo appreciated

[Elliesmom]

let me first say congrats on your pregnancy!
i am so sorry that (seems to me) he jumped the gun in telling you what should be done. it's hard to find a good cardio, took me 3. wishing you the best!

[miracle baby]

Congrats on the baby.Find a doctor that you trust and will support you and give you the best advice.I know that alot of women on here has had another baby.

[Iltwinmommy]

:D Thanks to you both !!

[SusanD]

Wow....what a crazy situation ! Nice that a Dr. can give you such LIFE ALTERING advice without even having your chart in front of him. :mad: :mad: :mad:

Go to Dr.Fett's board here and read, read, read, read and educate yourself and find a Dr. who is at least willing to work with you even with the risks.

[LauraNP]

Hi and welcome! I also have b/g twins that were born March 2004. I'm also 28weeks pregnant with a singleton. My story is a little different because I don't have PPCM, I've had dilated cardiomyopathy for 12 years. But many women do fine after PPCM especially if they are fully recovered. My suggestion is to find a new cardiologist, preferably one that has a clue!

We're here for you, feel free to ask or vent whenever you need to.

[SerenaWelsh]

Jodie,

To answer your question - it's ALL to normal. But it's not right. Take a deep breath and rest assured that you fell into the hands of a doctor who is jumping the gun.
If you'd like assistance with finding a cardiologist for a second opinion, send me an e-mail. We've been able to help some (not all) women, depending on their location.

Congrats, and good luck!

[marissar]

Find a cardio and ob that will work together. Even though I can't get preg now before hubby was fixed they were both on the same page if I would have gotten pregnant. While neither one suggested getting preg again they both told me it was my choice and they would be supportive if I did. They also said they would watch very closely if I were to get preg. I wouldn't rest until I found 2 drs that like this.

[Iltwinmommy]

You all have put me at ease.........I can not thank you enough !!
It was a crazy day !!:confused:

I will def. be looking for a new doctor.....I guess I was soooo mad at the fact that this Dr. did not have one piece of paper about me, and made such a harsh "personal" decision........b/c I believe it is a decision my husband and I need to make.................he kept saying.."I know you will make the right decision"....as if I were a kid.

I knew I could count on you guys for help....again "thanks" !!

[SusanD]

You all have put me at ease.........I can not thank you enough !!
It was a crazy day !!:confused:

I will def. be looking for a new doctor.....I guess I was soooo mad at the fact that this Dr. did not have one piece of paper about me, and made such a harsh "personal" decision........b/c I believe it is a decision my husband and I need to make.................he kept saying.."I know you will make the right decision"....as if I were a kid.

I knew I could count on you guys for help....again "thanks" !!

All I can say is how totally unprofessional to a.)make a diagnosis and recommendation for a patient without even having the chart in front of him and b.)to make a decision without even looking at relevant and current research. Sounds like the last research he read was in 1995 !

I have a huge amount of respect for a healthcare professional who gives an honest opinion AFTER they have performed a complete assessment, read all the records, compared it to current research and guidelines AND discussed it with the patient. It sounds like your visit today didn't fit into any of these parameters.

[melissamph]

I would like to let you know that I am praying for you and the baby. It is a hard road. It is difficult to find a doc up to date with PPCM. I pray you are able to find one soon. Welcome and know you are among friends who want to see you succeed! Hugs

[Janelle]

I live in Rock Falls, Illinois--aout 2 hours west of Chicago. I am currently seeing Dr. Nicholas Shammas from Genesis Heart Institute in Davenport, Ia. It's about an hour drive from my house. If that's too far from you, maybe he could recommend someone for you. Let me know if I can help!!! Hang in there and please know you have come to the right place!

[Iltwinmommy]

:D Well I guess I should say...LOL....that I just moved back to Georgia in April.....but when I registered on here I did live in Long Grove Illinois, a NW suburb of Chicago. BUT THANKS !!!!!!! I now will be living in Woodstock, Ga. it is about 40-45 min from Atlanta.

[carriep]

Jodie
I am 34 weeks pg with my post ppcm baby and what has been the most helpful for me is having a high risk ob with a good knowledge base of the condition. Although I already had a cardio, he had a group that he works with when presented with women in our situation and was willing to refer me to them. How far along are you??

[tinabowen]

They are so great Dr's out there who know about Subsequent pregnancies and they are some who know the data but still sugest Termination.
Maybe your OB knows of a Cardiologist that can handle a Post PPCM baby.
With me as soon as I was diagnosed the OB's were saying NO MORE BABIES where my Cardiologist was the one who said I could have Another.

I am sorry that they upset you but it seems like it's the Norm for some Dr's, I seen a Resident a few months ago that asked me "DO you have a death wish" when he figured out my youngest was born after I was diagnosed. I was hurt but I did my Best to educate him. So if you do go back to this Dr find as much Info on Subsequent Pregnancies as possible to show him.

[JAMESFETT]

You are in the most favorable group for a subsequent pregnancy following a diagnosis of PPCM. I expect that you will do very well, and wish you the best. On this site I have several posts (on doctor/nurse line and post-ppcm baby line) that suggest best ways to monitor anyone in a similar situation, so I think you will find them or those who can guide you to them. You can also go to "Entrez PubMed" on internet, type in search "fett jd" and you will have access to abstracts of several recent articles on PPCM. In the July 4 issue of Annals of Internal Medicine, we also have an article on subsequent pregnacy after a diagnosis of PPCM.

JDF

[amandabenjamin74123]

my cardiologist also told me that he would "recommend" me against future pregnancies. this he is telling me, at 19, unmarried, and with a beautiful 3 month old. i love children and all i ever wanted to do was become a mother. thanks to this site, i feel a lot more confident in my decision NOT to have my tubes tied. and congrats on the pregnancy, and just remember it's all in God's hands.

[Iltwinmommy]

:D Hello ,

I went to have my ECHO done last Friday and my EF was 65%. I also found out that 3 mo. after I was diagnosed with a EF of 40-45% my EF was 61%.

I was glad to hear it had went up so quickly....b/c I was not aware of when it did.

I was very pleased, and look forward to my OB apt @ the high risk OB.

THANKS AGAIN !!!!!

[sfekke]

Hey,

Congratulations!!! Have you thought about finding doctors at Emory? I know they are doing research on PPCM there as well. You are in a great area for doctors.

I wouldn't give a second thought to the cardio. I think when you tell someone to have their tubes tied you should at least have looked at the latest research.

I am 15 wks preg. myself and have been waiting anxiously for someone new to announce they're pregnant! When are you due? Listen, I have been to an OB and a peri who both had very negative responses, not quite so negative as yours though. The OB is now willing to take me on. The last time I went to the Peri he said he didn't need to see me regularly because I'm seeing his colleague a maternal cardiologist.

I look forward to hearing more of your story.

Best wishes,
Sarah