Mandy's Mom

[jmonte]

Hello all,
I'm new to this PPCM. My 21 year jold daughter was digionosed March 5th of this year. We new nothing about this at all. She was sent home with alot of swelling all over her body and high blood pressure. On Sunday she couldn't breath her husband took her the the er which she had to wait 6 hours to get in. Finally when they saw her she was suddendly place on a vent. 2 days later was moved to a regular room. Shw is on 7 medications. Was told that the first 3 month she will still be in the woods. Her EF was 30, they did and ECHO when we left hospital on the14th and it had dropped to 25 . Was told this is normal. Is it? I have been reading all of your posts and it has helped alot. Just scared to death she might still die. Could someone tell me what to expect for the next 3 months. lShe is 8 hours away from me and i have been going down once a week to help with precious Sarah. Which we have been told will be the only child she can have. I would love to hear from all of you as to what we can expect for a while.


Welcome Mandy's Mom- I moved your message to a new thread so it would be seen better. My name is Julie and I'm sorry your daughter has PPCM. The women here are so full of knowledge and support I think you'll find comfort here. I'm not sure exactly what you should expect as I didn't present with symptoms. I am certain others will respond with more info for you. Any specific questions please ask- we all have been there. I can say that the meds are doing wonders for all of us here. Where is your daughter being treated? Does she have a CHF specialist or a regular cardiologist?

[Lauren]

Please feel free to call or email me anytime..I sent you an email w my number. I will say a prayer for your daughter and family...Lauren

[Mandy's Mom]

I think right now she just has a cardiologist. I am so glad i found this site i think it will help me get through this. Mandy lives in Waco and i live in the Texas Panhandle 8 long hour away. But through prayer we will get through this.

[Lauren]

You will get throught this...I am sure of it. We all did and still are..but I honestly think this disease, crap, whatever it is, Makes US better women. We are all so involved and in love w our lives. The things i use to take for granted are things i am thankful for everyday. Your daughter will live to see how beautiful life can be.

[mom2gageandkeely]

Hello again- I posted a message to you as well. I live in lewisville Texas- not that far from Waco!

[JAMESFETT]

Here's a prayer for complete healing for Mandy. On any echocardiogram the difference in a test can easily vary from 25 to 30, that's called the "Standard error" or "standard deviation". So that either one would be approximately equivalent, but below the normal of over 50 percent. I am sure her cardiologist is treating her with the best medications (in PPCM that means diuretics to control excess fluid, and then a combination of ACE-inhibitors and Beta-Blockers, which fits the "evidence-based" standards of care for congestive heart failure as recommended by the American Heart Association). Because of the risk for blood clots when the EF is below 30, anti-coagulants are used to prevent small pieces breaking off (emboli). Improvement may come rapidly in the first few days to weeks, or may take longer. Best wishes for all your family.

James

[Mandy's Mom]

Thanks for the info. Yes Mandy is on Altace, Coreg, diuretics, anitbotics, Digoxin and others. I know the first 3 months are critical is that correct? I have another daughter that has had 3 children and nothing was ever wrong except preemies. But nothing with the mom. So this was a big shock. Mandy was swelling really bad the last 2-3 months, last month her face legs arms actually whole body. She was released to go home with all the swelling and high blood pressure. We were assured this was normal. What do we know i guess.She was on Mag for b/p and was released to go home within hours of getting the mag. We were told they should have kept her for at least 24 hours after Mag. She went to the ER and had to sit for 6 hours before getting any care. Which after being seen was immediately put on vent and was told if she waited any longer she would not have made it. Bust why the long wait. I'm thanking it was there fault she got so bad. But what do i know. Thanks for the email. We are just trying to get through the first 3 months and then maybe we will be out of the woods as the docs say.

[JAMESFETT]

So far as survival, the most critical time period is the first few days to two weeks. So far as healing, that may continue for many weeks, months, even years. While Digoxin may be necessary early in the course, and there are definite indications, it is also one of the first medications to discontinue with improvement, there may be some special risks for women to take digitalis/digoxin. It is actually being used much less frequently in heart failure, thanks to the other better and safer medications. We are trying to get the message across to think of PPCM with any of the signs of heart failure in the last month of pregnancy up to the first 5 months after delivery. To think of PPCM is to then do an echocardiogram, which will make the diagnosis. Earlier diagnosis may be critical in the rate of improvement as well as survival and ability to recover left ventricular function.

James

[Lisa V]

I would like to send you a WELCOME and to let you know that this site of woman is a blessing. I was diagnosed 5 years ago with an EF of 10% and told that I wouldnt even make it throught the night. Well, I did and then I was told that I would need a heart transplant, I didn't need that either. My EF is currently holding around 50%. You daughter will get better but may be limited on activity for quite some time. The only thing I did was take care of the baby when I first came home and my hubby did everything else for 6 months. Please know that my prayers are with you and your daughter at this very delicate time. If there is anything that any of us can do please let us know. Please keep us op to date on your daughter's progress.

[Yvonne]

To Mandy's Mom,
Welcome on the board! I find it a very good place to go and share experiences. It is a big releave for me to have this.
My story is similair to Lisa's (and many others). I got in hospital with an EF of less then 15% and was assessed for a hearttransplant. Within two weeks (with ACE-inhibiter, betablocker, frusemide, spironolacton, heparine and digoxin) my condition improved. They told me I would not be on the list any longer and my progress was encouraging, my heartfunction improved from 'awful' to 'bad' they said literaly. I was send home, but could hardly walk one corridor and just sit in a chair for only one hour (then I was complete worn out). Now I'm typing this I can't believe this was only 6 months ago.
At this moment I can do a lot more. I carry my son (22lbs), do light things in my house and can walk for 10 miles now. I still need my nap in the early afternoon, but I almost have a normal live. My EF is around 40%, but there have been measured different values on different days. Especially after changes in medications it seemed to drop a bit, but only temporarely.
I hope I can help you a bit.
For questions of more help you can always send me a private message.

[NursCEO]

I just wanted to let you know that I live just north of Austin, so, within an hour or so to Waco. I am also a nurse and would love to either speak to you or email with you. I was diagnosed 2 years ago with an EF of 30. I am now at 60 and feeling great. My email is nursceo@yahoo.com.

Wishing you the best.

Carrie

[SarahsMom]

Mandy's Mom,

Sorry you had to find this website! Your daughter is on the proper medications...I was on Coreg and they call it the miracle drug for the heart. It is critical that your daughter rests her heart as much as possible...I was told NO STAIR CLIMBING! Her little heart has been working so hard, the best thing she can do for it is REST, REST, REST!!! I too, have a "precious Sarah" and they say she's the only one for me! I'm still researching. My parents were like you...scared to death, but I came through just fine. I was diagnosed at 20 - 20/EF and three months later I was 45% and six months 55% and a year later I'm off all medications (they said I'd be on them for the rest of my life).

I know you guys all expected the birth of Sarah to be the happiest time of your and Mandy's life and it's turned into a terrible nightmare...I know, I've been through it! Make sure she rests and we'll be reading of her remarkable recovery over the next 6months to 1 year!!!!!!

I'll be praying for Mandy!!!

Love,
Kari

[tabs]

I just wanted to say welcome! I, too, am sorry that you have to be at this site. I was officially diagnosed five years ago and ended up with an ef as low as 7%. I am not over 40%. My daughter's name is Sarah as well. She is my third child. They feel that I had this with all my pregnancies and was just not diagnosed. My parents still worry about me, but I think that that is a parent's job!
Twilah

[Caramommy]

You hang tight, things will be okay. The stories on this site will tell you that.

For my own, I don't go over it very often anymore, but I was finally properly diagnosed three months after my baby was born. I was down to 16%, then in a year got up to 50%, but after I was taken off my ace inhibitor it went back down to 40%. I have not had another check since then, but I was placed back on a tiny dose of ace and I hope it helped. My doctor says he feels everything will be okay because my heart looks strong on the echo, but that my EF likes to jump around. This can be caused by many things, meds, the person reading the test, LOTS of stuff! So don't hang your hat on every little number in that test...even though that's hard not to do! I was a basket case for the first year, and then I grew stronger. When I found out my EF had dropped, I started crying for about ten minutes and then I said, "Wait a minute...I've come too far to let this one test tear me up this way!"

It's an up and down situation, but things generally get better and better.


Blessings,
Cara

[momoftwoboys]

Hello, welcome to the boards. I was diagnosed with PPCM (after my second pregnancy) at the age of 23. My EF was around 30% when I had my first echo. I was put on Digoxin, Toprol XL, and Accupril. After a year of not seeing any improvement (throwing out that first 3-6 month rule), I got a second opinion and was switched from Troprol XL to Coreg and FINALLY saw some improvement in my EF. Then, after another 6 months to a year, when my EF got "back to normal" (in the 60's) I was taken off of the Lanoxin. It's been over three years now since diagnosis and I'm still taking Accupril and Coreg. So, don't lose hope if, for some reason, your daughter doesn't see drastic improvement after the first 3-6 months because I'm living proof that improvement can possibly occur later than that. Tell her to rest up for now and take care of herself. Give her my blessings and hope for a good full recovery. :)

[Mandy's Mom]

I really appreciate the response i have gotten from all of you. It is really helping me cope with this. Mandy goes today for her coumidan level check which has been way to high. She is feeling a little better but tires real easy. She has a checkup with the cardio doctor on April 1. Maybe will know a little more then. It will only be a month since she was dignoised. Thanks for all the concern and for all the prayers. I have faith we will beat this and get much better.

[momofthree]

Dear Mandy's mom,

I found this site recently, too. Because I am still new to it, I take extra time to read older posts and happened across yours. Well, reading from your perspective reminds me of what my own parents must have gone through. It is seemingly unbelievable at times that this could happen, isn't it? But thankfully she was sustained until she could be diagnosed. How is Mandy's emotional state? Is she hopeful and able to see the light at the end of the tunnel?

I went through some denial at first. Then I got worse and ended up in the hospital for a long time when my doc. took me off all meds suddenly. So, lesson learned, take your meds and really talk to the doc about symptoms and side effects. Do not be afraid to dig deep and to make the doctor do his/her job when it comes to keeping you informed. Build that relationship.

I agree, she should rest as much as possible right now. I am finally now up and about at 6 months because of the turns my heart took and I remember when I felt I could do nothing. It can be discouraging. I had to pray that God would help me to function where my body was at, not where I wanted it to be. Patience is key.

Enjoy each day and do not get into "failure" issues. I felt like such a chump mom watching all these new moms push their kids in strollers and carrying them in packs. I could do nothing of the sort. It hurt. So I made goals that one day I would be able to do all the things moms do. I have three kids so there were different goals for their ages. But don't rush.

She needs to love herself enough to listen to her body. I think I tried to overdo it sometimes because I wanted to do so much more for my family. It is not selfish to say "no" or to put something off.

These things just came to mind. Bless your heart. This is a great group. Who knows what will happen on the 1st, but someone already told you to avoid getting into the numbers game. It is hard not to. I struggle as I wait for my next ECHO. But it is not healthy and can be confusing as many have stated due to interpretations.

God bless you all. How is your grandchild? Keep us posted after her followup. I am so glad you posted. I think I will tell my folks about this site, too. When no one had any information on PPCM, I started my education on a website similar to this one (the one Brandy had) and it saved my life and my sanity.

Love to you all and much hope for a great recovery!
Alison