PPCM - DEADLY PREGNANCY COMPLICATION
  • myheartsisters
    Posts: 11Member
    Can you imagine going from healthy to complete heart failure in hours, days, weeks or months after giving birth or during your pregnancy? Would you expect to be dying of heart failure at 20 in your first pregnancy? This is one pregnancy complication few people know about but it happens to women of all ages, races and socioeconomic backgrounds. Know the signs and symptoms and save a life. Too many women are dying or suffering life long disability because they are not being diagnosed and treated but this is one disease that has excellent outcomes especially when diagnosed and treated early.

    Are you having one or more of the following symtoms
    • Difficulty breathing while lying flat
    • Cough
    • Shortness of breath on exertion
    • Swelling (edema) above and below the knee
    • Palpitations – awareness of heart beating

    You could be having heart failure in pregnancy. This is a condition where your heart enlarges and no longer pumps efficiently and you start to drown in your own fluids. If left untreated, you will die of a heart attack, stroke, or sudden cardiac death.

    Everything you ever learnt about heart disease being caused by
    age, smoking, lifestyle, diet, stress, alcohol etc does NOT necessarily
    apply to PPCM. The cause is unknown.

    What we do know is that pregnancy is stressful on the body and heart failure in pregnancy happens to women of all ages. Read PPCM Stories, know the symptoms, educate yourself About PPCM,
    because the earlier the diagnosis is made, and treatment started the
    better the outcomes. You could very well be saving your life or a life
    of someone you know. Please read the website, read the stories. We have made information easy and accessible.

    Please spread the word about this condition. Otherwise known as

    PPCM

    Peripartum Cardiomyopathy

    Postpartum Cardiomyopathy

    www.myheartsisters.com has been developed to raise awareness about heart failure in pregnancy
    (PPCM) and provide support for heart sisters through storytelling and
    friendship and to educate people on heart failure in pregnancy. Please LIKE our page on Facebook, share it with your friends and family. Link to the website. Know the signs of heart failure in pregnancy, read the stories, so you remember and know when to get help because PPCM is a silent killer. If you have been diagnosed with PPCM, please add yourself to the website and meet other heart sisters.

    I was diagnosed in July 2011. I thought I knew everything there was to know about pregnancy. Having had 10 babies but I had never heard of PPCM. I have since met many women who have also been diagnosed with PPCM and all of them would tell you that they had never heard of PPCM.  Some women develop it months after giving birth and simply think they are tired, and doctors may even suggest to them that they have post natal depression and then their heart function declines to the point where they are almost dead. Unfortunately, not everyone makes it and women die of heart failure related to pregnancy, leaving behind family and babies.

    After talking to midwives, doulas, nurses, doctors and obstetricians, very few had heard of PPCM. This is so disturbing but even if the medical community were more educated about this deadly condition that affects approx 1 in 2000 pregnancies, unless a woman knows about this complication, she may not suspect that she is in heart failure and get help.


  • momofdbbmomofdbb
    Posts: 10,900Member
    I have never heard of that before , thanks for sharing.
    " Wibbly wobbly timey wimey ......." The Doctor
    " I'm a leafe on the wind..watch how I soar ." Wash :((
    " Oh the wall had it comming.' Sherlock Holmes
    yea I am geek !!
  • AKimiBAKimiB
    Posts: 1,809Member
    Thank you!
    This will definitely be something I'll bring up at my doctor visit (once I actually go.)
    SMSM_s_5 photo SMSM_s_5_zps5d122d86.jpg
  • MorganD
    Posts: 3,436Member
    Wow, I've never heard of it, and this is 3 kids later. That's scary.
  • djnavyvet
    Posts: 1Member
    I myself have been diagnosed with PPCM.  I was diagnosed post-partum (the day after my daughter was born this past January), however after further investigation and questioning it was diagnosed as Peri-partum Cardiomyopathy, meaning I was actually going into heart failure while I was still pregnant).  My daughter is currently 7 months old, and today (August 9) is my 7 month "heartivarsary".  It has been a long, hard struggle mentally, physically and emotionally.  I've come a long way, but I also know that I've got a long way yet to go.  Its not as rare a condition as most would think, but it is definately a silent disease that desperately needs a voice.
  • myheartsisters
    Posts: 11Member
    I think the condition is much more common than the stats suggest but if women die of heart failure at home months after giving birth it is not counted as pregnancy related. Honestly. I have had flus that felt worse than ppcm and if my ppcm baby had not died, I would not have known to get help and because of his death and the investigation, every test was done on me. My story is on the site too, titled Jashers story. And that is why we have felt so passionately about raising awareness. It is not to scare women but so that if it happens they know to get and fight for help.
  • tothemoonandbacktothemoonandback
    Posts: 3,934Member

    This actually happened to me, we *think*, though it wasn't diagnosed as such..


    Totally normal pregnancy, normal delivery, a week later I was swollen every where and 10lb above my pregnancy weight.  I had a horrible cough and I couldn't breathe lying down just like that information says.   I went to my OBGYN, and he diagnosed me with Anxiety and prescribed me Xanax, thinking my feeling of breath shortness was caused from being anxious, swelling caused from overdoing my IV fluids in the hospital.  A few days later I literally couldn't breathe, and went to urgent care.  They took one look at my pulse ox and blood pressure and immediately called an ambulance (thank God I went to the doc!!).  I spent 4 excruciating days at the hospital, tested and treated for everything from H1N1 flu, Congestive Hearth Failure, double pneumonia (testing from all of which was negative).  My lungs were completely full of fluid.  I lost 30 lb overnight after I was given a diuretic.  I'm really f'ing pissed that I had to spend my first days as a mother THAT sick, and away from my baby for a week.  They never did diagnose me, and suddenly I was just 'better'.


    Scary shit.

    Imperfection is beauty, madness is genius, and it's better to be absolutely ridiculous than absolutely boring. - Marilyn Monroe
  • myheartsisters
    Posts: 11Member
    You are welcome to join myheartsisters.com and share your story. Doctors confuse patients sometimes. One heart sister did not even know she had ppcm until she demanded her medical record.
  • BlessieBlessie
    Posts: 2,108Member
    How early could these symptoms start?
  • myheartsisters
    Posts: 11Member
    They can start quite early in the pregnancy. I know of a woman who was 19 weeks and in heart failure. She found us on the internet and her doctor had sent her home but she started getting very dizzy and we asked her to go to ER. Her EF was 30% (normal is about 55%) and falling. She was put on meds and currently about 31 weeks back in hospital. Not all cardiologists are up to speed with PPCM and with this case, her cardio was not willing to contact the specialist cardios that were referred to her. She was not given all the correct meds but we are hoping she's going to pull through. I am told by a specialist PPCM cardio, that the correct meds can improve heart function even during pregnancy, though usually recovery starts to happen after delivery. They don't know what it is, but it has to do with certain chemicals/hormones in the body like prolactin and prolactin metabolites from the placenta. This is why it is so scary, because your body goes haywire. That's the best way to describe it.
  • tabs
    Posts: 1Member
    @Blessie,

    PPCM has very specific criteria. It must develop within the last month of pregnancy or within 6 months postpartum. Some cardiologists are trying to get that extend to 1 year postpartum since other illnesses associated with pregnancy have that time frame. Some cardiologists are also trying to lengthen the pre-delivery time frame as well especially if it is the second or subsequent pregnancy.

    Symptoms that start early in a first pregnancy need to be investigated. A diagnosis made early than the last month of pregnancy (for instance the woman who was diagnosed at 19 weeks) is referred to as Pregnancy Associated Cardiomyopathy. It may or may not be the same disease as PPCM, but the treatment during pregnancy is the same.
  • myheartsisters
    Posts: 11Member
    @Blessie, Yes, I am sure I developed PPCM early on in my pregnancy and delivered prematurely at 32 weeks and because I developed the full blown disease within days of delivery, I did fall into the PPCM criteria. But what if I did not deliver prematurely, then I would not have fallen into the criteria for PPCM. All, I can say being healthy all my life is that PPCM is one scary disease.
  • BlessieBlessie
    Posts: 2,108Member
    What does your blood pressure do?
  • myheartsisters
    Posts: 11Member
    Your blood pressure can be high or low. Diagnosis cannot be made on BP because for some women BP goes up and others it goes down and BP can rise for all sorts of reasons. I got a racing heart rate of 115 beats per minute.and a sense that I could feel it beating, lots of swelling and fluid build up and felt it difficult to think but everyone gets different symptoms. Some people get dizziness, an annoying dry cough, headache,but generally everyone has excessive weight gain. I put on 20kg of fluid.  To get a diagnosis of PPCM, you need an ultrasound of the heart.  There is also a screening tool on www.myheartsisters.com and that can be helpful. It goes through a series of questions and then gives you a score but if you do have symptoms or are worried, you should go an ask your doctor to check your heart. I can remember when I had unusual swelling trawling the internet for information and I must have found somewhere saying that I could be dying but I just thought it was hormones. The eternal optimist, I was and it still doesn't sink in at times, that I was really that sick.