What is peripartum cardiomyopathy?

Few months ago, my sister died of peripartum cardiomyopathy. After 5 months of giving birth, I noticed her tummy was still big like of a 4 months pregnant. Her face and feet swelled too. After a series of test, she was diagnosed of this sickness. Those years that she suffered from that sickness, complications came after another, kidney failure etc.

I am having a hard time coping up with her lost just as I don't have any idea about this kind of heart ailment. I will appreciate much if you can help me understand about this?

Thanks,
Carol

Hi Carol,

I'm so sorry to hear of your sister's passing. My mother passed away when I was only 16, so I know the feeling of loss well and I know how very hard it can be to work it through. Time does tend to help heal the pain.

I will do my best to help you understand what Peripartum Cardiomyopathy is and why it occurs.

PPCM is associated with congestive heart failure where the heart fails to pump blood effectively to the body's vital organs.

The cause of PPCM is actually not known, but researchers are investigating a variety of possible causes. Some of these are autoimmunity or immune system dysfunction and micronutrient or trace mineral deficiencies.

When the body is utilizing the nutrients from your food and supplements well, it will have a strong immune system and will be able to stay strong and healthy much easier. So what helps the body to utilize nutrients well? Regular exercise (bringing oxygen to the organs and muscles in the body), and low stress. The higher your stress, the less nutrients the body will be able to absorb. And, of course, this is all dependent upon the quality of food and nutrients that you actually make available to your body (what you eat and drink).

In order to reduce your chances of developing PPCM, it's important to take a high quality prenatal vitamin supplement during the preconception phase and during pregnancy.

Then, of course, be sure you get plenty of exercise and take extra care to build "rest time" into your day, so that you can have low stress during pregnancy. It's also important to do all you can to reduce stress after baby arrives. This may mean asking for help with household chores, meals and even caring for baby, so that you can get much needed rest which will help to speed recovery after giving birth.

This wikipedia article on Peripartum Cardiomyopathy explains it in much more detail.

Please let me know if this answered your question or if you have any further questions about PPCM.

Warm Regards,

Kate

Please let me know if you have

Hi Kate,

My sister and I were close with each other. Aside from the fact that she's a single mom, she's my right hand in everything. Well, as you have said, time will help me ease the pain.

I have read the article and helped me understand what is PPCM is all about. Maybe, it's her passing that prevent me from uderstanding it well.

Thanks,
Carol

Carol, I am so, so sorry for your loss. I was diagnosed with PPCM when I gave birth to my twins almost two years ago, and was in congestive heart failure as well. Part of what makes it so hard is that it's really not very well-known. There's a group of women who are working very hard to get the word out, along with Dr. James Fett.

One site that helped me was A Mother's Heart. Not only does it have lots of great information, but it's a wonderful support as well. Dr. Fett is an active poster on the message boards. We also have a private Facebook support group.
The site can be found at amothersheart (dot) org. Sorry, I don't have enough posts to post a link. I actually found this through Google and joined just to answer you.

There has been so much new information on PPCM even in the two years since I was diagnosed. Several new studies have been completed or are in the works. From what I have learned, there can be several reasons for PPCM. They have found a genetic component in some women. For some women, it is viral (there have been "clusters" of PPCM reported) or autoimmune related. In my case, they think it was caused by a fluid overload because of the twins-- my body just wasn't able to handle the excess fluid of a multiple pregnancy. PPCM isn't anyone's fault-- there is nothing you can do or not do in order to prevent it other than just not get pregnant. It has absolutely nothing to do with how well you eat or what vitamins you take, although of course all those things contribute to a healthy pregnancy. It has absolutely nothing to do with stress or exercise. It has nothing to do with how much help your sister had after the baby arrived.

As someone who has been through this, I will be more than happy to answer any questions you might have.

Again, I am so sorry.
Annette

Quote:

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Originally Posted by carolg

Few months ago, my sister died of peripartum cardiomyopathy. After 5 months of giving birth, I noticed her tummy was still big like of a 4 months pregnant. Her face and feet swelled too. After a series of test, she was diagnosed of this sickness. Those years that she suffered from that sickness, complications came after another, kidney failure etc.

I am having a hard time coping up with her lost just as I don't have any idea about this kind of heart ailment. I will appreciate much if you can help me understand about this?

Thanks,
Carol

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My name is Lisa.I have a beautiful little girl who is 2. I am a retired RN who is disabled. Why disabled at 30? PPCM.

I think it is important to start from the beginning on what Peripartum Cardiomyopathy (PPCM) is but first I would like to tell you that, like so many people, and quite frequently the majority of the internet, 5Homebirths4Kate is VERY VERY WRONG on her description of what PPCM is. The reason for this is the rarity of it, the lack of medical knowledge about it, and the lack of public knowledge in its existance. When I was first diagnosed with it, I had never heard of it...and I've been an RN for 11 yrs. They say 1 in 2000-4000 women who have kids will develop a level of PPCM. If a case is mild it's not often diagnosed so it's hard to really determine the statistics. Most cases that are diagnosed are the more severe ones.

So, let's start at the beginning. Peripartum means during pregnancy. Cardiomyopathy means enlargement of the heart. What happens is that, for some reason, (they are linking it to some viruses that can affect the heart but you think it's just a cold), most frequently genetic, or something else. They have found a common genetic link for most people, but there has to be something to cause genetic link to mess up.

We now know that it causes the heart to enlarge during pregnancy. Bc the heart is a muscle, the enlargement of it can cause problems. The heart squeezes to push blood out and as it relaxes it pulls new blood in. The bigger the heart muscle, the less ability to squeeze and pull. Now you are getting less blood through your system. So...the heart has to beat faster. Because less blood is getting through your kidneys, less fluid is removed. This means it can (but doesn't have to) back up. It can create what the medical community calls edema. The excess fluid leaks out of the blood and into the tissues. It usually occurs in places closest to the ground. If you are able to be up walking, it will make your legs and feet swell, and maybe your hands.

Now that the heart is at this "place," one of two things can happen (after the baby is born it may heal itself). It can stay where it's at, or it can get worse. When it gets worse, you develop what is called Congestive Heart Failure (CHF) or just heart failure. Your heart doesn't beat right and causes your blood to back up in other places than just the legs. Frequently blood and fluids will back up in your lungs. This causes breathing problems. Because your blood isn't being pumped correctly, you also tend to have low oxygen level in your blood. This means your organs aren't getting the oxygen they need. This can lead to memory loss, confusion, black outs, and organ failure if severe enough.

60% of all cases will resolve after birth & the woman will be left with no long term physical problems. However, if you're one of the 40%...it can improve some, none, or get worse over time.

NOW FOR WHAT DOESN'T CAUSE PPCM!!! THIS IS VERY IMPORTANT!!!
Health care prior to pregnancy or during pregnancy has NO relation to PPCM!
Exercise or lack of it has NO relation to PPCM!
Diet has NO relation to PPCM!
Quality of food has NO relation to PPCM!
The region in which you live has NO relation to PPCM!
Stress levels have NO relation to PPCM!
The use of (or no use of) prenatal vitamins has NO relation to PPCM!
The quality of prenatal vitamins has NO relation to PPCM!
Taking prenatal vitamins before conception has NO relation to PPCM!
Plenty of sleep (or lack there of) has NO relation to PPCM!
Using cleaners that aren't organic has NO relation to PPCM!
Your weight has NO relation to PPCM!

WHAT DOES CAUSE PPCM?
Studies show African Americans have an increased risk
Studies show women multiple births (twins, triplets, etc) are at an increased risk
Studies show if you have a history of PPCM you increased risk
A genetic link they JUST found
A history of autoimmune disorders have shown an increased risk
Studies show women over 35 have an increased risk
Pre-eclampsia also increases your risk
PPCM is very scary and very devastating. You go from being a healthy individual to disabled. I took prenatal vitamins for years before I got pregnant. My OB did a pre-conception check up. I had a semi-stressful job, but a very low stress life. I worked out and ate healthy. My doc was happy with my weight. I got plenty of sleep. I didn't use drugs or drink alcohol. I rarely ever got sick. I had a loving relationship with my husband. Life was great. Then, near the end of the pregnancy, the annoying symptoms changed to big problems...chest pains, racing heart, problems breathing, swelling in my hands, legs, and feet. My OB said they were normal problems. As an RN, I knew this, but I also knew that something wasn't right. I remember telling people it felt like I was dying. I slept sitting in an upright position with 4 or 5 pillows because if I laid down I felt like I was going to suffocate. I would go through 2 ER visits, multiple general practitioner visits, a PA, a lung doc, an endocrinologist, THREE cardios, and 3 GI doctors before someone could diagnose me. My 3rd cardio knew of PPCM & diagnosed me with PPCM and CHF in the first visit. He said I had about 20 pounds of fluid on me that was backed up everywhere. I was also diagnosed with restrictive lung disease due to the fluid that had set on my lungs for so long causing scar tissue. I am on oxygen.

Because this is a rare disease, it gets frequently overlooked to where some women die from it. Like I said, I went through three cardio. The 1st one told me I was just fat. I told him I gained 10 lbs in 1 week...he suggested he should put me on a diet. He literally kicked me out of his office and said he had called my pulmonologist and that I needed to go to her immediately because my oxygen level was 65%. (A healthy adult should be above 90%. If you are in a hospital and it is 80% or less, you will automatically be put on oxygen.) He also said my heart wasn't enlarged it was just shadowed on the x ray. The 2nd cardio said my heart was enlarged, but he would need a copy of all medical records since I delivered without a physical assessment. At this point a friend suggested her PA. I sat down with her & talked, she did an assessment & put me on diuretics...in 2 days I lost 8 lbs & my oxygen level came up. By the time I got to see the 3rd cardio I had a lot of problems.

There was nothing you could have done. Getting her to get medical assistance when you realized something might be wrong was the best thing you could have done. Sadly enough, a lot of people who are diagnosed with PPCM get subpar care because most MDs (and quite a few cardiologists even) treat it like most cases of CHF and are treating it wrong. My two ER visits for not being able to breathe were interesting. Once I was diagnosed with Pneumonia (It wasn't Pneumonia, it was fluid in my lungs) and once I was diagnosed with a panic attack. The doctor wrote in my chart that I was calm and happy. He also said my oxygen level was fine...while I was on oxygen. I went to a lung forum (after i was diagnosed with restrictive lung disease) & explained my situation. Someone gave me advice I have never forgotten. "You have to be well enough to be sick." I had to be my own patient advocate. Had I not gotten a 2nd or 10th opinion, I'd probably be dead. I pray you can find peace. I pray you will understand something that is very important. (I don't know if you have children or not) But I don't know of a single mother or father who has said, "If we had known this would happen, we wouldn't have had her." Knowing what I know now, I would go back and do it all over again. Your sister would die all over again to give her precious baby life. I know you are devastated. She was a sister, a daughter, a mother. Her baby lost their mother. It isn't right. The only thing you can do now is help your niece or nephew grow up, and fight for your sister. Please also take into consideration that since they have found a genetic link to it, that if she had a daughter, her daughter is at an increased risk (most likely) and so are you.

(part 2)

NOW FOR WHAT DOESN'T CAUSE PPCM!!! THIS IS VERY IMPORTANT!!!
Health care prior to pregnancy or during pregnancy has NO relation to PPCM!
Exercise or lack of it has NO relation to PPCM!
Diet has NO relation to PPCM!
Quality of food has NO relation to PPCM!
The region in which you live has NO relation to PPCM!
Stress levels have NO relation to PPCM!
The use of (or no use of) prenatal vitamins has NO relation to PPCM!
The quality of prenatal vitamins has NO relation to PPCM!
Taking prenatal vitamins before conception has NO relation to PPCM!
Plenty of sleep (or lack there of) has NO relation to PPCM!
Using cleaners that aren't organic has NO relation to PPCM!
Your weight has NO relation to PPCM!

WHAT DOES CAUSE PPCM?
Studies have shown that African Americans have an increased risk of PPCM.
Studies have shown women who have multiple births (twins, triplets, etc) are at an increased risk.
Studies have shown if you have a history of PPCM you have a chance of it recurring.
A genetic link (I'm not sure what it is, and even if I knew what it was, your insurance company wouldn't cover it because they just discovered it within the past few months).
A history of autoimmune disorders have shown an increased risk of PPCM.
Studies have shown women over 35 have an increased risk of PPCM.
Pre-eclampsia also increases your risk of PPCM.

Just because you develop PPCM doesn't mean you won't have a healthy baby. Most of us delivered healthy babies. PPCM is very scary and very devastating. You go from being a healthy individual to disabled. It's not right or fair. I took prenatal vitamins for years before I got pregnant. My OBGYN was asking when we were going to have children. He did a pre-conception check up and everything. I had a semi-stressful job, but a very loss stress life and was looking for a new job at the hospital where i worked. I worked out and ate fairly healthy. My doc was happy with my weight. I got plenty of sleep. I didn't use drugs or drink alcohol. I rarely ever got sick. I had a loving and happy relationship with a wonderful man (my husband). Life was great. Then, near the end of the pregnancy, the annoying symptoms changed to big problems...chest pains, racing heart, problems breathing, swelling in my hands, legs, and feet. My OBGYN said they were normal problems and since I was short, it would be more common. As an RN, I knew this, but I also knew that something wasn't right. I remember telling people it felt like I was dying. I slept sitting in an upright position with 4 or 5 pillows because if I laid down I felt like I was going to suffocate. (I later found out I was retaining so much fluid that it had backed up into my lungs). I would go through 2 ER visits, multiple general practitioner visits, a PA, a pulmonologist, an endocrinologist, THREE cardiologists, and three GI doctors before someone could diagnose me. My third cardiologist knew of PPCM and diagnosed me with PPCM and CHF in the first visit. He said I had about 20 pounds of fluid on me that was backed up everywhere. (I kept a lot of it in my abdomen.) To this day, if I have a large amount of fluid on me I will look 6 months pregnant. I actually have argued with people over if I was pregnant or not because of this. I have to keep my maternity clothes because if I retain fluid too much, I can only wear maternity clothes. I was also diagnosed with restrictive lung disease due to the fluid that had set on my lungs for so long causing scar tissue. I am on oxygen when it's too cold, too hot, or there is too much humidity in the air.

Because this is a rare disease, it gets frequently overlooked. Sadly enough, it gets overlooked enough that women die from it. Some women have to have heart transplants, pace makers, and other things. Like I said, I went through three cardiologist. The first one told me I was just fat. I told him I gained 10 pounds in 1 week...he suggested he should put me on a diet. He literally kicked me out of his office and said he had called my pulmonologist and that I needed to go to her immediately because my oxygen level was 65%. (A healthy adult should be above 90%. If you are in a hospital and it is 80% or less, you will automatically be put on oxygen.) He also said my heart wasn't enlarged it was just shadowed on the x ray he took. The second cardiologist said my heart was enlarged, but he would need a copy of all medical records since I delivered and he would see me again. He didn't even do a physical assessment. At this point a friend suggested her PA..which saved my life. I sat down with her and explained everything, she did an assessment and put me on diuretics...in two days I lost 8 pounds and my oxygen level increased some. By the time I got to see the third cardiologist I had a lot of problems. Needless to say, life took an unexpected turn.

There was nothing you could have done. Getting her to get medical assistance when you realized something might be wrong was the best thing you could have done. Sadly enough, a lot of people who are diagnosed with PPCM get substandard care because most doctors (and quite a few cardiologists even) treat it like most cases of CHF and are treating it wrong. But unless you have an extensive knowledge of medicine and are very outspoken, you can't really fight with the doctors. And even if you have the knowledge and the outspoken personality, it doesn't mean they will listen to you. My two ER visits for not being able to breathe were interesting. Once I was diagnosed with Pneumonia (It wasn't Pneumonia, it was fluid in my lungs) and once I was diagnosed with a panic attack. The doctor wrote in my chart that I was calm and happy. He also said my oxygen level was fine...while I was on oxygen. Who knows, maybe I was having a panic attack...because I couldn't breathe. It wasn't the other way around...lol. I went to a lung forum (after i was diagnosed with restrictive lung disease with a lung capacity of 58%) and explained my situation. Someone gave me some advice I have never forgotten. They said, "You have to be well enough to be sick." I realized what they meant. I had to be my own patient advocate. Had I not gotten a second or third or tenth opinion, I would probably be dead right now. I pray you can find peace. I pray you will understand something that is very important. (I don't know if you have children or not) But I don't know of a single mother or father who has said, "I wish we didn't have the baby." Or, "If we had known this would happen, we wouldn't have had her." Knowing what I know now, I would go back and do it all over again. Knowing what we know now, my husband would do it all over again. Your sister, I know 110% even without knowing her, would die all over again to give her precious baby life. I know you are devastated. She was a sister, a daughter, a mother, a wife. Her baby lost their mother. It isn't right. The only thing you can do now is help your niece or nephew grow up, and fight for your sister. Please also take into consideration that since they have found a genetic link to it, that if she had a daughter, her daughter is at an increased risk (most likely) and so are you. Please also know that just because you have one or two healthy and safe pregnancies doesn't mean you won't develop PPCM in a subsequent pregnancy. I know one Mamma who has 6 babies.

I'm sorry this post is so long, but it's hard to answer your questions without making it a long post.

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Originally Posted by carolg

Few months ago, my sister died of peripartum cardiomyopathy. After 5 months of giving birth, I noticed her tummy was still big like of a 4 months pregnant. Her face and feet swelled too. After a series of test, she was diagnosed of this sickness. Those years that she suffered from that sickness, complications came after another, kidney failure etc.

I am having a hard time coping up with her lost just as I don't have any idea about this kind of heart ailment. I will appreciate much if you can help me understand about this?

Thanks,
Carol

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Carol,

I am so sorry for your loss. I developed peripartum cardiomyopathy just over a year ago and like many women the disease took me by surprise. You don't expect to go into heart failure, just after giving birth, and in all of the pregnancy websites pr information provided to pregnant women, PPCM is never mentioned as a complication in pregnancy.

Research attention is focussed on treatment and management of peripartum cardiomyopathy and therefore there is speculation about what causes it. Myself personally, I do agree with 5homebirths4kate , that chemical imbalance and deficiency and stress, lack of sunshine (vitamin D) had a big role in developing PPCM. How I can say this is because I have had ten previous, healthy uncomplicated pregnancies. For some women it may be viral though or have cardiomyopathy run in their families or as Annettemarie says, fluid overload with twins can be a factor.

Dr. James Fett believes that zinc deficiency is one of the triggers for PPCM in Haitian women who have the highest rate of PPCM in the world. Interestingly, my family was zinc deficient, even though we ate organically. My optometrist told us that because of modern farming zinc has become depleted in the soil and suggests to his patients to supplement as needed (when you have white spots on your nails) and to eat fish at least twice a week. The problem is that not only is zinc depleted but other minerals like magnesium and in pregnancy you do use up lots of minerals to create a huge vascular network to support the growing baby. Researchers believe that PPcm is a vascular disease.

I have found it helpful to read other women's stories and there is a site you can join to help raise awareness about PPCM. The site also has information relating to PPCM and links to other PPCM websites. Carol, I am not sure if you know your sister's story but you could tell what you do know of it, and add her story to the website. A number of the stories are private, so you need to join to read them. www.myheartsisters.com


I am so sorry for your loss. I too suffered a death due to PPCM and know how devastating and final death is.

Hi Annettemarie,

Thank you so much. I don't know how I feel upon reading your reply..I am happy though cause of additional knowledge about PPCM. Thank you for searching the site for me. I'll try to visit amothersheart.org too.

I just wish my sister is still with me right now..maybe, we can do something to make her feel better.

Carolg

Hi myheartsisters,

I like your username..please take care of yourself. I have seen my sister suffering..thank you so much for sharing the website. I don't know if I can share my sister's story, I know she hide something from me. We are so close and maybe she don't want me to worry. Months before she died, she told me that she's too tired of her sickness, and that she'll not going to live long. That fateful day, she told everybody that "she's tired and she want to rest.." thought she was only sleeping until my father called her to eat and she respond no more..

Carol

Quote:

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Originally Posted by carolg

Hi myheartsisters,

I like your username..please take care of yourself. I have seen my sister suffering..thank you so much for sharing the website. I don't know if I can share my sister's story, I know she hide something from me. We are so close and maybe she don't want me to worry. Months before she died, she told me that she's too tired of her sickness, and that she'll not going to live long. That fateful day, she told everybody that "she's tired and she want to rest.." thought she was only sleeping until my father called her to eat and she respond no more..

Carol

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Carol,

I am so sorry. I think there comes with the disease a sense of shame and that your sister became isolated. It's a disease that is hard to accept, and understand. I hope you will join the site anyway, even if you don't want to add her story. I hope by reading the stories, you gain some insight into the disease and know that your sister loved you so much, she wanted to protect you from it. It's good that you know about this disease, just in case it happens to you or someone else in your family. If it is caught early, treatment is very effective. I was diagnosed early, and recovered fully. I consider myself fortunate, even though, my recovery came through much grief.

Hi Carol,

I just wanted to mention that I took an hour to read myheartsisters personal journey with PPCM and she shares some incredible information on natural remedies that helped her to recover AND what she feels contributed to her initial development of PPCM. It is well worth the long read - truly. An incredible story and shows you the areas you can control which will reduce/eliminate your chances of getting PPCM.

Warm Regards,

Kate

Quote:

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Originally Posted by 5Homebirths4Kate

Hi Carol,

I just wanted to mention that I took an hour to read myheartsisters personal journey with PPCM and she shares some incredible information on natural remedies that helped her to recover AND what she feels contributed to her initial development of PPCM. It is well worth the long read - truly. An incredible story and shows you the areas you can control which will reduce/eliminate your chances of getting PPCM.

Warm Regards,

Kate

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Kate, that is lovely..Thank you. I tried to condense the information as much as I could and there is still more to add, from the things that I have learnt over the last few months. It brings me joy that you got so much out of it. I hope the information I share will bless you and your family, and all who read it with wonderful health as it has blessed our family.

Hi myheartsisters,

I have read myheartsisters personal journey with PPCM and I cant help myself not to cry! Thank you so much for sharing!

Carol

Quote:

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Originally Posted by carolg

Hi myheartsisters,

I have read myheartsisters personal journey with PPCM and I cant help myself not to cry! Thank you so much for sharing!

Carol

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Carol, I hope my story will bring you comfort too. If you ever need to chat, look my name up on facebook and message me. There are a number of support groups on Facebook but for women who survived. I hoping to have the myheartsisters site have a place where, members who have lost loved ones can also find support. Its a cruel disease and it helps to share our stories and find support amongst those who have experienced it.
Jeanee