Prognosis and Recovery
Older studies suggested that approximately 50% of women with PPCM recovered normal heart function, with 25% having persistently reduced heart function but remaining stable on medications, and 25% progressing to severe heart failure. Survival rates are now as high as 90% to 95% with contemporary medical and device therapy. Although early improvement in ejection fraction (ie. within the first 3 to 6 months) predicts a good outcome, there are also some women will have slow, gradual improvement in EF over many years. In the latest IPAC, 1st USA prospective study (from diagnosis onward) of PPCM mothers has shown over 70 % with full recovery by 12 months postpartum (defined as reaching left ventricular ejection fraction of at least 50 %), of the remaining 30%; 1/3 go on to full recovery, just takes longer; and most of the remainder have good function with continuing treatment despite reduced LVEF in the range of 30 to 49 %; and only 2 out of 100 resulted in heart transplants.
PPCM is a serious disease and often women are given very vague information about how to PPCM Recovery. There are no clinical studies on recovery but the following information is here to help you and is based on experiences of other heart sisters. There are many paths to healing and avoiding stress, resting, being cared for by others, good nutrition, sunshine, fresh air, walking to your capacity, sleep and a positive attitude or faith are foundational to recovery.
Nutrition
By the time a diagnosis is made, a woman has already lost much protein through her urine and may have electrolyte imbalances. Nutrition is essential to recovery. We recommend buying a juicer and juicing vegetables such as kale, silverbeet, spinach, carrots, beetroot, celery, apples, oranges, berries, lemons, watermelon, etc..in various combinations with a focus on vegetable juices that can provide living enzymes, vitamins and minerals. Juices are easily absorbed by the body into the blood stream, freeing up energy for the body to heal. Avoiding all processed foods, including inflammatory foods like dairy, soy, wheat, nuts, corn, meat and fish and moving to a plant based diet, provides the best support for healing. Drinking good quality water is also important because 80% of the body is water and water is essential for many bodily functions.
Alcohol
It is best to avoid alcohol. For a comprehensive 6,000 word research piece on the harms associated with cardiovascular disease and substance abuse. It includes accessible design, 39 supporting citations of landmark research and authority sources (seen at the bottom) and answers for the most common questions regarding heart disease, alcohol and every major drug of abuse http://americanaddictioncenters.org/substance-abuse-cardiovascular-disease/
Medication
The combination of a beta blocker and Ace Inhibitor appear to have a synergistic effect for the recovery from PPCM. and although most women who do recover heart function do so within the first year after diagnosis, the "window of opportunity for improvement" can be up to several years after diagnosis. Why the combination of Beta blocker and Ace Inhibitor works, remains a mystery but there is evidence that fetal cells circulating in the mother's body heal her heart. See Article on Fetal Cells healing mother
One explanation for the use of medication, is that medication gives the heart a rest and opportunity to heal, by slowing the heart rate and lowering blood pressure. Ace Inhibitors work by relaxing blood vessels, and Beta blockers slow down the heart by blocking the beta waves in the brain. Diuretics helps your kidneys to remove fluid from your body but it also removes potassium from the body and because potassium is essential for heart function, potassium levels should be monitored while a patient is on medication.
Common Side effects of medication:
Fatigue, dizziness and low blood pressure.
Weight gain or difficulty losing weight: heart medication slow the metabolism. It is important to keep weight in check. A weight gain of more a kilogram a day over 2 successive days suggests fluid retention and medical advice should be sought.
Cough: Ace Inhibitor may have the side affect of a dry, irritating cough and if this happens, you should discuss with your cardio.
Losing hair: Hair is naturally shed after a pregnancy and some hair thinning is normal.
Low Blood Pressure / tiredness: medication lowers blood pressure and tolerable doses are given or doses split to minimize the side effects. If blood pressure drops too low, drinking water/ eating salty foods will help raise it.
Potassium removal or retention. Blood tests should check on potassium levels in the body while taking medication.
More Side Effects of Beta Blockers
More Side Effects of Ace Inhibitors
While, not generally advised, there are heart sisters that recovered without the use of medication. This was usually because their blood pressure dropped too low with medication.
Supplements
A number of supplements can be taken to assist in recovery.
In "Myovive" in the report from Amer Heart J 2002, the following supplements are useful
CoQ10 (This is depleted from the body when taking beta blocker, so supplementation helps to counter balance this loss)
Zinc (Ace Inhibitors reduce the amount of zinc in the blood)
Selenium
Chromium
Other Supplements recommended by cardiologists include
High dose magnesium (helps with palpitations, lowering blood pressure) . Read why magnesium supplementation is necessary
Iron Supplements if to rebuild iron levels from blood loss or low iron. Ace Inhibitors may also deplete iron in the body by suppressing the development of red blood cells and if iron supplements are used, they should be taken 2 hours apart from Ace Inhibitors. http://ndt.oxfordjournals.org/content/14/8/1836.ful
L-carnitineD-ribose
Blood tests can help in determining what deficiencies need to be balanced with supplements. Mineral deficiencies should be addressed to assist in recovery.
Breastfeeding
There is controversy surrounding the benefits and risks of breastfeeding. One study showed that breastfeeding mothers fared better with recovery http://www.sciencedirect.com/science/article/pii/S0167527310006558 (Safirstein, et al, Int J Cardiol) while others have put forward the theory that prolactin metabolites, called vasoinhibins, can be harmful to the heart and put forward the use of prolactin inhibitors for the treatment of PPCM. http://eurjhf.oxfordjournals.org/content/11/2/220.full
According to Dr. James. Fett, "Because the prolactin inhibitors can have dangerous reactions, even fatal, it is safer to wait for further information as research is ongoing. For those who are going to recover anyway with diuretics + ACEI +BB, it is safer to go that route and avoid prolactin inhibition with either bromocriptine or cabergoline. For those who are in the higher risk group, which we are in the process of identifying characteristics, it is worth taking a chance against severe reactions to the prolactin inhibitors. That is the current status."
The decision to breastfeed while recovering from PPCM is a very personal decision. There are no definitive answers and decisions about breastfeeding need to be made on a case by case basis. For some women breastfeeding may hinder recovery because of prolactin metabolites, whilst for others breastfeeding may assist in recovery.
Hospitalization
Most women diagnosed with PPCM spend time in hospital to stabilize their condition and work out the correct dosage of medication that their body can tolerate. The dosage prescribed varies from patient to patient but the general rule is to reduce heart rate to around 60 and blood pressure to as low as the woman can tolerate. Coming home can be a daunting experience after going through heart failure and women will continue to see their cardiologist for follow up appointments and ECHOs but on a day to day basis, needs to continue to manage her own health.
Women are generally given time to recovery before further intervention like ICD or LVAD are implanted. In severe cases, women will require a heart transplant and this is a very personal decision as the best heart a woman can have for long term survival is her own. Heart transplants have a life span. The 5 year survival rate for female heart transplant recipients is 69% and the average lifespan is 15 years. There has been some research done that survival rates and lifespan for PPCM mothers who receive a heart transplant to be lower than the general heart transplant statistics. We have seen heart sisters recover full heart function, and come off medication to live normal, healthy lives with EFs at diagnosis of 6%. A life vest, which is a wearable defibrillator may be used if the EF is below 35, and there is a risk of sudden cardiac death. A life vest will shock the patient if there is an irregular rhythm and provides a safety net for the patient, while the medical assessment of risk is made and recovery planned.
The risk of sudden cardiac death is greatest during the early stages of PPCM, where a woman's heart can deteriorate very rapidly.
Suggestions for managing PPCM recovery after hospital discharge
- Record Blood Pressure Buy a blood pressure meter and record BP readings each day. In the beginning, for security one might record 4-5 readings a day. If your pulse or blood pressure is unusually high for several continuous readings, report to the hospital for advice. Blood pressure may rise at certain times, eg after eating and exercise, and if one has sustained an injury such as a burn or infection. High blood pressure does not necessarily mean that one is going back into heart failure. However, high blood pressure and a high pulse (over 100) should be reviewed at a hospital. Understanding Blood Pressure Readings
- Record Weight each day Buy an accurate set of scales and weigh yourself once a day in the morning prior to eating. If you record a weight gain of a few kilograms over 3 successive days report back to the hospital for advice. Unusual weight gain is a sign of fluid retention.
- Medication Reminder Add a reminder to your phone, so you will remember to take your medication at the same time each day. Mediminder is a free android app that may be helpful.
- Low Salt Diet In order to reduce salt in diet to less than 1500mg a day. A low salt diet can be achieved by preparing meals from fresh ingredients. Many processed foods from the supermarket and restaurants contain high levels of salt. Even the unsuspecting loaf of bakery bread may have very high levels of salt in it. Salt leds to a retention of fluid in the body and can dramatically increase blood pressure. Lowering salt intake naturally lowers blood pressure, which is condusive to recovery. Using herbs, spices, lime, and lemons to flavour foods keeps salt intake to a minimum.
- Fluid Intake Keeping fluid intake to 1500ml per day in the early weeks of recovery will mean less strain on the heart, especially if a diuretic is being used to remove water from the body. Less strain on the heart = faster recovery. Though after excess liquid is removed, some cardiologists recommend drinking 2000ml per day to ensure the body does not hold on to fluid and raise BP.
- Walking Walk every day at a pace that you can still talk and for a distance that you are comfortable with.
- Nutrition Eat plenty of good food to rebuild your heart. If your blood tests showed any mineral deficiency, use food that is rich in those minerals or dietary supplements to restore balance. Common supplements taken by some PPCM women include: CoQ10, magnesium, zinc, omega 3 and 6 supplements, iron, selenium, chromium. Vitamin C, Armaforce, cranberry supplements, spirulina and olive leaf extract are other supplements that may assist in rebuilding the immune system. Cell salts may also be useful.
- Support Seek out support from family, friends and other heart sisters. Stay away from stressful relationships and stressful situations.
- Reflection Ensure you have quiet time each day to reflect or pray. Listen to your body. Give your heart, an opportunity to recover through rest.
- Sleep Try and get a good night sleep
- Diary Keeping a diary may help to record any symptoms you may experience, such as palpitations, swelling, cough, or chest pain. Women often find that symptoms worsen around the time of their period.
Going to Emergency or ER
Most heart sisters have had times when they are not sure if their heart is behaving normally and going back to the hospital is perfectly normal. It is best to be safe than sorry. Learning to trust your body again takes time.
Future Pregnancies
Most women who develop PPCM are told that they are not able to have any more babies. While there is always a risk in any pregnancy of developing PPCM, a number of women who recovered from PPCM have gone on to have successful pregnancies without relapse.
Studies done on PPCM survivors have suggested that the risk of relapse in future pregnancies is minimized if the woman meets certain criteria prior to becoming pregnant.
The criteria include:
- LVEF ≥ 55 %. (There has yet to see a post ppcm pregnancy that started at an EF above 55% end in mortality. Source: Dr. Elkayam)
- Maintain LVEF after discontinuation of heart failure Rx (may be required to continue beta-blockade).
- Adequate contractile reserve as estimated from exercise stress echo and peak CO/O2 consumption on exercise ergonomics.
- Normal LV size and shape
- No evidence of diastolic dysfunction
There has only been one study done on post ppcm pregnancies. It was a small sample size, with only 29 mothers meeting the recovered criteria for a post ppcm pregnancy.
Rate of heart failure relapse among 35 post-PPCM pregnancies from the 29 recovered mothers is as follows:
3/11 or 27.3% if recovered LVEF of 55% or greater
3/15 or 20% if recovered LVEF of 55% or greater and maintained a LVEF of 55% or greater sfter the phase out of heart failure medication
0/9 or 0% if if recovered LVEF of 55% or greater and maintained a LVEF of 55% or greater sfter the phase out of heart failure medication and adequate contractile reserve demonstrated
on exercise stress echocardiography (increase of LVEF at target exercise heart rate over
resting heart rate by relative amount of at least 15%).
A stress ECHO determines if a woman has adequate contractile reserve to cope with the increased blood flow that comes with pregnancy. http://emedicine.medscape.com/article/153153-overview#aw2aab6c18 contains more information about PPCM and future pregnancies. There was a recent study (2009), that found no relapses in 9 women with post-PPCM pregnancies when there was adequate contractile reserve in their stress ECHO. All these women had an EF > 55%. Again the sample size was limited but the important part of this study was that it distinguished between women with a recovered heart function and those without.
For a story about Pregnancy After PPCM, see http://www.iamnotthebabysitter.com/every-pregnant-woman-know-ppcm-save-life/
The link to the study is Risk of heart failure relapse in subsequent pregnancy among PPCM mothers
There is a possibility that a precipitating factor for PPCM could be transferred in surrogacy warranting further investigation, Peripartum cardiomyopathy (PPCM) in both surrogate and biological mother
Monitoring a PPCM Pregnancy
A Blood test: B-Type Natriuretic Peptide (BNP) blood test is a very useful blood test that can used to monitor a PPCM pregnancy. It is a hormone that is excreted by the left ventricle under stress and elevated BNP, occurs hours to days before the clinical symptoms of heart failure. Echocardiograms are also used at the end of each trimester to monitor heart function and it is important that an Echo and any relevant blood tests done with any signs of heart failure, during pregnancy and post partum.
Most relapses in a post-PPCM pregnancy occur between 36 to 40 weeks, at delivery, and in the 2 weeks post-partum. The beginning of recovery in case of a relapse is to safely complete the pregnancy. There are many pathological changes in early relapse that will be silent so far as signs and symptoms of heart failure until enough cardiomyocytes have been damaged. That is why the plasma BNP can be helpful, showing a rise hours to days before any signs and symptoms of heart failure. If there is an inflammatory component, which there often is, the plasma high sensitivity C-Reactive Protein also rises beyond 10 mg/liter. Compare it to flood waters flowing into a reservoir behind a dam: a certain amount has to collect before any water overflows the dam, and floods the areas below the dam." (Source Dr. James Fett) BNP tests during pregnancy provide information about any possible inflammatory process that may be a sign of relapse. Since the best outcomes for recovery occur when PPCM is diagnosed early, a PPCM pregnancy needs to be carefully monitored, so decisions about early delivery and treatment can be made. It is essential that any woman contemplating a PPCM pregnancy be monitored by a cardiologist who is familiar with the latest research on managing PPCM pregnancies and she understand the signs and symptoms of heart failure, in order to get help, if she needs to.
"Safely completing the pregnancy also means removing another source of potential hormones that can be metabolized to do harm--referring to prolactin metabolites from the placenta--may help to prevent or minimize relapse."
See http://www.healingforamothersheart.com/page_5.html
Medication during a Post PPCM Pregnancy
Ideally it is best to not be on medication while pregnant. Ace Inhibitors are known to raise the risk of major birth defects, especially when taken during the first trimester. The are a category D drug, meaning there is positive evidence of human fetal risk (unsafe), however in some cases such as a life-threatening illness the potential risk may be justified if there are no other alternatives. Betablockers are a category C drug, meaning that studies in women and animals are not available or studies in animals have revealed adverse effects on the fetus and there are no controlled studies in women. Drugs should be given only if the potential benefits justify the potential risk to the fetus. Betablocker has been associated with Intrauterine growth restriction (IUGR), poor growth of a baby while in the mother's womb during pregnancy and if beta blockers are used in a pregnancy, the baby also needs regular ultrasounds to check on growth.
Other Pregnancy Sites of Interest
Dr. Linda Burke-Galloway's grandmother died of PPCM, she is the granddaughter (3 generations removed) of two 19th century midwives and is a board-certified ob-gyn, who offers advice on high risk pregnancies. She has a number of websites and blogs about pregnancy and her particular field of interest is high risk pregnancy.