Re: peripartum cardiomyopathy

Posted By CCF CARDIO  MD - MTR on February 25, 1999 at 23:27:19:

In Reply to: peripartum cardiomyopathy posted by Gail Meglitsch on February 24, 1999 at 18:15:07:







My daughter was diagnosed with peripartum cardiomyopathy after the birth of her first child on January 8, 1999. The cardiologist who is treating her is supposed to be very good but I believe that my daughter is the first case of peripartum cardiomyopathy treated at the Santa Rosa CA Kaiser HMO.
I am concerned because the cardiologist treating my daughter has not been open with her. He told her that the odds were overwhelming that her heart would heal itself in six months. This did not match what little I know about peripartum cardiomyopathy so I pressed him for a worst case/best case scenario. He admitted that some women do end up having heart transplants but this is very unlikely. he also denied that the severe toxemia my daughter suffered from had any relationship to the peripartum cardiomyopathy. I concluded that he did not want to stress my daughter with the seriousness of the disease since in fact 50 to 60% of the women who suffer from this do recover in 6 months. Perhaps it is best that she remain unaware that the prognosis for the other 40 to 50% is grim.
I worry that my daughter thinks her condition is trivial. With a new baby she is not getting much rest. She is also the primary caregiver for a 90 year old senile woman so is not free to walk as her doctor prescribed.
I have now returned home and read what I can about peripartum cardiomyopathy and nothing I have read reassures me. I do not want to worry my daughter unnecessarily but I also do not want to sit silently and watch her do things that might jeapodize her chances of recovery because she is not aware of the severity of her disease.
I am very eager to know if there are specific risk factors associated with failure to recover spontaneously in 6 months and if the absence of these risk factors do actually mean that her prognosis is as positive as her doctor indicates.
My daughter is 34. She does not drink or smoke or use caffeine. She is neither obese nor malnourished. Her eats only organic food, low in fat with very little meat. Her blood pressure is and always has been low normal. She excercised regularly during pregnancy. She has always enjoyed excellent health.
I believe she received excellent prenatal care at Kaiser.In her 29th week she was diagnosed with mild gestational diabetes and transfered to a high risk pregnacy group. The condition was controled by diet. 2 days after her due date she showed early signs of toxemia so labor was induced. She had a long and difficult labor. After 20 hours she had severe toxemia and her kidneys failed. Shortly thereafter a healthy 9 pound girl was delivered vaginally. The need for speed resulted in third degree tears for my daughter and a broken collar bone for her daughter.
The next day my daughter was transferred to critical care because of extreme arrhythmia. They tried unsuccessfully to do an echocardiogram but my daughter never had more than 2 consecutive normal heartbeats. She was put on Atenenol and sent home with a Holter monitor and a tenative diagnosis of peripartum cardiomyopathy. Ten days later another echocardiogram was done and the diagnosis was confirmed. An ACE inhibitor was prescribed in addition to the beta blocker.
Given this history, is it true that my daughter has as positive a prognosis as her cardiologist suggests?
Peripartum cardiomyopathy is a rare condition. Are there any doctors specializing in this area or doing research in this area? If so, would it be valuable for my daughter to get second opinion or to particpate in a research study?
Thank you for any information you can offer.
Gail Meglitsch






Dear Gail, thank you for your question.  Peripartum cardiomyopathy (PPCM) is an uncommon condition and the exact cause is not known.  The general consensus is that this is an autoimmune phenomenon related to the pregnancy and the presence of foreign tissue (the fetus) in the mother. There are no specific treatments for PPCM other than supportive care with medications like beta blockers, ACE inhibitors, and diuretics.  Risk factors for PPCM are hard to determine because the only data available in the medical literature is from case series where a sampling error may skew the findings reported.  I can't comment on the relation of toxemia to PPCM in your daughter's case because I don't know enough of her medical history.  Generally, one-third of patients with PPCM improve back to normal, one-third neither improve nor get worse, and one-third worsen.  The time course for this is usually 6 months postpartum.  I don't know of any doctors in your area who specialize in PPCM and quite frankly, I doubt there are many cardiologists who can be called specialists in this disorder since it is a rare condition.  Your best option for a second opinion would be at a large tertiary referral center like UCLA, Stanford, or UCSF.  However, I doubt her HMO would pay for such an evaluation.  Presently, your daughter's medical care sounds appropriate.  
I hope you find this information useful.  Information provided in the heart forum is for general purposes only.  Only your physician can provide specific diagnoses and therapies. Please feel free to write back with additional questions.  Good luck!
If you would like to make an appointment at the Cleveland Clinic Heart Center, please call 1-800-CCF-CARE or inquire online by using the Heart Center website at www.ccf.org/heartcenter.   The Heart
Center website contains a directory of the cardiology staff that can be used to select the physician best suited to address your cardiac problem.