Striving for Recovery in PPCM

[JAMESFETT]

Algorithm: The Key to Recovery from PPCM (Start at the bottom and work up):



5.Points 1 and 2 lead to recovery in a large percentage of patients. The critical time period for this healing is between 2 weeks and 4 months
after diagnosis. Delayed healing may require further investigations to apply points 3 and 4.

4.Hypothesis: Harmful autoantibodies or immune complexes may also prevent healing. Treatment by immunomodulation medications or immunoadsorption or plasmapheresis may be helpful.

3. Hypothesis: Clearance of virus from heart permits healing. Virus-clearing depends upon return of normal immune system functions after end of pregnancy. Failure to clear virus may prevent healing and make function worse. Anti-viral treatment may be helpful.

2. Effective treatment corrects abnormal pathology. Effective treatment includes ACE-inhibitors [ACE-I] (Angiotensin receptor blockers [ARB] may be substituted for ACE-I), Beta-blockers [B-B], and diuretics.

1.Early diagnosis protects and preserves functioning cardiomyocytes (heart muscle cells). Earlier diagnosis permits earlier treatment, permitting preservation of more cardiomyocytes and better long-term recovery of systolic heart function.


--James D. Fett, MD
26 December 2006

[JAMESFETT]

Recovery is the goal, but for those who don't reach full recovery, these same steps will offer the best healing possible, and treated cardiomyopathy offers many years of normal or near-normal function and life-expectancy.

James

[JAMESFETT]

Let us hope and pray new developments will bring better treatments and advances in PPCM in 2007. What I have suggested in my algorithm is that consideration be given to potential non-conventional treatments when conventional treatment is not bringing desired results. Only large centers will be able to go the additional steps or enter into research protocols that will provide further investigation into newer treatments. We must press on for more answers.

James

[Mindyt]

Thank-you for your continued hard work. May you have a wonderful 2007!

[jasper]

Dr. Fett
At what time frame is it appropriate to start looking at possible alternate treaments? I am 19 months or so out from diagnosis of PPCM/IDCM. I have improved from 20% to 43% or so. I go to UW again in February for my yearly and an echo.
I am thankful for my progress, yet I want to be proactive in advocating for my treatment. Is there something specific I should be asking about at this point in recovery?
Happy New Year, thank you for all you do for our cause!
Jennifer

[JAMESFETT]

Of course I am eager to see improvement in either newly diagnoses IDCM or PPCM within 2 or 3 weeks. When I do not see that, I will titrate up ACE-I and B-B (carvedilol or metoprolol long-acting) medications. At the same time I will monitor plasma hs-CRP and high levels (i.e. over 10 mg/Liter) make me more concerned about an active inflammatory process in the heart. If there is stability or slow improvement I will watch along; but if the EF remains under 40 percent at 6 months I will encourage endomyocardial biopsy, which requires right heart catheterization. If, during those first 6 months there is actually a backwards slide, I would move up the urgency of the biopsy, and give consideration to immunoadsorption (type of plasmapheresis in which something toxic is removed from the blood). Is it too late to consider the biopsy after 6 months? I personally don't think so since I am aware of reports in the medical literature seeing biopsy and non-conventional treatment lead to improvement even at 24 months post-diagnosis. But this is a controversial area, and many physicians are more conservative than I am on this, which others are more aggressive.

James

[jasper]

Thanks Dr. Fett. My doctor has told me she doesn't believe a biopsy would show anything since the blood tests do not indicate any infections or inflamation. I don't have the specfic reports, but I can ask. Her plan was to get me to the target dose on my ARB ( Diovan) and Coreg and then check for progress. I have been at the target doses for a little over a year now. My last echo was in April. I am hopeful this one will show progress in my EF and heart size.

I will share information from you and inquire! Thanks again.
Jennifer

[JAMESFETT]

Thank you, Jennifer. I hope your next echo shows improvement, as it well may. No doubt you follow the other threads; right now it is particularly striking about the thread from "Pat" indicating a recent viral infection (E-B virus, one of those capable of causing DCM) just preceeding her diagnosis of PPCM. Many cardiology groups in Germany would have already biopsied her. In this respect, it appears that gadolinium enhancement on CT or MRI scanning may help to identify areas that are involved with an inflammatory process in the heart, and when one biopsies a "hot" area, the likelihood of finding virus is much greater as compared to biopsies in "cold" areas (9/10 + vs 1/10 +).

James

[jasper]

I have been following the other threads and also taking notes. I will bring all of this to my doctor in February. I don't have a clear illness I can attribute anything to. However, I do teach elementary school and get exposed to everything! Thanks again.
Where is the best place to locate and read the articles you mention? Is there a central site you would suggest?
Thanks, Jennifer

[JAMESFETT]

You can Google Entrez Pub Med, go to NIH National Library of Medicine search engine, type in "PPCM" and you will be able to retrieve abstracts of many articles. There has recently been a changing scene on viruses that can cause cardiomyopathy/myocarditis. One of the viruses coming on strong is Parvovirus B19. Anyone in contact with children, especially under age 8, has increased chance of being exposed to Parvovirus B19. If that first exposure happens during pregnancy there is an increased chance of having complications, including myocarditis/cardiomyopathy.

James

[MissaBaby]

Dr fett.
Is Chicken Pox one of these virus types that can cause heart issues?

[JAMESFETT]

Chicken pox in an adult can be a very serious illness, but it is not recognized as a cause of dilated cardiomyopathy.

James

[carlson]

Hello-

I had a daughter by c-section in March of 2004. As soon as they pulled her out my heart rate went up to 250 and started skipping and then stopped. I had a heart catherization, but they have found nothing. Only "possible" PPCM or Long Q T. Because my heart stopped the doctors suggested that I get a pacemaker/defibrilator. I have now had the pacemaker/defibrilator for almost three years with no reocurrences. :p Right after the birth of my daughter, I had 10% heart function. Within 24 hours my heart was back to normal and my current EF is 55%. I am now at a place where I am considering having another child. The doctors think I am safer than ever because of the pacemaker/defibrilator and say that I would be closely monitored. I was wondering what your thoughts are about my story and if you have ever heard of anyone else with a similar one. Thanks for the support!

[JAMESFETT]

Your story is certainly compatible with PPCM. I have observed women with similar histories and arrhythmias. In addition, there is a right ventricular cardiomyopathy, manifest initially and primarily by heart rhythm problems, in which the primary involvement of an inflammatory process is in the right vetricle and septum where the central circuit controlling heart rhythms is located. This appears to be your situation. You obviously also had left ventricle involvement with very low EF, even if briefly, and to have subsequently recovered completely is also very much like PPCM. I agree with your doctors that you are in a favorable situation for a subsequent pregnancy should you choose that. You can be carefully monitored for any signs of recurrence, and you have extra rhythm protection with the ICD/pacer. Best wishes in your decisions,

James