Cardio Rehab

[TBird]

Dr. Fett, what is your opinion regarding medically supervised cardio rehab for PPCM patients? Is this something that would be beneficial in terms of helping me reach a normal EF? My cardiologist has recommended this for me, but it would take some doing to work this into my schedule. Let me say that I trust my cardiologist completely. Just wanted a second opinion.

Just a little background on me.....I was diagnosed on May 22, 2007. I was 35 weeks pregnant with twins. I awoke that day feeling SOB and with a terrible cough. I could not lie down flat and it had been weeks since I was able to get a good night's sleep. Within 20 minutes of my arrival at the hospital, I could not breath. I could not catch my breath. I felt as if I was drowning and I knew I was going to die. I asked the OB on call if I was going to die. She told me no and that my babies would be fine as well. That's the last thing I remember before waking up 3 days later.

I was in full on cardiac arrest. Two code blues were called. I was intubated and in a coma for 3 days. I didn't see my babies until they were 3 days old, something I struggle with to this day. The doctors told my family (after I began showing signs of improvement) that they had not expected me to live. When I awoke, the first thing out of my doctors' mouths were "no more babies." I have come to be okay with that. These were our first and we initially wanted to try for one more. I know there are successful post ppcm baby stories, but that's not the road for my husband and me. My birth experience was frightening and I cannot risk leaving my two children without a mother.

Also, I do not blame my OB. Yes, he missed it. On my last appointment I complained about SOB and not being able to lie down flat. Plus, the month before I was diagnosed with PIH. Also, I had the risk factors for this --- African American, 34, twins, PIH. But, the only other case he had seen was when he was a resident and the woman was five months postpartum. He had never seen a case where it happened during pregnancy. And I could tell from his demeanor that I gave him quite a scare. Before this incident, I never got the feeling that he didn't listen to what I was saying. He never disregarded me. He delivered my twins in record time (less than 3 minutes) and I will continue to see him.

My cardiologist is the one who saved me when I coded. She is an excellent doctor and not just technically. Her bedside manner is impeccable. I feel so sorry for women who have had to go through this with insensitive doctors. It makes a difference in recovery, I think.

Dr. Fett, I truly believe that I am here today only by the Grace of God who ordered my steps to that hospital and worked through those doctors to save me. PPCM is a tough road. The diagnosis has changed my life completely. I'm so glad I found this site and so glad that you are here.

Sorry for the long post......

[JAMESFETT]

First and foremost, I am glad you are here--not just at this website--but a survivor, and so are your children. That is a miracle, and I pray for your complete healing.

Initially, supervised rehab is indicated and helpful, you will then receive the guidelines you need to continue on your own. Perhaps SusanD will chime in here somewhere, because she is very knowledgeable about exercise and reconditioning.

I respect your feeling about subsequent pregnancies. Even with full recovery it is not for those who know they don't want to experience that.

I'm glad you have the excellent cardiologist help you need and send you best wishes.

JD

[JAMESFETT]

In my visit to the Miami area in 2006, I have learned that in Florida in 2004-2005 there were 488 hospital discharges (see Table, next page) with the diagnosis of PPCM (ICD-9 Codes 67450-67454), 12 of which were African-American women from either Jackson Memorial Hospital or Broward General Medical Center.

African-Americans accounted for 188/428 (43.9 %) of Florida hospital discharges for PPCM in 2004-2005 (4). The most recent data I can find indicate that 12 % of live births in Florida (2001) were listed as born to mothers with the racial code of “black.” (5 -6) What are the reasons for a disproportionate number of African-American women in Florida with PPCM?

In addition, in Florida in 2004, there were 2207 hospital discharges of women between the ages of 15 - 45 with the diagnosis of “other primary cardiomyopathies” (ICD-9 Code 42540), 81 of which were listed as racial code “black” from Jackson Memorial Hospital and Broward General Medical Center. (4) In 2005, there were 2954 hospital discharges of women between the ages of 15 – 45 with this diagnosis, among them 140 listed as racial code “black” from those two hospitals. Almost half (47.4 %) of these discharges are listed under the racial code “black.” Could any of them have been pregnancy-associated? What is the cause of these primary cardiomyopathies in Florida women of reproductive age?

Table: State of Florida, hospital discharges for peripartum cardiomyopathy and other primary cardiomyopathies in women of reproductive age, 2004 and 2005*

Diagnosis Total Peripartum cardiomyopathy
(ICD-9 Codes 67450 - 67454) 2004-2005
Blacks (%) Hispanics (%) Whites (%)
188 (43.9) 72(17.3) 146 (34.1)

Other primary cardiomyopathies, women ages 15 - 45
(ICD-9 Code 42540) Total: 5161
2515 (48.7) 489(9.5) 1573 (30.5)



*Data for preparation of this table provided by Florida Agency for Health Care Administration, August 21, 2006.

[amyls]

T-bird,
I am sorry you have to be here, but the girls and Dr.Fett are wonderful at answerering questions you may have!( My Son was born at 35 weeks too, and I had preeclamsia, but I aslo had a stroke.)

I will tell you about my Cardiac Rehab...I did do it, at 2.5 yrs. My Ef was stuck at 35% and they decided to send me, It budged it to 40%!! I was very excited...but mostly my LV went down to almost normal. I am not sure if it was the rehab, or not, but is was worth it for me. I did it at 7 am at the hospital, My husbands work let him go in a little later 3 days a week.

I'm sure it will be worth it for you as long as your Doc's want you to do it. I am 7 yrs post diagnosis, and my EF is 45%! It's not totally recovered, but I'll take it over the 20% I was at diagnosis!

Good luck, Thre are a few others who have done Cardiac rehab, you may want to post on the general board as well!

God Bless,
amy

[Stephanie'sbigheart]

Welcome! As you can see Dr. Fett and the ladies on this board are so helpful. :)

[TBird]

Thanks Dr. Fett. Those statistics were an eye opener for me. I'm going to share them with my doctor. Also, there is a large Hatian population here in Miami. Not sure if that could influence some of those stats.

Amyls - Thanks for your response. I'm going to give it a try. My EF right now is ~35% and it has come a long way. When I was diagnosed, my cardio said that my EF was "next to nothing.'' The technician called it at 20%. But, my cardio completely disagreed and said it was less than that. Hopefully, I will see some improvement soon.

Stephaniesbigheart - Thanks for the welcome. Yes, everyone on this site has been very helpful.

[JAMESFETT]

In the Miami area and in the State of Florida there is a disproportionate number of Haitian-American for the number of deliveries (7000/year) with PPCM compared to Hispanics and Caucasians. The same is true for African-American women in Florida compared to Hispanics and Caucasians. The same is true for Haitian-American and African-American women in Florida who develop IDCM compared to Hispanic women and Caucasian women. I spent a week in the Miami area in 2006 looking at that and trying to find clues.

JD