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Very scared new mother with cardiomyopathy and Crohn's disease

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Posted 2/6/2009 3:38 AM (GMT 0)
Hi,

I used to have very mild cardiomyopathy (diagnosed in 07), but was just told after birth of my new baby in Dec (my 2nd baby), my CM got worse. EF 40% in Dec. & again in Jan. from 52% in Nov.

I have of a little bit of shortness breath and dizziness at times and occasional chest pain (which I'm not sure if this is all due to anxiety or nutritional deficiencies or heart.)

So far, I don't know if the CM is related to the pregnancies or Crohn's Disease or what.

I'm taking bisoprolol and enalapril, meds for my crohns, vitamins and probiotics.

Any advice or encouragement? 

PS. Please pray for my healing.

Posted 3/12/2009 8:56 PM (GMT 0)
I will pray for you definitely. Ask your doctor about taking high dosages of Co-enzyme q10 (at least 300 mg per day). I've read that's excellent for cardiomyopathy. Read this book for more information (chapter 7 Cardiomyopathy: New Hope For a Cure) What Your Doctor Doesn't Know about Nutritional Medicine May Be Killing You by Dr. Ray Strand. Hope this helps and the best of luck.
Posted 3/16/2009 4:58 PM (GMT 0)
I will definitely mention this to the doc. and check out the book.

Thank you!

Posted 3/17/2009 5:42 PM (GMT 0)
Dear Roni,

I'm so sorry to hear about your CM progression. I hope your doctor told you that CM is actually fairly common and the symptoms can be controlled in most people. (I am not a doctor btw.) There are many forms and causes of CM. Pregnancy can definitely aggravate the condition because of the increased strain on your heart.

I was born with a congenital variety of CM that is very serious. I managed to live a very productive and comfortable life thanks to medications that lessened my symptoms and helped my heart perform better. However at the age of 48 it became apparent that I needed a heart transplant. Now, don't panic! I highly doubt that you will go this route! I received my new heart 5 years ago and am now able to do just about anything I want to!

I just want to emphasize that it can seem scary at times but there is help. Having CM is not a death sentence, nor will it cripple you. The day I got "The Call" that they had a donor heart for me, I had gone to work and walked my dog. I have been cared for by some of the best medical professionals around and they did everything possible to prolong my life and improve my quality of life. I trust that the same thing will occur for you.

If you ever feel that your doctors aren't addressing your concerns or offering you hopeful solutions, I suggest you find a new doctor. It's very important to feel that your doctors care.

Do all you can to reduce the anxiety and stress. Focus on your new baby and feel the joy!
Posted 3/19/2009 10:46 PM (GMT 0)
My cardiologists think I should be good to go for many years and possibly for the rest of my life. Of course, they can't say for sure, but to be honest at present I feel more optimistic than I did a month ago when I originally posted.

I have more tests at the end of the March and April, so I'll have a better idea if I can get of the ace inhibitors soon.
I feel a little woozy on them.

Thanks for the encouragement!
Posted 3/19/2009 11:31 PM (GMT 0)
You're welcome. That's great news! Is the dizziness from low blood pressure?
Posted 3/21/2009 3:39 PM (GMT 0)
My blood pressure is good, about 105/65.

I talked with my cardiologist yesterday and he said it was likely the bisoprolol causing the vertigo and brain fogs so I'm going to try metoprolol again.

I also have crohns and a new baby so it could be a multiple factors. Baby and I are sleeping through most nights, so it's not the night feedings now.

I don't like switching meds alot in case one doesn't do the same job, you know? Have you tried metoprolol or bisoprolol and had fatigue or anything?
Posted 3/21/2009 7:54 PM (GMT 0)
Hi Roni,

No, I never tried those drugs. I will tell you though that your body may eventually acclimate to the drugs. It's not unusual for side effects to diminish after a few months. Have you read the fine print on your meds at the pharmaceutical companies website? Some of these heart meds can cause terrible constipation, so with your Crohns disease, be especially careful if that ever develops. I now have IBS as a result of a certain drug - I think it was cardiazem.
Hey, that's awesome that the baby is sleeping! What a blessing!
Peg
Posted 6/29/2009 9:05 AM (GMT 0)
Hi, I am new here and just am reading back posts. I will put you on my prayer list of over 500 women, Daughters of the King, Episcopal Intercessory group.

I am 64 and have just been diagnosed with cm, and yes, I had no symptoms, other than almost fainting three times. My doctor says this had nothing to do with my cm. My faith is very strong, I write two spiritual columns, one for a local newspaper and one online magazine.

about lost it a week ago and asked for prayers, called my best friend for over 39 years and that night wrote my column. I was a changed person! All, I believe due to prayer. My friend said, after I sent her my column, "I cannot believe the person I spoke to today wrote this tonight."

I am not a Bible Thumper by any means.....just believe in the Holy Spirit, reaching out to others in need and when I am in need.

Also, am a breast cancer survivor now for 3 years. Just keep on taking care of yourself and your sweet baby and doing as you are doing, reaching out.

God bless you sweet young woman,
Altalee in Ft. Wayne, IN
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