Newly Diagnosed with HCM and Pregnant

[KaterinaB]

My name is Kate. I am a 22-year-old dancer & actress, newlywed with a three year old son. I was also diagnosed recently with HCM, and found out the same day I was six weeks pregnant with my second child. I am posting as much information as I know about my circumstances in the hopes of gaining advice and information from people in terms that I can understand. My doctors have either playcated my fears or have been so overbearingly technical it flies over my head. I am looking for a nice in between. I have researched online and have found alot of information that is contradicting the other, its pointless. A friend of mine used the MedHelp forums awhile back and was able to get sound advice. So I figured it was worth a shot.

Here it goes:

My diagnosis was made in the most unusual of circumstances.

I was eighteen when my son was concieved, and barely 19 when he was born. It was an average and uneventful pregnancy. And my little Axl was healthy as rain. Post pregnancy I had a breast infection and the swelling and engorgment wreaked havoc on my breasts. Taking me from a 32d pre-pregnancy, a 36ddd during, to a 34dd after. I am 5'10, 125lbs, and small framed. As a result I have suffered from tremendous back pain since. After years of suffering, it was begining to affect my ability to dance. So not being able to take it anymore, I decided to visit a plastic surgeon to see about getting a breast reduction to something around what I had before.

I went to a nearby hospital where a friend of mine recommended I see her plastic surgeon. Before undergoing a consultation, the doctor insists that all potential clients undergo a physical exam to rule out any potential issues that may cause complications with the surgery. During my physcial my doctor got this curious face and proceeded to tell me he felt what he called an 'apical impulse'. He said he was going to take a quick listen to my heart and after a few minutes and many 'sounds good' he paused and then asked me to stand up. He once again listened to my chest only this time I got a different reaction.

His expression is only what I could describe as 'bug eyed' and then asked me nicely to sit down before leaving the room briefly. He came back a few minutes later with another doctor, who did pretty much what the last doctor did before tellng me that he was a cardiologist and told me that he wanted to schedule some more tests before we went further on with the idea of plastic surgery. When I asked what was wrong he said he didn't want to say until he was certain, but when I demanded an explanation he said based on the signs of the physical exam I had signs of Hypertropic Cardiomyopathy.

We scheduled the tests and he told me not to worry until we have something to worry about. I went home and googled HCM. I tried to keep my emotions in check, especially when talking with my husband. Two days later I returned to the hospital for a battery of tests including an EKG, MRI, ECHO and blood tests. The tests came back with a positive diagnosis of HCM along with Atrial Fibrillation (which is a common complications.

Then came the bombshell that I was also pregnant. Right now the doctor is scheduled me an appointment with an OBGYN that specializes in my kind of situation. I have my appointment a week . In the meantime I have been pulling every resource I can and they all say different things that its making my head spin. Until I see the OBGYN they want to refrain from coming up with a treatment option. Two things keep popping into my head: increased risk of sudden death and increase in maternal mortality rate.

Right now I am just looking for advice, information, even someway to vent. Anything anyone could give to me at this point is most welcome. I will update when I know more.

[grendslori]

Katrina, My daughter suffered from HCM, a very serious form of it. One thing I do want to tell you is that this form of heart disease, more times than not is genetic in nature. You son needs to see a pediatric cardiologist and be evaluated. Your parents as well as any siblings also should be evaluated. Sometimes it can be sporadic in nature (as it was with my daughter), but generally isn't. Sudden death is extremely rare, about 2% of the population. The A-Fib does need to be under control as it is a very fast heart rate where a thickened left ventricle will have a hard time trying to relax and fill the way it should. I wrote quite a bit about HCM on one of the other posts; you may want to read about it. One good piece of info for you is that this was not discovered before you were grown; children who are diagnosed who have not gone through puberty can have real problems with this type of heart disease.

[AlphaMouth]

Katerina,

Thanks for the courage in sharing your story.  I have a daughter with a congenital defect.  After reading I went and did a little research.  In short getting your diagnoses early can be of great aid for you.  And from what I read there are some positive treatments that can really work.  There are a couple places I wanted to share.

Wikipedia
http://en.wikipedia.org/wiki/Hypertrophic_cardiomyopathy
Some good info here (but can get technical)

HMCA
http://www.4hcm.org/
A site chalk full of GREAT support info and people

I wish you well.  Remember your attitude determines your altitude.  Smile!

~Aaron

[ChatterAlly]

Kate,copy and paste this link.  How much information have you been able to find?

http://my.clevelandclinic.org/heart/disorders/hcm/default.aspx

Maybe this can give you some insight.

[ChatterAlly]

I wish I had some answers for you that would help you ease your mind.  Just know there will some posters that may have some for you. In the meantime, you can "vent" on me anytime. Try to stay calm and focused.  Ally