Saturday, January 21, 2012

Broken Heart Syndrome and Pregnancy

I feel bad that it took 6 days to get Grace's 1 year post done. I started it the day after her birthday but didn't really have time to complete it due to family being in town. Monday, Grace and I slept until 11:30 AM because we were both so exhausted from her birthday weekend. We spent the rest of the day recovering and I planned on getting back to my normal blogging schedule on Tuesday. Well, as you can probably tell, that didn't happen.

I debated about sharing this. But I think writing it out will help me process it, so here goes:

Several months ago, I decided that it would be best to speak to an OB about my medical history in regards to any future pregnancies that I might have. No, I'm not pregnant. But we would like to have another child in the future and I'd like to know what to expect. If you are new to my blog, I had a heart attack and was diagnosed with Broken Heart syndrome in October of 2011. Read more about it here. Two important things to note about my syndrome.

First: My heart is completely healed. I have no side effects from my attack and I feel completely fine. People are shocked by how quickly I recovered and I often forget that I had a heart attack less than 3 months ago.
Second: My syndrome is rare. Well, rare might be the wrong word. It is not frequently diagnosed because it is still a fairly new diagnosis in the US. It has been studied in Japan for years, but US doctors are now only starting to research it. Most of the people who have it are post-menopausal women. So for me, at my age, it is rare. Due to this, there is absolutely no information out there about how pregnancy affects Broken Heart patients.

So, when I called my OBs office to make an appointment, I was immediately referred to a high risk OB. The normal OBs won't touch you when they hear the words cardiomyapathy (heart attack) and pulmonary edema. I'm pretty saddened by this because I loved my OB. So I made an appointment with the high risk OB. I expected to go in there and discuss what the plans would be if and when I did get pregnant again. ie the frequency of appointments, what to expect at said appointments, what the delivery process would be (I assumed another c-section would be required but I wanted to check)  and what hospital I would deliver at because the hospital I delivered Grace at is small. Yes, I like to plan ahead and know what I'm getting myself into. That is not what I got. At all.

There was no discussion about plans. No conversation about how my body might be affected and what I might need to watch out for. Instead, he quickly told me that he recommended that we don't have any more children. That pregnancy forces the heart to work much harder than normal and with my history, this could cause problems. That the reoccurance rate of attacks in Broken Heart patients is 15-25%. That cardiomyapathy patients face a 50% mortality rate during future pregnancies and that I could risk losing permanent heart function or even death during pregnancy and labor leaving my husband to care for 2 children. That if I started losing heart function during the pregnancy they would recommend that I terminate the pregnancy immediately (I about lost it here, that really really bothered me.) So to avoid all of this, I should make an appointment for a tubal ligation for me or a vasectomy for my husband as soon as possible since my cardiologist told me I'm no longer allowed to take birth control. I had Grace with me and he kept mentioning how I should be happy to have her and that I was lucky to have one child before all of this happened. And that was the end of it. Have a good day and call us if you have any questions. I quickly gathered up everything and almost ran out of the office. I made it to the car before I burst into tears.

And I cried the rest of the day. I was devestated. Not once had I thought that we might not be able to have another child. I'm only 28 years old. This man had just taken my dreams for a bigger family and a sibling for Grace and dismissed them with a smile. I didn't know what to think or say and I couldn't repeat what he had said to anyone with bursting into tears.

I spent Wednesday numb. Trying to process everything and work through it all in my head. When I finally got a hold of myself enough to start thinking about everything, I realized how misguided most everything he had said was. I am not a "normal" cardiomyapathy patient. My tests prove that I am perfectly healthy and my risks will be totally different than that of someone who had a full blown heart attack leaving tears and damage. All of the statistics he was quoting don't apply to me. Also, I have done a lot of research about Broken Heart syndrome and no where have I read the reoccurance rate being 15-25%. Most articles, including the most recent studies from Johns Hopkins and the Mayo Clinic quote it as being somewhere between 5-10%. In my head, that's a big difference.

So, where does that leave me? We decided we need to get a second opinion. We are going to go to meet with another high risk OB at a bigger hospital who hopefully will have more knowledge about Broken Heart. I will not knowingly go into a pregnancy that puts myself or the baby at high risk. However, a close family friend of ours who happens to be a doctor, put it well tonight when he said "every pregnancy entails risk, but you are healthy, your heart is fine. No OB is going to advise you to get pregnant because you are an unknown." I hate going into things blindly. Not knowing what I'm getting myself into. So we'll see what the second opinion turns out to be. And then we'll go from there.

It has been an emotional, crazy week and I think we're finally getting things back to normal. It will be a while before we go to the next high risk OB visit and I'm ok with that. For right now, I'll enjoy my time with Grace! So my blogging schedule should return to normal this week!



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10 comments:

  1. I'm so sorry about the comments you got from the doctor. They seemed completely insensitive. I do agree with you getting a second opinion and finding an OB that you like. I hope you get the answers that you are looking for.

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  2. what a roller coaster. was your husband with you? i would have been so upset with that first doctor. i'm hoping that this second opinion brings some hope and encouragement for you!!

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    1. No, unfortunately he was not. He will be coming to the next appointment though!

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  3. Oh gosh! I cannot even begin to imagine. Sending loads and loads of hugs.

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  4. What a tough way to end Grace's birthday week. Sorry Stephen. You know we are Herr for you'

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  5. Wow, sweetie, I am so sorry the doctor was so cold and insensitive. Good luck at your second opinion appointment - I hope you will receive some good news <3

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  6. I hope that your second opinion can give you better news

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  7. How sad that the doctor was not tailoring his response to your situation at all. It seems like he should have taken a little more time to fully understand the whole situation. Good for you for not just listening to him and throwing in the towel. I would definitely get a second opinion. I hope it turns out well for you!

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  8. Wow! I'm so sorry! I really hope you get a better second opinion. Good luck hun!

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  9. Definitely get that second opinion and if necessary, a third. Then you and your husband can make a better informed decision on your family plans. And remember that every pregnancy has its risks and we don't always know what lies ahead--your health situation now may not be all that different than your health situation when you became pregnant with Grace, exept now you know you have this syndrome. *HUGS*

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