Introducing Myself/My Story

[Anne]

I'm so glad to have found this site. I"m hoping it will be a great resource AND source of comfort as the time for surgery gets closer. I have a bicuspid aortic valve, I have known my whole life but never worried about it until I was 25 or so when I thought I had better get it looked at again. For the next ten years I had echos once every two years and they all showed moderate stenosis and moderate regurgitation of the aortic valve. Over those ten years there wasn't much change in the numbers. Then I became pregnant at 34. An error in my echo at 20 weeks pregnant led me to deliver at UCSF (San Francisco) instead of in my rural hometown in northern California. I delivered a healthy boy at 41 weeks and zero cardiac complications. I just had my first echo since my son was born at 7 months postpartum and it looks only slightly better than my echo at 20 weeks pregnant, which by the way went from 20 mmHg peak pressures to 60mmHg peak pressures. My cardiologist has suggested to begin doing echos once a year now and thinks that I'll be needing the AVR sooner than originally thought. I am asymtomatic.

I am alarmed that my post pregnancy echo hasn't improved any but I have yet to lose the pregnancy weight, need to lose 20 pounds to get to pre pregnancy weight and 30 - 40 pounds to be at my ideal weight. My cardiologist said that since weight effects your cardiac output that if I lose that weight my numbers could improve. I'm wondering if anyone else here has found that to be true? I'm also wondering about the women on here who have had babies with their original heart valve and if they required surgery soon after birth? My partner and I may want just one more child and the hope is to do it sooner rather than later given my age, but since this past pregnancy seemed to accelerate my stenosis I'm just not sure if it's worth it. I love my baby so much and I'm thrilled to be a new mom, it really is the best thing that has ever happened to me and I want to make sure that I have many, many years to raise him and be his mom.

My last question is those of you in California, do you have any recommendations on the best hospitals for valve replacement surgeries? I live 5 hours north of San Francisco and the healthcare here is very rural, I should know I'm a nurse

Thanks for taking the time to read about me, I look forward to meeting some of you!

 

[dick0236]

Hi Anne, welcome......this is a very supportive and informative site for valve patients. I am sure that you will get some good input regarding child birth and California providers. You might want to use the "search" feature to view some older posts until the ladies find your thread. There are many on the forum that have had experiences, and questions, similar to yours.

 

[tom in MO]

I had a bicuspid valve, and was/is overweight. Pre-surgery, my cardiologist recommended weight loss and exercise for overall cardiac health improvement, but it will not stop your bicuspid valve's degeneration. Will it slow it? Nobody can say how long it will before you need a replacement with or w/o exercise, since we are each different. Lose weight because it's good for you, not to stop degeneration...but who knows?

Many people on this forum have had children with a bicuspid valve before and after a replacement. For kids after surgery, you will probably be steered towards a tissue valve replacement due to the need for warfarin therapy with a mechanical valve. That's one "thing for sure" but it's neither bad or good, both valve types work and have equal risks, just different, except with pregnancy where tissue is better.

 

[Greg a]

A heart felt WELCOME,Anne, to our OHS family glad you found the site , there is a wealth of knowledge here for the future ... and I have listed some links for your research and prep ....WAITING IS THE WORST PART..

Bob/tobagotwo has up dated a list of acronyms and short forms http://www.valvereplacement.org/foru...4&d=1276042314

what to ask pre surgery http://www.valvereplacement.org/foru...t-of-questions

what to take with you to the hospital http://www.valvereplacement.org/foru...al-a-checklist

Preparing the house for post surgical patients http://www.valvereplacement.org/foru...House&p=218802

These are from various forum stickies as mentioned above and there is plenty more to read as well


And Lynw recently added this PDF on what to expect post op
http://www.sts.org/documents/pdf/whattoexpect.pdf

 

[caligirl]

Hi Anne,
Welcome to the boards. Im sure you have already seen there is a ton of helpful information. I am from CA as well, I definitely recommend that you make an appointment with the Stanford Center for Marfan and Aortic Disorders. I had 2 pregnancies when I was 20 and 25 both uneventful in reference to cardiac complications. At the time I did not even know I had heart disease, they are waiting until my aorta is 5 cm to refer me to a surgeon, as of now, I don't have stenosis and have trace to mild regurgitation. My cardiologist did mention that pregnancy can make the condition worse, you can have children after a valve replacement if you choose to go with a tissue valve. Good Luck

 

[Kitty]

Hi, I had my first child 5 1/2 months ago. At 25 my cardiologist told me that I should think about having children soon as I prob had about 10 years till my bav would need fixing. I had a few issues while being pregnant and my daughter was born at 37 weeks by cesearian as the doctors didn't think a natural birth was safe. My cardiologist thought that the sudden severity of my stenosis was mainly due to the added pressure of being pregnant. However that now seems to not be the case and I'm not allowed to get pregnant untill after surgery. So we got 4 years instead of 10. Still extremely thankfull we got our little princess. However my cardiologist says there's no telling if the pregnancy caused the worsening of my condition or if it's just one of those things. Talk to your cardiologist and see what he/she thinks about another pregnancy. You could also talk to a high risk ob who specialises in pregnant woman with heart problems. We spoke to one prior to getting pregnant and saw him regularly throughout and found him to be amazing.