ABV w/Aortic Root Aneurysm of 4.8

[brocansky]

Hi all,

I am a 34 year old mother of two (amazing) little boys, 3 and 5. When I was 21 I learned that I had a biscupid aortic valve. I've had it monitored annually since then. In mid December, I learned that my aortic root diameter jumped from 2.4 cm to 4.8 cm in one year. The 4.8 measurement was confirmed by a CT scan. My cardiologist told me to come back in 3 months for another echo or CT scan. I told him he was crazy and asked for a referral to a surgeon. The surgeon told me that he believes the 2.4 reading from last year was an error (and has actually found two different measurements in my echo records). He says I need surgery, it's just a matter of when. He told me I shouldn't lift anything heavy including my two children. OK, anyone out there with little ones know how impossible that is, right? As my aortic valve is also stenotic, I have elected to have my aortic root replaced and I will also receive a St. Jude's valve. My surgery is scheduled for Jan 13th at Sutter Memorial in Sacramento, CA.

I have been 'spying' on this site for weeks. I'm in search of feedback about my decision to operate and my decision about getting a St. Jude's valve. I have read a few stories about the 'ticking' of the valve that make my skin crawl. I'm concerned about how my two young boys will react to the surgery.

I'm surrounded with amazing friends, family, and co-workers and I really do believe I'll be fine. Attitude IS everything! It's very helpful knowing there are others out there who are/were in my shoes. Thanks for any thoughts you may send my way.

 

[geebee]

Welcome.

I do not have a lot of info about BAV although, from what I have learned about anuerysms, you are making the right decision getting things fixed. 4.8 is the point where things start to get dangerous.

Please pay attention to the lifting restrictions no matter how hard it is. After all, you want to be around to lift your children for a long time to come. It's only a couple of weeks and it will go quickly.

I have a St. Jude and do not even hear it any longer. You will probably notice ticking for awhile and then get used to it. Unless you are planning on more children, I would recommend a mechanical so you can avoid further surgeries. However, the final decision must be yours with the surgeon's guidance.

Best of luck and please let us know how we can help.

 

[Ross]

For the life of me, I'm never going to understand why they MUST wait until it's 5.0. Mine blew before it got to the size yours is now. I see no point in waiting, but they feel that until it's 5, the risk from surgery vs rupture is high. I hate damn statistics! Everything they do is based on them and believe me, I know that many have not made it to 5!

 

[JimL]

Maybe I'm wrong, and I've been corrected before, but the important point about lifting is holding your breath. When you hold your breath to lift something or someone, that allows the blood pressure to skyrocket to the point that something can blow. However, if you can force yourself to breathe normally when lifting, that minimizes the hazards. Yes, it would be better to avoid lifting your sons for a few weeks; but if that is unavoidable, and it probably is, then be very careful not to hold your breath when you lift them.

 

[Karlynn]

Welcome -I'm glad you've decided to come out of the shadows and post. My children were young when I had my mitral valve replaced with a St. Jude. I encourage your decision on going with mechanical. Your life for the next 15 years is going to be very very busy. I am so glad that I had those uninterrupted years to be the busy Mom that I was. (My children are now both in college, so life has slowed a bit.) I figured that right about the time my children were at the peak of their busy teen lives, I would have been going through tissue valve deteriortation and surgery, had I gotten a tissue valve, and I don't see how I could have fit that into my life very easily at that time.

You have read a bit about some being bothered by the ticking. I never was. I think probably 95-98% of us with mechanicals really aren't bothered by it. I hardly hear mine at all. Only sometimes at night if it's very quiet.

I would highly encourage you to look into home INR testing right away. With 2 young ones at home, it will be a bit of a hassle to have to go to a clinic or office to get your INR test done.

You were very wise in demanding to see a surgeon for a 4.8. I would encourage surgery as soon as you can get it scheduled.

 

[PJmomrunner]

I think your decision to operate is very wise given the info you have posted. If your surgeon was looking at the echo itself (and not the report) then there is a basis for last year's measurement being an error. If he doesn't have the benefit of seeing the actual echo, I think you have to assume your root is rapidly dialating and I would absolutely operate post haste! In the weeks before your surgery let the boys climb into your lap for cuddles and acquire whatever step-stools you need to eliminate lifting them (onto the toilet, up to the sink, into the carseat, whatever...) because the lifting restriction is probably permanent--not because of the replaced valve but because of the new aorta. You certainly won't be lifting after the surgery, so beginning to transition to new behaviors pre-surgery will probably be easier on the kids.

 

[brocansky]

Thanks!

Thanks!

Thanks to everyone who has responded. I feel soooo much better. You're awesome.

 

[aussigal]

Hi...just wanted to welcome you...

I am in a similar position to you in that I also have a 4.8 annie with a BAV....

I am lucky in that my 3 boys are 10,13 & 15...old enuf to help themselves mostly...and certainly past the picking-up stage....


So glad you decided to stop spying on us
...lol...we really are as lovely as you have read...

boy oh boy are we growing bigger and bigger here...its amazing really how many "Valvers" are walking round out there!