Bicuspid Aorta

[Cynthia]

Hello everyone,

After an enormous episode of heart "jumping" and "racing" and a few "squeezes," I was tested at told I have a bicuspid aeorta. Doctor says it is a congenital heart abnormality. And, the unusual valve is leaking too.

I'm 37 years old, and a mother to two preschoolers and one elementary schooler. Doctors are still awaiting results from the 24-hour holter monitor. They're sure the jumps were "missed beats."

Now, I'm having little or no episodes. Just a week ago, it was so bad that I couldn't sleep and even thought I should go to emergency.

I'm looking for any hope at all regarding a bicuspid aeorta for someone my age. Also, I'm really, really scared to jog now. I'm afraid of putting too much "pressure" on the valve, causing another rash of thumping, or maybe leakage.

I'm scared and confused, and don't go to the doctor again until 5/1. I've never been so aware of my heart's every move until now.

Does anyone have any experience with a bicuspid aeorta with some leakage.

Doctors are talking about an eminent need of repair in the future. I heard that such a surgery is cutting edge. Is that true too?

I'll take any advice,
Cynthia

 

[Georgia]

Welcome to the site! My experience isn't with BAV - just wanted to say hi. Others will be along who have a great deal of experience with this and will be able to offer advice.

My condolences to having such a problem - it's a shock at any age - at 37 I'm sure it's worse. But you're in the right arena to learn about your condition and we're always here to offer advice and support.

 

[JimL]

Hi Cynthia, and welcome!
I was born with a bicuspid aortic valve. I was about 4 years old when they detected the heart murmur, but I didn't need surgery until I was 46. However, then I needed surgery quickly. I've had some a-fib since surgery, but none that I was aware of before.
I don't have any definite answers to your questions. Is the doctor you're going to a cardiologist? Have you talked to a surgeon yet? What kind of test did you have? Was it an echocardiogram?

 

[mntbiker]

Hi Cynthia,
I am a year older then you now but found out I had a BAV (bicuspid aortic valve) back in '91. I went for annual checkups with the cardio and was always told that I would need surgery one day but to keep going as usual and come back next year.

Don't get too stressed about it. Get the results from your echo and post them here. There are many knowledgable people that can help you to understand it.

I also have regurgitation, every cardio I have seen has told me to keep up my activities, it's better to keep your heart healthy. The possible exceptions to this are if you have stenosis (narrowing) of the valve or an aneurysm, these may require some restrictions which your cardioligist will tell you about.

Post when you have a question and read often.

Welcome to the group (of course I'm sure you would rather not be welcomed )

 

[Andrew'sMom]

Hi. My son (age 5) has a BAV with some regurg. I have found this site here as well as Bicuspid Aortic Foundation http://bicuspidfoundation.com/ a tremendous help! While I am at the beginning of the road, there are certainly many people here who can share lots of information. Best of luck to you.
Jen

 

[sfconstrct]

everything you are going through and feeling is quite normal. I was born with a bav of which I was glad I really didn't know what it was or would have to do until about 5 years ago. Otherwise knowing my personality I wouldn't be where I am now. I have always been very athletic and in fact was in the gym the day before surgery. It made me feel good to know I would be strong going in. It has been two and half weeks since the valve replacement. I feel very good walking over three miles daily now sometimes on flat at the beach today around the hood which is very hilly in so. ca. It is scary but the one thing I can say althought it's a real bummer to realize that you will have to have it replaced in the future can dominate your thoughts if you let it. Just make sure you have a good cardiologist do the research, as a good cardiologist will also be able to reccomend a good surgeon when that time comes. The cardiologist will do the test and he will have a good idea when it is time, you most likely will have time to decide when to schedule it. I was glad I could do it in the beginning of the year. Recovery doesn't seem near as bad when the ocean is cold it gets dard early and even when it get's dark early, don't feel like I am missing out on anything. As for me it wasn't bad at all in on Thursday home Monday, some discomfort, no pain meds, just getting stronger each day and glad to be on the other side. Stay in shape live life and when it's time get it done but focus on what it will be like after and how nice it will be to not have it hanging over you head for a long time. As for cutting edge it's not. It's done all the time my surgeon does aprox. 200 a year valves only had another one right after me. This is not uncommon for surgeons that specilize in valve repair or replacement. Just try to not dwell on the negitives it won't change anything it's better than the alternative, looks at it as a small bump in the road. Good luck. Steve in so.ca.

 

[aussigal]

Welcome to our wonderful site Cynthia...

I am also a mum of 3 with a BAV and an ascending aortic aneurysm. I also managed to pass this onto the boys...they are well and not needing any intervention as yet.

I am 2 weeks away from having my surgery...Do check-out the BAV foundation site it is excellent...there is lots of marvellous information there all written in English not Doctors-speak!

So pull up a comfy chair, read lots and ask lots of questions.
Try not to panic...this is very fixable...I am sure most of us had the big cry of OMG I am going to die with this etc....but I assure you we are all alive and well...just have a look at the "active-lifestyle" section to see what some of our more athletic-members get up to...there isnt much you cant do with a new valve and you will probably find yourself with more running energy than now!

Again WELCOME

 

[tantekay]

Hi

Hi

Just wanted to say Hi and I know you will meet a lot of people here with BAV that can offer so much help. I don't have any experience with BAV, just my a-fibs and my son's heart condition, but everyone here is very helpful and very friendly. So welcome and best wishes for you, you'll be in our prayers.

 

[Rush20]

Hello everyone,

After an enormous episode of heart "jumping" and "racing" and a few "squeezes," I was tested at told I have a bicuspid aeorta. Doctor says it is a congenital heart abnormality. And, the unusual valve is leaking too.

I'm 37 years old, and a mother to two preschoolers and one elementary schooler. Doctors are still awaiting results from the 24-hour holter monitor. They're sure the jumps were "missed beats."

Now, I'm having little or no episodes. Just a week ago, it was so bad that I couldn't sleep and even thought I should go to emergency.

I'm looking for any hope at all regarding a bicuspid aeorta for someone my age. Also, I'm really, really scared to jog now. I'm afraid of putting too much "pressure" on the valve, causing another rash of thumping, or maybe leakage.

I'm scared and confused, and don't go to the doctor again until 5/1. I've never been so aware of my heart's every move until now.

Does anyone have any experience with a bicuspid aeorta with some leakage.

Doctors are talking about an eminent need of repair in the future. I heard that such a surgery is cutting edge. Is that true too?

I'll take any advice,
Cynthia

Hi Cynthia. Welcome to our corner of Cyberspace. You will find this site very informative and supportive.

I had my bicuspid Aortic valve replaced almost three years ago. Depending on the condition of your heart and the severity of the bicuspid valve, you might be a candidate for the minimally invasive procedure. My surgeon performed the procedure and the benefits were less post-surgery trauma, faster recovery and a small scar (about length of little finger and pencil thin).

The good news is that the medical advances in procedures, valve selection and post operative care-medication have come a long way over the last few years. There is even talk off future procedures that can be performed without invasive surgery. Best wishes.

 

[Marguerite53]

Hello! Welcome to this wonderful, experienced, supportive community. Ask us anything, anytime and someone will be along to reassure, explain or direct you.

Of course you are scared. And you have little ones. You will feel better when you understand your condition more fully. You should try to learn as much about your condition as you can. Knowledge is power. Doctors often like to keep their patients in the dark so that they can maintain control. You need to let them know that you want to be educated. Start by getting copies of your echo report, and any subsequent diagnositc test they give you. All you need to do is sign a release and they must give you a copy. There are many here who can help you decipher the numbers and values. True understanding should come from your physician, though. We are not medical professionals. We will help you learn and guide you to some good questions to ask your doctor.

I had PVC's (benign arythmmias....premature ventricular contractions) for years and then they suddenly got completely out of control. I didn't know that they were arythmmias. I just chalked them up to the anxieties of raising 3 kids. But when I couldn't sleep, and they just wouldn't go away (I was trying to shake them out of my body by shaking my arms all the time! they were driving me nuts) I finally complained about them. An event monitor (similar to the holter monitor) showed that they were just benign. If you have arythmia in a different part of your heart, it is called A-fib (atrial fibrilation) and that is a more significant, needing to be more closely monitored, kind of arythmia. I was put on a beta blocker called Atenolol. At first, the 25 mg dose helped. Then it just came back. THey upped the dosage to 50 mg (still pretty low, I think) and I dont' really feel them at all now. When I do (because I have brought them on emotionally or with spicy foods or caffeine) they almost feel somewhat drunken.

It is quite possible to live for a long time with a condition. I am different than you in that my BAV has never leaked, but has become stenotic, or stiff and is tired and wearing out. I have aortic stenosis. I learned of my BAV in my late 20's, before children. I gave birth and raised 3 healthy kids (with my husband of now 25 years) and now at age 52, it is time to replace my valve. I was very careful to listen to all the information from my cardios. I was told not to worry, and I didn't....I just took care to watch for signs and symptoms and led my life normally. Even if you do need a repair or replacement, you will almost certainly be able to live your life normally. Be glad that they caught the BAV. Pat yourself on the back for chasing after your unusual feelings and coming up with information that will help you lead a safer life. You'll do great!!

Keep posting! Marguerite

 

[kingpeta]

Hi Cynthia -
Of course there's hope for you! Lots of it! I found out about my bicuspid valve 20-25 years ago. The docs then told me to continue with all activities. Last year I finally had mine replaced at age 45. Your age is an advantage for whatever procedure you have done. Sorry, but I don't know much about repairing a bicuspid Aortic valve. Seems like lots of folks here have mitral valve repair but most aortic valvers have a replacement.

Learn all you can and ask lots of questions. The people here are great with their support.

 

[Sagebrush]

me too !!!

me too !!!

Cynthia....welcome to our site. I also have a bav as well. Here is a interesting fact. This is the most common heart defect so that means there are a lot of us out there. I would recommend you see a Adult Congenital Heart Specialist. They specialize in congenital heart issues and have the most experience in this area. Also you should visit www.achaheart.org this site is full of us congenital heart patients!! Good Luck!!!

 

[LLJ]

Hello Cynthia: Welcome to a place where you are part of the majority and will have access to lots of informed opinions and solid support. No surgery is not "cutting" (pun,Cynthia?) edge. It's new to us who are diagnosed,but luckily not new to the surgeons.
Get a good cardiologist who you trust and like and you know is smart and up to date. You may not be talking surgery for many years. NEVER be afraid to ask a question.Cardiac diagnosises are big business and insurance companies pay well for tx so make your doc earn that new swimming pool!
We are a thriving ,hard to keep down bunch even after surgery. We even run marathons, have more babies,fish,climb,hike,bike and live life.
So ask away! Get answers and be informed.
LLJ

 

[Cynthia]

Wow...THANK YOU for your encouragement EVERYONE

Wow...THANK YOU for your encouragement EVERYONE

To be flooded with encouraging responses from people who actually are in (or were in) my shoes certainly has helped. (A lot!)

I still am a wee bit nervous about my 6:30am jogs, often with not a whole lot of people around. So, I joined an athletic club. I've taken an "about-face," and decided that if part of my heart will need to be repaired, I will make darn sure the rest of it is as healthy as I can to help a future surgery.

Thank you all so much. I can't believe some of you are just days away from having, or days after just having, surgery, and that you're okay.

My father had his aortic valve replace 3 years ago and was very concerned about having a stroke in the process. I talked to a cardiac nurse, and she seemed to think that it happens next to never.

It's a lot to take in. But I do have one question:

I go through spells of heart jumping and racing....and then spells of no symptoms. The jumping and thumping make me stop everything I'm doing...the racing is especially nerve-wracking. Do others of you with a BAV (see, I'm learning the lingo!) have these off and on spells as well?

I wish I could show a picture, but I can't figure out how y'all did that. I tried to attach one. It's nice to put a face with messages, I think.

God bless,
Cynthia

 

[Cynthia]

Wow...THANK YOU for your encouragement EVERYONE

Wow...THANK YOU for your encouragement EVERYONE

To be flooded with encouraging responses from people who actually are in (or were in) my shoes certainly has helped. (A lot!)

I still am a wee bit nervous about my 6:30am jogs, often with not a whole lot of people around. So, I joined an athletic club. I've taken an "about-face," and decided that if part of my heart will need to be repaired, I will make darn sure the rest of it is as healthy as I can to help a future surgery.

Thank you all so much. I can't believe some of you are just days away from having, or days after just having, surgery, and that you're okay.

My father had his aortic valve replace 3 years ago and was very concerned about having a stroke in the process. I talked to a cardiac nurse, and she seemed to think that it happens next to never.

It's a lot to take in. But I do have one question:

I go through spells of heart jumping and racing....and then spells of no symptoms. The jumping and thumping make me stop everything I'm doing...the racing is especially nerve-wracking. Do others of you with a BAV (see, I'm learning the lingo!) have these off and on spells as well?

I wish I could show a picture, but I can't figure out how y'all did that. I tried to attach one. It's nice to put a face with messages, I think.

God bless,
Cynthia

 

[aussigal]

Spells of racing and thumping heart-beats...You Betcha!...
then spells of normal-heartbeat...

Most of the time I feel pretty-normal and look pretty-normal...just like you...
until you look inside and see my leaky aortic bicuspid valve and I also have an aneurysm.

One thing I dont do anymore is hard exercise in which my Blood-pressure and heart-rate rises...
This absolutely exhausts me for the whole-day (so did the stress-test which I failed to finish, thus "Failing" the test!)...
I often would end up ready to faint and so short of breath that my heart-rate would keep rising after I had stopped, instead of dropping...The cramps (claudication) in my calves would also cause me to stop whatever I was doing...and my chest would be thumping...

I took this as a very definate sign to slow-down...

If they are talking of surgery soon for you Cynthia, I would suggest you swap the jogging for walking at whatever pace you are comfortable with...of course check with your Cardio about your limits...surely you could call their office and ask a question or two as your next appointment is still a few weeks away...he may have a different opinion and I am not qualified...

All the best...thanks for sharing a lovely photo...your kids are adorable...
God Bless