Newly diagnosed Bicuspid Aortic Valve...what to ask?

[marsbar07]

Hello everyone! I'm really excited to get some answers on here! I am 31 year old female, newly diagnosed with bicuspid aortic valve. I have had runs of PVCs (now resolved but unknown as to why they were there in the first place) and after my 2nd echo (they were 6 months apart) I got the diagnosis of bicuspid aortic valve. Now I was a deer in the headlights, as I was expecting something electrical, not structural. On Friday I am picking up copies of my medical records to look at the specific values. I was told I don't have any restrictions, just an echo every 6 months. I feel fine, just get short of breath when I walk up the stairs. I normally do some HIIT (high intensity interval training) and weight lifting everyday but should I back off? (I"m assuming yes???). Also, I've noticed recently that I have had to swear off of any type of caffeinated beverage...my heart rate goes crazy and I get strange palpatations at night anytime I have coffee or soda...so it's been just water for the past six months. Could that all be related?

When I pick up my results (2 echos and a stress test) what should I be looking for specifically? I know to should be compairing different measurements and such but which ones? I live in a small town and am going to see a congenital heart valve specialist in Phoenix in April.

Any tips/tricks as to living with this please let me know! I have two little ones that I am having checked out and pushing for them to have an echo as well, just in case.
Thanks so much!!

 

[Paleowoman]

Welcome to the forum ! I was diagnosed with bicuspid aortic valve when I was 25 but didn't start to have yearly echos until seven years ago and then six monthly ones three years ago. I had the valve replaced just over four weeks ago. I'm now 60 so went all this time fine. I did high intensity heavy weight lifting until three months ago with no restrictions ! Then I had to stop. I had no symptoms ever.

The things to ask, imho, are what is your pressure gradient, what is your valve area size, what is your ejection fraction and what are the restrictions if any at this stage. Also the likely timescale for replacement so you have some idea when and where you're heading. For example, my cardiologist told me that when my pressure gradient reached 60 mm/Hg that could be the time for referral to surgeon - unless I had symtoms beforehand. It was actually soon after I reached 60 mm/Hg and my valve area size went to 0.9 cm/sq that I was referred.

I'm sure others here will chime in.

I've never had my son checked out, I'm sure that anything would be picked up well in time if he did have anything - he's so stressed about this that he keeps geting the GP to listen to his heart for a murmur - so sign of one. None of my parents/grandparents or any other relatives had a valve problem so I guess I'm on my own in the family.

 

[AZ Don]

Hi, welcome to the club. It's great that you are getting copies of your test results (doing so saved my life) and are looking to learn more about your condition. Even without looking at the numbers the echo should have a summary. What you are looking for is whether you have Aortic Stenosis (the valve doesn't open as it should and the heart has to work harder) or Aortic Regurgitation (after the heart pushes blood out into the aorta some leaks back ... so the heart has to work harder). Surgery is generally not recommended until you have one of these and it's at least severe, but that can happen even before you have symptoms. Here is a link that shows the criteria for evaluating the severity of aortic stenosis and regurgitation: http://www.echopedia.org/wiki/Classification_of_valve_stenosis_and_regurgitation.
Here's a good link for evaluating Aortic Stenosis, see especially figure 3: http://familymed.uthscsa.edu/geriatrics/reading resources/Aortic Stenosis.pdf

For more info, see: http://www.cardiosource.org/Science...ATmTahFtxUQ,Congenital+Heart+Disease&search=1
On this page, scroll down and select the 2006 Guideline with 2008 Focused Update. These are the reference guidelines for the management of valvular heart disease. Although the document is large the sections on Aortic Stenosis and Aortic Regurgitation are not so long and they include the specific guidelines for grading the severity and the associated recommendations for treatment (generally when to have surgery).

Also, you should check (or ask about) the condition of your aorta, whether it is dilated or if you have an aneurysm. People with a Bicuspid valve have a roughly 20% chance of developing an aneurysm. That is something they will look at when they do your echo's and it is not uncommon to have both aorta and valve fixed at the same time.

Re. exercise, if you have a severe condition then you might need to back off somewhat, but in that case you should be talking to your Dr. about this. Dr's have different opinions on this but I have been advised to avoid heavy lifting and straining because of my risk for developing an aneurysm (as I already had 2 (root and ascending aorta) I've proven I can get them. Then again, Arnold Shwarzenegger had a bicuspid valve and never had an aneurysm. Everyone is different.

FYI, I live just north of Phoenix and had a valve sparing aneurysm repair at Mayo Clinic (Phoenix) by Dr. DeValeria. I highly recommend Mayo, though they are quite selective in what insurance they accept.

 

[mbeard]

Az Don,

I appreciate all your research articles on all of these valve issues, and the way you make them easy to access. I am technologically lacking, but if you put it out there for me I will definitely read it. That is also why this forum is so useful.

Hi, welcome to the club. It's great that you are getting copies of your test results (doing so saved my life) and are looking to learn more about your condition. Even without looking at the numbers the echo should have a summary. What you are looking for is whether you have Aortic Stenosis (the valve doesn't open as it should and the heart has to work harder) or Aortic Regurgitation (after the heart pushes blood out into the aorta some leaks back ... so the heart has to work harder). Surgery is generally not recommended until you have one of these and it's at least severe, but that can happen even before you have symptoms. Here is a link that shows the criteria for evaluating the severity of aortic stenosis and regurgitation: http://www.echopedia.org/wiki/Classification_of_valve_stenosis_and_regurgitation.
Here's a good link for evaluating Aortic Stenosis, see especially figure 3: http://familymed.uthscsa.edu/geriatrics/reading resources/Aortic Stenosis.pdf

For more info, see: http://www.cardiosource.org/Science...ATmTahFtxUQ,Congenital+Heart+Disease&search=1
On this page, scroll down and select the 2006 Guideline with 2008 Focused Update. These are the reference guidelines for the management of valvular heart disease. Although the document is large the sections on Aortic Stenosis and Aortic Regurgitation are not so long and they include the specific guidelines for grading the severity and the associated recommendations for treatment (generally when to have surgery).

Also, you should check (or ask about) the condition of your aorta, whether it is dilated or if you have an aneurysm. People with a Bicuspid valve have a roughly 20% chance of developing an aneurysm. That is something they will look at when they do your echo's and it is not uncommon to have both aorta and valve fixed at the same time.

Re. exercise, if you have a severe condition then you might need to back off somewhat, but in that case you should be talking to your Dr. about this. Dr's have different opinions on this but I have been advised to avoid heavy lifting and straining because of my risk for developing an aneurysm (as I already had 2 (root and ascending aorta) I've proven I can get them. Then again, Arnold Shwarzenegger had a bicuspid valve and never had an aneurysm. Everyone is different.

FYI, I live just north of Phoenix and had a valve sparing aneurysm repair at Mayo Clinic (Phoenix) by Dr. DeValeria. I highly recommend Mayo, though they are quite selective in what insurance they accept.

 

[MrsBray]

Welcome! We're all ages here. I was diagnosed 10 years ago at age 33, and had no real symptoms until about 18 months ago.

Also, I've noticed recently that I have had to swear off of any type of caffeinated beverage...my heart rate goes crazy and I get strange palpatations at night anytime I have coffee or soda...so it's been just water for the past six months. Could that all be related?

Probably, as I have noticed this as well. At first I just chalked it up to getting older. Then I was so kindly reminded that 40 is NOT older. Eh, water is better for us anyway, right? I haven't had any restrictions until 12 months ago.

I'm meeting with a surgeon this week to set a date.

You'll find a ton of good advice here, but no advice here is as good as you can get from your doctor.

The best thing about these forums is the support, the feeling of a group, all together, taking care of each other. Good luck!

 

[marsbar07]

Thanks everyone! AZ Don - great links...I have will be printing out alot of that info to keep for reference. I found a congenital heart valve specialist in phoenix that I will be seeing in April. I'm assuming I'm pretty stable right now, my cardiologist didn't even mention anything about surg (just told me an echo every 6 months). He didn't mention anything about complications or later on in life, but maybe he didn't want to freak me out right away?? Either way a 2nd opinion doesn't hurt.

 

[neil]

just wanted to say welcome aboard marsbar

 

[AZ Don]

Thanks everyone! AZ Don - great links...I have will be printing out alot of that info to keep for reference. I found a congenital heart valve specialist in phoenix that I will be seeing in April. I'm assuming I'm pretty stable right now, my cardiologist didn't even mention anything about surg (just told me an echo every 6 months). He didn't mention anything about complications or later on in life, but maybe he didn't want to freak me out right away?? Either way a 2nd opinion doesn't hurt.

Glad to help. Many people go thru life with a Bicuspid Aortic Valve and never have issues. Many others have one of the things I mentioned at some time in their life - but they can all be fixed. That's why it is important to be monitored regularly, and 2nd opinions are always good.

 

[Mentu]

I agree with the others that it is helpful to keep copies of the results of your echos. However, unless there is a serious problem that is clearly indicated, these results are only helpful over time since they will give you an idea of how rapidly your heart is changing. For most people with valve problems, the change will never accelerate and become a problem. I would say try not to over emphasize the importance of any one test unless it is significantly different from the previous tests. One of the problems many of us have had is that "symptoms" can be caused by other things and may not be caused by the heart valve. Your cardiologist should discuss whether or not you should limit activity in any way. The best thing you can do to prepare for a day when your valve might need replacement is to stay as healthy as you can. Good cardiovascular fitness and life habits will stand you in good stead and help make recovery from surgery much easier. I think my own experience is pretty typical. At age 50 my new doctor asked if I ever had been told I had a heart murmur to which I said "No." Eight years later, I began to experience the first clear symptoms which became much worse in the four months before my valve was replaced at age 59. This is a process that often takes years during which you can learn more about yourself. While this is happening, surgical techniques will improve as should the quality of the replacement valves so time is on your side. I would add that you should remind your son that having a parent or grandparent with a valve problem does not mean that he is likely to share it. My Grandfather had a valve problem, of his nine children, only my Uncle Bob had it and of my 37 first cousins, only I share it. The odds are good that your son does not but even if he does, it is only a problem if it begins to change rapidly and that takes years so it would be no surprise.

Larry