Help me understand

[Guest]

Hi. I need to understand the ins and outs of BAV and, more importantly, what I need to ask my doctor. I have a very odd background that adds complication to what I have learned form Google and here about what my options are.

I am in my mid 30s recently diagnosed BAV. I had a heart murmur since childhood. I have Crohn's disease. I have diabetes (type II, but always had issues with low sugar since I was a child). I have several other autoimmune disorders. I am allergic to the majority of antibiotics (amoxicillin, penicillin, erythromycin, azithromycin, etc.). I need to know what to ask my cardiologist in my upcoming consultation since my diagnosis, which was only given over the phone by a nurse.

I understand that a mechanical valve would be complicated by a bleeding disease like Crohn's (can I take blood thinners?). I control my diabetes solely by a low-carb diet--no medication and no insulin. I don't know how that complicates BAV treatments.

What measurements should I be aware of to ask my doctor? Do I really have a future if I need valve replacement, given my medical conditions?

 

[honeybunny]

Welcome to the site. You will find lots of good feedback from folks who have traveled this journey.

You mention your BAV diagnosis but not that you have stenosis in the valve. Others can correct me if I'm wrong, but a bicuspid aortic valve does not need to be replaced as long as it is functioning. It is when it becomes calcified that replacement is needed. In my case, an echocardiogram provided the initial diagnosis of BAV with calcification. I then had a transesophageal echocardiogram (TEE) to determine how severe it was and learned it was moderate to severe stenosis, which meant surgery within the year. Other folks on this site with BAV have spent years in the "waiting room" before their valves needed to be replaced. So ask your doctor 1) if you have stenosis of the valve, 2) what tests will be done to determine the severity, and 3) how soon you would need surgery if the valve shows calcification.

Regarding your diabetes, I am borderline Type II and take Metformin to control it. My surgery was in September 2015 and I had no problems in that regard. I stayed on my medication before and after surgery, including recovery. I can't address your concerns regarding Crohn's disease but maybe someone here can answer your questions about that.

One thing that helped me come to terms with my diagnosis and need for surgery was the fact that without surgery I'd probably be dead in a year, so whatever risks were involved with the surgery were worth it to extend my life.

Hope this helps. Keep us posted.

Miche;e [h=1][/h]

 

[NDNMD]

Im the OP (didn't sign in until now). I haven't had my stenosis severity or calcification told to me. Do I ask for that directly? What numbers would be good? I had a echocardiogram done for unrelated chest pain (which resolved). The BAV came back from that.

 

[Paleowoman]

Hi - I'm just about to go out to an appointment with my diabetes specialist and noticed your post. I am Type 2, or rather an 'unclassifed' type of diabetes which is put down as Type 2. I am thin and not insulin resistant. I control my diabetes with an extremely low carb diet (Dr Richard Bernstein way of eating) and occasionally repaglinide on an as needed basis. The diabetes has not been an issue with my bicuspid aortic valve which I had replaced when I was 60. The murmur from the valve was heard when I was 25. If you ever need your BAV replaced they will need to know your other conditions such as diabetes and Chron's disease - I don't know if that would exclude taking a blood thinnner (I also have osteoporosis and small airways disease - at the time of surgery the surgeon and hospital had reports from all my consultants). Regarding your echocardiogram, you should ask for the pressure gradients across your bicuspid aortic valve which will help indicate the severity or not of the stenosis.

 

[NDNMD]

Does your doctor give you trouble for the "high-fat" diet?

 

[honeybunny]

Stenosis is the term for calcification. Sorry I didn't make that clear. As Paleowoman pointed out, your echocardiogram should provide some indication of severity and your cardio should be able to explain this and more during your consultation.

 

[Paleowoman]

Does your doctor give you trouble for the "high-fat" diet?

No, no trouble. My total cholesterol level is pretty high but my HDL is very high, half the total cholesterol in fact, which leads to the measurement of high total and a very protective lipid profile, and my triglycerides are very low. The very low triglycerides are a reflection of the very low carb diet which is all to the good, and the high HDL is probably due to the kind of fats I eat - lot of coconut oil, oily fish, organically reared meat, almonds. My endocrinologist realises that carbs, and complex carbs too, are what raises blood glucose levels as he sees too many diabetic patients with poor blood glucose control.

When I was in hospital for my aortic valve replacement my endocrinologist came to see me every single day, even saw me in ICU - just to make sure things were okay diabetically, and becasue he's a very caring doctor. Everyone, even non diabetics get very high glucose levels following that type of surgery due to the way the body reacts to the extreme stress of that type of surgery (heart being stopped, highly invasive etc) - most people are put on insulin sliding scale for a few days, and a patient with established diabetes can react even more, but this is well known so nothing to worry about.

 

[epstns]

Did the doctor or nurse tell you there was any real problem? There may not be. IIRC, something like 2% of the general population has the bicuspid aortic valve condition, but only about 25% of that 2% ever need surgical intervention. That means that barring other findings, the isolated finding of a BAV may just mean that you need to monitor it for life, in case it ever starts to deteriorate.

If you have none of the "cardinal symptoms" of shortness of breath, fainting or chest pain, the docs may just tell you to come back every year or two for another echo cardiogram to ensure that none of the measurements of your heart are getting into dangerous levels. They will not recommend "preventive" surgery to replace a valve that is not a risk to your life. In fact, they only recommend surgery once they have calculated that your chances of death if you do nothing are greater than the chances of your death due to surgery.

Given your complicated situation, the longer you can safely wait before potential surgery, the better.

 

[cldlhd]

Hey Steve if you don't mind me asking where did you get that statistic stating only 25% of BAV's end up needing surgery? Not that I'm questioning it just that it's something that has occupied my brain from time to time.

 

[NDNMD]

Did the doctor or nurse tell you there was any real problem? There may not be. IIRC, something like 2% of the general population has the bicuspid aortic valve condition, but only about 25% of that 2% ever need surgical intervention. That means that barring other findings, the isolated finding of a BAV may just mean that you need to monitor it for life, in case it ever starts to deteriorate.

If you have none of the "cardinal symptoms" of shortness of breath, fainting or chest pain, the docs may just tell you to come back every year or two for another echo cardiogram to ensure that none of the measurements of your heart are getting into dangerous levels. They will not recommend "preventive" surgery to replace a valve that is not a risk to your life. In fact, they only recommend surgery once they have calculated that your chances of death if you do nothing are greater than the chances of your death due to surgery.

Given your complicated situation, the longer you can safely wait before potential surgery, the better.

I haven't spoken to the doctor yet. I had my EKG 2 months ago, and at that time I made a follow-up appointment for next week. One month after the EKG, the nurse called me to make sure I keep my follow up. She told me I shouldn't panic, but I had BAV. We got snow later, and I called to ask if I was allowed to shovel. The doctor was out of the office, but another doctor reviewed my file. The nurse called me back and said they wouldn't tell me it was safe to shovel because they haven't done a stress test. This seemed like a non sequitur to me, since heart attack wasn't one of the issues I was concerned with BAV! I am not sure now what I can or cannot do. Am I allowed to work out? I don't know. It's very frustrating being kept in the dark about everything, which is why I want to make sure that I ask the right questions when I go next week for my consultation with the cardiologist.

 

[cldlhd]

They're going to cover their ass on a question like that. Bav isn't connected to a heart attack but if there's a lot of leakage of stenosis that might make them say no shoveling. Bottom line is once you're in the system as a heart patient of theirs I highly doubt you'll find someone to ok it without more tests. Fwiw after I had my tests, including a cardiac catheterization, I specifically asked my surgeon about keeling over while shoveling snow and he said that if I collapse while shoveling snow it'll be from my back not my heart. I know it's easy for me to say but you'll have to try to be patient while continuing to push for the answers you need.

 

[NDNMD]

How long is the diagnostic process? I am expecting to go in next week to pretty much hear that they need to do more tests (TEE maybe?). Then I will wait weeks for those tests and more weeks for the follow up. I read stories of people here getting a test result and suddenly getting a valve replacement. It doesn't seem like a logical process. My family keeps bugging me to work out, but I don't want to if its not safe.

 

[Paleowoman]

When my heart murmur was first heard I had referral to a cardiologist and then an echocardiogram. After echocardiogram the cardiologist told me about the BAV and that was it. No other tests. I didn't have other tests until the stenosis was sufficiently bad to need referral to a cardiac surgeon for replacement, then I had CT angiogram. That's all. I never had a TEE - I suppose one could have been done but would more likely have been done on referral for surgery just to make sure of the severity of the stenosis - or regurgitation if that was what I had (I had stenosis). Anyway, follow diagnosis I did not have yearly echos until several years later. Everyone's journey will be different depending on the BAV.

 

[Paleowoman]

PS - the nurse probably should not have told you that you had BAV - that's the kind of thing the cardiologist would tell you when he had the results in front of him so he could explain them to you.

 

[cldlhd]

As paleowoman said everybodys case is different. Not to alarm you but BAV often comes with an aneurysm in the ascending aorta.I had one and that's what gave me my restrictions until I had my surgery 11 months later. I wouldn't push yourself until you get the proper tests. How long it takes to get the tests and a diagnosis is impossible for anyone out here to tell you accurately. It depends on your healthcare provider and how busy or understaffed they might be. could be quick or it could be months.

 

[NDNMD]

As paleowoman said everybodys case is different. Not to alarm you but BAV often comes with an aneurysm in the ascending aorta.I had one and that's what gave me my restrictions until I had my surgery 11 months later. I wouldn't push yourself until you get the proper tests. How long it takes to get the tests and a diagnosis is impossible for anyone out here to tell you accurately. It depends on your healthcare provider and how busy or understaffed they might be. could be quick or it could be months.

That's my worry. Also, from what I read, there is a 10% chance of having intracranial aneurysm, which nobody ever checks for. My family is going to bug me constantly about working out, and without a doctor saying I can or cannot, I'll be in an annoying position.

 

[cldlhd]

I never heard of the intracranial aneurysm, thanks for giving me something to worry about-ha! As for working out I can't see anything wrong with walking and light cardio , I'd tell them to mind their own business and that if you lift weights and you have an aneurysm you could die .

 

[NDNMD]

I never heard of the intracranial aneurysm, thanks for giving me something to worry about-ha! As for working out I can't see anything wrong with walking and light cardio , I'd tell them to mind their own business and that if you lift weights and you have an aneurysm you could die .

It's not always so simple. They all mean well. Here is my source about the intracranial aneurysm:

https://www.ncbi.nlm.nih.gov/pubmed/20439844

 

[cldlhd]

Well obviously I don't know your personal situation but it is a fact that lifting weights with an aneurysm is a potentially fatal move. Thanks for the link.

 

[Paleowoman]

That's my worry. Also, from what I read, there is a 10% chance of having intracranial aneurysm, which nobody ever checks for. My family is going to bug me constantly about working out, and without a doctor saying I can or cannot, I'll be in an annoying position.

I did weight lifting, and quite heavy weight lifting, the day before surgery no problem. If that nurse hadn't told you that you had BAV you'd be none the wiser and getting on with your life. If what the nurse saw was "dangerous" you'd be having a quicker appointment with the cardiologist than you are having. When are you seeing the cardiologsit ?