Diagnosed BAV with mild to moderate regurg

[Chritker]

Hi all,

I'd like to start by stating that everyone contributing to this site is pure inspiration, I'm not sure what state of mind I would be in right now if it wasn't for all of you.

This is my story & I'll try to keep it as short as possible:

I'm 35, married with two beautiful daughters. I'm fit, I've played football (soccer) since I was 8 and haven't been diagnosed with anything up until now. I think it was January 6th 2013, my wife & I just finished watching the Hobbit (if you haven't seen it, save your money), I stood up to walk out of the cinema and felt dizzy, some pains in my chest, I had to sit down. When I went to stand up after a few minutes, more chest pain as experienced. My wife, now naturally worried, called for an ambulance.

I was taken to hospital, ECG was fine and the blood tests came back negative for a heart attack. I was discharged and the Dr put it down to lack of fluid intake. The following weeks I continued to feel sporadic dizziness and chest pains but thought it may have been stress.
The week beginning the 4th of March 2013 I was experiencing regular chest pain and felt like I was outside of my body, if that makes sense. I don't have shortness of breath. I took a few days off, saw my local GP, she took a blood test, everything is fine but referred me to a cardiologist.
My father suffers chest pains due to not coping with stress too well, he had a stress test and an echo a few years ago but everything was fine, I thought I would be as well.

On the 12th of March 2013 my life was changed. I saw the cardiologist and was diagnosed with BAV, at the time with a moderate regurgitation. I don't have a family history of heart disease. The rest of my heart measurements are fine, just the BAV. The cardiologist said to prepare for surgery in 12 months. I was shocked, the cardiologist was shocked as he couldn't hear a murmur. He put me on 2mg of Perindopril (reduces blood pressure) stating that there has been evidence that the drug preserves the heart. I don't have high blood pressure.
As you can imagine I searched and searched for Bicuspid Aortic Valve, what it is, the surgery involved and stumbled upon this great site.

My second appointment with the cardiologist was the 26th of March 2013, he has discussed my case with a senior cardiologist and my regurg was downgraded from moderate to mild - moderate. I was told to expect surgery within 10 to 15 years, even though for some reason my symptoms aren't that bad and easily bearable, they really haven't been discussed as a factor for a shorter surgery time frame. I'm sure that may come into account when the symptoms increase.
I was also asked to stop playing football, I've always been active and this is hard for me to accept. It seems as though the only exercise I can do is walking, feels as though I have to wait around for the surgery before I can begin to live again. I'll discuss other options & have organised for a second opinion, not that I don't trust the diagnosis, it may be better to seek advice from someone with more experience.

27th of March I had a CT of the heart/arteries and my next appointment with the cardiologist is on the 9th of April. Here's hoping the scan is good and I don't get an early phone call.

Initially the news threw me around for a couple of weeks and reading what others have posted within the forums, your experiences, has helped to to accept this. I'll know I'll be nervous but when the time comes for surgery, it's just something that needs to be done. I pray to God that either the symptoms remain bearable & the regurg doesn't increase within that 10 to 15 year time frame.

Does anyone else have to take drugs to reduce their blood pressure pre surgery? I find the Perindopril, after approx 30 minutes of taking it, I get regular acute chest pains for a 5 minute period. I'll speak to the cardio about this as well. Scares the hell out of me.

Just one more question. I never took my heart rate pre diagnosis so I can't make a comparison but at the moment my resting beats per minute is an average of 75, is that high?

Keep well,
Chritker.

 

[Bracken]

Chritker, hello and welcome.

Today is my OHS three week anniversary. I'm 38 and feel very fortunate to have had this surgery in my current physical condition and age. It made the surgery and recovery MUCH easier than I expected. So even if the news comes back that you need OHS sooner rather than later, look at the silver lining. You're young and physically active. For me the conditions couldn't have been more ideal.

If you have a 10-15 year window there is also a silver lining. You have plenty of time to prepare. One wouldn't run a marathon without months/years of training, approach OHS the same way. When you meet with your cardiologist find out what type of physical activities you can do. I received my diagnosis a few short weeks before my surgery, but I unknowingly have been preparing for this event for the last few years. Things that helped me include strength/weight training, high intensity interval training, yoga, and proper nutrition. Because my core was strong I had no problem getting in and out of bed within a few hours after surgery. Furthermore, the yoga improved my flexibility and range of motion. I didn't have any back, shoulder, or neck pain/stiffness that others experience shortly after surgery. So again, look at the next few years as an opportunity to prepare physically and mentally for the surgery to make the outcome and recovery that much better.

As for your questions. I was put on blood pressure medication (toporol) pre-surgery. I continue taking it today. It's something I'll continue to monitor, along with my cardiologist and PCP. Also, a HR of 75 bpm is not high and very normal.

 

[newbud]

Chritker, howdy from a fellow aussie (west) your situation sounds pretty similar to mine ( I was 30 when diaganosed, 32 now) . About two years ago I was playing squash, a marathon of a game and straight afterwards felt like really shitty light headed, fuzzy, I flaked for 5 minutes when normally you'd walk off grab a beer. Went to the docs long story short and yep bicuspid valve, stenosis and regurg. mild . Fast forward 2 years I haven't been allowed to play squash ( I was club champion for the last 6 years so this is real frustrating, the boys reckon they get a chance now lol ) I have had every mood swing there is, depressed, lethargic like 2 hours sleeps during the day for a couple months straight, also 2 boys aged 3yrs and now 10months. very supportive wife. I have flat days and think it must be my heart or am I getting old the mind games with the valve are by far worse than any physical pain I have endured thus far.
I have recently started going to the gym, juicing, lost a bit of weight and my BP is sitting on 120/80 without any medication. It was a bit high but tweaking my diet and outlook have made a big difference. I have always been pretty athletic and my resting heart rate is around 55 currently even after my last echo I was upgraded from mild to moderate.
I have taken out private health cover so as of July 1st this year my pre-existing condition will come under the private health cover and I am going to push to get this done. I don't want to be in limbo for the next 20years or so. I have talked to a few people and private they are more willing to operate than public system as they realise you may want to do normal stuff before you turn 50 so if you don't have it maybe research and see if it's for you????
So much help on this site, good luck Brother.

 

[Heart Of The Sunrise]

Symptoms mean the risk of permanent heart damage.Waiting will buy you nothing that is long-term tangible! I understand the fear and denial. It means nothing...been there...done that... If you allow your emotions to control what needs to be a well-researched intellectually-based decision the results will not be optimal. I would schedule the surgery within a month or two if it were me!:thumbup:

 

[Chritker]

Thanks for the replies and the support.

One wouldn't run a marathon without months/years of training, approach OHS the same way.

Bracken congrats on the successful op and hoping all is smooth sailing from here. I agree as well, I want to be in the best allowable shape I can be come surgery. Just last week I began to look into Yoga classes around my area, even though I play football, over the years hamstring and other leg injuries have left me somewhat inflexible, I'm not as flexible as I'd like to be and I want to restore that. I started going to a gym in October 2012 and enjoy it, I know some info on the net advises against it but at least if I can continue with bodyweight work I'll be happy with that.

the mind games with the valve are by far worse than any physical pain I have endured thus far.
I have recently started going to the gym, juicing, lost a bit of weight and my BP is sitting on 120/80 without any medication. It was a bit high but tweaking my diet and outlook have made a big difference.

Newbud I struggle with the mind games as well. I tend to over think things, maybe why my bpm is avg 75, I'm sure it should be lower. I feel great for a few days, then the negativity creeps in. It's a rollercoaster that's for sure, every twinge, cough, headache has me on edge, it's ludacris. My kids keep me grounded (2 1/2 and 7 months) and yes, a supportive wife helps tremendously, love my family to bits. I try not to talk to her about it too much though as I know she is feeling the stress and uncertainty as well.
Regarding your diet, what tweaking did you do if you don't mind me asking. I've stopped drinking coffee, only tea now. I have a sweet tooth and have cut back on the chocolate. Rather than a chocolate bar in the arvo at work, now it's a banana or apple. I'm 77 kgs so my weight is good, my body can benefit from not having all that sugar though.
I've been thinking of taking Omega 3 tabs and maybe magnesium but will speak to the cardiologist about supplements outside of my normal dietary intake.

Symptoms mean the risk of heart damage.Waiting will buy you nothing that is long term tangible. I understand the fear and denial. It means nothing...been there...done that... If you allow your emotions to control what need to be well-researched intellectually-base decisions the results will not be optimal. I would schedule the surgery within a month or two if it were me!

Thanks for the concern Sunrise, I have made an appointment to see another cardiologist (more experienced than the current) on the 29th of April. I'm assuming he must be well sort after if it takes a while before people can see him. After all the research, from this site and others my reasoning based on my current advice & diagnosis not degrading for at least another 10 years, highly unlikley as there is no guarantees but I'm trying to remain positive.
Hopefully I'll be 45 before I need the surgery, that gives me 10 years of further research on latest gen valves, improving surgery techniques and enhanced drugs/medicine. I don't want to delay the surgery and I'm wary of other complications that can arise and want to avoid them, at this early stage I just have to place my trust in God and the advice I'm given. Yes there is always the fear but if surgery is recommended sooner, I'll roll with the punches. Currently my symptoms are bearable, annoying at the most and I'll keep in regular contact with the cardiologists.

Regards,
Chritker

 

[newbud]

Hey, basically green juice to start the day, carrot silverbeet granny smiths apples, vitamins like magnesium ( google what magnesium aids and assists especially heart health ) coQ10, vitamin c just do a bit of research and you'll find what you are comfortable with. Not eating that second bowl of dinner, just sensible stuff i try to keep it pretty simple really. On the flipside I still drink beer, have the odd smoke with mates etc.... also . If I become too anal I WILL go crazy.. If I don't need a operation for 10 years I don't want to be a bean tofu eating hippie for the next decade life may as well be over already if you know what I mean, we have to find whatever works for us so if it's something you can stick at will make a big difference.

 

[ALCapshaw2]

Welcome Aboard Mate !

For another opinion, I would recommend talking with a Surgeon who has lots of experience with Aortic Valves. IMO, Surgeons have more relevant experience and a better 'feel' for when to replace valves. I would also suggest asking about their experience with BAV and Connective Tissue Disorders which often go hand-in-hand. Note that Connective Tissue Disorders are also often associated with Aortic Aneurysms so it is wise to have your aorta checked for signs enlargement.

'AL'

 

[JeffM]

What concerns me and confuses me in your case is that you have symptoms with such a low level of progression of your BAV. I realize everyone's body handles it differently, of course, and it's tough to know precisely what's going on inside you. I was diagnosed with mild - moderate regurgitation (BAV) when I was 30 which progressed to moderate - severe in my mid - late 40s with no symptoms. The first actual symptoms didn't show until I had exercise (very high intensity) induced A-fib when I was 52. And then it was time for surgery. Granted, when I met my surgeon, he said I waited 2 years too long; however, my heart has completely normalized 4.5 years post-op. But to me, the fact that you are experiencing symptoms might indicate something beyond basic BAV with mild regurg. I agree with further examination and a surgeon's opinion, especially since you're faced with having to change your lifestyle so much. Is it necessary? If so, and your condition is that bad, should you really be putting off surgery? Questions you've already asked, I know.

 

[T in YVR]

27th of March I had a CT of the heart/arteries and my next appointment with the cardiologist is on the 9th of April. Here's hoping the scan is good and I don't get an early phone call.

Chritker,
One note on the above: usually the results of many of these tests (CT, TEE, Echos, etc) are available within 2-3 days of the test being done (at least in Canada). I have been walking into my cardiologist's office 2 days after every test and requesting the results from his admin person, so I can see them right away. Everyone is different, and not everyone wants to see results if they cannot fully understand them, but the waiting can be difficult between appointments, especially at first. I like to know ASAP (besides, the results are not too hard to interpret (at least a high level) once you have a greater understanding of everything).

Like you, my categorization changed early on - but in the other direction. The initial Echo had me as Moderate; the Cardiologist said I was Severe after he saw me and reviewed the data and listened to my heart/pulse. He also told me that "quite often, the surgeons don't even see you until you are severe or borderline severe" (again maybe that's just here in Canada). I think that is a bit of a generalization, given that everyone's situation can be very different. If I was experiencing the symptoms you are (and if the Cardiologist put me on medication), I'd want to also see a surgeon (or another cardiologist for 2nd opinion) for further opinion/possible additional testing, regardless of the stage they tell me I'm in. And hopefully they could provide sound advice on what you can/can't do for physical activity...

Also, on the CT (mine is tomorrow and they are doing chest/heart, pelvis and abdomen with contrast and inclusive of the aorta/potential for aortic aneurysms), you might want to ask your Dr. to further elaborate on what their tests have covered.

Good luck with everything,
Tony

 

[Chritker]

Sorry, I deleted this post as I accidentally posted the same thing twice.

 

[Chritker]

Thanks for the insight, well wishes and advice.

What concerns me and confuses me in your case is that you have symptoms with such a low level of progression of your BAV.

I wish I didn't have any symptoms, if that were the case I would be happy to put off surgery until the BAV degenerated and my heart started to enlarge. My CT results has thrown a spanner in the works though. They found an anomolous LCX artery branching off the RCA and not the LCA. So my LCX branches of the RCA, snakes around the back of the Aorta and ends up where it is supposed to be, supplying blood to the left atrium and the back of the left ventrical.
There isn't a whole heap of data on these anamolies as they are rare, something like 1.5% of the population only discovered with this. The good news is that the coronary artery isn't running between the aorta and pulmonary otherwise I might already be dead.
What I need to find out now is, is the chest pain from the BAV or is the chest pain potentially from the LCX not supplying enough blood to the heart? Other good news is from the info I've managed to find, my anomoly is one of the best to have, little comfort but I'll take it. Now if the LCX is found to be causing the chest pain, a stent can be put in place to keep it open. My cardiologist thinks the BAV is still the issue because if enough blood wasn't being supplied to the heart, I would have felt pain during the stress test. However, I would still like further tests to be conducted to make sure.
I don't want to have a valve replacement thinking the symptoms are from the BAV only to discover after surgery I still have chest pain.


What would be of interest to me, all of us with BAVs, when did you start getting chest tension and/or dizzy symptoms, early on or late on?

If I was experiencing the symptoms you are (and if the Cardiologist put me on medication), I'd want to also see a surgeon (or another cardiologist for 2nd opinion) for further opinion/possible additional testing, regardless of the stage they tell me I'm in. And hopefully they could provide sound advice on what you can/can't do for physical activity...

Tony I hope your CT results are good? Apart from the anomoly of the LCX, my coronary arteries are fine, no calcification found. A small dilatation was found with my ascending Aorta, it's 35mm, I guess something to keep on top of in the future. All other measurements check out ok.

For another opinion, I would recommend talking with a Surgeon who has lots of experience with Aortic Valves. IMO, Surgeons have more relevant experience and a better 'feel' for when to replace valves.

I have made an appointment to see my cardiologist next week, was supposed to be in four weeks but I want to speak with him sooner. I have asked him I want to start speaking to surgeons, especially now that the anomoly has been found. Better to start scoping sooner rather than later.



Just a question regarding Perindopril (Coversyl), I'm only on 2mg daily but it's playing with my mind. Since taking it I've developed increased anxiety, my heart thumps, back pain, regular head aches (rare for me to have head aches), indigestion and sometimes can't sleep. I'm visiting my GP to see if there is something else available. Does anyone have to take Perindopril and if so do you experience something similar?

 

[Jimjam]

Hi Chritker

Sounds like you're going through it - I feel for you. Make sure you're getting the information you need, if you're not happy with meds - ask to change them. There are mulitple drugs on the market with similar if not the same effect and with different side affects. Blood pressure drugs are a precautionary measure and very popular - the symptoms you're having are typical with these sorts of drugs as well as anxiety - all very normal. I used to find I'd get cold hands and felt very dizzy when I stood up. Remember you have options. I found out I had a BAV this time last year and was given a 2 year window to operate - I had moderate regurg and had a 52 mm aneurism. My surgeon and I didn't want to wait around. I had my op in September - the waiting it the worst part. The great thing for you is that you have plenty of time to prepare and medical treatments are changing so fast you may never have to have a sternotomy.

I'm 38 have 3 kids and like you have played soccer my whole life, run marathons and swum miles. Yesterday marked 7 months post op, I did a 3km ocean swim - you're young fit and have everything in your favour.

Stay positive, ask lots of questions, get second opnions. The way I coped was I gave myself a job to do - find out a much about what was going on, organise the op, get better, fitter and stay strong. You will come out of the other side a different person I have no doubt - these things have a great way of putting things into perspective. I'm now part of a hospital program in Sydney to help patients pre and post op - never thought I would be doing that.

Use this forum too - there is a vast amount of experience here (all different) but valuable and noteworthy.
Good luck
James

 

[Chritker]

Jeez, the last 7 to 8 weeks as been an emotional rollercoaster, as you all well know & it has certainly changed the way I view pretty much everything.

Going back to how the BAV was discovered, I was getting chest pains/tension, went to see the Dr, reffered to a cardiologist, echo, stress tess, CT scan, this is your diagnosis & prognosis. The day the BAV was discovered I was asked to take Perindopril indefinitely.

So I really didn't have the chance to take all of this in & deal with the news without the ACE inhibitor. The past couple of weeks I have struggled through, depressed, anxious with exacerbated chest pains including all of the side effects mentioned in my previous post, made me think something isn't right. With advice from the GP, I've taken myself off the Perindopril temporarily so I can balance myself out mentally if that makes sense. I was starting to think I can't take this anymore and wanted to meet with surgeons and have the grease and oil change with parts asap.

This is what I've discovered, the chest pain/tension, why I went to see the Dr in the first place was being caused by the weight training (recently started going to the gym to prep for the soccer season ahead). The Perindopril was making the pain worse, or my increased anxiety was making me believe the pain was worse. Since being off the Perindorpil for the past five days, I don't have any chest pain. Since stopping the weight training due to my diagnosis, has allowed my body to repair.

Depending on how you look at it, by chance or by the grace of God, the muscular chest pains has brought to my attention something that I will need to have corrected. I am thankful for that knowledge, I'd rather know than not know. I still need to accept this, I'm working through it with now a clearer mind but frankly I have no other choice but to accept this. In order to preserve my heart, yes I do want to take a medication that will enable it to a certain extent, now I just have to work with the cardioligist and be prescribed with soemthing that hopefully doesn't make me go crazy or experience most of the documented side effects. It wouldn't have been pretty had I started hallucinating

Yesterday marked 7 months post op, I did a 3km ocean swim

Congrats on your acheivement Jimjam.

 

[ski girl]

Chritker in my opinion there are three types of cardiologists:
1) Those who freak out and want to operate ASAP even though you have no symptoms (I've had several of these);
2) Those who want to limp you along as long as possible w/o surgery, reducing what exercise you're allowed to do (sounds like yours!);
3) Absolutely wonderful types like my current one who understand that some of us are (or are trying to be!) athletes, and recognise that we need the AVR when we get to the stage of having to reduce our exercise.

If you can find one of type 3 I think you'll get a clearer opinion of the correct path for you. For me, reducing my exercise intensity was not a feasible option as it would have wreaked havoc with my emotional state - and I wouldn't have been very compliant anyway. I'm very thankful to have found a cardio who understood that I'm different to the majority of his patients who simply want to be able to walk to the postbox - we heart patients are NOT one-treatment-fits-all!

Good luck from a sandgroper!

 

[pellicle]

Good luck from a sandgroper!

good one ... That'll get them wondering

 

[reddwarf]

I have BAV with severe regurge and very annoying symptoms, the main one being my heart beat is such a thump it moves my entire body and I find it hard to sleep. The mixed advise one gets from health professionals to people on this site is quite extraordinary (the most common being the "Get it over and done with because symptoms mean permanent damage"). I hope you have gotten a 2nd and even 3rd opinion about your condition, timing of surgery and exercise routine / do's and don'ts. The reason I say that is because I had 3 different cardiologists do EKGs and all 3 had a different diagnosis from mild to severe regurge.

The cardiologist which I trust the most and diagnosed me with severe regurge and water hammer pulse, advised me that I should be doing moderate exercise up to 85% heart rate and I could play rugby (which I decided to stop). He also told me that no medication would help and has recommended against it because of other side affects, including ACE inhibitors. He is the most respected cardiologist at Hammersmith Hospital in LDN. Isn't it crazy that he has given such different advice to you?

On the permanent heart damage issue, my understanding is that symptoms do NOT necessarily mean permanent heart damage and everyone is different. Although i have symptoms all my heart measurements are currently within the normal limits. My cardiologist told me they would normally operate in 2 circumstances, when the measurements start becoming abnormal (enlarged heart, aorta etc.) OR when symptoms start degrading your living standards. The first instance is what, if not treated, will lead to permanent heart damage, not the 2nd if your heart is still compensating okay. I have had this verified by 2 other cardiologists that agreed. My next scan is in 1 month and I'm hoping my measurements will still be okay as although annoying, I can live with the symptoms for now and not ready for surgery yet - mainly because of health insurance.

If it were me I would seek 2nd and 3rd opinions before getting worried about stuff. My understanding is that symptoms usually only develop with severe regurge but you may find that another cardiologist tells you that you actually do have SR just like what happened to me.

 

[JeffM]

What would be of interest to me, all of us with BAVs, when did you start getting chest tension and/or dizzy symptoms, early on or late on?

Sorry I'm responding after such a delay. I sometimes don't check back on the forum for a couple weeks. I never developed either of those symptoms.

I'm sorry your experiencing those side effects from the Perindopril. And anxiety is a bear no matter the cause.

 

[kimcdougc]

Chritker,

I found out about 9 years ago I had BAV. No symptoms until about (6) months ago. My heart is normal in all respects. No blockages and no damage, even now that I am having symptoms. (shortness of breath, tightening of chest). After echo and angiogram showing now moderately severe I am having surgery on May 23, 2013. You will eventually learn to forget about your health problems most days. Living with the knowledge I would have to have surgery eventually wasn't too hard until the time was nigh. After almost (2) months of waiting...the time is here. Some days I am great emotionally, some days not. Today is a good day. This site has been the best research I have found after hours and hours of research. Have faith in yourself, God and your research and all will be well.

 

[Allisoninoz]

Hi from Melbourne. I had a ross procedure to fix my unicuspid aortic valve ... And rare anomalous left coronary artery! ...two years ago. Read all about it here ...
http://www.heraldsun.com.au/ipad/a-diary-of-open-heart-surgery/story-fn6bn9st-1226058541539
Just to drop something else in the mix ... I've recently learned I have kidney disease ... Nobody ever mentioned to me that years of heart probs and bp meds can lead to this problem ... I'm ok at the moment and hopefully will stay that way ... but if I had known of this potential health problem I prob would have asked for my surgery several years earlier.
You are fit and young and you will be fine. And by the time you need your op things may well have changed a lot.
But ask your doctors to be clear about other health risks of not having surgery sooner. It's a fine line for surgeons ... They don't operate when a patient is fine ... But you don't want to risk other things going wrong either. My surgeon was great ... Google him!

 

[Allisoninoz]

Actually it was my right coronary artery. Doh.