Just got the news: BAV (Age 40)

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pellicle

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PS: something I learned from a movie of a book that I liked was the following "chant" ... I find it valuable. There have been days in recent times where I just didn't want to move. Every challenge felt like a confrontation and every obstacle made me feel like giving up

It is by will alone I set my mind in motion.

every day I wanted to die, but I didn't ... I took my time and as I felt I could I faced each thing. I found that all I needed to do was present myself to a problem and the solution would present itself. Sometimes people would help me, sometimes I would find my own solution.

hope that helps your situation too
 

Fundy

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I just remembered that at the point anxiety was the worst for me, I was also prescribed cipralex. I took it for 30 days and it seemed to drastically reduce the painful affects of stress. And at that point just about anything was stressing me.
 

bobr33543

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Henry,

I am a 67 year old male. My AVR was 3 1/2 years ago. I have a 25mm Edwards tissue valve. In the weeks following the surgery I was very aware of my heartbeat, but that has resolved over time. I still have the awareness when I lie on my left side so I tend to fall asleep lying on my right side. I had none of this before the surgery so I cannot help you in that respect. But it seems that you are in constant fear of the surgery that you are most likely facing. Not even the best surgeon can guarantee a successful outcome, but I believe the success rate is nearly 99%. I was one of the 1% where the surgery was unsuccessful and had to have it redone 4 weeks later, so your odds just went up.

You have several other factors in your favor.
1) Your cardiologist did not initially find that you had a BAV because you have minimal calcifications and blood flow though the valve is near normal. I was much further along than you when my BAV was first detected and it took 13 years before surgery was recommended. Every case is different, but you may never need surgery in your lifetime.
2) There is a new technique being developed where the replacement valve is inserted intravenously. By the time you need a valve replacement, there is a good chance that open heart surgery will not be needed.

But the one thing working against you is your own anxiety. You are trying too hard to listen to your body and you fear the worst. It is very common for people over 40 to experience irregular heartbeats and this may or may not be caused by a BAV. There are many articles about PVCs and they are generally harmless but they can be a bit scary. Your cardiologist should put you on a drug that will help regulate your heartbeat.

The best advice I can give is to live your life and now worry about your valve. Get an echo every year or so and ask your dr. to explain the results to you. The dr. should advise you of where your numbers stand compared to when BAV is imminent. Request a copy of the echo results each time, compare them and you will be able to have a better grasp of where you stand.

Bob R
 

dissident

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I found my bicuspid valve with my own stethoscope and had to show the cardiologist where to put the stethoscope while I held my breath so he could hear the murmur. I am told I have moderate regurgitation with no stenosis as of last check.

Looking back it's clear I've had symptoms of it all my life.. I've always had little heart pains and have always been able to feel my heart beating.... I can feel it sitting here on the couch typing this message. It has gradually worsened over time to the point where it seems like I can barely do 8.5 minute miles now before I start getting pains and random shortness of breath while jogging. My body seems to tolerate road biking much better as I'm not totally upright and am in a more compact position.

Your story about barely being able to do 8.5 minute miles has made me feel better though I don't know why you'd have such poor aerobic capacity if you don't have any regurgitation and everything supposedly looks fine.

Part of me thinks there might be a blockage due to my poor diet but there's no family history despite having overweight relatives who lived into their 80's with no heart problems and plus I had a CT scan done with dye using a 320 slice scanner back in very late 2013 which showed everything to be perfect there and the calcium scan I did a year prior to that showed a score of 0.7 which is fine.

Frankly I wish they'd just give me the artificial valve now instead of making me wait... assuming it's the valve and regurgitation causing my symptoms and not a blockage it's affecting my life and can't be good for my heart to have to beat at such a high heartrate just to circulate the blood while exercising. I typically hit around 170-180 BPM without even being what I would call "winded" and can shoot above 200 without substantial amounts of effort. I can't go at the pace I would like because the pain begins to build in random areas particularly in my arms and if I don't let off on the pace I'll start to get short of breath.

Meanwhile I've recorded heart rates as low as 40BPM while laying in bed relaxed... my heart seems to like to swing around wildly in it's BPM depending on my activity level.
 

carl1978

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Hi Henry,

Its so nice to read your post and to hear someone is feeling the same way i do. I thought i would share my experience with BAV and hope it helps you deal with the situation.

Up until the age of 32 I never had any real issues with my health. I was a keen mountain biker and reasonably fit. After returning home from a three day mountain bike trip one weekend i was laying on the sofa and started to feel my heart beating quite hard. The next day at work i was sitting at my desk and noticed the heartbeat again. So i googled it and thought I was having a heart attack! So i went straight to ER, they checked me over ECG etc and all was fine. I could still feel the problem though and two days later i went to see my doctor. He took my BP and it was high so he put me on Lizinopril. I left the doctors putting the heartbeat feeling down to the high blood pressure.

After a couple of months i went back to the doctors complaining about my symptoms. He sent me for a chest X-ray, ECG and blood test. All came back fine. So he put the heartbeat feeling down to anxiety. A year later i started getting palpatations which seemed to come on after eating. So the doctor fitted me with a 24Hr Holter Monitor. All came back fine. Six months later i went back and had the same monitor fitted. All was OK. I started to think is this all in my head? So I carried on with life until the night before my wedding when i ended up in ER and thought I was having a heart attack. I had dizzy spells, palps and sweating. They done all the tests on me they could and all was OK but they suspected I had GERD which can cause palatations. So they sent me home with anti acid drugs. I got married the next day and all was fine.

A year or so later after having our first baby I was still having palps and started getting breathless doing simple things like climbing stairs and didint have as much energy as normal. I had another ECG test and blood work and all was fine so my doctor said the only other thing they could do is send me for an echo. So I accepted. I went for the Echo and during the scan the doctor said 'oh it seems you have only two leaflets at on your AV'. I almost fainted in shock. Then he said I have to wait three days for him to examine the pictures he had taken. Three days later my doctor explained to me that I MAY have and BAV but that everything in my heart is functioning normally and no other action was necessary. To this day I still have trouble accepting that!

Now I have Palps daily and can feel my heart beat most of the time. I also have times where I am breathless and a bit dizzy. Eating large meals seems to make things worse for me, I think this is because my body is busy digesting food so taking up some of my limited blood supply.

The things i can say definatly help me are exercise. After going out on my bike sometimes my symptoms completely subside for a day or so. Also if I have a glass of red wine in the evening, the next day I feel alot better. Also I went to see a councilor which helped my deal with my anxiety. I would strongly recommend this. I still believe alot of my symptoms are in my head and I now focus too much on my normal body sensations. This site is brilliant but there is alot of info out there that just scares the living daylights out of me. When first researching this condition I thought my days are numbered and i needed an operation ASAP. That is not the case. You may have symptoms but this does not mean you need to go under the knife. Just enjoy what life you have and just remember that you dont have to have BAV to have heart problems at 40. Also as you can tell by most of the posts on this site, This problem is treatable and most of the time very successfully. You are OK Henry.
 

almost_hectic

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Hi Carl, glad to hear you finally got it figured out. Hearing the tales of you doctors course of action and advice scares the hell out of me. During all that time they never sent you to a cardiologist to do a full work up of your heart? That sounds crazy! I was in your boat with many if not all the same symptoms but after my first visit to the ER I was sent to a cardiologist who did several test and exams to get a complete picture of the condition of my heart and they found my faulty valve rather quickly, not years later like your story. Didnt change much as it was quite a while before anything needed to be done, but there was comfort in the knowledge of what was wrong with me, scary yes, but comforting to know what was going on. That all started 15 years ago, and now Im recovering from surgery for a mechanical valve replacment just 4 weeks ago. Stay on top of your condition and do not fear surgery, it will actually be a great step in improving your quality of life so do not put it off when the time comes. Best of everything to you!
 

carl1978

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My doctor told me that my valve condition at present in no concern to them. So the function of my valve is normal. He said that he would sen me for another echo in three years time to check the everything was still OK.

I do get symptoms from having BAV. I'm certain of that. But also I know now that anxiety worsens the symptoms. As i said before I would strongly recommend counselling if you are having trouble coming to terms with having this condition. This improved my quality of life and my symptoms did subside.

What is strange is that I have already had three major operations in my life and during this my BAV was not detected. Also just look at the size of Arnold Schwarzenegger. BAV didnt stop him.
 

dissident

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I have had anxiety in the past but none really this summer... the symptoms are pretty predictable.. they come on when jogging if I exceed a certain pace which seems to be very gradually worsening.. and if I exceed that page once symptomatic and continue to push it I'll pay for it by having the symptoms linger at rest for a day or three before subsiding... I need to back off when noticing the symptoms until they subside. They will also come on randomly if I attempt to lift weights. Road biking never brings them on so far.

Having jogged my entire adult life and living in an area where roads are in mile squares I'm quite familiar with what I used to be able to jog in a mile and what I can do now.

I have a fairly strong bounding pulse that I can pretty much feel 24/7 but not to the point where my head is bobbing. I've had this all my adult life again slightly worsening over time. I think when I get my yearly echo I'll try a second opinion at another place, perhaps make the drive to Mayo Clinic on Rochester and get an echo there which is only about 3ish hours.

I'll take your advice about reducing anxiety improving symptoms to heart. I've also modified my diet to a blood pressure reducing diet greatly reducing the amount of processed carbs I eat. Along with that I'm going to log what I eat, how much water I drink, how many minutes per mile I can go before symptoms occur, and get a heartrate monitor to track my heart rate in minutes per mile to track my aerobic endurance over time as well. This data should prove useful.
 

almost_hectic

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dissident;n858240 said:
I have had anxiety in the past but none really this summer... the symptoms are pretty predictable.. they come on when jogging if I exceed a certain pace which seems to be very gradually worsening.. and if I exceed that page once symptomatic and continue to push it I'll pay for it by having the symptoms linger at rest for a day or three before subsiding... I need to back off when noticing the symptoms until they subside. They will also come on randomly if I attempt to lift weights. Road biking never brings them on so far.

Having jogged my entire adult life and living in an area where roads are in mile squares I'm quite familiar with what I used to be able to jog in a mile and what I can do now.

I have a fairly strong bounding pulse that I can pretty much feel 24/7 but not to the point where my head is bobbing. I've had this all my adult life again slightly worsening over time. I think when I get my yearly echo I'll try a second opinion at another place, perhaps make the drive to Mayo Clinic on Rochester and get an echo there which is only about 3ish hours.

I'll take your advice about reducing anxiety improving symptoms to heart. I've also modified my diet to a blood pressure reducing diet greatly reducing the amount of processed carbs I eat. Along with that I'm going to log what I eat, how much water I drink, how many minutes per mile I can go before symptoms occur, and get a heartrate monitor to track my heart rate in minutes per mile to track my aerobic endurance over time as well. This data should prove useful.
I strongly suggest the second opinion route. My previous cardiologist read my echo in April and said I was likely a year or two away from needing valve replacement surgery. I sought a second opinion and was told yes, I would be needing surgery but mor like in a month or two!! Well I had surgery 1 month ago. Surgeon said I was very lucky I got in there when I did, he actually said I was a walking time bomb. And I had no symptoms! If I had gone ahead with the original cardiologists opinion I might not have lived long enough to make it to surgery. As I found out once the valve starts to fail it can progress rather quickly and needs to be monitored closely before you get in the danger zone.
 

carl1978

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You guys are scaring me! I'm starting to get really worries now. I have symptoms all the time and when I speak to my doctor she says its nothing to be concerned about. I'm going to make another appointment and demand another echo. I too have a strong boning pulse which moves my abdomen up and down when laying down and sometime i can feel it rocking my body. I also get breathless all the time and I am lacking in energy. I avoid things like stairs now because they make me so out of breath.

Does anyone from the UK know if the is anyone apart from your GP you can contact about the condition and give you advice?
 

almost_hectic

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carl1978;n858250 said:
You guys are scaring me! I'm starting to get really worries now. I have symptoms all the time and when I speak to my doctor she says its nothing to be concerned about. I'm going to make another appointment and demand another echo. I too have a strong boning pulse which moves my abdomen up and down when laying down and sometime i can feel it rocking my body. I also get breathless all the time and I am lacking in energy. I avoid things like stairs now because they make me so out of breath.

Does anyone from the UK know if the is anyone apart from your GP you can contact about the condition and give you advice?
My intent wasn't to scare you so if I did I apologize. I was merely pointing out my experience and to suggest if possible to get a second opinion, for anyone in this situation. Even if not, 3 years seems like an awfully long time to wait to be seen again if your experiencing that many symptoms regularly.
 

ALLBETTERNOW!

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HenryCT;n856196 said:
Thanks for the response Anne! Glad to hear that you were able to ride it out for so long and that your surgery sounded successful.

I think if I had no symptoms and a doctor just heard a murmur I might think all was well. The fact that symptoms around my chest area drove me to see a doctor and a cardiologist, and then I asked for a second opinion because I was still feeling things - at which point they found BAV, has me concerned about what else they may have missed.

They may also feel I have some minor stenosis and regurgitation but for now are just telling me "you are fine" to keep my mind off of things. I can appreciate that, as long as I don't keep over and leave my kids without a dad :)

I know I have BAV, and I know I have some level of anxiety. Just hard for me to tell where they overlap since the anxiety - also known as the great mimic - may be what's causing the symptoms.
Anxiety is perfectly normal and understandable (My typing usually isnt so please bear with me). I was born with a BAV. Followed by a cardiologist as a kid, did 4 HS sports played College Soccer but could never run distances well for training. Cardiologist said no worries maybe when you are 50 or 60 we will have to do something for now we just watch it once a year. I think we will have pig or cow valves by then but we will see. Life goes on, get married, moved away, go to college and law school, start a job, have kids, no time for follow up with a new cardiologist - hey I am a man right.... I stay somewhat fit until my late 40's coaching sports, playing in an over 40 soccer league and doing almost nightly walks with my wife. May of 2104, at 49 I have a stroke out of nowhere caused by AFIB they say. In the course of the work up Echo, they see a 4.9 cm aortic aneurysm and my bicuspid valve. In a strange way having the stroke probably saved my life or we would have never known about the aneurysm. What to? They want me to wait until that aneurysm gets to be 5.0+ but my anxiety level that it will just rupture skyrockets. I will need surgery anyway to fix it and to deal with the BAV (mildly stenotic as per the echo) so in May 2015 at my insistence, I have OHS and they repair the aorta and I get a new tissue valve and a Maze procedure for the AFIB, tough choice on which kind of valve but I only had 24 hours to make up my mind so I relied heavily on my surgeons advice. . Luckily no CABG required they looked good on the catherization, except 1 with a 40% occlusion the don't seem to concerned about but the valve gradient is worse then the echo showed, while they are in there repair that aorta they want to replace the valve - make sense, rignt? Turns out my wife also has a BAV (watch surgeons eyes gt very wide...) but our kids seem to have dodged it!!. During all this my wife is diagnosed with a treatable AVM, less than 1% of the population, what are the odds.... Needless to say the financial and emotional drain and stress is incredible but we soldier on to fix what we can. I have the surgery and now 4-5 months later it all seems so distant. Just had a post op echo and thy say it l looked normal, BP and lipids are good, Cardio rehab is going well and I'm trying to look forward though I worry about everything now (wonder why? ha).

Point is try not to worry - you will get thru this!!! If it is AFIB (have they told you that is what it is?) they have drugs like Elliquis and Xarelto to prevent a stroke and also have the Maze procedure or ablation to help get it under control and some drugs for that to! It sucks but its all fixable, albeit with OHS which you will do well with I am sure. It wasnt fun but wasnt too bad either. Best of luck!
 
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HenryCT

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Hey all, just wanted to check in with some updates, some good and some not as good.

For starters, I'm still here! :)

Months ago I started on clomid - in an attempt to raise super low testosterone. Again, I don't know if the T is low because I'm just going through andropause, or if prolonged anxiety has driven it down, or my weight makes me "efficient aromataser" which means my extra body fat is very efficient at converting T to Estrogen (which tells your brain to stop making T).

The clomid tells your brain to ignore the estrogen and keep making T. So when I first started taking it, I wasn't seeing much improvement and was still having bad anxiety, chesty pressure and pains, and of course I feared my BAV was in bad shape. But, lo and behold after 6 weeks or so of the dose I started feeling better. At a certain point I felt great, my anxiety was gone and my heart palps and strong beats all went away entirely, for a good 2 months! I was enjoying my gym workouts and feeling better all around. We tested my T level and it has gone up to 800 (from 200, with 300 being considered low and 1000 the top). Unfortunately my estradiol (estrogen) levels also went up and were at 60 (recommended under 30 for me). Clearly I was "hormonal" :)

When all seemed right in the world, I came down with another first: prostatitis. Yikes, I had never even heard of this! Painful, terrible, debilitating. I cut way down on my clomid dose because I read that T therapy can cause prostatitis. Being my hypochondriac self, I assumed I had prostate cancer ... But my PSA was normal and my prostate, while enlarged, was only mildly so. I was given antibiotics to take but warned its a slow recovery. They were right, for weeks the pain persisted and I didn't feel better. All the while my clomid dose I had cut.

Then on a Saturday morning I had the arrhythmia thing again. Skipping beats, coming and going, a little light headedness, panic. This lasted for more than a minute and persisted for 10 or so minutes so wife and I panicked and went to the ER. I was afraid maybe this was afib? How would I be able to tell?

At the ER all tests came back fine. Blood work and ekg and all. I felt better. While there, a coincidence, my cardiologist was at the hospital. He came by. He sort of scolded me, told me I was fine (he had just done my echo a few months prior). It was probably just anxiety from the prostatitis. I told him it might be anxiety from the plummeting T since I cut my clomid dose down. He said get off the clomid, it was for old people.

When I spoke to my endocrinologist she said get back on the clomid and that wasn't the cause of the prostatitis.

So I went back on full dose and after a while the prostatitis was healing and so was the anxiety.

In November my wife and I went to a company sponsored trip to Miami. Needless to say, I didn't behave. Had a great time but drank 4 days in a row. Mid day drinks, one night lots of wine, another night lots of vodka, etc. was a huge party all weekend.

Came home and was hit hard with anxiety attacks. Felt terrible. Ate clean and improved enough where last Saturday i went to the gym. I did 25 minutes of weights and then 25 minutes of cardio. Some rowing, biking, elliptical.

Felt awesome after that, but that night my heart area was sore. I felt pressure. This worsened the next day and was coming and going. It felt like pulled muscles inside my chest around heart area. Also felt pressure at times in collarbone area and base of neck, and sometimes below the sternum near stomach. This went on for days.

Go to the ER again? How can I? My wife thinks it's all in my head (she was there when my cardiologist scolded me for going to ER and said my heart was fine). So I just ignore the pain and pressure and anxiety.

The good news is that for the last 2-3 days I have felt better each day. Not 100 percent but the chest pressure is reducing a lot. Is it a bad sign and my heart is straining - or is my anxiety causing this chest pain and the clomid and raising T levels are making me feel better?

I went back to gym today.
Tried to go easier. 20 mins of lighter weights. 20 mins of lighter cardio (walking and elliptical). But I feel like an old bag taking it this easy. I'm 41, not 65.

My cardiologist told me in June he wanted me to try a stress echo sometime in 2016. He said maybe February. Man, I feel like that is years away. I felt better when he told me I was fine but it doesn't take my mind long to drift to "what if". I would like to do the stress echo tomorrow!

So I am hanging in there, dealing with the BAV fears and the low T issue and the anxiety and not knowing which is causing which other if at all. And I also worry my mid 30s cardiologist, despite being accomplished and charismatic, is missing something. How many BAV patients has he really dealt with? 3? 30?

Thanks for listening and the advice before this. It's all been so helpful to not feel alone.
 

Zoltania

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HenryCT;n860888 said:
Felt awesome after that, but that night my heart area was sore. I felt pressure. This worsened the next day and was coming and going. It felt like pulled muscles inside my chest around heart area. Also felt pressure at times in collarbone area and base of neck, and sometimes below the sternum near stomach. This went on for days.
Any chance this is due to reflux? That would explain the moving and changing nature of the pain.
 

HenryCT

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Zoltania;n860899 said:
Any chance this is due to reflux? That would explain the moving and changing nature of the pain.
Hey thanks for the reply. I've certainly considered it may just be reflux and man would I be happy if it was. Same with it just being anxiety.

I've always heard with reflux there are multiple symptoms. When I have had this, it doesn't seem to cause any burning sensations at all. No sour taste in mouth or breath. No nausea. Feel fine aside from what feels like pulled muscles, but deep inside.

I can sometimes feel the soreness if I twist my neck, or take a deep breath. This makes me think skeletal muscle and NOT a heart thing - but the feeing of pressure (like there isn't enough blood getting to my head) I feel in the upper chest or lower neck is odd.

I've also noticed that when I get up from a couch I have been on for a bit and go up stairs or quickly walk to bathroom I am aware of my heart pounding, like the blood is thick. Heart rate will go from the relaxed 60s to 80s, or 100 with stairs. But I feel this is likely normal?

I also feel my heart pounding (thumping - not fast) after alcohol. It is now 10:23 and I had 2 glasses of wine with dinner at 6. By 9 I could feel the thumping. This is despite 3 pints of water to help avoid dehydration. I should read up on alcohol and BAV - not sure if it's a major issue.
 

Zoltania

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HenryCT;n860900 said:
I've always heard with reflux there are multiple symptoms. When I have had this, it doesn't seem to cause any burning sensations at all. No sour taste in mouth or breath. No nausea. Feel fine aside from what feels like pulled muscles, but deep inside.
I have been experiencing reflux (according to both my internist and an ENT) and I don't have burning sensations or a sour taste either. For a while I felt tightness when I swallowed, and I've also had the strange migratory chest discomfort. That's why I suggested reflux as a possibility for you.

I can sometimes feel the soreness if I twist my neck, or take a deep breath. This makes me think skeletal muscle and NOT a heart thing - but the feeing of pressure (like there isn't enough blood getting to my head) I feel in the upper chest or lower neck is odd.
Obviously the people to ask are your doctors, but it seems very easy if you have a heart problem to imagine the worst with each little muscular twinge. I wrote about this a bit in my posting about "Recovery: the second three months." My hope is that this reaction will fade over time for me, especially as I continue to get stronger.

I've also noticed that when I get up from a couch I have been on for a bit and go up stairs or quickly walk to bathroom I am aware of my heart pounding, like the blood is thick. Heart rate will go from the relaxed 60s to 80s, or 100 with stairs. But I feel this is likely normal?
Sounds pretty normal to me. It's easy to freak out about one's pulse rate. Mine never seems to go below about 78, and usually it's 90 these days. I tried working out on the elliptical trainer at the gym and got my heart rate up to 150 at what felt like a moderate level of effort; I think I'm just deconditioned from having only been doing fast walking on the level for so long. Sorry that you're feeling so anxious at this point; hopefully this will fade over time for you too.
 

Paleowoman

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Zoltania;n860912 said:
I have been experiencing reflux (according to both my internist and an ENT) and I don't have burning sensations or a sour taste either.
I hope you've had tests such as barium swallow or endoscopy to confirm that. The reason I say that is that a few years ago a respiratory specialist I was referred to about cough said I was getting reflux which I wasn't aware of, he said people can get it without realising and that it can cause problems. I'm sure he said that because reflux is a common cause of cough - he hadn't done any tests. He prescribed Omeprazole, a PPI. I refused to take the Omeprazole, for various reasons, one being that I don't think it's a good idea to prescribe medications when it's not certain that the person has the condition for which the med is prescribed, especially such medications as interfere substantially with the digestive system. I then found a previous CT angiogram which showed an incidental finding of post inflammatory changes in my lung fields and took it to the respiratory guy who imediately saw I had all the signs of Small Airways Disease after which I got the appropriate medication (preventer inhaler for my lungs). I just think it's frightening that some doctors say a person has a particular condition without proper testing - not that I'm saying your docs did that Zoltania, but just making sure !
 

HenryCT

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I'd like your advice on choosing a doctor.

I am in CT, and I chose a doctor that was local to me. The agency is Cardio Physicians of Fairfield County (http://cpfccardiology.com/). My current Dr. is Dr. Tiano. Originally I had seen Dr. Kosinsky, because he is my father's cardiologist. He was very pleasant and calmed me down a bit, but he failed to diagnose me correctly (he never did an echo, so he never knew I had BAV). After symptoms persisted, my GP recommended another doctor in the same firm (Tiano), because he specialized in electrical signals of the heart and I had been having palpitations/skipped beats at times. He ran me through the same tests, and also missed the BAV. It was only when I came back a third time and basically begged for an echo (to be sure), at which point they found it.

Some thoughts on current doctor:

- He's fairly young (38, I am 41).
- He's very charismatic, and very "don't worry about it" in terms of personality.
- He said my BAV is "fine", everything looked normal. But we never discussed any numbers
- He said "no limitations" on what I can do. Is that wise for a BAV?
- He said come back for an echo in 6 months. Initially I thought nothing of that, but is that the standard time for someone who has "no issues"?

Lastly, and I can ask him this the next time I see him, but how much experience with BAV does he have? I'd have to guess not that much? I don't think it's his area of specialization.

This leads me to my next question(s):

- Does anyone have a BAV specialist they recommend near CT?
- Am I better off driving out to the Cleveland Clinic, finding a doctor there?

Thanks

I know Pellicle just blasted me a bit about not being able to control my own destiny and the illusion of control, but I only half agree with that. I do believe I have no control over my genetic make-up, and that *stuff* happens, but I do think that we can still make choices that affect our health and longevity (ranging from diet, to heart doctor selection). As I mentioned, I'll take what comes, but I want to be sure I am not being negligent, or working with a doctor who may be.

Thanks again!
 

DachsieMom

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CT
HenryCT, I am also in CT. My surgeon was Dr. elefteriades from Yale. He is amazing. Yale has an aortic institute, so they are specialists with aneurysms and aortic valve issues. Perhaps send Dr. E an email and ask for a consult, or a recommendation for a cardio?
-dachsiemom; surgery at 41 - St. Jude valve conduit.
 

aweunited

Member
Joined
Dec 2, 2015
Messages
6
Location
Ballston Lake, NY
I don't know much about BAV, I had a repair for Marfan Syndrome at the Cleveland Clinic last month. Great Doctors and a really good experience overall; however, the 7-10 hour drive back home to New York would have been a nightmare but my parents (from the other side of Ohio) came with us to help drive. More importantly, I wish I would have had more time to decide where I wanted to go for surgery. http://www.brighamandwomens.org/Departments_and_Services/surgery/services/cardiacsurgery/Services/valvecenter.aspx in Boston might have been a better choice for our family since it is so much closer for us. Alas, I had a short time to decide, and we went with Cleveland since it was closer to my parents. I did notice looking at the two websites that Cleveland does a lot more AVRs than Boston, but they both do a lot relatively speaking.
 
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