What symptoms to except?

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Hi. I am a 36 year old life-long heart patient with a bi-cuspid aortic valve (unoperated), moderate stenosis, a murmur, and a recently diagnosed ascending aorta aneurysm (4.0).

I have known my entire life that eventually I need to have open heart surgery and am fine with the six month monitoring, as I understand when my condition worsens they will operate. This news however is still shocking and I am afraid. My mother passed after her seventh heart attack and multiple other cardiac issues, but this never was on our radar before. Can anyone tell me what type of symptoms you experience? It would ease my mind greatly to know I am not alone.

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  • Posted

    Hi Kel60895

    Your definitely not alone I found out for my 30th birthday that I had Bicuspid Valve and aortic aneurysm up til that point was completely unaware month's later found out that my mum had Bicuspid Valve and also an aortic aneurysm. I had surgery to fix my aneurysm and valve replaced 16 week's ago and alI is going very well. My mum had the same surgery, same surgeon and same hospital 9 month's ago and again sailed through it. I understand your fear and worries I was petrified and I had 2 very young children at home but it's really not as bad as I had imagined. I am 33 fit and otherwise healthy and very active, my mum is 67 with other health problems but flew through her surgery. I had palpitations and little shortness of breath, we had heart problems in our family so I pushed for an echo but had known nothing of BAV or aneurysms so was all new to us. Do your research keep a positive outlook and a good sense of humour, you will be fine.

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    • Posted

      Hi Casey78882,

      Thank for replying and for sharing your story. I can't express how thankful I am that you responded.

      May I ask, as I have always had chest pain, how common was it for you to have palpitations as your condition worsened? I have a rib injury that causes me pain but it seems my left rib cage aches daily this week. My diagnosis was only a month ago, is still considered mild, and I imagine the palpitations are in part due to stress. However, I am not usually one to take extensive risks with my health either.

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    • Posted

      Hi Kel,

      I had bn having palpitations on and off for a while but when they started to get more frequent thats what made me worry and go to the doc of course they tried to blame it on anxiety and stress I even started to believe them coming home to my husband one day wondering was I really losing it. They'd give me tabs for indigestion and send me home I went back one day I had had enough and demanded an echo think they just referred me to shut me up! I never had chest pain could run any distance without problems but heart would be all over the place on going up the stairs my surgeon said that was my leaking valve. My aneurysm was at 4.5 on ct scan but my surgeon said when it was measured during surgery it was at 5 or 5.1. My aneurysm grew from 4.1 to 4.5 last year which got me my surgery. Had hoped for a valve repair but surgeon said I wouldn't get 6 year's out of it so decided on replacement. Stressing yourself def won't help you I know when I found out first I think I imagined every little ache and pain and just worried is that it but with time I put it to the back of my mind, had to or it would have bn hell for my hubby and kid's and it was the best thing.

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    • Posted

      Thanks again Casey smile

      Knowing the symptoms and how to differentiate them seems to be half the battle. I am glad to hear you were able to get your surgery, though it saddens me to know they did not replace your cable too. In my case, it will be a two-for-one deal but I know that they are reluctant to replace sometimes if you are young and the valve is pretty healthy. Mostly because even post surgery, it takes a lot of monitoring, etc. Best wishes to you and thank you again for sharing.

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    • Posted

      Thanks Kel,

      I got both my aneurysm and valve fixed up so everything taken care of will need my tissue valve replaced again at some point down the road but will cross that bridge when we comeget to it. All the best, :-)

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    • Posted

      All the best to you as well. My apologies... I misunderstood and freely admit, when tired, my comprehension skills decline. I misread "repaired" as "replaced" smile

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  • Posted

    Hi Kel, I am new to the forum and have been diagnosed with a TAA (Thoracic Aortic Aneurysym) for 4 years, size 4.6cm. Fortunately it has not grown over the last 4 years, despite my heavy weight lifting (I'm a former bodybuilder/power lifter, trying to get back in shape at 48) and once in a very blue moon cigar smoker.

    I had some related or non-related occurances of desperately fighting to catch my breath after 3 episodes of high adrenaline or (somewhat) vigorous activity....not the type after I brisk walk on treadmill/bike ride at 85-100 rpm for 20 minutes where I am a little winded...I'm talking I can't catch my breath fast enough, feel like I'm going to collapse and go into panic mode. Went to my original cardiologist a month ago, confirmed I have the TAA and am now taking precautions to not make it any worse - no more weight lifting, avoiding moving/pulling/lifting heavy objects as much as possible or getting help/using mechanisms (using a cart to move items as opposed to carrying them), cigar smoking has stopped altogether, and I am focusing now solely on cardio cardio cardio to drop excess bodyfat (I have a lot of lean muscle mass from 20+ years of natural bodybuilding but also accumulated bodyfat over the last 18 years).

    My wife has been a member of this forum for some time and turned me onto it. I have found nothing but supportive and understanding members on this forum with conditions similar to ours and have been providing their stories, feedback, advise and support. I encourage you to ask questions, express your feelings, research and provide us with anything you learn as well. 

    At first I was afraid (lol I accidentally almost started an I will survive sing-a-long), but in all seriousness I have accepted this and just have to keep it in my conscious mind that I need to be careful and not throw caution in the wind, but at the same time I am not going to live in fear. I have taken up scuba diving over the last 3 1/2 years, have over 75 dives logged and love this hobby. There are precautions I need to take with diving and am following them, have a trip coming up in 3 weeks in Cozumel. I am going to continue going out to dinner with my wife and children as well as my friends, always keeping in mind to stay away from salty foods (as they increase your blood pressure) and anything refined/sweets etc as I need to drop weight and adjust my blood levels (cholesterol, tryglicerides, HGL/LGL).....fine tuning this as I write this, plan on coming back here in a few months and talk about my weight loss progress. I pray to God I will be around long enough to see my children go to college, get married, start their families...but that is up to him. Whatever I can control, I will.

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    • Posted

      Hi ericg753. Thank you for your response. I tried to send a message but it is a bad tech day (user error, not technology errors). I saw your post actually about your condition, which is what inspired me to try too. I am scared, a little angry that this was overlooked (test results a year ago from an EKG showed some visual increase) and am trying to find that happy place of balancing the good over the fear. So far it is a bit rough going. I wasn't informed in a very professional manner... in fact they let my tests go well over two weeks before telling me the results. Thank you for sharing your optimism. I need to hear those kinds of things right now because I know it is easy to fall into despair instead. And for sharing your symptoms.

      I developed anxiety a few years ago after an unrelated medical crisis and have been born with a murmur, one of my biggest fears is I won't kniw what is happening is different than my "normal" palpitations. Thank you also for your support. I truly mean it.

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  • Posted

    Hi kel60895 ,

    I have had palpatations for several years, but my doctor told me it was nothing to worry about. That was when I was about 35. Now I'm 61. In January my heart started racing...not the regular palpatation sort of thing. Went to my doctor, he didn't hear anything, wore a 48 hour monitor, nothing was picked up.

    It took 3 trips to the Emergency department before someone finally sent me for an Echocardiogram. Originally they diagnosed me with Afib.

    The Echo identified my bicuspid valve (I have never heard of that before), and an aortic root aneurysm as well. It is 5.7cm ... or at least it was in March. 

    I have some chest pain, and like you, I am not certain when I need to get help, or when it's just "chest pain". I don't like being in this position, either.

    I have had an angiogram recently, and the good news is that I don't have any blockages in my arteries. The not so great news is that my aorta is twisted. I'm not sure where that puts me on the "risk" chart.

    The surgeon advised me it could be up to 5 months before surgery to replace my valve and my aorta. He did not consider me an "emergency". From what I can understand, because the blood tests I have had done don't indicate that my heart is failing, I am not an emergency. (Good or bad thing? I just want to have the surgery done so I can move forward with my life).

    There is heart problems on both sides of my family. The main issue being arteries that were blocked. I am grateful that isn't one of my problems.

    I was advised that the bicuspid valve runs in families, so I am having my sister, brothers, and children get checked. My grandchildre only need to be checked if their parent has the same valve issue.

    I understand your fear. It has made me call 911 and be transported to the hospital because I had all the symptoms of a heart attack. Not a heart attack, thankfully. It may have been my first real panic attack, though. 

    I found that over time, as I'm waiting for procedures to be done, my fear is not the first and last thing I think about every day. Yes, I still am afraid, but I am not letting that fear take hold of my life. I still want to enjoy the days before surgery, and I sure as heck want to enjoy the days after my surgery.

    Thinking of you. Be well. Deb

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    • Posted

      Thank you Deb. I have spoken to many people who have had the bi-cuspid replaced. Good news.... they often feel much better after. smile

      I come from a large family on my mother's side (about 100 people in the immediate relation category). Luckily I was the only one born with heart disease. My mother's medical situation was extensive, so my sibling and I both have chosen to take the proactive heart health route to try to lessen the genetic effects as much as possible.

      Perhaps that is why this came as such a shock... I have known my entire life that open heart was a strong possibility, but knowing it is looming close by doesn't feel all that fantastic. It isn't the surgery itself I fear as much as the not knowing what kind of timeline I am on.

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    • Posted

      I understand the not knowing. In reality, I guess no one really knows.

      The surgeons can do their best at trying to predict, but everyone is different. Not only that, but there are forces we can't control that also contribute to that time line.

      I hope it is a very long timeline for you.

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    • Posted

      Very true Deb.

      I hope the same for you...and if it is not a longtime line, may it come at a time that allows you a great path to healing and to feeling better.

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    • Posted

      Hi Deb,

      I had surgery on 13th for same thing aneurysm and bicuspid valve was leaking. My mum had same surgery last September only found out about it few week's before that. Her valve was critical she has high bp and diabetes but her new valve has given her a new life she was living with symptoms for years gradually getting worse but put it down to bn not fit. She really is a new woman and is only 67 her angio and all other tests came back clear. Her aneurysm was at 5 at surgery. Make sure you get family checked out who'd ever have thought mother and daughter heart surgery withinin 6 months of each other!! Wishing you all the best.

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    • Posted

      Thank you Casey. I am sorry but I must have missed your reply.

      I am still waiting for surgery date, and hoping it will be soon. My surgeon offerred to set up tests for my children, and just this week they have all agreed to let him do so. That makes me feel so much better. I know they are scared the test may show a problem, and I know the fear they will endure, however it is better to live with the fear, than not have that opportunity.

      Like your mom, I am not fit. I have struggled with being tired all the time, and no energy. It is too bad neither I or my doctor sensed there may be something we missed. Honestly, for the most part, I am quite healthy. I don't get ill very often (years between bouts of flu, and sometimes not even a cold in the winter). I am looking forward to seeing the difference after my surgery. I am 62.

      Enjoy your day. Deb

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  • Posted

    kel60895, thanks for sharing. I have TAA with PFO and ASA. No symptoms for me so far. Just fear. But remaining positive and hoping for slow growth of TAA and no blood clots. 
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