Question regarding heart failure

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Paleowoman

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According to the surgeon I saw yesterday, my bicuspid aortic valve area is very small (it's 0.9 cm/sq) and I could go "into heart failure" at any time, or even that my heart would "fail" - not sure if that means the same thing or something catastrophic ! So, until now and surgery (beginning January) does that mean I shuld severely limit what I do ? Ive already stopped weight lifting, but I normally like to walk a few miles most days - should I stop that too ? I should have asked the surgeon, I know, but I wasn't exactly thinking straight. I will ask my cardiologist when I see him on Thursday, but meanwhile, I'm wondering what regulars on here think.
 
Well my valve area is 1.1, and I've been told it will be a few years before I need an op. Heart failure sounds very scary, but if you look up the definition it basically means your heart not working as it should.

It really annoys me when these guys make statements like that, without a lucid explanation. You would've thought that after all those operations they'd find a way to express themselves without freaking people out unnecessarily.
 
Anne - I don't mean to alarm you, but he may be referring to sudden cardiac death, which is when the valve is so "tight" that the heart muscle can no longer overcome the resistance to blood flow and simply stops beating. That said, my valve was down to 0.9 or 0.8 cm2 just prior to surgery and I was told that cardio exercise, as tolerated, was fine. No weights and no activities having "high dynamic range" (where you go from stop to fast and back, repeatedly -- like tennis). It depends upon your general heart health and strength, I guess.

I would think that as long as your heart is strong and you have no other symptoms (afib, pvc, etc.), you can probably just live a calm, gentle life until surgery. If you have any specific questions, I would ask the surgeon.
 
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It really annoys me when these guys make statements like that, without a lucid explanation. You would've thought that after all those operations they'd find a way to express themselves without freaking people out unnecessarily.
I wonder if she said it that way to scare me into having the op sooner rather than later ? I'd wanted it around next Easter but she said my heart wouldn't last till then, nor till March is is another option I picked - really didn't want this op in winter.
 
Anne - I don't mean to alarm you, but he may be referring to sudden cardiac death, which is when the valve is so "tight" that the heart muscle can no longer overcome the resistance to blood flow and simply stops beating.
I think that's what she meant. But my ejection fraction is 79% - wouldn't that indicate that my heart is able to get the blood through no problem ? Or have I misunderstood ? I thought the ejection fraction was the percentage of blood that got through and that 79% is just above normal so there's a lot getting thorugh ? Also I'm small, my heart will be smaller than average, probably, so valve area size of 0.9 might not be so bad for me as it would for someone who is larger ?
 
If walking was dangerous, they would have told you. Steve's on the money. You also don't want to do any exercise or activity that makes you hold your breath.

The truth is they don't really know "when". Your valve gets worse with time but the rate of decline also increases, that's why they can't predict with accuracy.

My cardio said get it fixed within at least 3 months, the surgeon said within 6 months, I did it in 2 months. My cardio said you don't want it to get so bad that "you suffer the syndrome known as sudden death." He was not really scaring me, just telling the truth. Some quite young people have died from an undetected BAV. In one study I read, the youngest was 17.

After he took it out, the surgeon said it was worse than he thought it was..."it was shot." I had minimal symptoms and only one episode of dizziness and weakness. If your doctors say it's time, get your valved fixed soon.
 
Having the surgery date set will surely decrease your anxiety!
It seems you have choosen a female cardiac surgeon. In Argentina, and i guess it is similar in other countries, cardiac surgery is an speciallity with VERY few women!
 
I have the date set and my anxiety is increased - I feel like a lamb to the slaughter. The surgeon is a female yes. She's Professor Marjan Jahangiri - top cardiologist at St George's teaching hospital London. On the Society of Cardiothoracic Surgery website where they give statistics for the number and type of cardiac surgery with mortality rates for each surgeon she comes out best for aortic valve replacement and in particular with complex cases. Female surgeons are rare, it's much more difficult as medicine is a man's world, especially when getting to the top. I hope she lives up to her reputation....but, as I say, I feel like a lamb to the slaughter.
 
Oh Paleogirl - I SO wish I could give you a hug right now!!!! "lamb to the slaughter" is not a good image to have in your head - and not at all the truth!

You're going through this so that you can LIVE - a lot longer!!!!

Glad you have a January date set - the sooner you get this done, honestly the sooner you can heal - the sooner you'll be back living your life and not worrying about your heart!

My thoughts are with you!

Rachel
 
Heart failure is not an incident, like a heart attack, but a chronic condition, like arthritis or emphysema. Also, it seems to be very fuzzy in diagnosis. My cardio says that I am still in heart failure after my surgery, even though I'm down to 12% body fat, lifting weights 5 days a week, and preparing to run a 5K at the end of this month. Even at my worst, the right meds kept me feeling pretty good and helped to improve my heart function somewhat, despite having an aortic valve that was both stenotic and leaking. So, even though you probably don't want to wait longer than necessary, don't panic about the heart failure thing. You can measure LVEF, the mass of your heart, or its diameter, but what is most often referred to in assessing a heart failure patient's condition is NYHA Functional Classification, which classes patients according to how well they function. So you are, in a sense, as healthy as you feel.

So Anne, what do you feel up to doing? If you went for a run right now, would you feel alright? Does a good walk make you feel all out of breath? I know it gets said over and over but, listen to your body. Even a severely weakened heart benefits from some exercise, so don't stop unless either your body or your doctor tells you to. (And I wouldn't be surprised if your doctor tells you to listen to your body.)
 
Thank you Rachel. I think because I got information that is confusing - that things are more urgent than I had been led to believe by my cardiologist and other doctors who I know better and who know me better, that I'm feeling very much as though I'm at the mercy of the surgeon and team. I have so many other things wrong with me and I don't think they care too much as they are just thinking of their speciality, whereas I'm trying to keep everything together so that I come out the other side whole and well. I'll be seeing my other doctors this week which will help.
 
Like Steve, I was maybe 0.8 or 0.9 pre-surgery. I stayed away from 'straining' type workouts, kept up light aerobic exercise. The stat that really got my attention was "1% risk of sudden cardiac death each MONTH vs. less than 1% chance of not surviving surgery".

Yes - some of the Dr. comments are surely meant to shock us into action, especially those that feel well and can't believe we need surgery. (Been there - got the T-shirt).

Re - anxiety - the waiting is the worst. It got better for me as I got closer and could start doing some of the presurgery 'stuff' (preparing for trip etc.).
 
The date for the op is fixed - 3rd January.

Hi Paleogirl.

I just got a birthday wish in my inbox from this website for my Bicuspid Buddy, so I thought I'd come by and check this site out again to see how "Paleogirl" was doing. Lo and behold, I found many threads recently started by you and I wanted to wish you all the best in January and a speedy and successful recovery!

BTW, I agree with everything you said on the other thread about vitamin D and vitamin K.

What a wonderful website this is, and the people here are so supportive and encouraging.

I don't go on this site much anymore because it freaks out my Buddy. He says that when he has to deal with it, that's when he will deal with it. We're still in the waiting room with pressure gradient 25 mm/Hg, AVA 1.0, seeing a cardio every 2 years (with a second cardio opinion confirmation). We've been like that for the past 6 years.

Anyway, all the best to you!
 
So Anne, what do you feel up to doing? If you went for a run right now, would you feel alright? Does a good walk make you feel all out of breath? I know it gets said over and over but, listen to your body. Even a severely weakened heart benefits from some exercise, so don't stop unless either your body or your doctor tells you to. (And I wouldn't be surprised if your doctor tells you to listen to your body.)
I feel just the same as I did before the echo, before I was told I was being referred to a surgeon. I feel strong, full of energy, I don't get breathless ever, I love walking, I can walk for six or seven miles straight and feel energetic and not at all out of breath, I would love to do weight lifting but I know now not to. I listen to my body lots because I have so many other conditions to take care of too so I need to be in touch with my body.
 
I'm sorry to hear your news. You have always been a source of comfort and common sense and I'm sure this will prevail before long. I hope you can soon banish all thoughts of lambs and slaughterhouses from your mind.
I have spent many hours picking over the statistics on the website you mention - it sounds like you are in very capable hands. As luck would have it I have just had my yearly MRI at the Wellington Hospital in London and my aorta size remains stable. But my time will come. And I will be just as freaked as you are. Take comfort from all the people here who have come through with flying colours - a much better phrase than lambs and slaughterhouses!
 
Thanks Valdab. I hope your aorta stays stable. I saw my endocrinologist this evening and he wants my cardiac surgeon to change the date of surgery to a few days later than currently shcheduled (3rd Jan) to when he and my other consultants get back from their Christmas leave so that he'll be around...I have some very good doctors which is helping me banish those thoughts of lambs and slaughterhouses !
 
Thanks Valdab. I hope your aorta stays stable. I saw my endocrinologist this evening and he wants my cardiac surgeon to change the date of surgery to a few days later than currently shcheduled (3rd Jan) to when he and my other consultants get back from their Christmas leave so that he'll be around...I have some very good doctors which is helping me banish those thoughts of lambs and slaughterhouses !

Hi Anne,
That must make you a little more comforted, knowing that the Doctor who knows more about your other problems will be around, will it be up to your surgeon to make that decision or is your Endocrinologist liaising with her ? Deb x
 
Hi Anne,
That must make you a little more comforted, knowing that the Doctor who knows more about your other problems will be around, will it be up to your surgeon to make that decision or is your Endocrinologist liaising with her ? Deb x
Hi Deb, I'm seeing my cardiologist tomorrow morning and I'll let him know what the endo wants as they are colleagues, and I'm hoping the cardiologist will contact the surgeon and tell her that my consultants want/need to be around. To rescehdule the the surgery to a few days later shouldn't make any difference - of course it will be a nuisance to the surgeon but......hopefully she'll see the sense of this.....
Anne X
 
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