Interesting Visit - Help appreciated!

[breakingwave]

Well I come back to visit after being away for a while, I was in complete denial and the details of raising my three granchildren while my husband traveled for work help with the deception. This past couple of years finally caught up with me and as I dragged my new symtoms body back to my GP I knew some of what lay ahead. I hadn't had an echo for a couple of years ( yes, I was even slippery at ignorning the all important echo, last done in 2009) and of course my GP more than slightly irrated with me ordered one along with blood work pronto.

At that time my aortic root was 3.27 gradient across the valve 70, a mean of 40-45 and some thickening of the mitral valve. Noted as severe aortic stenosis, and mild mitral stenosis. Up to Present echo: aortic root 3.1 cm, lvpwd 1.6, ivsd 1.8,aortic valve significantly sclerotic with severe stenosis, peak velocity of 4m/sec and valve are of .092 cm squared. significant mitral valve annular calcification, Moderately increased wall thickness with moderate concentric left ventricular hypertrophy.

Anyway, my first cardio was not my favorite guy, he was really rude and told me he wouldn't even think of operating until I lost 50 lbs. I am 250 lbs so yes I am heavy. this time a new doctor who seemed really nice but after I came away I thought to myself I actually gained nothing from the visit. First off I have no clue what or how my heart relates to good or really bad except the word severe can't be good I figure. I have tried to learn from your posts and the glossary but still at a lost as how to put it all together to have any idea if I should be thinking of talking to a surgeon. This doctor said we'll just keep a watch, echo in six months and no chance on any of the medications that were prescribed about 5 years ago.

My question is am I still existing in a fools paradise, should I research other cardio docs or am I making too much of something in my mind. One of the only things focused on was talking about the clincial trials if a tabor ( most likely not spelled correctly) procedure which was non invasive and not approved but for people who weren't able to get a regular open heart procedure. I could really use some advice and help as I really don't know if I am in trouble or not, and I would like to finish raising my grand kids before something happens I won't be able to do something about. Would you see another doctor if this was your situation. Thank you in advance, I don't even know what I should be asking.

My husband who went along was more than happy to hear no problem lets just wait and see but I feel I have had more breathing issues lately and a harder time walking, which I think is my body telling me this might not wait forever or 6 months?

 

[drivetopless]

Welcome back, BW.

Your doctor's have the best input for you on your surgery, but you should definitely seek someone you trust but who is kind. Just make sure you are not still in denial. Your weight and current health is definitely a factor on how the surgery goes. I can tell you that I had surgery at similar weight as yours. I was worried because I was almost off the chart for BMI because I'm short. No one made me lose weight before surgery, but they did explain that the valve I received is sized for someone with a normal BMI and that to optimize it's performance I need to lose which I am working on post surgery (with success). I had no other health issues and was very mobile/strong, so that may be why my weight wasn't a big concern for surgery.

You gave your reading as "at that time." Is that recently or 2009? If 2009, what are your readings today? That will tell you a lot. Typically when things start to change, they tend to get worse very quickly.

 

[Lynlw]

Hi Sorry if i'm reading this wrong, from your first sentnce it eems like you were a member before, if you were do you remeber your user name it might help to read older posts.
Where have you gone to see Cardiologists, York or elswhere? It seems like you have alot more questons, I probably would call his office and tel them you are a little confused and can someone help you understand things a little better. often a nurse or maybe resident if it is a teaching hospital can help.
I proabbly would get an opinion from a surgeon now, it certainly couldnt hurt. I'm not sure what trials you are talking about, MAYBE they said TAVI, which is getting an Aortic valve replaced by cath, but thats just the closest thing i could thin of that might sound like Tabor. Beside being a little over weight, do you have any other medical conditions that would make heart surgery riskier?
Good luck with everything. Keep us updated how things are going

 

[breakingwave]

Welcome back, BW.

Your doctor's have the best input for you on your surgery, but you should definitely seek someone you trust but who is kind. Just make sure you are not still in denial. Your weight and current health is definitely a factor on how the surgery goes. I can tell you that I had surgery at similar weight as yours. I was worried because I was almost off the chart for BMI because I'm short. No one made me lose weight before surgery, but they did explain that the valve I received is sized for someone with a normal BMI and that to optimize it's performance I need to lose which I am working on post surgery (with success). I had no other health issues and was very mobile/strong, so that may be why my weight wasn't a big concern for surgery.

You gave your reading as "at that time." Is that recently or 2009? If 2009, what are your readings today? That will tell you a lot. Typically when things start to change, they tend to get worse very quickly.

Thank you for responding. The first set of measurements was in 2009, the last time I had an echo, the next set was just a couple of weeks ago. I am also short so my BMI is also off the charts. I think most of my health issues are related to the heart, I have gout and alot of difficulty with walking, stairs are a great problem and just recently found that really low on Vitamin D which I am working on with prescribed supplements. Probably alot of the reason for walking difficulties as well. I am not as mobile which really works against my losing weight.

 

[breakingwave]

Hi Sorry if i'm reading this wrong, from your first sentnce it eems like you were a member before, if you were do you remeber your user name it might help to read older posts.
Where have you gone to see Cardiologists, York or elswhere? It seems like you have alot more questons, I probably would call his office and tel them you are a little confused and can someone help you understand things a little better. often a nurse or maybe resident if it is a teaching hospital can help.
I proabbly would get an opinion from a surgeon now, it certainly couldnt hurt. I'm not sure what trials you are talking about, MAYBE they said TAVI, which is getting an Aortic valve replaced by cath, but thats just the closest thing i could thin of that might sound like Tabor. Beside being a little over weight, do you have any other medical conditions that would make heart surgery riskier?
Good luck with everything. Keep us updated how things are going

Thank you! I am going to research the TAVI to see if that sounds like what he was talking about. This is a new doctor for me, seemed very nnice, but leas with this discussion of this procedure and lost me right away. I am so not good with conversations and doctors and didn't ask any of the questions I should have asked, so now I am trying to make sense with the echo results so I can get clear for myself what questions should be asked for my case in particular.

 

[normofthenorth]

I read the numbers in the first post

At that time my aortic root was 3.27 gradient across the valve 70, a mean of 40-45 and some thickening of the mitral valve. Noted as severe aortic stenosis, and mild mitral stenosis. Up to Present echo: aortic root 3.1 cm, lvpwd 1.6, ivsd 1.8,aortic valve significantly sclerotic with severe stenosis, peak velocity of 4m/sec and valve are of .092 cm squared. significant mitral valve annular calcification, Moderately increased wall thickness with moderate concentric left ventricular hypertrophy.

to mean that BW's readings in 2009 were: aortic root =3.27, gradient across the (Aortic) valve = 70, a mean of 40-45(?) and some thickening of the mitral valve. Noted as severe aortic stenosis, and mild mitral stenosis.
And that BW's recent readings are: aortic root = 3.1 cm, lvpwd = 1.6, ivsd = 1.8, peak velocity (across AV) = 4m/sec and (aortic) valve are[a] = .092 cm squared [= 0.92 cm squared?]. (Noted as) aortic valve significantly sclerotic with severe stenosis, significant mitral valve annular calcification, Moderately increased wall thickness with moderate concentric left ventricular hypertrophy.

My casual non-professional reading suggests that your Aorta and Aortic root are OK, but your Aortic Valve is in bad shape and ripe for replacement. I'm not sure what to make of the description of your Mitral valve.

As others have suggested, you should NOT respond with denial, and you SHOULD proceed with a Cardiologist who will deal with you as a dedicated professional and a decent human being. And you should probably ask that Cardiologist to refer you to a Cardiac Surgeon, and also to answer a bunch of your questions or refer you to somebody who can. Among the bottom-line questions your Cardiologist should answer clearly is "What happens next?", "What should I do?", etc. And explaining your diagnosis, not just giving you some numbers.

I believe the standard guideline for AV replacement due to stenosis is something close to an effective area of 1 cm squared, and yours is already lower (though I think 0.095 is incredible, so I assume it's really 0.95), so I think most experts would be steering you in the direction of a surgical replacement.

BTW, there are charts and formulas that convert blood velocity to pressure gradient and valve effective area. Your readings are a combo of the three, and it might make the picture clearer if they were all converted into "apples" and not "oranges". (IIRC, the echo cardiogram only measures velocity, and the technicians and Cardiologists use the charts and formulas to calculate the other two.)

As Lyn implied, you may be an OK candidate for open-heart surgery (like most of us here have had already or will have soon), which would almost surely mean that researching TAVI would just be a distraction or a delay, since it's still only being used in the US for patients who are NOT candidates for conventional surgery. That may change in a few years, based on studies that are presently ongoing, but I'm guessing that you shouldn't wait that long.

Do educate yourself here and elsewhere on your own, but I wouldn't delay getting some answers from my Cardiologist -- or another one if you feel you have to switch.

 

[Ovie]

IMO you continue to find a cardiologist who can explain to you WHAT IS GOING ON, you need to walk out knowing what is going on. I will say, even if you find a blunt, very straight forward kind of Cardiologis, as long as he explains everything, you shouldn't be too picky. Some of the best Doctors out there are sometimes the biggest <earmuffs>, but they know what they're doing. Hopefully you get both a kind, but informative response. Good luck!

 

[breakingwave]

I read the numbers in the first post
to mean that BW's readings in 2009 were: aortic root =3.27, gradient across the (Aortic) valve = 70, a mean of 40-45(?) and some thickening of the mitral valve. Noted as severe aortic stenosis, and mild mitral stenosis.
And that BW's recent readings are: aortic root = 3.1 cm, lvpwd = 1.6, ivsd = 1.8, peak velocity (across AV) = 4m/sec and (aortic) valve are[a] = .092 cm squared [= 0.92 cm squared?]. (Noted as) aortic valve significantly sclerotic with severe stenosis, significant mitral valve annular calcification, Moderately increased wall thickness with moderate concentric left ventricular hypertrophy.

My casual non-professional reading suggests that your Aorta and Aortic root are OK, but your Aortic Valve is in bad shape and ripe for replacement. I'm not sure what to make of the description of your Mitral valve.

As others have suggested, you should NOT respond with denial, and you SHOULD proceed with a Cardiologist who will deal with you as a dedicated professional and a decent human being. And you should probably ask that Cardiologist to refer you to a Cardiac Surgeon, and also to answer a bunch of your questions or refer you to somebody who can. Among the bottom-line questions your Cardiologist should answer clearly is "What happens next?", "What should I do?", etc. And explaining your diagnosis, not just giving you some numbers.


I believe the standard guideline for AV replacement due to stenosis is something close to an effective area of 1 cm squared, and yours is already lower (though I think 0.095 is incredible, so I assume it's really 0.95), so I think most experts would be steering you in the direction of a surgical replacement.

BTW, there are charts and formulas that convert blood velocity to pressure gradient and valve effective area. Your readings are a combo of the three, and it might make the picture clearer if they were all converted into "apples" and not "oranges". (IIRC, the echo cardiogram only measures velocity, and the technicians and Cardiologists use the charts and formulas to calculate the other two.)

As Lyn implied, you may be an OK candidate for open-heart surgery (like most of us here have had already or will have soon), which would almost surely mean that researching TAVI would just be a distraction or a delay, since it's still only being used in the US for patients who are NOT candidates for conventional surgery. That may change in a few years, based on studies that are presently ongoing, but I'm guessing that you shouldn't wait that long.

Do educate yourself here and elsewhere on your own, but I wouldn't delay getting some answers from my Cardiologist -- or another one if you feel you have to switch.

Thank you, the mean on my latest is 36. the number above is as you noticed 0.95 . Thanks for going through it for me, it feels important for me to hear what the basic measurments mean so I feel more confident at knowing whether I should be sit up and take notice or is it just wait and monitor. Not one to ask for more uncomfortable tests but I don't want to ignore what could be important for me to get in gear.

 

[breakingwave]

IMO you continue to find a cardiologist who can explain to you WHAT IS GOING ON, you need to walk out knowing what is going on. I will say, even if you find a blunt, very straight forward kind of Cardiologis, as long as he explains everything, you shouldn't be too picky. Some of the best Doctors out there are sometimes the biggest <earmuffs>, but they know what they're doing. Hopefully you get both a kind, but informative response. Good luck!

I am looking for a doctor that I can talk to, as I am very willing to learn what is needed. So far the ones that I have run across over the past 10 years are more of the silent, here's what we are going to do, period. My brain seems to need to want an understanding of what will this mean for my body and how can I participate. thanks for the advice.

 

[breakingwave]

For the longest time here, yes I was reading and listening to the board quite a while ago, user name then also breakingwave. Then life became more difficult with a move, a septic hip surgery, full time running three teenagers back and forth 3 hours a day to various schools while DH traveled, and lots of regular heart tests. I got over whelmed and just dived my head in the sand because I was emotionally sinking. Well I lived the life I needed to, hubby got laid off, almost lost our new house, fought back taking over bills for the first time in our 35 year marriage and am happy to say he is employed and kids still growing, one in college, one will be a senior next year and the next one follows him so at 61 some of my body parts started squeeking louder and I started cleaning the sand out of my ears and started to pay attention. I was afraid a while ago of not having the courage to face and read about some of the challenges many of you here have mastered and overcome with grace and dignity. Couldn't make myself tune in regular but now I am ready to learn more of not feeling sorry for myself and more of, so lets get down to getting this understood and on the right track. I thank you for helping steer me in the right direction. I always tell my husband, if you really want to know what the truth is ask the people who speak to these forums with what real life is living with heart difficulties and what its all about.