Help me understand

[pellicle]

sounds to me like you are in the waiting room for a while longer then.

 

[NDNMD]

sounds to me like you are in the waiting room for a while longer then.

Doctor thinks 15-20 years

 

[pellicle]

Doctor thinks 15-20 years

perfect

plenty of time for evolution of technology and procedures.

I know that may sound like frustration, but deferred surgery is better than post surgical complications my friend.

besides if you pick a tissue prosthetic you'll be in the same 10~15 year boat straight away (with the risk of post surgical complications thrown in for good luck)

 

[NDNMD]

perfect

plenty of time for evolution of technology and procedures.

I know that may sound like frustration, but deferred surgery is better than post surgical complications my friend.

besides if you pick a tissue prosthetic you'll be in the same 10~15 year boat straight away (with the risk of post surgical complications thrown in for good luck)

I agree! I am in no hurry for surgery. The frustrating thing will be the degeneration and increasing risk over time. I used to lift heavy weights--now i can't. That is the only immediate change to my life.

 

[dreamy885]

I have been in the waiting room for almost 30 years! I had OHS when I was 2 to open my BAV further. They knew at the time that I would eventually need it replaced, just didn't know when. I'm very glad that my symptoms didn't show up until now, after I've had two healthy kids. I'm looking forward to this extra energy I've been hearing about on the other side of valve replacement! I hope you are able to live 20 more uneventful years before you need it done

 

[Paleowoman]

I agree! I am in no hurry for surgery. The frustrating thing will be the degeneration and increasing risk over time. I used to lift heavy weights--now i can't. That is the only immediate change to my life.

Did the doc say you couldn't lift heavy weights ? I was lucky in that I didn't have to cut down on the weights I lifted until literally the time I was referred for surgery - I was lifting heavy weights when I had moderate to severe stenosis and it was only when it reached critical that I had to lighten the weights.

 

[NDNMD]

Did the doc say you couldn't lift heavy weights ? I was lucky in that I didn't have to cut down on the weights I lifted until literally the time I was referred for surgery - I was lifting heavy weights when I had moderate to severe stenosis and it was only when it reached critical that I had to lighten the weights.

Doc said I could not lift any weights such that it caused holding breath or failure to lift--it raises blood pressure too high. He said to lift such that I did sets of 12-15 repetitions instead of what I used to do for building muscle: sets of 3-5 repetitions. The risk factor isn't stenosis, but aortic tear or dissection.

 

[Paleowoman]

Doc said I could not lift any weights such that it caused holding breath or failure to lift--it raises blood pressure too high. He said to lift such that I did sets of 12-15 repetitions instead of what I used to do for building muscle: sets of 3-5 repetitions. The risk factor isn't stenosis, but aortic tear or dissection.

Ah I see, yes the risk of aortic dissection would mean not lifting heavy weights.

 

[NDNMD]

I just had a new mri done. My left-ventricular noncompaction is causing cardiomyopathy. My LV ejection fraction is down to 51%. I will ask in my next appointment in a month whether there are previous readings to baseline, but I feel like this is pretty bad news overall. It feels as if I’m progressing down a bad path overall. I don’t have the energy I used to when working out, and I thought it was just age. Heart failure in my 30s doesn’t give me much confidence of having a long life, especially with the aorta at 42mm now.

 

[rakesh1167]

I just had a new mri done. My left-ventricular noncompaction is causing cardiomyopathy. My LV ejection fraction is down to 51%. I will ask in my next appointment in a month whether there are previous readings to baseline, but I feel like this is pretty bad news overall. It feels as if I’m progressing down a bad path overall. I don’t have the energy I used to when working out, and I thought it was just age. Heart failure in my 30s doesn’t give me much confidence of having a long life, especially with the aorta at 42mm now.

Do you still lift weights?

 

[pellicle]

I just had a new mri done. My left-ventricular noncompaction is causing cardiomyopathy. My LV ejection fraction is down to 51%. ...Heart failure in my 30s doesn’t give me much confidence of having a long life, especially with the aorta at 42mm now.

I would expect that your imminent surgical intervention will probably turn that around, so its not "bad news" but just that the indicators have moved on to a point where surgery is the best option (and trust me, nobody wants surgery as a hobby or because they wanted some entertainment).

My life was turned around twice by surgery (the third I was still doing well but aneurysm could see that change rapidly) ... look on the bright side ;-)

 

[NDNMD]

Do you still lift weights?

I still do, yes. I haven't yet talked to my cardiologist since the latest MRI.

 

[NDNMD]

I would expect that your imminent surgical intervention will probably turn that around, so its not "bad news" but just that the indicators have moved on to a point where surgery is the best option (and trust me, nobody wants surgery as a hobby or because they wanted some entertainment).

My life was turned around twice by surgery (the third I was still doing well but aneurysm could see that change rapidly) ... look on the bright side ;-)

I have to speak with my cardiologist in a month. In my previous visit with my previous cardiologist (he left the practice and moved states), he seemed to think surgery was 10-20+ years away. He also told me my aortic diameter was 39mm, but this MRI said 42mm, with the previous actually being 41. So there is a lot unclear there to me. I am not sure how my cardiologist will view surgery. Will he be conservative and delay it as long as possible while treating the cardiomyopathy with medication? Or will he use it as a reason to have surgery sooner? No clue.

 

[rakesh1167]

I still do, yes. I haven't yet talked to my cardiologist since the latest MRI.

My Aorta was 2.1 in 2008. I started lifting heavy(at-least for me) weights and it grew to 3.8 in 2013. Stopped lifting weights, it has been stable for now.
I had AVR in 2016, i requested my Surgeon to replace Aorta too which he didn't since size was < 42 mm. If he had done that, i would have started lifting weights again.
I know that it is likely that Aorta will increase in size one day, but if i start lifting weights it will be much sooner. It may not be the factor for everyone, but for some it is.

I would advice you to stop lifting weights, brisk walking is safest. I know it can be very hard(it was for me).
I don't mean to scare you. Don't worry, surgery will fix you. But you should try to delay it if possible.

 

[NDNMD]

My Aorta was 2.1 in 2008. I started lifting heavy(at-least for me) weights and it grew to 3.8 in 2013. Stopped lifting weights, it has been stable for now.
I had AVR in 2016, i requested my Surgeon to replace Aorta too which he didn't since size was < 42 mm. If he had done that, i would have started lifting weights again.
I know that it is likely that Aorta will increase in size one day, but if i start lifting weights it will be much sooner. It may not be the factor for everyone, but for some it is.

I would advice you to stop lifting weights, brisk walking is safest. I know it can be very hard(it was for me).
I don't mean to scare you. Don't worry, surgery will fix you. But you should try to delay it if possible.

I lift in the 12-15 rep range now, rather than the 5-8 that I used to. With diabetes, I need the lean muscle mass.

 

[matty]

I'm not much older than you. I had surgery at 40. I found out by accident about my heart issues and getting to surgery was a bit of a whirlwind at the time. I had severe left ventricular hypertrophy, severe regurgitation and an aortic aneurysm of 4.7 cm. I feel like my heavy weight lifting on and off over 20 years contributed to the deterioration of my undiagnosed bicuspid valve and aorta. I used to squat 180 kg at times, to give you an idea of the weight i was pushing. Normally low reps and high sets.
The heart is pretty amazing. I had my 2 year post surgery follow up yesterday and all my heart measurements are normal. My EF is normal now at 56%. Your heart doesn't have to recover much at all to get to a normal EF. I think some cardiologists would still say 51% is low normal ?
From researching the safety of weight training after valve/ aortic surgery what i kind of gathered is that it's the blood pressure spikes that you need to be wary of. There are people who train heavy after surgery, I personally won't, but I feel comfortable with exercises like push ups and dips as long as I am very careful with my breathing. With any resistance training after surgery I think you should avoid doing the valsalva maneuver and learn to breath properly to keep your blood pressure down (there are techniques for this).
I did have a chat with a member of this forum regarding weight training and he said he is the strongest now he's ever been after getting his mechanical valve and he does do valsalva. I remember at the time he was squatting substantially more than I used to but I dont think he had an aortic graft.
On the topic of valve replacement and heavy weight lifting checkout the documentary "CT Fletcher: My Magnificent Obsession". There's not much in there about his mechanical valve but it's interesting and at times comical if you're not offended by a potty mouth.

 

[NDNMD]

I'm not much older than you. I had surgery at 40. I found out by accident about my heart issues and getting to surgery was a bit of a whirlwind at the time. I had severe left ventricular hypertrophy, severe regurgitation and an aortic aneurysm of 4.7 cm. I feel like my heavy weight lifting on and off over 20 years contributed to the deterioration of my undiagnosed bicuspid valve and aorta. I used to squat 180 kg at times, to give you an idea of the weight i was pushing. Normally low reps and high sets.
The heart is pretty amazing. I had my 2 year post surgery follow up yesterday and all my heart measurements are normal. My EF is normal now at 56%. Your heart doesn't have to recover much at all to get to a normal EF. I think some cardiologists would still say 51% is low normal ?
From researching the safety of weight training after valve/ aortic surgery what i kind of gathered is that it's the blood pressure spikes that you need to be wary of. There are people who train heavy after surgery, I personally won't, but I feel comfortable with exercises like push ups and dips as long as I am very careful with my breathing. With any resistance training after surgery I think you should avoid doing the valsalva maneuver and learn to breath properly to keep your blood pressure down (there are techniques for this).
I did have a chat with a member of this forum regarding weight training and he said he is the strongest now he's ever been after getting his mechanical valve and he does do valsalva. I remember at the time he was squatting substantially more than I used to but I dont think he had an aortic graft.
On the topic of valve replacement and heavy weight lifting checkout the documentary "CT Fletcher: My Magnificent Obsession". There's not much in there about his mechanical valve but it's interesting and at times comical if you're not offended by a potty mouth.

Did you have left ventricular noncompaction? That's supposed to be the cause of my cardiomyopathy, not the bicuspid valve. I am not sure how replacing the valve and aorta will have much bearing on that, but I'd love to hear it. While an EF of 51% sounds close to the "normal" of 55%, the normal range is set by an average of a bunch of older people. If you look at a normal EF by age, 65% is much closer to where one should be at age 40.

 

[matty]

I'm not saying that a new valve and graft will help your situation. I'm suggesting that the heart has excellent powers of recovery if the source of its issues are treated.
I thought too that EF was fairly consistent over a lifetime. Likely I am wrong. But I'm banking on 55 being my "normal". Never had it measured till my valve was stuffed so I will never know.