how to make a new heart?

[Evgenii]

планируемое краткосрочное прекращение приема АКТ (варфарина) для этого вмешательства

Yes, they ask to cancel a few days in advance

 

[pellicle]

Hi

apparently pellicle said: планируемое краткосрочное прекращение приема АКТ (варфарина) для этого вмешательства

Yes, they ask to cancel a few days in advance

which confirms my suspicion that you are speaking Russian and are using a translate engine (which doesn't bother me). That you are considering buying a Coaguchek suggests you are not as likely to be from the Eastern provinces.

Since that's the case then I can't really blame corporate greed and instead will agree with your earlier assessment about being lied to. However in their defence I'd say that Russian Doctors may actually misunderstand the "signalling" in the language where just like birds in a tree all writers of papers on valves who push the bio-prosthetic angle continue with words like:

• the burden of INR testing
• the risks of stroke from mechanical valves
• the increased risk of bleeds (0.5% increase is still an increase even if it vanishes to 0 with proper INR management)
• the refusal to acknowledge the existence of ACT

Best Wishes

 

[Evgenii]

I live in Moscow and here every clinic sells what they were told to sell, mostly mechanical ones but without choosing the manufacturer

 

[pellicle]

here every clinic sells what they were told to sell, mostly mechanical ones

to me that's (bolded) encouraging to read ... IIRC Norway also has a strong preference for a mechanical in patients under 60 yo

What really matters is that you maintain INR within the therapeutic range (2 ~ 3) for the greater majority of the time.

Some interesting listening/reading
https://www.medscape.com/viewarticle/838221

MP3 here: https://bi.medscape.com/pi/editorial/studio/audio/2015/core/838221.mp3

 

[Evgenii]

to me that's (bolded) encouraging to read ... IIRC Norway also has a strong preference for a mechanical in patients under 60 yo

What really matters is that you maintain INR within the therapeutic range (2 ~ 3) for the greater majority of the time.

are there any exact indications for surgery? or is it not fixed? in my case the situation is not clear, those who put a mechanical valve say to wait a little longer
"They operate on severe aortic stenosis, but you still have moderate" (c)

 

[pellicle]

are there any exact indications for surgery? or is it not fixed?

its a bit vexed because its not like a human is as simple a system as a solution of copper sulphate where we can accurately predict the conditions for precipitation or crystalisation.

There are a number of criteria to be assessed and assessed in the light of modern thinking (formed by observing the less than ideal outcomes of old thinking). Become aware of some of the issues in this and be able to recognise properly (not QAnonly) if the medical professional you're talking to is outdated or up to modern speed.

There is much written on this site on this topic (not least by the members Astro or Chuck C). This search is a good start on the topic.

Despite your apparent protest against Google with your frowning penguin its a good tool and we will all be poorer for its loss.

 

[Chuck C]

are there any exact indications for surgery? or is it not fixed?

There are two camps on this question. One says to get surgery once your aortic stenosis becomes severe. The other says to wait for it to become severe with symptoms.
My surgeon is of the opinion to not wait for symptoms and generally get surgery once stenosis is severe. With aortic stenosis the left ventricle enlarges as it works harder and harder to get your blood through the shrinking valve opening. After surgery, the LV will remodel and reduce in size, but if it becomes too enlarged, there is an increasing chance that it will never return to normal size, which could mean diastolic and/or systolic dysfunction.

The idea with not waiting for symptoms is to get surgery before your heart enlarges to the point that it will not fully remodel back to normal. In other words, get your surgery done before irreversible damage occurs to your heart. Also, as my surgeon pointed out, your first symptom might be sudden death, so better to get the surgery sooner rather than wait, provided it is in the severe. Since I was getting a mechanical valve, it made even more sense to not wait for symptoms. Since mechanical should mean being one and done, it made almost zero sense to wait 3 or 6 months for symptoms to develop and risk irriversible damage. Just kicking the can down the road for a one time surgery which I need to face eventually, regardless. I'm glad that I did get surgery when I did, as my LV wall thickness did return to normal afterwards.

"They operate on severe aortic stenosis, but you still have moderate" (c)

It is generally not yet time for surgery if your stenosis is in the moderate range. There are exceptions, for example the size of one's aneurysm could drive the need for surgery even if your aortic stenosis is still moderate. At 43mm, it would not appear that this would be the case for you.

the average pressure gradient increased to 38 and one of the hospitals concluded that a valve replacement was needed, but other hospitals continued to insist that a replacement was not yet necessary

A mean pressure gradient of 38mmHg is still in the moderate range, so I can see why the other hospitals are telling you that it is not yet time. For the one hospital which recommended surgery now, what was their reasoning?

 

[V__]

Do any of you smoke cigarettes or did you smoke before the surgery? How are things going with that? Will it be possible to smoke after they allow you to walk?

No, I didn't smoke ever. But I noticed "if you smoke, quit!" in the preparation materials before the surgery. This seemed as an unusually direct suggestion. Now I think they were not direct enough. They could've said instead "if you have any sense in you, quit smoking immediately!"

Basically, in the post-surgical state your body is weak. The lungs in particular are affected. Their effective volume goes down by something like the factor of 7 (by my estimate). Of course, it recovers, and there should be breathing exercises to do to facilitate the recovery. But it will take time (probably several weeks) before it recovers completely.

Put another way, there is very little stamina left when you wake up, and the extra stress from smoking will be too much for you.

Regarding walking, the nurses and doctors should be asking you to walk very soon, perhaps the next day after the surgery. The sooner, the better - a long inactivity is bad by itself. The first walk can be a *very* short, but it will help. The walking duration should also recover. These things depend on your fitness level and individual circumstances, but the full recovery will likely take weeks, if not longer.

So, "if you have any sense in you, quit smoking immediately".

I feel deceived by medicine

Well, echo and other modern medical tests can "see" the problems even when you don't have the symptoms yet. And the guidelines can suggest an intervention before irreparable damage is done. So I see the open heart operations as a triumph of modern medicine. It's a very well polished machine that saves lives (and quality of life).

 

[pellicle]

Now I think they were not direct enough

How about "if you don't quit find a surgeon willing to accept inferior outcomes"

 

[Evgenii]

A mean pressure gradient of 38mmHg is still in the moderate range, so I can see why the other hospitals are telling you that it is not yet time. For the one hospital which recommended surgery now, what was their reasoning?

valve plastic surgery was offered, which is not done at late stages of the disease. it was 3 months ago, the fibrous ring was 26 mm and they offered me to do the ozaki procedure, and now it is 28-30 mm on another device. it turns out that I missed the opportunity to do the ozaki procedure or do it reliably according to suitable parameters. I have seen stories that the fibrous ring can be reduced, but apparently this is not a very reliable technique. when I came for the first consultation I did not have any symptoms, now I feel like I sometimes feel my heart beating on my neck and shins, as it seems to me this appears after physical activity in the pool or if I walk 8 km or more. maybe I am going crazy after such news and this is neuralgia

 

[Evgenii]

hi everyone! I'm in the hospital for echography and coronary angiography. and I can't take it anymore with these echocardiography glitches
aorta first ring 41 and not 43mm, but now regurgitation is 3rd degree and not 2, please tell me which examinations give more accurate results, the doctor is not worried about stenosis at all, it is there but very moderate
What would be more accurate, MRI or CT?

 

[Chuck C]

the fibrous ring was 26 mm and they offered me to do the ozaki procedure, and now it is 28-30 mm on another device. it turns out that I missed the opportunity to do the ozaki procedure or do it reliably according to suitable parameters.

Interesting. Missing that "Ozaki window" may be a blessing in disguise. Ozaki has not been around long enough to determine the long term outcomes for young patients. There is a study out there, in support of Ozaki, claiming to be a 15 year study. However, when you read the details, you will find out that only 5% of the patients were tracked longer than 10.5 years. It was already a small study, so when eliminating all but 5% of those studied, it becomes just a small handful of people studied beyond 10.5 years. Hardly enough to make big promises about the long term outcome. Also, if a person is set on getting an Ozaki, given its complexity, I would only consider getting it at the most experienced hospital in the world for this procedure, which would be in Japan.

 

[Chuck C]

hi everyone! I'm in the hospital for echography and coronary angiography. and I can't take it anymore with these echocardiography glitches
aorta first ring 41 and not 43mm, but now regurgitation is 3rd degree and not 2, please tell me which examinations give more accurate results, the doctor is not worried about stenosis at all, it is there but very moderate
What would be more accurate, MRI or CT?

I would not characterize any of that as a glitch. Measurements via an echo are not exact and having a small difference in one echo is common. I had one measure my aorta diameter at 36 and then the next one was 34. Then back to 36mm. 2mm is a difference which could easily fall within the tolerance of the echo.
Whether it is 41 or 43mm, you are fairly far away from the point at which aortic diameter would drive the need for operation- which would be 55mm. As a side note, if they are going in for OHS anyway, they will typically use a lower threshold for aortic repair, rathar than go back in a few years later to make it.
And, your regurgitation going from 2nd degree to 3rd degree would be a normal finding as severity often does increase with time. You might have been 2nd degree, but near the 3rd degree threshold and now have crossed it.

You can request an MRI or CT scan, but since the measurements you've shared are not very close to the threshold for intervention, I'm not sure that they will determine that it is warranted.

 

[pellicle]

I can't take it anymore with these echocardiography glitche

one of the other problems is that we are trying to measure something which is living and moving with methods which are more like measuring a tree from the shadows cast on the ground. There is much inference and just like a blurry picture its hard to be precise.

now, if we could stop your heart, take it out and measure the parts we could know more accurately ... but of course then you wouldn't need surgery anymore.

So even within a few mm is actually entirely sufficient, as Chuck mentioned you're a ways off the area where its dangerous.

Taking a step back, why are you even in there getting assessed? Was there some symptom?

 

[Evgenii]

one of the other problems is that we are trying to measure something which is living and moving with methods which are more like measuring a tree from the shadows cast on the ground. There is much inference and just like a blurry picture its hard to be precise.

View attachment 890808

now, if we could stop your heart, take it out and measure the parts we could know more accurately ... but of course then you wouldn't need surgery anymore.

So even within a few mm is actually entirely sufficient, as Chuck mentioned you're a ways off the area where its dangerous.

Taking a step back, why are you even in there getting assessed? Was there some symptom?

the cardiologist sent me for an annual routine examination and it has been going on for 3 months now, the gradient has grown from the previous examination, now there is regurgitation

 

[Evgenii]

Taking a step back, why are you even in there getting assessed? Was there some symptom?

now I feel like I sometimes feel my heart beating on my neck and shins, as it seems to me this appears after physical activity in the pool or if I walk 8 km or more. maybe I am going crazy after such news and this is neuralgia
it's like when my pulse is higher than usual during exercise and I don't feel it, but when I'm at rest after exercise I feel my heart beating as hard as if I were still exercising, I feel it on my neck
it's not about the number of blows but the force of the blow

 

[Lucker]

Evgenii​

Yes, the forceful pulse is common with a valvular disease, don't overtrain, your heart is already somewhat strained. I know your wish to show to yourself that you are "normal", still, don't. Try to get over this stress, live calmly and follow the regular checks.

 

[pellicle]

now I feel like I sometimes feel my heart beating on my neck and shins, as it seems to me this appears after physical activity in the pool or if

for what its worth I was followed yearly at first, then more frequently on my first two surgeries.

Its important to get a base line to start with (think measure more than twice and cut once) and then when we see changes going from linear to non linear

action is taken and we have good data to work with.

I also want to reiterate what Lucker has said here:

I know your wish to show to yourself that you are "normal", still, don't. Try to get over this stress, live calmly and follow the regular checks.

I find that most people have a little story (like a book character) of who they see themselves as. This is usually quite flawed but reality seldom impinges on this. Now reality is impinging on your self story and you need to adapt to that or suffer for not.

Consider yourself lucky that of all the ways the human body can fail, you got a simple plumbing issue, not something which is actually very difficult to treat (say cancer...). Everyone who gets Cancer has far more problems than we do.


Best Wishes