Saw excellent cardiac surgeon

[Paleowoman]

Been very busy seeing docs lately. I saw a cardiac surgeon last week about the rising pressure gradients and the development of LVH I have been getting since AVR, plus the fact that I have never fully got back to how fit and well I was prior to AVR and what to do about it all. A few days before I had had an ‘Expert Echo’ done by a cardiologist the surgeon works with - I’ve never had such a thorough echo. And the surgeon was the best. He was quite unlike the other cardiac surgeon I saw nor the cardiac surgeon who did my AVR. He explained everything to me. He explained the mathematics and dynamics of it all, he did not dumb down to me but at the same time he made it clear enough for me to understand.

I have moderate patient prosthesis mismatch but the valve is working fine and not degenerating. My pressure gradient (currently peak 53mmHg, mean 31mmHg) is likely due to high outflow but not due to the prosthetic valve. The LVH is not enough to be concerned about, it’s to do with my left ventricle being hyperdynamic - he said that being hyperdynamic is just a feature of my left ventricle as it was there always, and my Ejection Fraction is supra normal at 78% as it usually is, again just how my heart is (like noses can be different lengths he said). The echo cardiologist had done some specific tests to check this was not pathological as well as the usual tests done at echo - he also was able to visualise the valve in as much detail as a TEE echo.

Surgeon says I definitely should not have surgery to put in a bigger valve, that would likely make me worse if done now and carry a significant mortality risk. He explained all about future redos at that point in the consultation. I should have regular echos, six monthly or annually to especially check the valve for any degeneration or problems. I might also try a medication which slows the heart rate - I’ll discuss this with my cardiologist.

He also told me that having cardiac surgery can affect some people negatively.. He acknowledged that I am not recovered to where I was before surgery even now over three years later - and he understood my disappointment. He’s a sportsman in his spare time, and we discussed my loss of strength and stamina along with symptoms. He is going to present my case at a multidisciplinary team meeting of cardiologists just in case someone has some different input. His NHS base is Barts Heart Centre - I was most impressed

 

[honeybunny]

That is a great update, Anne! I'm so glad you found someone who was able to provide a sense of relief yet not sugar coat anything. Very interesting about individual heart/valve function. And presenting your case...wow!

Thanks so much for sharing~

 

[Midpack]

Great news!
Let us hope you can now "forget" about your cardiac condition for some time (at least until your next checkup) and focus on enjoying more your life! We tend to overthink about our cardiac problem (of course i include myself here), and that is not good for our mental health!

 

[epstns]

Wow, Anne! I am truly impressed! It sounds like this doc understands your situation fully. It also sounds like there is less to worry about than you were led to believe before. What a relief!

I understand what you feel regarding not being back to where you were prior to surgery. I have a similar situation, but in my case part of the loss of strength and endurance may be due to aging (I was 63 at surgery, now almost 70). For me, part of the issue is also due to the limiting effect my beta blocker has on my maximum heart rate. Before surgery I did not take the BB, and was able to exercise to a max heart rate in the middle 160's fairly comfortably. After surgery I take a beta blocker (metoprolol extended release, 25 mg/day), which seems to cap my max HR at about 145 BPM. I'm still OK for 30-45 minute aerobic workouts, but not at the speed/pace I kept before. I have accepted the fact that this is my "new normal" and have adjusted to it, but that may be more difficult for you to accept, as you are a good bit younger than I.

The good thing I see here is that this doc understands you and your condition, and that he sees no reason for immediate intervention. That, then, allows you to return to your normal activities without worrying about "what am I hurting by doing this?"

 

[Paleowoman]

I’m hoping I can forget about things heartwise somewhat now, yes ! I see my cardiologist this Thursday to discuss the heart rate lowering medication, it’s suggested to try ivabradine, and if I take it, when my resting heart rate is just under 70 then I have another echo.

It’s pretty amazing to get a doctor who seems to understand me and my condition so well. I’m gutted, truly gutted, that he wasn’t the surgeon who did my AVR…but we can’t go back in time and at least I’m under him now - his name is Neil Roberts for any UK valvers who might be curious. Maybe I’ll also get my future echos done by his colleague.

 

[Seaton]

Really great to hear this update, Anne. And brilliant he was so thorough! I’ve taken note of his name.

My NHS cardiologist at St Thomas’ presents my readings after each appointment to a multidisciplinary team (MDT) meeting, often made up of cardiologist, echo specialist and surgeon. They discuss the findings and all throw their opinions into the mix just in case anything is being missed or disagreed with. Good way of working, I think and a great NHS policy.

Best of future health to you!

 

[pellicle]

Hi

I'm so glad to hear that you're finally getting (what appears to be) good advice from a good sugeon.

...I have moderate patient prosthesis mismatch but the valve is working fine and not degenerating.

while that first point stings the second point is very good to know (referencing your earlier post from perhaps last year now).

Surgeon says I definitely should not have surgery to put in a bigger valve, that would likely make me worse if done now and carry a significant mortality risk. He explained all about future redos at that point in the consultation.

good, that increases my faith in him ... for that is the plain truth.

Best Wishes and I hope you can move forward well form here

 

[Paleowoman]

Thanks Pellicle ! Yes this surgeon was a very honest, down to earth, man which is what I like. I hate the kind of doctor who thinks a patient won't be able to understand.

Another interesting thing. My ascending aorta is mildly dilated, something noted on a CT angio I had a couple of months ago, not anything to be concerned about at this stage. The surgeon explained not only what we all know which is that having bicuspid aortic valve often comes with dilated aorta, but that when they do aortic valve replacement they cut through the aorta to access the valve which then weakens somewhat the aorta where it has been cut.

Seaton - glad to hear you get an MDT too, and everytime you see your cardiologist. This will be the first time I will have one. I do hope they become more common in heart hospitals as it's surely much better that input is taken and discussed among several cardiac specialists rather than a decision taken by one.

 

[jwinter]

Oh Anne such a great post to read. Year and half ago I had all the tests and then the cardiac team at Billings hospital met twice before they met with me to give me all their observations and also to refer me on to Mayo. I felt really comfortable with decisions made when they worked together and put all the cards on the table.

I wish you the best in days ahead and future tests. Life is good!

 

[ottagal]

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[ottagal]

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[Eva]

Glad you feel at peace and trust him.

My heart rate before surgery was 70 or below before surgery. After surgery, it was between 85 - 95. My doctors never minded it that height (though it worried me always) as long as it didn’t go over 100 at rest and stayed for few minutes.
t took over three years to go back to the 70s or lower at rest.

 

[Paleowoman]

Glad you feel at peace and trust him. My heart rate before surgery was 70 or below before surgery. After surgery, it was between 85 - 95.

My heart rate has always been high, it's no different now to how it was before surgery. And my left ventricle has always been "hyperdynamic" too. I think they want to see if having a lower cardiac output has a beneficial effect - they also wanted to look for a non cardiac cause for it, but I don't tick any boxes for that (ie anaemia, hyperthyroid, dehydration, Paget's or one of my meds).

I found a nifty app yesterday for my iphone which meassures my heart rate instantly like those finger oximeters that are used by docs, works by the same method, (have to delete the word as the spam filters don’t like it !), by using the phone's camera and light - it's called Heart Rate Pro by Runtastic - the App was only £1.99, much better value than getting a new battery for my heart rate monitor which in any case you can't wear all the time, whereas I can just easily use the iphone.

 

[Midpack]

What about the millennial method of counting the heart beats for say 20 seconds and multiply by 3?
Works pretty well for me!

 

[Agian]

You can pick up a finger pulse oxymeter on eBay. They're not that expensive. They also tell you your oxygen sats. Fitbits monitor you heart rate as well.

 

[Paleowoman]

What about the millennial method of counting the heart beats for say 20 seconds and multiply by 3?Works pretty well for me!

Yes that works but not so accurately, especially as my heart rate can be very fast and then feels ‘weak’ so I lose the pulse. Also with this app I get a record, probably good if I’m taking a heart rate lowering med. The name of the technology is photoplethysmogram or PPG - it’s very clever - I am a bit of a nerd too which attracts me to it !
@Aglan - this app costs ony £1.99 (just over 3 Australian dollars), far less than an oximeter on eBay (works with the same technology) and far less money than a fitbit - I looked into fitbits, they're not nearly so reliable as this thing I have on my iphone - I can't tell you how pleased I am with it !

 

[Nocturne]

Sorry you are dealing with this nonsense Paleo. Why do patient/prosthetic mismatches happen in the first place?

 

[Paleowoman]

Why do patient/prosthetic mismatches happen in the first place?

From what I understand:

When a person has aortic valve replacement the surgeon can’t know for sure what size valve to insert until they get in there and measure the valve ring (annulus ?) of the valve being replaced. If this is small then the patient gets a small prosthetic valve which, because of its sewing ring, will always be smaller than a native valve. Depending on the “mismatch” of valve and patient body size they can calculate the degree of “patient prosthesis mismatch”. Whether or not this affects the patient adversely appears to be controversial - Neil Roberts talked over the studies done about this with me.

Patient prosthesis mismatch can sometimes be prevented by placing the prosthetic valve in the supra annular position, or by using a stentless valve or by doing aortic root enlargement (carries some risk) or by using a mechanical valve. In fact Neil Roberts said that with patients whom he suspects have a small annulus who want a tissue valve and who he thinks would get adverse effects from that, he gets them to sign something to the effect that if, when he gets in there, he finds a tissue valve would produce too much of a mismatch he can put in a mechanical valve - he won’t do surgery on patients like that who will not agree to that !

Some people have asked me why can’t they just put in a bigger valve during the op - Neil told me that where the valve is situated the tissue of the heart is very fibrous so they are limited in what size prosthetic valve they can use. He told me too that with redo there is no guarantee a person can get a bigger valve - they can even end up with a smaller one due to scar tissue.

 

[pellicle]

From what I understand:

When a person has aortic valve replacement the surgeon can’t know for sure what size valve to insert until they get in there and measure the valve ring (annulus ?) of the valve being replaced. If this is small then the patient gets a small prosthetic valve

well to add to this; this is why my surgeon said to me "we always have a variety of sizes available at surgery to deal with such variations.

To me it seems a bit like "poor planning" on their part.

 

[Paleowoman]

well to add to this; this is why my surgeon said to me "we always have a variety of sizes available at surgery to deal with such variations.

To me it seems a bit like "poor planning" on their part.

Hi pellicle - There's probably a misunderstanding here due to the word 'valve ring', another word for that is 'annulus'. They definitley have all the sizes of prosthetic valve available in the operating theatre - and different types according to the surgeon I saw last week. There's no poor planning, becasue they can't know for sure what size they will need until they get in there. They measure the size of the 'valve ring' (annulus) of the patient's native valve that is being replaced. For example, on my Operation Note it states at the point where my bicuspid valve was reached "The valve leaflets were excised and the valve ring was decalcified. The valve ring was sized and 19mm Magna Ease Perimount Valve inserted etc" They can't put in a bigger replacement valve than the space will allow except by doing other things such as root enlargment, supra annular placement, etc.

PS - Actually what's poor planning with me is that the surgeon who did my AVR didn't do a supra annular placement or a root enlargement.