Aortic Valve replacement - Melbourne, Australia - recommendations

[michaeljquinn]

Hi All
Seeing cardiologist - last 5 years with AVS(65 yr old male) - annual checkups/echos and stress tests, gradual progression from mild->moderate
Had angio Apr 2020 which showed some occulsions (60%) on one artery, but once again he seemed
'unconcerned' other than put me on statins (20mg)


He is ok, but not particularly forthcoming on treatment options rather than just "wait and see" and some really
trivial explanations of how AVS is a problem but no discussion at all on what the echo numbers really mean.


All ok - but last 12 months exercise tolerance (was running 50kms/week) has deteriorated significantly. Cardiologist
seems 'unconcerned' about this as apparently all my numbers are ok and I am symptom free (moderate stenosis).
But getting really frustrated about not exercising at a high enough level to maintain fitness. -Can walk 1hr to 1.5 hrs no
problems, but breaking into a jog has me puffiing and panting a lot.
Hot and sweaty yard work is also ok, but frustrated on how much I have slowed down on that as well
Bit scared to push harder.

Is it time to start talking about surgery and in particular anybody (in AUS) have recommendations around
where the best surgeons reside in MELB/AUS.

thanks, great forum btw

 

[Brokenhip]

Michael,
I had severe aortic regurgitation and was being looked after by a cardiologist from the Heart West group. The main surgeon they use is Dr Justin Negri who works at Cabrini. I was 67 at the time (2018) and he recommended a tissue valve mainly due to my age as well as being an active cyclist. Probably did not discuss the pros and cons of a mechanical valve enough. Had I have researched this site more I may have been more proactive in the discussion, not that I am disappointed with the outcome.
The operation and recovery at Cabrini was first class and Dr Negri was excellent. At the time I believe he had performed over 2000 valve replacements. My procedure was text book in every way including rehab, and was back cycling outdoors in 10 weeks. Being quite fit going in and motivated coming out is a major benefit.
For interest I was about $5K out of pocket for the total procedure.
Good luck for the future, I’m sure you will do well.
Peter

 

[Chuck C]

" breaking into a jog has me puffiing and panting a lot. "
"Hot and sweaty yard work is also ok, but frustrated on how much I have slowed down on that as well
Bit scared to push harder.

Is it time to start talking about surgery "

Hi,
What you are describing sounds like "symptoms upon exertion". There are many cardiologists that will tell you that now is the correct time to get your surgery, mine included. I can't help you with a cardiologist in AU, but you are wise to seek a second opinion, as you are doing. That your current cardiologist seems unconcerned with what you are describing is a big red flag. Get a second opinion, and if he also seems unconcerned, I would get a third opinion.

You may find this video helpful. Cleveland Clinic is ranked #1 in the US for valve surgery and they have a good handle on when is the right time to operate. Please note the comments by Dr. Doug Johnson as to when is the right time. What you don't want to do is to wait so long that your heart suffers irreparable structural damage.


Do you have a bicuspid aortic valve? (BAV). This is usually the case when someone your age, relatively young, has moderate stenosis. What is your Lp(a) level? Lp(a) can also accelerate aortic stenosis and it is not uncommon for people with very high levels of Lp(a) to get calcified valves in their 60s.

Do you know your ejection fraction? EF?
Any LVH(enlarged left ventricle)?

If you watch that video, you will also note that Lars Svensson talks about a patient, that he just operated on, whose cardiologist held onto him too long before referring him for surgery- waiting until his EF was 35%. You don't want to be that guy. Please make sure you speak to a cardiologist who understands the importance of getting valve surgery before permanent structural damage occurs. I am sure there are members here who can give suggestions on who to see.

Good luck!

 

[tom in MO]

For most of us, the echos signal the time for a valve replacement. I'd push back at your cardiologist as to what symptoms and what echo results signal the need to schedule surgery.

 

[michaeljquinn]

Thanks for the replies - appreciated -
1 - No bicuspid valve
2 - Lipid levels been ok for last 5 years (according to cardiologist ?) and had annual checks for a long time. GPs have
said they are a little high, but not really requiring treatment( (at least for last 10 yrs or so)
3 - Been exercising for almost 6 years - was off and on before that, did run melb marathon about 30 yrs ago,
4 - Weight was high 6 years ago and was on anti hypertensives, (90kg), but got down to 72kg last year. But exercising meant i did
not need them. Resting HR was down to 56. But with this covid (was at gym) and my "huffing and puffing", have not been doing the km's I should be, and weight has crept up to 80kg
5 - Non drinker (0 alchohol) and non smoker (never)

My BMI is probably too high now (5 foot 8 - 174cm), but have relied on exercise primarily to maintain weight. Diet is ok (last cholesterol was 3.6 )

 

[Chuck C]

If Australia is at all like most of the rest of the world, they will not order an Lp(a) with a standard panel. It will probably need to be ordered separately. If your panel does not include one I would highly recommend asking your GP for an Lp(a) test. A great number of people with valve disease have elevated Lp(a), especially when looking at only the non BAV folks and most are probably unaware of it. If you have moderate stenosis in your 60s and you are not BAV, there is a very strong possibility that you have high Lp(a) and this is something that you and your doc should know. BTW, statins increase Lp(a) for most people, something that it is very unlikely that your doc is aware of, so in trying to lower your LDL, he could possibly be increasing your risk and accelerating your valve calcification by raising your Lp(a), in the event yours is elevated. Knowledge is key.
This is a separate issue that the question as to whether you need surgery soon, based on your symptoms but long term it is important to be aware of your Lp(a) and yours could very well be elevated, in that you do not have BAV and have AS in your 60s.
https://www.acc.org/latest-in-cardi...e-role-of-lipoproteina-in-calcific-av-disease

 

[OldManEmu]

I am in Melbourne and have had 2 AVRs the second included an Aortic repair. Both my surgeries were performed by Associate Professor George Matalanis He does a lot of the more complex cases here is his profile. Associate Professor George Matalanis | Hope For Hearts
The other surgeon that I am aware of that also specialises in the more complex cases is Peter Skillington however I have not had personal experience with him.
These were the two surgeons that the cardiologist recommended before my first surgery.

 

[newarrior]

" breaking into a jog has me puffiing and panting a lot. "
"Hot and sweaty yard work is also ok, but frustrated on how much I have slowed down on that as well
Bit scared to push harder.

Is it time to start talking about surgery "

Hi,
What you are describing sounds like "symptoms upon exertion". There are many cardiologists that will tell you that now is the correct time to get your surgery, mine included. I can't help you with a cardiologist in AU, but you are wise to seek a second opinion, as you are doing. That your current cardiologist seems unconcerned with what you are describing is a big red flag. Get a second opinion, and if he also seems unconcerned, I would get a third opinion.

You may find this video helpful. Cleveland Clinic is ranked #1 in the US for valve surgery and they have a good handle on when is the right time to operate. Please note the comments by Dr. Doug Johnson as to when is the right time. What you don't want to do is to wait so long that your heart suffers irreparable structural damage.


Do you have a bicuspid aortic valve? (BAV). This is usually the case when someone your age, relatively young, has moderate stenosis. What is your Lp(a) level? Lp(a) can also accelerate aortic stenosis and it is not uncommon for people with very high levels of Lp(a) to get calcified valves in their 60s.

Do you know your ejection fraction? EF?
Any LVH(enlarged left ventricle)?

If you watch that video, you will also note that Lars Svensson talks about a patient, that he just operated on, whose cardiologist held onto him too long before referring him for surgery- waiting until his EF was 35%. You don't want to be that guy. Please make sure you speak to a cardiologist who understands the importance of getting valve surgery before permanent structural damage occurs. I am sure there are members here who can give suggestions on who to see.

Good luck!

My aortic valve stenosis got diagnosed at 56. Seems really young doesn't it? And I'm sure it was probably diagnose in my forties and I didn't realize it. It's got to be doing a lipoprotein having a high calcification level I don't know why that is maybe genetics and having low levels of HDL that's the only thing I could figure out.. I just graduated from mild moderate immoderately I have regular screenings not an angiogram but EKG is Echo Echo stress cardiogram I've been doing that goes at least every six months and nowhere near severe or even severe moderate but I'm having a lot of weird symptoms I just did an MRI 6 weeks ago and it shows my valves in my heart are working great and there's no blockages anywhere
. My exercise moderately follow a strict vegan diet work on stress reduction take all my medications to oh my screenings