Pre Surgery Questions - AVR. Based in Australia.

[jeffreycaulfield]

Hey all,

Firstly, massive shoutout to all that have contributed to this page. It's been an amazing resource. I hope to join you in helping others navigate this journey after my surgery.

I'm a 35 y/o man with a BAV. Severe Aortic regurgitation, Moderate AS. No aneurism, mildly dilated LV and turbulent flow. I've been told I will need an AVR within the next 6-12 months. I've known this was coming for the last 6 years but thought I would get a few more years before I needed surgery. When I was diagnosed in 2018 (incidental finding), I was told I wouldn't need surgery until my 50s or 60s! Anyway, I've come to terms with it and focusing on what I can control. I'm currently trying to make an informed decision on valve type and surgeon.

My cardiologist referred me to a top Ross surgeon in Australia, Mr Peter Skillington. This was my request because I didn't like the sound of warfarin and Mr Skillington has done over 500 Ross procedures. I had a consultation with him 2 weeks ago and he advised a Ross and a Mechanical as plan B. He had some great data up to the 25 year mark and I felt confident the Ross was the right choice.

Since then I've read everything I can find on this forum about the Ross and multiple studies. I have some concerns that I was hoping some people may be able to help with:
1. I can't find much on data supporting the Ross over 25 years and it seems even 20 years may be an optimistic expectation. Has anyone heard of this being a one and done operation?
2. I cant find anything describing the options when a Ross fails - Can they do TAVI? If you need OHS, is it a simple mechanical AVR or do they need to replace other anatomy or parts of the aorta?

Based on the research I've done and some amazing posts from you legends, I'm leaning towards mechanical as a plan A. Reasons are the usual ones you see on the page - sparing the pulmonary valve, less risk of reoperation. I was surprised how little Warfarin has impacted peoples lives and thought there was more long term side effects. That was the main driver for me wanting the Ross. I like to travel and go on surf trips and the thought of hitting my head while in some remote location on warfarin does scare me. Realistically, I'm getting older and don't know how many more of these trips I'll be going on.

I know some people have strong opinions on this topic but if we could keep this thread data driven, that would help me and hopefully others to come. I also know there are some Aussies in here so if anyone could recommend a mechanical valve surgeon in Sydney or anywhere in Australia, that would be appreciated!

Thanks for all your efforts! I'm so glad I found this community.

 

[pellicle]

also know there are some Aussies in here

Oioioi
Welcome aboard

Best Wishes

 

[pellicle]

Hi

well, as not much else has been added yet, and I'm up and thinking properly (laughs) now ...

I'm a 35 y/o man with a BAV.... I'm currently trying to make an informed decision on valve type and surgeon.

so to let you know, I was a 5 year old with BAV; which was "fixed" in OHS #1 when I was a10. Then I was a 28 yo with a repaired BAV who underwent OHS #2 to put in someone elses valve (a homograft). This held till I was a 48 yo with an aortic aneurysm and a calcifying leaky valve and that was replaced at OHS #3.

The unifying constant in all of this is the underlying genetic condition which manfiests as BAV and in many cases also aneurysm.

The actual reality of that and how it manifests over time is (while getting better) not yet fully understood from the perspective of cause (aetiology) but is pretty well documented statistically (which is indeed what Mendel did right back at the start of the field which became genetics.

My cardiologist referred me to a top Ross surgeon in Australia, Mr Peter Skillington. This was my request because I didn't like the sound of warfarin

so, right there how much did you actually *know* about warfarin? Why did you request that when you really may not know much? Was it all about "avoiding the warfarin boogey man"?

Be totally honest here, because if you are going to make an informed decision you need to know your own personal biases; for these will colour everything you "ingest" in reading.

Before you go any further, I urge you to become aware of how your personal desire shapes your ability to research and intrepret



next I'm going to ask you to listen to this video about becoming informed enough to even make a decision

and Mr Skillington has done over 500 Ross procedures. I had a consultation with him 2 weeks ago and he advised a Ross and a Mechanical as plan B.

so he's aware of the situation and knows that a mechanical is sensible for a man your age.

He had some great data up to the 25 year mark

and then what?
You're left with two valves which have potential problems ... surely this much is clear from your readings here (and I'll assume you've read some of my posts on the topic).

I'm 60 right now (35 + 25 = 60) and so in all likelyhood you'll need some surgery when I'm dead (I doubt I'll get to 85, but hey, back when I was in my twenties I doubted I'd get to 50), and nobody here will probably be looking at your condition or perhaps this website will no longer exist either.

So what I'm saying here is "you are on your own with this choice"

We already know well what the outcomes are of mechanical valves and warfarin. We've even got a member here who had a Starr-Edwards mechanical AVR 1967 at age 31.....

and I felt confident the Ross was the right choice.

based on?

Since then I've read everything I can find on this forum about the Ross and multiple studies. I have some concerns that I was hoping some people may be able to help with:
1. I can't find much on data supporting the Ross over 25 years and it seems even 20 years may be an optimistic expectation. Has anyone heard of this being a one and done operation?

because there isn't any ...

2. I cant find anything describing the options when a Ross fails - Can they do TAVI?

no and there are some posts on that here ...

Lets start here:
was "really happy" he got The Ross "But realy happy my docter gave me the possibility for the Ross."

then not long later sadly this.

One more "data point"

If you need OHS, is it a simple mechanical AVR or do they need to replace other anatomy or parts of the aorta?

it depends ... maybe everything else is fine, maybe something else needs replacing

here's a piece of advice you haven't asked for: do not plan on redos. There is sufficient reasons for a redo to occur (like the above endo, or your possibility of an aneurysm in the future) to not add them in. If you plan for a redo then that's a foolish act.

I like to travel and go on surf trips and the thought of hitting my head while in some remote location on warfarin does scare me.

not a reasonable nor rational actual issue. A fall such as that, no matter what, will be just as life threatening. Don't pretend warfarin makes it significantly more so.

Look at my history, observe how much travel I've done ...

The key to good outcomes on warfarin is good management. Self management (unless you're a ninny) is entirely possible and simple.

Realistically, I'm getting older and don't know how many more of these trips I'll be going on.

and also as you age your possibility of needing warfarin anyway (cites afib or other arrhythmias) increases. Must make warfarin a very bitter pill when someone who chooses a risky path with known redos to avoid warfarin finds themselves being told you need warfarin by their doctor.

When my tachycardia emerged 12 years post OHS#3 I wasn't in the slightest concerned because:

1. my cardiac health was good (so 140bpm wasn't going to cause a heart attack)
2. I was already on warfarin so no problems there either

So if after reading all this you're still interested in the mechanical side:

a presentation by Dr Schaff of the Mayo


more current video by the same fellow


Feel free to reach out for a chat on the matter if you like ... I'm in Queensland.

Best Wishes

 

[DJ-Rae09]

Hi Mate,

I live in Sydney and 2 years ago today I had OHS to replace my bicuspid with a mechanical one. I was 42 then.

I was initially referred to Dr Manu Mathur at the North Shore Private Hospital. He also recommended I have a chat with Dr Skillington which I did but my aorta was enlarged for a Ross. I ended up choosing a mechanical valve because of the durability factor.

2 years on now, managing INR and Wafarin is straight forward once you get the hang of it. My life hasn't changed at all post OHS. In fact, I'm stronger than I have ever been, I go to the gym 3-4 days a week progressively getting stronger over the past 18 months.

I can highly recommend Dr Mathur and his team for OHS. Another member on here Alex also had the same procedure as me 6 months after mine by Dr Mathur. He's also doing great!

Feel free to DM me if you want a chat or anything.

Cheers.

 

[pellicle]

Oh ... I just realised that I missed these posts about INR, because if you're actually considering a mechanical valve then you really need to know about managing warfarin, because the valve basically never has any problems. The only problem is in the post surgical management of anti coagulation therapy (warfarin)

https://www.valvereplacement.org/threads/the-philosophy-of-inr-measurement.889379/

https://www.valvereplacement.org/threads/freedom-to-roam-or-unusual-inr-testing-locations.877523/

Best Wishes

 

[acki46]

Hi @jeffreycaulfield

You've already read my surgery experience post, but I'm sharing the link again for anyone that is looking for a Sydney based surgeon:
https://www.valvereplacement.org/th...rgeon-selection-recovery-pericarditis.889022/

As Tim said - I can't speak highly enough of Dr Mathur and the team at North Shore Private for their care.

In terms of travel I have done post OHS in the last 15 months (unfortunatley most of it is work related)
- Multiple interstate trips (first one 3 months post op)
- China 3 x 2 weeks
- USA for 7 weeks just recently
- Multiple camping trips with the family

Warfarin has not impacted my ability or desire to travel:
- I take twice the Warfarin I think I'll need for my trip (1 x carry one and 1 x checked luggage)
- Bring my CoaguCheck and test a little bit more frequently if a dietary change or more alcohol is involved

The only PITA is when I have cut myself while in the water - the water and warfarin just means it takes longer for a wound to stop bleeding.

Cheers,

Alex

 

[jeffreycaulfield]

Thanks for the detailed reply @pellicle ,

Apologies for the late response, I thought I’d get a notification if someone replied.

The reason I thought the Ross was the right choice is because I was worried about the impact of warfarin on my life. I used to ride motorbikes and surf in remote locations often getting reef cuts and was worried about my blood not clotting if I was in an accident.

Since then, I’ve read lots on here and elsewhere and it seems my fears of warfarin were built on a lack of understanding about the impact it has on ones lifestyle. Also realistically my surfing is going downhill anyway as I get older and the lure of remote trips is not as strong. I’d still like to ride bikes but guess I’ll just get an awesome helmet and be super careful.

While I’m confident a mechanical valve is the right choice for me now, I spoke with my cardiologist on Thursday and he has warned about the risk of complications with warfarin if I need a knee/hip replacement in the future. Is this something you have considered?

Appreciate all the work you’ve done on this forum!

 

[jeffreycaulfield]

Hey @DJ-Rae09 ,

Thanks for your reply and congrats on your 2 year anniversary! Great to hear you’re feeling stronger than before!

I’ll check out Dr Mathur. My cardiologist has referred me to Dr Paul Jansz at St Vincent’s. Supposedly they do heart transplants there so the ICU is well equipped if anything goes wrong.

 

[jeffreycaulfield]

Thanks @acki46 ,

Your post about your surgery has really helped me set expectations. Sounds like you had some unexpected issues but glad to hear you’re feeling good now and not having any issues with warfarin and travel.

Work have given me the 2 off to recover and an option of a third at half pay if I need more time. It sounds like if there’s no complications, then 2 months should be okay.

 

[pellicle]

Hi

Thanks for the detailed reply @pellicle ,

welcome ... so, then did you see my other reply?

Apologies for the late response, I thought I’d get a notification if someone replied.

you should, assuming your using a PC not a phone step 1 and 2

then scroll down till here;

select at least that (don't rely on Push notifications)

The reason I thought the Ross was the right choice is because I was worried about the impact of warfarin on my life. I used to ride motorbikes and surf in remote locations often getting reef cuts and was worried about my blood not clotting if I was in an accident.

I have done enough diving to be more worried about the blood infections from reef cuts than bleeding.

Its not like this:

nor this

If you do an artery or a vein then its every bit the same for "normal" people ... life threatening.

Since then, I’ve read lots on here and elsewhere and it seems my fears of warfarin were built on a lack of understanding about the impact it has on ones lifestyle.

excellent, I love to read stuff like that ... I regularly gagg about this with people sending messages like "I bled to death" with a picture.

I’d still like to ride bikes but guess I’ll just get an awesome helmet and be super careful.

as you've no doubt seen so do I ... on the subject of helmets I suggest you have a read of what I put together here (link), two years after I started warfarin and nearly 10 years back now. In particular look for "the Abbreviated Injury Scale, or AIS,".

While I’m confident a mechanical valve is the right choice for me now, I spoke with my cardiologist on Thursday and he has warned about the risk of complications with warfarin if I need a knee/hip replacement in the future. Is this something you have considered?

yes, and of course it complicates things; but not horribly so (unless the ACT management is utterly incompetent, which is admittedly is most of them). Frankly I'm simply staggered at the levels of incompetency in ACT Management and how out of touch they all are with actual guidelines set by surgeons:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2795823/

Discontinuation of Warfarin Is Unnecessary in Total Knee Arthroplasty​

​

Consensus guidelines for the perioperative management of these high-risk patients recommend discontinuance of warfarin preoperatively, bridging with low-molecular-weight heparin while the prothrombin time normalizes, then resuming therapy after surgery [12].​

pretty frikkin clear innit ...

Appreciate all the work you’ve done on this forum!

hat tip, thank you ... reach out if you want to chew the fat.

Oh ... and we have something else in common it seems

https://cjeastwd.blogspot.com/2014/05/the-great-delvin.html

Best Wishes