My journey thus far

[Flymark]

Hi Folks:

First, let me say thank you for all your contributions; not only those concerning the medical aspects of our hearts, but the ones that put our issues in the context of everyday life.

My story is pretty typical. My first cardiologist appointment, at age 50, was made because I was really fatigued following routine lawn / garden work. My father had OHS for CABG when in his early sixties and my triglycerides were always a little high.

But when the cardiologist first diagnosed me with moderately severe aortic regurgitation (no stenosis), I was stunned. He confirmed by cardiac MRI and ran everything else (thankfully, my calcium CT score was zero). Nevertheless, I was stunned and then numbed. Over the next few months I spent many hours online, driving through the various literature. This lasted a good three-four months. I would be at work, and I would spend several hours trying to understand journal articles, leafing through abstracts, and looking for a primer to help me understand even the most elementary hemodynamics.
I remain defeated in the later. Any newbies reading this, I highly recommend, "The Heart Made Easy" by Carl Robinson.

Things settled down a little and I was on the six-month appointment schedule with the local cardiologist, but still had questions: ultimately reduced to "when"? I understood early in the game that the timing question was answered using a combination of objective parameters and symptomatology. But it roiled me that I couldn't get a more firm objective parameter out of my local cardiologist. I was only 50, my kids were in their early teens. So, I continued searching on my own.

The more I read, I realized that then-current objective measurements for aortic insufficiency were in a state of flux, with the older AHA/ACC guidelines yet to incorporate the new studies incorporating advancements in diagnostic imaging, e.g, strain. Two things concerned me most. First, that I would miss my window and my heart would be permanently damaged by having the surgery too late. Second, that given my age, I could wind up having two or three valve replacement surgeries before I turned into worm food.

One night I stumbled onto a Cleveland Clinic podcast with Drs. Gilinov and Griffin, discussing timing of aortic valve surgery and the increasing ability of surgeons to make valvular repairs. I made an appointment the following day and am now under Dr. Griffin's care (no surgery consult yet) and while he can't answer 'when' (I would be dubious if he could), I have some rough idea of a timeframe. Most importantly, I have complete confidence in his assurance that, "I won't let you go too long." So, my last treadmill stress echo I performed 13.6 Mets at 107% of predicted max heart rate; showing -16.3% global peak longitudinal strain, 64 LVEF (2d 4-ch), with a moderately severe (3+) aortic valve regurgitation. Tricuspid aortic valve. Mild thickening. What does that mean? No surgery right now. Another half year to shed a few pounds and get in better shape. According to Dr. Griffin, having better aerobic fitness will let you feel the symptoms earlier.

To all of you whose posts I've lurked through, a big thank you for all the advice provided and experiences shared. I'm sure I will start looking more closely at posts about the pre and post-surgery issues in a couple of years. But for now, I'm here if I can help any of you who are going through what I did.

Best,
Mark

 

[Protimenow]

Welcome to this site.

I'm confused by your prediction that you may need 2 or 3 valve replacements during your life. Sure, tissue valves may be getting better, and work on repairing valves (TAVR or TAVI) seems to be progressing, but having a mechanical valve, for most of us, is not a problem - and these should keep working well for the rest of our lives. At 50, I strongly suggest considering a mechanical valve.

Yes, mechanical valves require that you take warfarin, and regularly test your INR. MANY of us on this site (including me) have been self-testing and self-managing. Others are using services that provide the meters and supplies, report results to doctors, and overcharge insurance companies for the service.

The point is - self-testing is easy once you've done it a few times. Weekly testing is probably the safest interval for testing. Aside from clicking, the mechanical valves really don't affect our activities or quality of life.

I hope your doctors at Cleveland Clinic answer all your questions, that you're comfortable with what they tell you, and that all things cardiac go well for you.

I'm sure that many of us are here if you have more questions or just need a virtual hug or two.

 

[pellicle]

Welcome aboard Mark

As @dick0236 always says, just eat the elephant one bite at a time.

According to Dr. Griffin, having better aerobic fitness will let you feel the symptoms earlier.

I agree completely, and will also make recovery easier.


Best Wishes

 

[Flymark]

Welcome to this site.

I'm confused by your prediction that you may need 2 or 3 valve replacements during your life. Sure, tissue valves may be getting better, and work on repairing valves (TAVR or TAVI) seems to be progressing, but having a mechanical valve, for most of us, is not a problem - and these should keep working well for the rest of our lives. At 50, I strongly suggest considering a mechanical valve.

Yes, mechanical valves require that you take warfarin, and regularly test your INR. MANY of us on this site (including me) have been self-testing and self-managing. Others are using services that provide the meters and supplies, report results to doctors, and overcharge insurance companies for the service.

The point is - self-testing is easy once you've done it a few times. Weekly testing is probably the safest interval for testing. Aside from clicking, the mechanical valves really don't affect our activities or quality of life.

I hope your doctors at Cleveland Clinic answer all your questions, that you're comfortable with what they tell you, and that all things cardiac go well for you.

I'm sure that many of us are here if you have more questions or just need a virtual hug or two.

Hi Protimenow:

Thank you for you great reply.

One of the reasons I love this board is the knowledgebase of its membership. You picked right up my comment about 2 or 3 valves, correctly being directed to biopro valves, rather than mechanical. I haven't given much thought about the bio versus mechanical yet, but I am predisposed, albeit without sufficient research, to biopro. I'm 52 now, with an active lifestyle, including tennis and downhill skiing. My older brother had juvenile Type I diabetes, my father Type II (developed around 60). So, self-testing doesn't bother me one bit. I don't know about the clicking noise, as I also wear hearing aids, and that could get old real soon. I guess I figured if I went biopro (when the time comes), that in 10-15 years after that valve-in-valve TVR may be fairly well enough along.

But, as pellicle quoted . . .one thing at a time.

PS I'm also a commercial pilot (CFII-MEI), and although not active I would like to eventually return. So, I would have to see where FAA Aeromedical stands on mechanical versus biopro.

Best,

Mark

 

[pellicle]

Hi

but I am predisposed, albeit without sufficient research, to biopro. I'm 52 now, with an active lifestyle, including tennis and downhill skiing.

I'd side stepped this, because ... well ...

Anyway, as you now mention fit and active; it is my observation here that young fit and active is exactly the type to get to get the lowest end of the projected time scales out of a bioprosthetic. If nothing else go flick through the posts on how old is your valve and you will not find most of the posts for over 15 years being the fit active hikers. Indeed you will find many saying (in disparate threads which I have not collated) "my valve failed earlier than I'd hoped, but I knoew what I was getting in for (did they?) and accept that". I see most lengthy duration bioprosthetic valves being owned by indoor types who's major exersize is the occasional flight of stairs and getting to and from the office. Yes we have a few here who go to the gym regularly but they are all older than 60 when they had their valve ...

Its an irony that those most predisposed to a valve that is proven durable (they simply do not fail in any meaningful numbers) the people who will be hardest on their valves (pushing fitness levels and increased HR daily) are the younger and the evidence is that the younger (who are statistically not the norm for AVR either) are precisely the ones who benefit most from a mechanical.

Its another sad irony that with very few exceptions everyone who commences AC therapy reports "it was a nothing in my life" ... which strangely enough is ignored by these same people when doing their "analysis" pre surgery.

Its not like this when you get a shaving nick:

although it seems to be this in pre-surgery analysis of life on warfarin

The reality for life on warfarin is pretty simple:

• don't micro manage (especially with respect to food)
• test weekly
• have a system for your drugs (based around a pill box and a regular time to take; eg dinner)
• keep to your target

My prediction is that for a fit and active hiking 50 year old you'd get about 10~15 years (not more) on a tissue prosthetic, you may (and this happens to 10% or so) require ongoing warfarin even on a tissue prosthetic (much be a bitter pill for those who picked tissue solely to avoid warfarin) because of stuff like AF emerging post surgery.

In contrast since I've had my mechanical I have had a number of small surgical procedures, none of which presented even the slightest issues, many dental procedures (again not the slightest issue), I ski, I do stuff, I cycle and I scooter.

doing stuff with sharp things alone:
https://cjeastwd.blogspot.com/2018/01/raising-roof.html
scootering


some additional reading

http://cjeastwd.blogspot.com/search/label/INR
bottom line: heart valve surgery exchanges valvular heart disease for prosthetic valve disease. You get to pick from two branches.

• with a bioprosthesis if you live long enough you will require another surgery; where in the lead up you will suffer Structural Valve Degradation which will give you another cycle of lowered fitness level which after another surgery to replace that valve.
• with a mechanical valve you will only require surgery to replace that if you suffer some other condition (mainly an aneurysm, could be pannus if you have a small diameter valve and or are female) that drives its replacement. You will need to manage your own INR or suffer the fools at clinics.

I can say that I've trained a number of people (some here still) with the basics of how to manage themselves. I still am involved in managing one or two who at various intervals contact me with questions. All lead "normal lives".

Best Wishes

 

[Flymark]

Well it's certainly more interesting than picking out bedroom furniture with my wife. . . Seriously, the earlier research I saw provided a year-over-year greater mortality rate for those with mechanical valves. Many of these statistics may have been found in literature I found in my early research (about the Ross). Which brings me to this question.

Before I get started down the mechanical v. biopro decision tree, I would love to confirm an answer to a long-standing question of mine. Now, in light of your comments about trading valvular heart disease for prosthetic valve disease you may want to cover your ears.

Early in my research I came across the Ross procedure. I know, trading one heart valve issue for two. But, as I am in the Ross-eligible age cohort, I wanted to investigate an autograft approach which provided a return to normal life expectancy. I know I would be trading one heart valve "issue" for two, but given all other factors, why not give serious consideration to a procedure which provides you with another your own valve in place of the one removed. And places the artificial value in a part of the heart where there is far less pressure to deal with. The one thing I could never get a firm answer to was whether Ross is performed in cases of pure aortic regurgitation, without stenosis. I think the answer is no, but would love to confirm with people here.

Pellicle, I will absolutely take a hard look at the links you provided and when the time for sx comes, use that in my discussions with the cardiologist and surgeon.

Best,

Mark

PS Great pics!

 

[pellicle]

Seriously, the earlier research I saw provided a year-over-year greater mortality rate for those with mechanical valves

I would suggest that is mainly linked to inadequate management of INR, but so far I've never seen such a study.

I would look carefuly at not just mortality but what other stuff goes wrong with reoperations.

Ultimately I have no vested interest in what you choose, and there may be things which are not disclosed that I can't take into account.

Surgeons are strongly biased towards tissue because people are numbskullz when it comes to INR management. I have a good friend who worked as the senior pathologist for a hospital (we went to school and then uni together) and hes given me many stories of "failure to comply" with taking the pills, leading to strokes and clagged up valves.

So if you're not someone who takes their own health in their hands then I suggest you get a tissue valve. If you are the sort of person who seriously wants to do stuff in a practical and real way to maximise your quality of life then I suggest you consider the mechanical alternative.

Early in my research I came across the Ross procedure. I know, trading one heart valve issue for two.

It will not sit well with some people but my view on the Ross is that its only place in the repertoire is to give the very young the ability to have a surgery that will allow them to grow. There is no evidence that it provides a better outcome than a cryopreserved homograft valve (which I had on my second surgery) and a ton of self evident analysis that shows that it doesn't ruin a good valve in the process.

I believe Arnie would not be in for as many surgeries had he been steered towards the mechanical direction from the start.
https://www.valvereplacement.org/threads/schwarzenegger-had-another-ohs.887733/
His subsequent reops have been to fix stuff that shouldn't have been done in the first place. I know that will upset some people but there you go.

Indeed the only serious competitive power lifter we have in the group has a mechanical.

I've had 3 OHS in my life, starting at 10 or 12, its fair to say that my choice in doing my degree in Biochemistry was directed by my childhood experiences and so have spent more than a few weeks thinking about this.

I believe there is sufficient evidence to demonstrate that aell managed INR will put you in the normal age expectancy for your lifestyle. Perhaps better.

This is the story of a fellow who I spent a lot of time helping with both choice and INR management

https://www.valvereplacement.org/threads/a-members-survival-story.874083/
Glad you liked the pictures

Now, its back to the fixing of the lawn mower

Best Wishes

 

[dick0236]

When I had the surgery life expectancy for a person born in 1936 (my birth year) was 73.....I blew thru that 12 years ago. My "normal life expectancy today is 78.....I blew thru that 7 years ago. My current age is 85 and I really don't pay much attention to life expectancy stats anymore........oh, and I did this on one very old first-generation mechanical valve.

When I got mine, it was the only valve on the market. The "modern" stuff like Ross Procedures, Tissue valves etc weren't even off the drawing boards yet. Whatever you get today will be improved on tommorrow. Don't spend a lot of time worrying about what's coming down the road. My biggest concern would be the product that will keep me away from my next surgery as long as possible.

 

[pellicle]

Pellicle, I will absolutely take a hard look at the links you provided and when the time for sx comes, use that in my discussions with the cardiologist and surgeon.

I think informing yourself and widening your search is a good idea. I think there is nothing wrong with changing view points from one to the other and back again, for that shows you've been truly considering.

I recommend this (grab a coffee and a notepad) presentation which is from the Mayo Clinic (but they kept moving it around)



Also, dig through some of Dicks post, he has one of the original "cell smasher" ball and cage valves and its last him over 50 years now.

Best Wishes