Just found out I have a BAV

[RickAUS]

Hi there,

First post here, as the heading states I have a BAV, I found this out 3 months ago! I am 40 years of age, I have server regurgitation and will be meeting my surgeon in 4 - 6 weeks.

So I guess I have a million questions to ask, I don't even know where to start! On the top of the list;

Valve choice. For me I would love to stay away from blood thinners but is it worth having a second surgery or potentially a third? Not only will this be hard on the body and mind but my family as well. On the opposite side is it possible to live an active life when on blood thinners, can I still rock climb, travel into remote Outback Australia, and continue to work with sheet metal and tools? I would be grateful if some active people could share their experience with having a mechanical valve and life on blood thinners.

Surgeon choice. My specialist has recommended a surgeon, he has also said that he can do a referral for other surgeons if I would like a second opinion. What is the normal process here? Can anyone recommend Brisbane, QLD based surgeons?

How to mentally deal with having OHS. I find this has been a big strain on me, I have had all walks of life tell me there is nothing to worry about. This kind of surgery happens everyday and you are young, fit and healthy. To be honest I am scared and really have no clue what to expect.

I will leave it at that for my first post, apologies for a needy first post.

Cheers
Ric

 

[pellicle]

Hi
and welcome

Can anyone recommend Brisbane, QLD based surgeons?

you can't go wrong with Dr Jalali (my surgeon) over at Chermside or any of the team at St Andrews. Jalali is not the guy to go to if you want hand holding look into your eyes bedside manner, but in tough circumstances this small quietly spoken guy stood by me (before I got to open my mouth) in a contest of wills and blame in a post surgical situation. He's probably one of the most active teaching surgeons in Brisbane.

How to mentally deal with having OHS

accept that you need it, understand that you're a passenger, know that its pretty safe, gear up for following instructions.

IMO get a mechanical (because age) unless you're a total loss at being dilligent and organised with self management of the drug. Its not hard it just requires that you don't faff around with it.

I wrote this nearly 10 years ago, its still what I think
http://cjeastwd.blogspot.com/2014/01/heart-valve-information-for-choices.html
I messaged you.

Best Wishes

 

[Superman]

I’m 50 years old. Taking warfarin for over 32 of those years. Here I am this year hiking out of the Grand Canyon. I’ve been to the bottom two years in a row now. About to head to the Canadian Rockies and we have white water rafting booked. I used to do a bit of mountain biking in my 20’s. My wife and I have five kids. All of them fathered while on warfarin. I’ve done building projects and such around the house. I pruned some trees with a saw while up on my roof this weekend.

Warfarin does not put you in a bubble. You do have to be aware but not obsessive about it. I won’t tell you which way to go with valve choice, that’s your call and has to pass your sleep at night test. I can just tell you that I sleep just fine. And when I wake up, I take my meds. Then I get on with my day.

Good luck! It is a big deal to you. I think everyone here understands that - so you’re in the right place.

 

[Timmay]

I’m fairly new to this. Mech valve put in about 14 months ago.

I work on vehicles a lot.
I work on my house a lot.
I go shooting a lot.
I handle saws and sharp objects (lol)
Yesterday I got carved up by a stray cat I captured.

Truly, warfarin hasn’t affected me much. I manage my own and give thanks to the person here who helped me learn that (you know who you are).

Good luck and God Bless. Regarding valve choice, if I was 40 there’s no way I’d choose a tissue valve. Might last 5 years. Maybe 10-15 for a very active person. But, who knows. Their longevity is all over the place depending on age, activity, and your biology.

 

[dick0236]

I'm 87 and received my first, and only, mechanical valve when I was 31. I have lived an active life without undo concern about "blood thinners". If you have the simple discipline to take a daily pill and perform a simple 10-minute test every week or two you can handle anticoagulant therapy. I can't think of anything that I haven't done, that I wanted to do, while on warfarin.

Frankly, I am glad that only one valve, mechanical, was on the market when I got mine in 1967.

 

[Gail in Ca]

The 11 years I got from my tissue valve at age 34 passed by VERY quickly. I ended up having 3 surgeries due to bacterial endocarditis requiring a third.
I think when you are healthy and fit, your surgery will go well. I remember my first surgeon commented that I was fit and on the thin side. That was a positive for him regarding surgery for me.
Taking warfarin has never been an issue for me. I was the gardener for my home, so did pruning, planting, etc. My exercise was step and weight machines, then Pilates then Yoga and machines.
I did hear the valve when I got mechanical but got used to it as part of life. I play clarinet in a great wind band and no one notices my ticking valve.
I do bruise easily and sometimes large but it’s just a bruise!
Otherwise, I live life.

 

[Jerry D]

I had OHS and an Edwards Lifesciences tissue valve at age 69--I am now 74. I am a competitive 6-man outrigger canoe coach and paddler. I exercise daily (kettlebell mostly) and do major work around the house and still work full time. I am on Xeralto for A-fib (fairly common after OHS). I hated going on the blood thinner, but have get used to it over time. BTW, I never had high blood pressure or high cholesterol, but went on medications for both after the OHS. Surgeon said it was prophylactic.

 

[Zoltania]

How to mentally deal with having OHS. I find this has been a big strain on me, I have had all walks of life tell me there is nothing to worry about. This kind of surgery happens everyday and you are young, fit and healthy. To be honest I am scared and really have no clue what to expect.

People can say it's no big deal, but it's a big deal when it happens to you, especially if you haven't had major surgery before.

If you're the kind of person for whom information is power, check out the pinned threads in the pre-surgery and post-surgery forums:

Pre-surgery list of questions
What to take to the hospital
What surprised you about surgery

You can also search the archives for people's stories.

If having too much information just makes you worry more, then you can focus on the emotional side of things... there is plenty of advice on that here too.

Surgery is not something people would eagerly volunteer for, but it is manageable and the challenging part is only temporary. I have seen many people here, including myself, show up as scared newcomers and become regular members of the community, sharing what they have learned with the next set of newcomers and enjoying their healthy lives.

 

[pellicle]

People can say it's no big deal, but it's a big deal when it happens to you, especially if you haven't had major surgery before.

I've read that the biggest stressful issues that people face are buying a home and a divorce. While the actual reality of this surgery is probably less profound a change the shock to someone who's never considered heart surgery (and its not commonly discussed in the public) must be at least as significant as those two (and you've had more preparation for knowing about them).

so @RickAUS do as **** suggests "eat the elephant one bite at a time"

 

[pellicle]

Hi

quick question

I had OHS and an Edwards Lifesciences tissue valve at age 69--I am now 74.

At 69 I think you made a good choice, however as the OP is something like 29 years younger, do you think you'd have got 29 years out of the Edwards valve? If the goal was to avoid "blood thinners" would you really sort of imply a person to go that way? Isn't this more or less a total certainty of another surgery (perhaps 2) that you are sort of suggesting?

If the goal was to avoid blood thinners (organ music chord) then I would suggest that the OP takes up with Chermside hospital and looks very seriously at a homograft. That hospital has the best record in the world for cryopreserved tissue valves.

https://pubmed.ncbi.nlm.nih.gov/11380096/

...For all cryopreserved valves, at 15 years, the freedom was 47% (0-20-year-old patients at operation), 85% (21-40 years), 81% (41-60 years) and 94% (>60 years). Root replacement versus subcoronary implantation reduced the technical causes for reoperation and re-replacement (p = 0.0098).​

Conclusion: This largest, longest and most complete follow up demonstrates the excellent advantages of the homograft aortic valve for the treatment of acute endocarditis and for use in the 20+ year-old patient. However, young patients (< or = 20 years) experienced only a 47% freedom from reoperation from structural degeneration at 10 years such that alternative valve devices are indicated in this age group. The overall position of the homograft in relationship to other devices is presented.​

The surgeons in that list actually did my surgery and Dr Stafford was the head of Cardiothoraccic surgery there. Dr Jalali (whom I mentioned) was later trained by Greg and (I understood) when Greg retired Dr Jalali took over as head.

The stats there are pretty compelling

 

[RickAUS]

Hi
and welcome

you can't go wrong with Dr Jalali (my surgeon) over at Chermside or any of the team at St Andrews. Jalali is not the guy to go to if you want hand holding look into your eyes bedside manner, but in tough circumstances this small quietly spoken guy stood by me (before I got to open my mouth) in a contest of wills and blame in a post surgical situation. He's probably one of the most active teaching surgeons in Brisbane.


accept that you need it, understand that you're a passenger, know that its pretty safe, gear up for following instructions.

IMO get a mechanical (because age) unless you're a total loss at being dilligent and organised with self management of the drug. Its not hard it just requires that you don't faff around with it.

I wrote this nearly 10 years ago, its still

Hi
and welcome

you can't go wrong with Dr Jalali (my surgeon) over at Chermside or any of the team at St Andrews. Jalali is not the guy to go to if you want hand holding look into your eyes bedside manner, but in tough circumstances this small quietly spoken guy stood by me (before I got to open my mouth) in a contest of wills and blame in a post surgical situation. He's probably one of the most active teaching surgeons in Brisbane.


accept that you need it, understand that you're a passenger, know that its pretty safe, gear up for following instructions.

IMO get a mechanical (because age) unless you're a total loss at being dilligent and organised with self management of the drug. Its not hard it just requires that you don't faff around with it.

I wrote this nearly 10 years ago, its still what I think
http://cjeastwd.blogspot.com/2014/01/heart-valve-information-for-choices.html
I messaged you.

Best Wishes

Hi mate,

Thanks so much for sharing! My referred surgeon is at St Andrews in Chermside : )

Your article on valve choice was a great read, I have to wonder if there has been a change in trend in the last couple of years. My cardiologist recommended a mechanical valve off the bat.

I think after reading through all the comments I feel a mechanical valve is definitely the best option.

 

[RickAUS]

View attachment 889384

I’m 50 years old. Taking warfarin for over 32 of those years. Here I am this year hiking out of the Grand Canyon. I’ve been to the bottom two years in a row now. About to head to the Canadian Rockies and we have white water rafting booked. I used to do a bit of mountain biking in my 20’s. My wife and I have five kids. All of them fathered while on warfarin. I’ve done building projects and such around the house. I pruned some trees with a saw while up on my roof this weekend.

Warfarin does not put you in a bubble. You do have to be aware but not obsessive about it. I won’t tell you which way to go with valve choice, that’s your call and has to pass your sleep at night test. I can just tell you that I sleep just fine. And when I wake up, I take my meds. Then I get on with my day.

Good luck! It is a big deal to you. I think everyone here understands that - so you’re in the right place.

Thank you for sharing, so good to see you living it up in the outdoors. Enjoy the Canadian rockies! White water rafting is definitely on my list of things to do.

 

[RickAUS]

I’m fairly new to this. Mech valve put in about 14 months ago.

I work on vehicles a lot.
I work on my house a lot.
I go shooting a lot.
I handle saws and sharp objects (lol)
Yesterday I got carved up by a stray cat I captured.

Truly, warfarin hasn’t affected me much. I manage my own and give thanks to the person here who helped me learn that (you know who you are).

Good luck and God Bless. Regarding valve choice, if I was 40 there’s no way I’d choose a tissue valve. Might last 5 years. Maybe 10-15 for a very active person. But, who knows. Their longevity is all over the place depending on age, activity, and your biology.

Thanks Timmay,

Yeah mechanical seems the safest option, from what I can see peeps seem to manage warfairn just fine. Cheers for sharing : )

 

[RickAUS]

I'm 87 and received my first, and only, mechanical valve when I was 31. I have lived an active life without undo concern about "blood thinners". If you have the simple discipline to take a daily pill and perform a simple 10-minute test every week or two you can handle anticoagulant therapy. I can't think of anything that I haven't done, that I wanted to do, while on warfarin.

Frankly, I am glad that only one valve, mechanical, was on the market when I got mine in 1967.

Thanks ****, really appreciate you sharing this. Yeah regard the mech valves there are so many to choose from now and it kind of seems like a gamble for me to pick one. Might just have to see what the surgeon recommends.

 

[RickAUS]

The 11 years I got from my tissue valve at age 34 passed by VERY quickly. I ended up having 3 surgeries due to bacterial endocarditis requiring a third.
I think when you are healthy and fit, your surgery will go well. I remember my first surgeon commented that I was fit and on the thin side. That was a positive for him regarding surgery for me.
Taking warfarin has never been an issue for me. I was the gardener for my home, so did pruning, planting, etc. My exercise was step and weight machines, then Pilates then Yoga and machines.
I did hear the valve when I got mechanical but got used to it as part of life. I play clarinet in a great wind band and no one notices my ticking valve.
I do bruise easily and sometimes large but it’s just a bruise!
Otherwise, I live life.

Yeah that's hectic Gail, I am hearing this from a few people who picked a tissue valve. Thanks for share your experiences on warfarin, so good to see life goes on.

 

[RickAUS]

I had OHS and an Edwards Lifesciences tissue valve at age 69--I am now 74. I am a competitive 6-man outrigger canoe coach and paddler. I exercise daily (kettlebell mostly) and do major work around the house and still work full time. I am on Xeralto for A-fib (fairly common after OHS). I hated going on the blood thinner, but have get used to it over time. BTW, I never had high blood pressure or high cholesterol, but went on medications for both after the OHS. Surgeon said it was prophylactic.

Thanks Jerry. I am on blood pressure and cholesterol meds as well, I have no issues with blood pressure however my cardiologist advised i should, I hated the first 3 weeks. Now that I am used to them I just get on with it.

 

[RickAUS]

People can say it's no big deal, but it's a big deal when it happens to you, especially if you haven't had major surgery before.

If you're the kind of person for whom information is power, check out the pinned threads in the pre-surgery and post-surgery forums:

Pre-surgery list of questions
What to take to the hospital
What surprised you about surgery

You can also search the archives for people's stories.

If having too much information just makes you worry more, then you can focus on the emotional side of things... there is plenty of advice on that here too.

Surgery is not something people would eagerly volunteer for, but it is manageable and the challenging part is only temporary. I have seen many people here, including myself, show up as scared newcomers and become regular members of the community, sharing what they have learned with the next set of newcomers and enjoying their healthy lives.

Hi Zoltania,

I have avoided doctors and hospitals for 40 years, this was a bloody shock I tell you. I remember seeing my father in-law after his OHS and I told my wife I never wanted to be in that position, well isn't life grand lol.

Definitely an information guy, thanks for sharing the links. I will get stuck into these.

Very glad I found this forum, just having people share there experiences has helped easy my mind. Cheers for sharing.

 

[pellicle]

I have to wonder if there has been a change in trend in the last couple of years.

the only change I see is that now tissue valve makers do shorter actual follow up evaluations and longer projections.

My cardiologist recommended a mechanical valve off the bat.

It's not terribly likely, but its not Dr Christopher Raffel is it? Either way I'm on the same page as your cardio.

some other interesting reading

https://www.ahajournals.org/doi/10.1161/JAHA.120.018506
also, if I was you, I'd take the stance early that everything you know about being on warfarin is probably wrong. I've been back and forward to Finland a few times since my OHS, naturally my Coaguchek comes with me so that I can continue my weekly blood testing. If that sounds horrible well just thank god you aren't diabetic and need to blood test 4 or so times every DAY.
As to activity, riding motorcycle, eScooter and bicycle I enjoy skiing.



With respect to exercise level, I submit this

https://www.newsweek.com/my-turn-climbing-everest-bionic-heart-99749
Speaking of "the elephant" please, take reading this one byte at a time (and consider it a reference for the future if you end up picking mechanical)

http://cjeastwd.blogspot.com/search/label/INR
in terms of a book, the above is presented in reverse chapter order (because blogger isn't a book ;-)

 

[treichert0312]

Welcome Ric - sounds like you have all the info you need - nonetheless…
I opted for bio valve - surgeon put in the bovine first, did not like the function, so traded up for porcine. Haha - no blood thinner!
Haha on me - I am very active - porcine valve could not keep up and failed after 8 years. The cardiologists I saw that time were unanimous- mechanical all the way. Even my previous surgeon recommended mechanical.
Last June I got the mechanical install. 6-8 weeks down while the bone heals, walking - breathing exercises- 6 months later I’m ripping up Killington - ski hill in Vermont. Biking all the time - living large.

Best time for OHS is when you are healthy in good shape. You’re going into the ring against Mike Tyson with a knife, and you’re sedated. So the first week is bad. Once they take the tubes out it’s 150% better, and no looking back!
Except when you post on this site to tell your story to fellow travelers.
Warfarin is not a big deal. I was afraid of bleeding out and that just ain’t so. Bruises take an extra week to heal. I am more concerned about being too low and running a clot so it is important to stay on that.
Tons of good info here!

 

[pellicle]

Hi

Welcome Ric - sounds like you have all the info you need - nonetheless…
I opted for bio valve - surgeon put in the bovine first, did not like the function, so traded up for porcine. Haha - no blood thinner!

just wondering, your bio doesn't mention your age, but the earliest date in there is 1979, which assuming that was your birth date makes you 44

The OP mentions their age is still younger than that

! I am 40 years of age, I have server regurgitation and will be meeting my surgeon in 4 - 6 weeks.

however I'm guessing you're more than 60. I think its a bit misleading to say what you did without the parameters (like talking about what ski you use without mentioning you live in Finland, the typical snow depth and the lack of hills and you know the asker usually skis Australia).

I'm a bit curious about the underlined points in your bio ... I had to check twice I was looking at the right one.

So @RickAUS pro tip: always check the about on a poster for details needed some answers.

To do this follow steps 1 trough 4:

Best Wishes