Just found out I have a BAV

[KyleR]

Welcome! And also sorry to hear that you are needing surgery. I also had a BAV and had it replaced at 31. I chose tissue at that point because I wanted to avoid blood thinners, but that valve only lasted 8 years and I had it replaced 5 weeks ago at age 39 (turned 40 two weeks after surgery). I went with mechanical this time as I now see the wisdom of avoiding unnecessary additional surgeries, and I didn’t want a 3rd operation before I turned 50. So far warfarin hasn’t been bad but I’m still early in the game. I can see that there is a learning curve with it but it doesn’t seem overly difficult. The first couple of weeks after surgery are rough, but honestly I feel great 5 weeks out and I’m heading back to work next week. I’m even sipping a beer at the moment (following cardiologist’s permission of course). My only advice would be to not delay surgery if it is needed, as others have said. The longer you delay the more you’re playing with fire. Best of luck with your decision and surgery!

 

[pellicle]

So far warfarin hasn’t been bad but I’m still early in the game. I can see that there is a learning curve with it but it doesn’t seem overly difficult

Reach out if you want a systematic methodology

Best wishes

 

[RickAUS]

Welcome! And also sorry to hear that you are needing surgery. I also had a BAV and had it replaced at 31. I chose tissue at that point because I wanted to avoid blood thinners, but that valve only lasted 8 years and I had it replaced 5 weeks ago at age 39 (turned 40 two weeks after surgery). I went with mechanical this time as I now see the wisdom of avoiding unnecessary additional surgeries, and I didn’t want a 3rd operation before I turned 50. So far warfarin hasn’t been bad but I’m still early in the game. I can see that there is a learning curve with it but it doesn’t seem overly difficult. The first couple of weeks after surgery are rough, but honestly I feel great 5 weeks out and I’m heading back to work next week. I’m even sipping a beer at the moment (following cardiologist’s permission of course). My only advice would be to not delay surgery if it is needed, as others have said. The longer you delay the more you’re playing with fire. Best of luck with your decision and surgery!

Thank for sharing mate, glad to see you in full recovery and enjoying a nice beer . I think the writing is on the wall as to what valve, mechanical seems to be the logical way. Yeah I am kind of over the waiting, just want to get this sorted and considering my heart is in good condition bar the BAV it makes sense to get surgery. If you wouldn't mind sharing what brand of mechanical valve did you go for?

Cheers Rick

 

[RickAUS]

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


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 ;-)

My cardiologist is Chris Anthony, he has recommended Douglas Wall for surgery.

I can't see myself having any issues with the drugs and testing blood. I am pretty disciplined when it comes to this. I don't drink much and in fact I cut alcohol 3 months back to get as healthy as I can for surgery.

Nice video mate, that's out by Warrick?

Definitely going to get stuck into the Everest read! Cheers for sharing all This info it really has helped clear a few things up and definitely has helped the mind chill out.

 

[pellicle]

Nice video mate, that's out by Warrick?

yep ... just snuggled into the range. Perfect motorcycling territory.

Personally I don't buy into the "recommend a surgeon" because in the way Queensland Health is run they're all good.

This info it really has helped clear a few things up and definitely has helped the mind chill out.

no problem, and the comments about short duration in younger patients are exactly what I wanted to really talk to you about (well and a couple of other things) because that really (as you see) makes a difference.

I was just down in brisso looking at a new purchase

felt much more relaxed than my KTM 390

 

[KyleR]

Thank for sharing mate, glad to see you in full recovery and enjoying a nice beer . I think the writing is on the wall as to what valve, mechanical seems to be the logical way. Yeah I am kind of over the waiting, just want to get this sorted and considering my heart is in good condition bar the BAV it makes sense to get surgery. If you wouldn't mind sharing what brand of mechanical valve did you go for?

Cheers Rick

I got a St. Jude mechanical valve. It was the valve my surgeon typically uses and it has a long track record so I was comfortable with that. Others here can speak more intelligently about the different mechanical valves but it is my understanding that the ones on the market today are all very similar.

Also just to clarify my original post, while I feel great 5 weeks out I wouldn’t say I’m fully recovered. I walk every day and am staying active but I’m still physically limited until the sternum fully heals and I’m still a little sore. I also take a nap every day so my energy level isn’t all the way back just yet. I’m going back to the office next week but I’m going part time for the first week or two. I keep telling people the last few weeks I feel like I should’ve felt worse, but fortunately I don’t. You should do well in recovery but everyone’s experience is different. Please feel free to reach out if you have any questions, this forum has been a great resource for me personally.

 

[KyleR]

Reach out if you want a systematic methodology

Best wishes

Thanks! I will take you up on that.

 

[Beach77]

I have an On-x since December 2020 because of a BAV. It's what my doctor put in. My INR range is 2.5 to 3.

No one has heard my "ticking", even my husband. Every once in a while, at night, I'll hear it from within. If it's annoying me, I'll adjust a bit and it's quiet or I just enjoy it because it's still beating strong! Warfarin hasn't been too challenging.

For me the hard part of the surgery was deciding which valve I wanted. It was between a TAVR or mechanical. I was 64 but my heart team approved the TAVR because of my request, I was on the young side for it. LOL But they wanted me to speak with a surgeon to be sure I understood both choices. I did research about the On-X, then met with the surgeon. Then the hard decision! Once I decided for the mechanical, my surgery couldn't happen quick enough for me!

I agree with @KyleR when he said " I keep telling people the last few weeks I feel like I should’ve felt worse, but fortunately I don’t". That was me too! I felt so good compared to what I thought I was going to feel!

I am very happy with my decision and with the On-X!

Good luck with your decision and with surgery!

 

[acki46]

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

Hey Ric,

my situation is slightly different to yours in that I knew about my BAV and aortic aneurysm for the past 20 years - however this did not make it any easier to deal with the prospect of having OHS. A good way I found how to deal with this is by engaging with people on this forum and those that have had OHS surgery previously.

I am now 5 months post-op and writing this from China on a two week work trip (I also live in Australia, 38m) with my mechanical valve ticking away nicely. I have my Coagucheck with me and am managing my INR through a different diet and increased alcohol intake.

I had a lot of the same questions as you and have chronicled my journey both pre/post-op in this thread:
38/M - 5.5 weeks post AV/Root Replacment (Surgeon Selection, Recovery & Pericarditis)

Feel free to reach out if you have any questions or are just looking for a sounding board.

Cheers,

Alex

 

[Chuck C]

Hi Rick and welcome to the forum!

Sorry to hear about your diagnosis. It can really turn your world upside down to get such news and the vast majority of us have experienced getting similar news at one point or another. So, welcome to our special club- the one nobody wants to join. Still, glad that you found us. Like you, I was born BAV. I am so glad that I found this forum before my surgery, as learning from others who have faced the same situation and decisions that I faced was invaluable. It seems that you have already had some very good feedback, and I hope that you find the forum as helpful as I did.

Although it is really tough to learn of such a diagnosis, there is very good news and that is that our condition has a solution and we can go on to live normal lives.

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.

This is the big dilemna. There is no perfect valve. Either a lifetime of anti-coagulation or multiple surgeries. I was first diagnosed at age 52. After my initial due diligence, I was leaning towards a tissue valve, as I am very physically active. At the same time, who wants to face multiple operations? This is one area where this forum really helped me, in that I learned that one can still be very physically active with a mechanical valve and on warfarin. I ultimately decided that I really wanted to avoid future surgeries and chose a mechanical valve. Surgery was 27 months ago, and I can tell you that my life on warfarin is just as active as my life before warfarin. I run, bike, hike, lift weights and play in the waves at the ocean. I also participate in Brazilian Jiu Jitsu. The one thing I gave up was boxing, which I really did enjoy and I do miss, but I've filled the void just fine doing more jiu jitsu and other activities. I can also say that managing warfarin is no big deal. It is important to be diligent about taking your daily pill and having a good system in place so as not to forget a dose. I also self test, which I highly recommend.

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.

I believe that second opinions are always a good idea.

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.

It is totally normal to be scared. Personally, this forum really helped me in facing the fear of open heart surgery. Communicating with so many other people who faced OHS and came out the other side was really encouraging. Also, I'm somewhat of a numbers guy and the statistics are excellent for this procedure, especially if a person is young and in good health as you are.

My cardiologist recommended a mechanical valve off the bat.

Every guideline in the world recommends a mechanical valve at your age and, in my view, your cardiologist is correct with his recommendation.

You are doing the right thing in seeking input to help you with the decisions before you and well as the preparations. I would suggest going into surgery knowing that you will be coming out the other side and when you do so you can tell us about all of the interesting things that happened during your hospital stay

Best of luck in your upcomming procedure. Please keep us posted along your journey and during your recovery.

 

[RickAUS]

Hey Ric,

my situation is slightly different to yours in that I knew about my BAV and aortic aneurysm for the past 20 years - however this did not make it any easier to deal with the prospect of having OHS. A good way I found how to deal with this is by engaging with people on this forum and those that have had OHS surgery previously.

I am now 5 months post-op and writing this from China on a two week work trip (I also live in Australia, 38m) with my mechanical valve ticking away nicely. I have my Coagucheck with me and am managing my INR through a different diet and increased alcohol intake.

I had a lot of the same questions as you and have chronicled my journey both pre/post-op in this thread:
38/M - 5.5 weeks post AV/Root Replacment (Surgeon Selection, Recovery & Pericarditis)

Feel free to reach out if you have any questions or are just looking for a sounding board.

Cheers,

Alex

Hi Alex,

Thanks for reaching out and sharing your journey, really does help settle the mind know that life goes on after OHS. I will defs take your tips on the mask wearing and chest shaving pre-surgery I have both young kids and a hairy chest LOL.

Business in China = Lots of food and drinks.

Safe travels

 

[RickAUS]

Hi Rick and welcome to the forum!

Sorry to hear about your diagnosis. It can really turn your world upside down to get such news and the vast majority of us have experienced getting similar news at one point or another. So, welcome to our special club- the one nobody wants to join. Still, glad that you found us. Like you, I was born BAV. I am so glad that I found this forum before my surgery, as learning from others who have faced the same situation and decisions that I faced was invaluable. It seems that you have already had some very good feedback, and I hope that you find the forum as helpful as I did.

Although it is really tough to learn of such a diagnosis, there is very good news and that is that our condition has a solution and we can go on to live normal lives.


This is the big dilemna. There is no perfect valve. Either a lifetime of anti-coagulation or multiple surgeries. I was first diagnosed at age 52. After my initial due diligence, I was leaning towards a tissue valve, as I am very physically active. At the same time, who wants to face multiple operations? This is one area where this forum really helped me, in that I learned that one can still be very physically active with a mechanical valve and on warfarin. I ultimately decided that I really wanted to avoid future surgeries and chose a mechanical valve. Surgery was 27 months ago, and I can tell you that my life on warfarin is just as active as my life before warfarin. I run, bike, hike, lift weights and play in the waves at the ocean. I also participate in Brazilian Jiu Jitsu. The one thing I gave up was boxing, which I really did enjoy and I do miss, but I've filled the void just fine doing more jiu jitsu and other activities. I can also say that managing warfarin is no big deal. It is important to be diligent about taking your daily pill and having a good system in place so as not to forget a dose. I also self test, which I highly recommend.

I believe that second opinions are always a good idea.


It is totally normal to be scared. Personally, this forum really helped me in facing the fear of open heart surgery. Communicating with so many other people who faced OHS and came out the other side was really encouraging. Also, I'm somewhat of a numbers guy and the statistics are excellent for this procedure, especially if a person is young and in good health as you are.

Every guideline in the world recommends a mechanical valve at your age and, in my view, your cardiologist is correct with his recommendation.

You are doing the right thing in seeking input to help you with the decisions before you and well as the preparations. I would suggest going into surgery knowing that you will be coming out the other side and when you do so you can tell us about all of the interesting things that happened during your hospital stay

Best of luck in your upcomming procedure. Please keep us posted along your journey and during your recovery.

Hi Chuck,

Thanks heaps for sharing on your experiences and advice. So good to see you super active and living it up! I really do believe my mind is made up on the mechanical so this is a big relieve. Now I just need to get this surgery done and dusted and get on with life : )

Yeah I have found this forum to be awesome, so many people have reached out to help : )

I will definitely post updates as I go.

Cheers Ric

 

[budparks]

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

I’m 75. Had a mechical valve at 62. Warfarin has not been a problem. No ill effects at all. Seems to affect people in different ways. Good luck.