BAV surgerye

[Guest]

Hi, I came across this forum as I've just found out I require surgery to fix my BAV . It's something I was born with but has never troubled me. Even up until now I've never had any symptoms. Recently I went to my gp for a standard check up where he found the murmur. Since then I've had tests done and found my heart is enlarged due to the leaking valve and to fix the problem I need OHS. I see him again on October 18 to find out when I require surgery.
I'm a healthy 39yo never had any surgeries or medically anything wrong with me in the past so this is so daunting and feels like the worst possible news I could imagine.
So I've been on here and seen some great advice but haven't seen much about the first 2 weeks in terms of pain and just how bad it is straight after the op. Not sure if I really want to know but just how bad is it? Some days I feel like yep i'll be right , then I have down days where I think I'm stuffed. (Don't like those days)
I also regularly go to the gym and lift weights as I enjoy it and I like being fit and healthy but also read here that lifting heavy weights may not be good for the aortic valve. What's more beneficial to keeping fit, weights or cardio? I also thought once surgery is done there would be just the standard yearly check up to make sure everything's working well but as I require a new mechanical valve I believe I will be on blood thinners for the rest of my life. Is it as simple as taking a tablet a day or does this need testing? If so, how do you do the tests?
On top of all this i have high blood pressure, always around the 140's to 150's, a separate issue which will need addressing once surgery is done. So my heart is working pretty damn hard at the moment.

 

[pellicle]

well I don't know about "the worst possible news you could imagine" ...

yes you'll be right, and yes you'll have some challenges but in a few years you'll look back and say "what was I worried about"

My view is that life is so easy these days that "horrifying news" is you dented your car in the parking lot after you paid to have it polished.

Let me suggest a "worse news":
* you've instead found out that you've got a cancer that's incurable and you'll die slowly with no hope of more than a few months remission here and there, the cancer is inoperable due to it being in your brain. Your family refuses to let you die in pain and they mortgage the family home to buy you some time. You die knowing they'll be left behind in poverty.

In complete contrast OHS for Aortic Valve Replacment has about the highest possible recovery rate of any surgical intervention.

I'm afraid you're stuck here and being back to normal soon.

Hopefully all this will actually (if you choose to allow it) give you a new perspective on life and that you don't return to "normal" but improve. That you discover what is and isn't really important in life.

you ask about the pain ... well there is thread after thread here (google it) on "wow, the pain was nothing" and "it was much easier than I thought"

We have drugs now days and they actually work really well. You'll be a bit stiff and sore for a bit but like I said, in a little while you'll be wondering what all the fuss was about. Next thing you'll be telling people how easy it was and suggesting redo surgery because the horror of the first surgery wasn't so bad after all.

Best Wishes and I wish you a smooth recovery.

 

[mick1807]

Hi, thank you for your response. Well yes "worse possible news" is going over the top but it has shocked me and I can't get it out of my head. I do just keep imagining what will it be like.
Don't get me wrong, I love life and am a positive person, this has just rocked me. Thanks again, I appreciate all feed back to put my mind at ease and give me back my positive attitude.

 

[pellicle]

Hi

Hi, thank you for your response. Well yes "worse possible news" is going over the top but it has shocked me and I can't get it out of my head. I do just keep imagining what will it be like.

you're welcome. The worst thing we have to fear is fear itself. Imagining "what it will be like" is essentially of negative worth. You'll just make yourself feel bad for no reason. I suggest strongly that you put it to "can't change it, so it will be what it will be" shelf and move on to studying what you can change.

valve selection ...

Now it could be years before you need surgery (or not) so its best to start informing yourself as to what your choice will be. At 39 you're not an "ideal" candidate for a tissue prosthetic, so I'd look carefully at learning what you can here (and hopefully people won't drag you into arguments).

Stiff upper lip and all that ... because really ... you'll be fine (after the shock wears off ;- )

Positive attitude is the #1 best thing you can work on right now. There is a black pit called anxiety ... don't even dip in a toe for something is likely to reach up and drag you in!

Best Wishes

 

[dick0236]

I also regularly go to the gym and lift weights as I enjoy it and I like being fit and healthy but also read here that lifting heavy weights may not be good for the aortic valve. What's more beneficial to keeping fit, weights or cardio? I also thought once surgery is done there would be just the standard yearly check up to make sure everything's working well but as I require a new mechanical valve I believe I will be on blood thinners for the rest of my life. Is it as simple as taking a tablet a day or does this need testing? If so, how do you do the tests?
On top of all this i have high blood pressure, always around the 140's to 150's, a separate issue which will need addressing once surgery is done. So my heart is working pretty damn hard at the moment.

Hi Mick, welcome to the forum.
1. Going to gym. Many of us work out at gyms regularly and there are a number of members who do some serious weight lifting.....use the "search" feature to find their posts.
2. Generally visits post-op are limited to every year or two unless problems develop. Even at my age I only see my cardiologist once per year.
3. With the current technology you will be required to take an anti-coagulant (blood thinner) on a daily basis. It will also be necessary to test your "clotting time" regularly thru an INR test. Many of us now do this testing at home. It is a simple finger stick requiring 5-10 minutes and usually done every one to four weeks. I do mine weekly.

Dealing with heart surgery is like eating an elephant.........you have to do it one bite at a time.

 

[mick1807]

Hi ****, Thanks for the feedback. At the moment it seems so much to take in. As I've never had a surgery before I guess I just have nothing to compare the pain too so I'm imaging all sorts of things which is probably pretty dumb but as Pellicle says I just need to think positively and the alternative to not having surgery is death so i think that's how I need to be looking at things. (I just have a very low pain threshold, haha)
Haha, nice analogy by the way. Sometimes I feel that elephant is just going to sit on me.
In terms of valve selection Pellicle, I'm just going to go on the surgeons advice and trust he will give me what his expert opinion is for me circumstance.

 

[pellicle]

Hey again

...As I've never had a surgery before I guess I just have nothing to compare the pain too so I'm imaging all sorts of things

injuries hurt more ... and then both are recovery

In terms of valve selection Pellicle, I'm just going to go on the surgeons advice and trust he will give me what his expert opinion is for me circumstance.

the surgeon will probably ask for your opinion (or they should) so you should try to inform yourself as to the options.

Myself I'm of the view that **** wouldn't be as healthy as he is now if (were they available even?) he'd picked a tissue valve back then.

The bottom line is pretty simple:
* you exchange "heart valve disease" for "prosthetic valve disease"
* there are two types: a manufactured tissue type and a mechanical pyrolytic carbon type.

With the tissue type anticoagulation therapy is not usually needed (but can be, more so as you age, and if you get AF as a result of your surgery), but they progressively fail over time and require redo operations. At your age you'll probably get less than 15 years out of a tissue valve, and the more active you are perhaps the less time (maybe 9 or less). So you'll need reoperations at (say) 12 years (you'll be early 50's) then (cos you'll be older) you'll probably get 15 years putting you at your 3rd surgery at about late 60's. After that its hard to predict the future of technology.

With a mechanical the valve will probably never wear out and there is a good chance (unless you develop an aortic aneurysm) that the valve will last you your lifetime and no other surgeries will be needed (such as is the case for ****). The down side of that choice however is that you'll need to be on anticoagulants (warfarin) for the remainder of your life, and if you happen to have a complicated medicine regime (say, with blood pressure medications) management does require care.

Myself I've had 3 surgeries, a repair (as a kid), a replacement with a homograft (28yo) and lastly a mechanical in 2011. I'm happy to call it quits at 3 operations by the age of 48.

Good luck with your readings, and you're in a good place to get opinions here

 

[Juli]

Hello Mick - I went through a very similar process as you 9 month ago and had my surgery 7 weeks ago. You are saying that you are feeling no symptoms - but that could be deceptive as your body can compensate. I think there is a chance that after surgery you will not have just 100% recovered but maybe even 110%. I just started riding my bike again after a six weeks pause and I am amazed - dispite my lack of training because of the surgery - that I am getting personal records - especially on the climbs and I was a pretty decent rider to begin with.

 

[pellicle]

mick1807

...You are saying that you are feeling no symptoms - but that could be deceptive as your body can compensate. I think there is a chance that after surgery you will not have just 100% recovered but maybe even 110%. I just started riding my bike again after a six weeks pause and I am amazed

and this!! (that's how it was / is again) for me

 

[dick0236]

As I've never had a surgery before I guess I just have nothing to compare the pain too so I'm imaging all sorts of things which is probably pretty dumb but as Pellicle says I just need to think positively and the alternative to not having surgery is death so i think that's how I need to be looking at things. (I just have a very low pain threshold, haha)
.

I volunteer to visit heart surgery patients (post-op) at a local hospital. Most have had open heart surgery thru the sternum for valve and/or bi-pass repair/replacement. My visits are usually 3-4 days after their surgery and few complain of undue pain. Most are far more concerned about when they can go home. I'm sure there is a time, shortly after the surgery, that we've all experienced pain.......but the hospitals have some pretty good stuff to keep you in La-La land during those times.

 

[mick1807]

Hi Juli, that's awesome .Well done. You might be right and that part of it does excite me. I've always felt as though i'm fit. I hit the gym 5 times a week for about an hour, run about 4k without too much struggle and i wear my 7yo and 10yo generally before I get tired. haha. If I do have other gears to go I'd be stoked.
Hi Pellicle thanks for all the advice, I think at my age I'll go the mechanical as I only want to go through this once (hopefully) in my life. Talking about it does help and make me feel better about everything.

 

[mick1807]

Hi ****, appreciate the advice mate. Thankful for everyone who has got back to me. You've all made me feel better about getting it done. La-la land will be my favourite place I'd say. I'll be happy once it's all over and a distant memory.

 

[Juli]

Hi Mick - I like your attitude and how much positive momentum you are picking up from the other posters. If everything goes well you might be surprised how quickly you will recover. I spent my first half day back at work about 10 days post OP and returned to work after two and a half weeks. I had to observe some lifting limitations and only started driving after 4 weeks but your body will otherwise give you a good idea what to do and what not to do. I now feel that I have no limitations and that I am completely back to normal.

I also went for a mechanical valve and the management of the Warfarin is not a problem for me. I am "managed" through a clinic but I already bought my own Coagocheck and do additional measurements at home - gives me peace of mind and should help me to switch to self management as I have to do quite a bit of international travel the rest of the year.

 

[mick1807]

That's my other thought process. I want to set myself goals and going back to work asap is one of the goals. I have an office job so hoping i won't have to take too much time off. As i see my specialist October 18 to find out when surgery is, if he says it'll need doing in the next 6 months, I'm thinking of just getting it done in November then will set myself another goal of being right by Xmas time.

 

[ForeverThankful]

Hi Mick! I'm like you, I never had any surgery or serious medical issues and then out of nowhere I was being told I needed open heart surgery for a BAV replacement and an aneurysm! It came as a total shock so I know how you feel. In my case I was diagnosed and told I needed surgery in August 2015 and I had the surgery in October 2015. Once I processed the fact that I would be having heart surgery I set my mind to being as positive about it as I could. Just keep looking forward!

I decided on a mechanical valve also so I'm on Warfarin and yes it is as simple as taking a pill once a day. As far as testing, I have a home meter (Coaguchek XS) which is very easy to use and makes testing very convenient.

As far as pain goes, I had a somewhat unique situation where I was not given any painkillers and I really didn't have any pain. The only pain I had was when I would roll onto my side by accident or when coughing but as soon as I rolled onto my back or stopped coughing the pain also stopped. What I did experience was the feeling of being exhausted, like I must have been hit by a truck. For example, I remember looking at my plate when they would bring food in the hospital and thinking that I was too weak to pick up the fork!

Just stay positive and before you know it the surgery will be over and you'll be on the road to healing!

 

[AZ Don]

It's quite a shock to be healthy and then be told you need heart surgery. So many of us can relate to this surprise - I didn't even know I had a heart murmur, much less a BAV and an aortic aneurysm. A month after finding out I was having heart surgery. But having been through it, it all goes by so fast. It's different for everyone, but right after the op the pain was pretty minimal for me with all the meds. After that some positions hurt but in some positions there was virtually no pain. I was home on day 5 and had no need for painkillers beyond ibuprofen, though sneezing was rather special for a time. Normally you have to wait at least 6 weeks before you can drive. By that time some may be ready to return to work, at least part time, but keep in mind your priority is giving yourself time to heal and some take 8-12 weeks after. While the skill of modern surgery is amazing and the success rate is on the order of 99%, this is your heart and you need to listen to your Doctors and give yourself time to heal. Typically by 3 months after your Dr's give the all clear to do what you want. At that point you can probably do weight lifting or cardio, or both. Prior to surgery I would defer to what your Dr suggests. If surgery is imminent it is likely you should be taking it easy.

 

[mick1807]

Great advice guys. Again you are all giving me confidence that I can actually do it and everything will be ok. It's nice to know I'm not the only one feeling this way. Prior to this forum I felt at 39yo I was so unlucky and felt like the only person ever to have to go through this.
I look forward to coming back to this forum after surgery and telling people in my current position that it's not as bad as what you think it will be.

 

[Warrick]

Hi mick,at 39 also i was where you are almost 12 months ago to the day, 22nd september told I needed surgery, surgery november, back to work january and now the rest is history.
i wouldn't overall have said it was particually painful... smashing your finger with a hammer hurts more , it's probably more like being water boared haha
Warfarin is not the biggy you expect it to be but does take several learing curves to get there.

If you think you want to self manage ( I'd never even thougth of warfarin beforehand) reading the posts here and corresponding with the gang will get you there and I think I manage it better now than my GP would, and it gives you confidence in yourself going forward.

 

[mick1807]

Hi Warrick, sounds like we are in a very similar situation. Again great to hear you're doing well and you've also given me confidence I can do this.
The blood thinning medication was something I initially wasn't aware of so that's something extra to get my head around but again you've put my mind at ease regarding that too. Thanks for sharing your story.

 

[Agian]

Welcome to the forum Mick. I'm week 11 post-op. I felt discomfort, not too much pain. I was taking selfies in ICU the next day. I was more concerned about my temperature, pulse and BP, than the pain. Lying in bed all day made me anxious. When my in-laws visited, I felt like a trapped animal. I notice from your profile you're in Melbourne, just east of Adelaide.