First Surgery Coming Up, And Afraid

[Yahtzee577]

Hi All,

I'm currently staring down the barrel of a David procedure, with the possibility of receiving a mechanical on-x valve if my valve turns out to be unusable. I'm also a somewhat* otherwise healthy 28 year old who is having trouble coming to terms with what's about to happen to me. My surgeon is confident he can pull off a David, but I cant shake the fear of possibly waking up with a robo-heart as no surgeon can 100% guarantee a procedure until their looking at your bits live in the studio. I guess if I had to summarize my question in about 11 words or less I would put it like this: How do you live a life free of worry after this?

In the meantime, I think about a dramatically shortened lifespan, the possible inability to control INR, strokes, shadows I've painted on my wall, but when I browse this page I see testimonial from people who live their lives without fear. How do you do it? Where do your draw your strength from? Where should I travel to once I'm through all this ****?

Thank you - B

 

[pellicle]

Hi

How do you do it? Where do your draw your strength from?

dunno, I didn't do much, the surgeon did all the hard lifting (and the team in OR as well as ICU) ... then I just recovered.

I don't think I have any strength, perhaps the problem is that I'm stupid and didn't over think what's happening between "lights out" and "wake up"

Perhaps because I did it first at about 10 I never gave it much thought.

Personally at your age I would entirely totally want the mechanical and NOT a valve sparing surgery. Chances are too high that'll not last the distance and you'll be doing it over again.

some readings:

on surgery:
https://cjeastwd.blogspot.com/2014/01/heart-valve-information-for-choices.html
on being on warfarin if you pick a mech
https://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
that's of course quite lengthy, but its meant to be sort of a resource.

So just stand fast and it all happens around you, then its over, and you remain

HTH

I'm sure you'll be entirely fine

 

[dick0236]

I think about a dramatically shortened lifespan, the possible inability to control INR, strokes, shadows I've painted on my wall, but when I browse this page I see testimonial from people who live their lives without fear. How do you do it? Where do your draw your strength from? Where should I travel to once I'm through all this ****?

Thank you - B

Hi Yahtzee577 and welcome. Hopefully, you will get a lot of answers to your questions

I was 31 when I got one of the earliest mechanical valves on the market in 1967 so this surgery is life-enhancing, not life-ending.
I will also add that I still have that initial valve at 87. My docs tell me it will still be ticking when my time runs out. I've handled INR quite simply.......you take a pill daily, test every week or two, and gradually increase or decrease your anti-coagulant (warfarin) to stay within your range. BTW, warfarin has had no impact on my living a very normal life.

I know nothing about the David Procedure so I can't comment.

People come into this forum with their eyes glazed over by the thought of heart surgery.......I know I did but there was no forum like this one .....or an internet when I had my only surgery so you are very lucky to have stumbled on a forum made up of short and long-time survivors of OHS.

I live my life by remembering to "eat the elephant one bite at a time". If you try to go thru all of the "what ifs" in one bite, you will drive yourself......and those around you NUTS!

PS: I initially thought I would be dead by age 50........boy was I wrong

 

[tom in MO]

I think about a dramatically shortened lifespan, the possible inability to control INR, strokes, Everyone on here controls their INR w/o difficulty

shadows I've painted on my wall, Turn on the light. Knowledge is power.

but when I browse this page I see testimonial from people who live their lives without fear. How do you do it? Where do your draw your strength from? Prayer, exercise, walk the dog, alcohol, good movies, mystery shows, family, friends.

Where should I travel to once I'm through all this ****? I like New Hampshire, Omaha, Wichita, Springfield, Crystal Bridges Bentonville Arkansas.

Take heart. The way to health has been plotted and there are excellent guides.

 

[Dunwanted]

How do you do it? Where do your draw your strength from? Where should I travel to once I'm through all this ****?

its been around 9 months since i had my valve replaced ( november 21, 2023) with a mechanical valve, i dont really think a lot of what can happen, i just focus of taking care of my self, keeping my INR good, doing exercise etc...

i feel like mechanical valves have a bad rep to them, but after having one, ticking is not an issue for me, INR was relatively easy for me ever since i started to self managing.

Dont think you much, read and get informed about all your options and how to care of youreself after surgery.

 

[Timmay]

Ultimately, how do I do it?

The answer for me is quite easy. Because I’m blessed beyond compare. Dude. I’m alive. Seriously. Read that again. I’m alive. I should be dead. All of us here would probably be dead if we lived 70 years ago. It’s that simple. For me, this is all “extra” time that only a teeny weeny fraction of a fraction of the course of human population has ever experienced and benefited from. It’s like you’re playing a ridiculously hard video game and get “time extended” and you’re like “What?!?! Woohoo!!!! Heck yea!!!!”

Every day that I wake up I am thankful. It’s easy to go on. Not only because of the perspective that I should be dead … but also because I’m so so so so so ALIVE and can do so so so so so much.

I can walk. I can walk long distances. I can jog some of that. I can take my dogs out. I can hang with my wife and do whatever. I can work on my vehicles and my house. I can go target shooting and have no issues with large caliber firearms. I can volunteer in my community and help others. I can spend time with family. I can work at my job. I can. I can. I can.

I can.

And that’s the major point.

Heart surgery for me was huge. HUGE. Biggest and scariest thing ever for me. But I did it. And I got “time extended” … and now I can exercise the “I can”.

You can too. And you will. And you’ll reflect on things and then say “wow - I’m alive - and I’m still here able to be in this game of life”

I also pray daily and give thanks to my Creator (no, not my Mom and Dad pellicle, lol). For me that was key. But for some it’s not at all on their radar and they do well too. So make it like you like it. And enjoy your “time extended”.

 

[Matt Livingston]

I can.

And that’s the major point.

This is so important, and very well put.

In a world and at a time when there's so much going on before surgery, most of it you have no control over, it's easy to forget this. The anticipation of surgery is very challenging, many of us here have been through it more than once. It doesn't get easier (at least for me).
I just had 2 mechanical valves installed on May 23, replacing my bio-prosthetic valve from 23 years ago and my mitral valve. Warfarin is a pill a day, it's pretty simple and I've noticed no side effects. I feel so much better, both physically and mentally, than I did before this last surgery. It is amazing to me that 8 weeks after having a sizeable portion of my heart removed and replaced, I'm back at work full time and throwing the baseball with my son. Just amazing.

I'm so very grateful to be here on this side of it now. So, for me, that's how I manage, I just feel grateful to still be here. No matter what life throws at me, I feel confident that I can handle it. Ask questions if you don't know, fear can lie within ignorance. This forum is a fantastic place to start reading other people's experiences.

I didn't live a life free of worry before this, and I don't know that people without these issues have that luxury, either. If you didn't have this to worry about, you can always find something, it seems.

You got this.

 

[thomas999]

It's been over 35 years since I had a St Jude aortic mechanical valve installed in me. Can't say there hasn't been anxiety because there has for me, and that pretty much goes along with some individual personalities. Despite the anxieties I have had, I challenge them in a sense that I don't let them stop me from doing what I want to do. I have traveled all over the world, including two African safaris, swimming with whales and dolphins, and just about everything else I wanted to do. For me it was more of a motivator than a disabler, as I refuse to let fear stop me from what I wanted to do. Yes, I take blood thinners and have to have it monitored and regulated throughout the years, but I am probably more healthy looking than most of my friends. In some ways I am a much better person and another ways I struggle, but that is just life. I accept it, and try to move forward with a positive frame of mind. I also see life much more beautifully than most people because I have learned to appreciate all the things that life has to offer. Bottom line is you got to do what you got to do and move forward!

 

[mecretired]

I have a st Jude grafted valve. Surgery was 13 years ago. Before I was discharged I had to watch a video that made it sound like you could bleed to death from a paper cut if you’re on warfarin. Absolutely not true. I have to admit I stressed about it until I finally purchased my own Coaguchek xs and began testing weekly. The idea of testing monthly makes absolutely no sense. So I test weekly. I try to stay aware of foods etc that can put my inr out of range. As far as activities—my cardiologist told me I could do anything I did before—and I do. I have had lung cancer (never smoked), 2 bouts of endocarditis and am going in for surgery next week. But my valve and graft are doing great. I can’t say enough good things about this group. They’ve really come through for me during the time around my surgery and gave great advice when I had endocarditis. They will come through for you too.

 

[LondonAndy]

One thing that I have learnt since discovering this excellent forum, which happened after my surgery, is that I am odd. Very odd. Having struggled with shortness of breath for quite a few months whilst I slowly went to different diagnostic tests for them to find out what was wrong, when they finally came to the conclusion of my aortic valve being blocked I was looking forward to getting the surgery done! Yes, I was anxious about the risks on the operating table, and made my Will out and made sure my brother knew where to find my contacts list etc in case the worse happened. But I even enjoyed the angiogram, fascinated by this robot device darting around my body to zap images onto a huge plasma TV screen. At the end of the procedure I said "I enjoyed that - same time next week?!". But I knew a valve replacement had to be done, and that life would be better for it. And so it has proved to be - my mechanical valve's ninth anniversary is next month.

Perhaps it is because I am diabetic, and therefore used to taking medication daily, that adding another pill (warfarin) was nothing to worry about. And perhaps the fact I like gadgets means I was not concerned about an artificial thing in my body - they must have known this, as they even threw in a pacemaker!

I had to Google "David procedure" to find out what that is, but it sounds cool and if it avoids you having to take warfarin then that's a bonus. Heart surgery is "common as muck", as we say on this side of the Atlantic, and they've got very good at it. There may be bumps on the way, but like @pellicle, I am confident that afterwards you will look back on the experience with relief, smile to yourself that you worried too much about it, and life will continue.

 

[treichert0312]

“Where should I travel to once I'm through all this ****?”

Hmmm - personal preference. Where do you want to go? Not much of a traveler myself, but I visit Mom in upstate NY on the way to visit my daughter in VT. While in VT I either go hiking or skiing depending on snow coverage.

Robo-heart has turned out to be OK. I get a little self conscious in quiet meeting space at work but at heartbeat around 60 beats per minute, the very sharp listeners figure it’s a watch. Only one person has noticed over the past year.

 

[billD]

Hi Yahtzee577,

I was diagnosed with a congenital heart defect three years ago when I was 63. Having never been seriously ill I was extremely apprehensive about how my life was about to change. My surgeon prediction that I would be able to resume everything I was doing before the surgery was correct. Discovering this forum has been extremely helpful in understanding INR management. Self-testing means there are few limitations on what you can do.

Wishing you all the best with your surgery.

 

[Lynn]

I’m glad you decided to join the group Yahtzee 577, because, like you, I had anxiety. Hearing the stories and seeing the wonderful and long lives people here are living helped me a great deal. It also helped me to come to terms with a mechanical valve and warfarin.

When I was frightened I thought about Dicks longevity and how outcomes have improved since 1967 lol. I read Pellicle‘s advice of INR management and set up home testing. I read studies and sifted through information pertain to BAV, and was surprised to discover that those with BAV who have successfully surgeries basically have normal life expectancy. There are many reasons for this, and I have read some large retrospective studies that support this.

You’re not alone in feeling anxiety, open heart surgery pushes us way out if your comfort zone. But our feelings are not facts. The fact is if you need the surgery it will save your life and not end it. The fact is, some things are out of our control, but many things are not. We can choose to put in the emotional and physical work to have the best life we can after surgery and the many, many people here doing just that are an example and an inspiration.

After surgery, I still had some anxiety but I worked through it and this board helped. More than two years out, I feel so much better than I ever imagined would be possible. And I am grateful that the surgery has given me this life. And grateful that warfarin really is no big deal lol.

I’m not a religious person but when I am faced with a difficult situation I recall the serenity prayer:

God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

Wishing you the best of luck, let us know how you are on the other side.

​

 

[Survived03]

I too had a valve sparing Tirone David-V exactly twenty years ago to correct an aortic aneurysm and clean up a BAV. I too was scared and anxious and dove into understanding as much as I possibly could, specifically about the aneurysm. The aneurysm is what scared me the most with a 5.6-6.0mm diameter ready to dissect. I will tell you what prepared me the most for surgery. I had a friend who went through two aortic valve surgeries within weeks of each other (endocarditis on #1). I told her how scared I was and she told me "you have done all you can so it's now up to the surgeon and his team". It was now out of my control. For whatever reason that was my a-hah moment. I did all the prep, wrote the just in case letters to my children etc. and just gave in to the what I couldn't control.

After surgery I spent way too much time researching long term outcomes and the possible impact on my life. Way too much time. Then one day I decided to move past what was obviously weighing me down and I never looked back. I didn't let it run and ruin my life. One example, I asked the surgeon if I could go back to snow skiing. He looked at me and just said, "yeah, but wear a helmet". He was telling me to get on with life.

Regarding your valve choices , after twenty years my BAV finally became stenotic to the point where surgery was required. I had my second BAV surgery 9 weeks ago and received an Edwards Inspiris Resilia bioprosthetic valve. So far, the recovery has been much easier than my first open heart surgery. However, at your young age you probably should consider a mechanical valve today while also considering valve sparing. I believe it would be a stretch in expectations to think that you wont have another open heart surgery if you go with valve sparing or bioprothesis for that matter. I can only speak for my own experience but the T-David V was fairly new at the time and they only had 7 years of data. I can live with the fact that I was part of the long-term outcomes study on this procedure and possibly the valve sparing option was weighed more heavily during my surgery. But I was fortunate and went well past timing expectations of valve failure before a second surgery and not everyone does. So keep in mind that you have the choice of picking your valve today rather than valve sparing. This forum does a really good job clarifying some of the misconceptions of living with a mechanical valve.

I wish you luck and if you have any questions please reach out.

 

[newarrior]

One thing that I have learnt since discovering this excellent forum, which happened after my surgery, is that I am odd. Very odd. Having struggled with shortness of breath for quite a few months whilst I slowly went to different diagnostic tests for them to find out what was wrong, when they finally came to the conclusion of my aortic valve being blocked I was looking forward to getting the surgery done! Yes, I was anxious about the risks on the operating table, and made my Will out and made sure my brother knew where to find my contacts list etc in case the worse happened. But I even enjoyed the angiogram, fascinated by this robot device darting around my body to zap images onto a huge plasma TV screen. At the end of the procedure I said "I enjoyed that - same time next week?!". But I knew a valve replacement had to be done, and that life would be better for it. And so it has proved to be - my mechanical valve's ninth anniversary is next month.

Perhaps it is because I am diabetic, and therefore used to taking medication daily, that adding another pill (warfarin) was nothing to worry about. And perhaps the fact I like gadgets means I was not concerned about an artificial thing in my body - they must have known this, as they even threw in a pacemaker!

I had to Google "David procedure" to find out what that is, but it sounds cool and if it avoids you having to take warfarin then that's a bonus. Heart surgery is "common as muck", as we say on this side of the Atlantic, and they've got very good at it. There may be bumps on the way, but like @pellicle, I am confident that afterwards you will look back on the experience with relief, smile to yourself that you worried too much about it, and life will continue.

Amazing post--much thanks and gratitude !!!!!!)

 

[Yahtzee577]

I think the big thing I'm struggling with now is trying to keep my head on straight before this thing. I keep reading white papers, and studies on life expectancy/endocarditis/strokes, and cant help but feel discouraged

I know there's no such thing as guarantees, but I'm scared I'll never get the chance to really live ya know? You all seem to manage so well

 

[Superman]

Keep in mind that many of us are outliers. The studies are built around patients in their 60’s and 70’s that have more typical valve calcification causing aortic stenosis.

When I was 17 and had my valve replaced, I couldn’t very well connect to studies done on senior citizens and project their outcomes onto me. If I’m 70 and live 10 years after a valve replacement, well, that’s just normal life expectancy. At 17, my expectations were quite different.

I’m 50 now and still remain somewhat of an outlier having had surgery so young (and again when I was 36 for an aneurysm). But here I am. Still ticking away and feeling very normal and arguably as active or more-so than many people my age.

 

[Yahtzee577]

that's my concern, is that because these studies are on older people, is it safe to assume that my chances of even getting to the average age these studies are done (50/60) would be slim to none?

 

[Superman]

that's my concern, is that because these studies are on older people, is it safe to assume that my chances of even getting to the average age these studies are done (50/60) would be slim to none?

My first surgery was 32 years ago. Last year my wife and I hiked from the south rim to the north rim of the Grand Canyon. This year my wife and I hiked from the rim to the river and back out the south rim with our five kids along. We have a century ride (100 miles) planned this fall (but might opt for 64 miles). Currently we’re coming back from a family adventure to the Canadian Rockies with lots of hiking and sight seeing.

I certainly don’t feel like someone who is short on time, but only time can answer that.

The studies are done on older people because that’s the majority of the available participants. Those of us who’ve had surgery at younger ages are outliers. And I imagine just the right combination of factors to match any one person’s specific situation are pretty tough to find.

 

[pellicle]

that's my concern, is that because these studies are on older people, is it safe to assume that my chances of even getting to the average age these studies are done (50/60) would be slim to none?

I think you misunderstand what he's saying.

You're marinating in doom and gloom and what we're telling you is that you stand as good as the average person does for reaching late old age.

IF you actually follow INR management practice (and spend > 80% of your time in the therapeutic range) then you will have about the same chances of a thrombo or bleed event as the general population.

Dick who also commented had his valve surgery over 50 years ago and had it when he was about 38. Do the maths there.

I had my first surgery when I was 10, I've had 3 in total (last at 48). I'll be 60 early next year.

So please take your "the world is dung coloured glasses" off and re-read my above post and the linked blog posts.

Get the surgery, stop worrying about the bad outcomes and start understanding what it is you need to do (not what the surgeon needs to do).

Best Wishes