AVR a week from Today, Yikes

[dcarlson]

Hi,
I just found this forum through Googling about my upcoming surgery, and thought I'd give it a try.

I'm 39, Bicuspid Aortic Valve my whole life... Went in for 'routine' echo beginning of October and all the alarms went off. The valve went bad fast and has enlarged my heart and given me a bit of aortic aneurysm just for good measure.

So after a long month of anxiety and tests, I'll be getting a new valve (mechanical) and aortic graft next week at UCHealth in Denver, CO.

I'm pretty freaked out, but also looking forward to maybe feeling better than I have in a while, surgery recovery notwithstanding.

I'm hopeful I'll be able to continue all my favorite activities running/mt biking/skiing/soccer/softball in due time... It seems like the Warfarin doesn't eliminate those activities, right? (Assuming all the appropriate management and precautions?)

I'm really intimidated by how much pain I might be in, but trying to reassure myself with memories of making through broken ribs in the past.

 

[pellicle]

Hi and welcome

I'm 39, Bicuspid Aortic Valve my whole life... Went in for 'routine' echo beginning of October and all the alarms went off. The valve went bad fast and has enlarged my heart and given me a bit of aortic aneurysm just for good measure.

sounds like you were lucky. The biggest issue here is the surprise, because you knew you were BAV and were (quite likely and perhaps even partially) thinking that you might dodge it and it will be later.

A fellow member (who I help with INR management) sent this news to me last night

https://www.independent.co.uk/arts-...ouse-death-cause-dj-house-music-b2210949.html
He died from an aortic dissection of his undiagnosed aneurysm; its pretty much that if you have BAV its strongly associated with aneurysm and thus risk of sudden death due to that (not so much the murmur)

Myself I expect I would have died in 2011 or 2012 if I'd not returned to Australia (for other reasons) and then had a few (long over due) tests done and found a 5.6cm dilatation of my rising aorta.

So this is really great news.

I'm pretty freaked out, but also looking forward to maybe feeling better than I have in a while, surgery recovery notwithstanding.

I understand freaked out, but you seem to be processing this really well and logically too (as well as having the natural emotions).

Lastly this is a good place to come and to make the post surgical experience (yes, that's actually pretty important) as good as it can be and set up for a good life in your new life after surgery without any hang-ups and phobias caused by how badly the medical system can communicate things.

When the time comes reach out if you need / want a hand in managing your INR.

Fingers crossed for an uneventful surgery and a plain recovery. Soon all this anxiety will be behind you, and you'll be making the adaptations for a new life.

Best Wishes

 

[AZATADINE]

I'm a year post op myself (had op at 52). The first few days are the worst and you'll have plenty of medication to help with that. You'll be surprised how quickly you'll start to recover after that. It's not as bad as the fear of how bad it'll be.

 

[Superman]

Welcome to the forum! A whole bunch of folks just got in your corner. Feel free to ask any questions you might have. Lots of great threads exist about preparing for and recovering from open heart surgery. Do seek out those threads. But also, don’t hesitate to ask your own questions here.

You’ll do great and when you don’t feel great, there are drugs available.

Wishing you well! Keep us posted. And remember the only dumb questions are the ones you have but don’t ask.

 

[pellicle]

And remember the only dumb questions are the ones you have but don’t ask.

I just want to say "do you know how many people don't know or understand that "dumb" is not stupid and that's the meaning of that phrase"

 

[DJ-Rae09]

Hi Mate,

Good luck with your upcoming surgery. You're young so you'll bounce back quick! Be positive!

I'm 39, Bicuspid Aortic Valve my whole life... Went in for 'routine' echo beginning of October and all the alarms went off. The valve went bad fast and has enlarged my heart and given me a bit of aortic aneurysm just for good measure.

So after a long month of anxiety and tests, I'll be getting a new valve (mechanical) and aortic graft next week at UCHealth in Denver, CO.

I just had exactly what you're having 3 months ago (I'm 43). Sounds like you're having the Bentall procedure?

I'm pretty freaked out

Yeah it's natural to feel anxious and scared. It's a big operation but remember with VERY high success rates.
Try and focus on the positive outcomes of the procedure and what it's preventing in future such as heart failure, aortic dissection/rupture.

Oh and you're heart should recover and remodel which will get it back to normal size.
Mine did after day 6 post surgery and I'm expecting more improvements from my next echo in December.

It seems like the Warfarin doesn't eliminate those activities, right?

It shouldn't restrict you. There are many members who chose mech valve with Wafarin who do these activities.
For me, my activities pre surgery I was playing Golf and going to the Gym.

I recommend getting the Coaguchek device and self manage your INR at home (initially your primary doctor will probably manage INR). I was scared of Wafarin and INR pre surgery. But I've since discovered it's not scary at all once you get the hang of it.

I'm really intimidated by how much pain I might be in

In my open heart surgery experience, the pain wasn't that bad. It was manageable. Just ask the nurses for more pain medication when needed.

My advice, try and walk as much as you can in hospital when you start recovery. It helps get your bowels going again and also the lungs working/heart pumping.

Keep us posted on your recovery and see you on the other side

 

[Chuck C]

Welcome to the forum! And welcome to the club- the one that nobody wants to join, but our genetics sign us up anyway! Not glad for your situation, but glad you found us.

I found this forum a few months before my surgery and it really helped a lot in helping me go into my procedure with more confidence. There is something about reading the stories of others who have faced what we are facing and came out the other side in one piece and also hearing that they are doing great and living normal lives.

I'm 39, Bicuspid Aortic Valve my whole life... Went in for 'routine' echo beginning of October and all the alarms went off. The valve went bad fast and has enlarged my heart and given me a bit of aortic aneurysm just for good measure.

The good news is that you're young and they have been tracking your condition, so that you can get yours taken care of in a non-emergency situation. Having some heart enlargement is very normal and should completely reverse once it has had a chance to adjust to the new low pressure environment after your procedure. Being young helps in this remodeling process, so you have that going for you. I went in with a similar situation, bicuspid, although in my early 50s at the time. I also had an aneurysm (maybe more accurate to call it a pre-aneurysm) repaired with my operation, having my aortic root and part of my ascending aorta replaced as well. Oh, and like you, I had some echos which showed that my heart had enlarged- at this point, 19 months after surgery, it is totally normal in size.

I'll be getting a new valve (mechanical) and aortic graft next week at UCHealth in Denver, CO.

That is exactly the valve that the guidelines call for at your age, provided you are not contraindicated for warfarin. The good news is that because you are also taking care of your aneurysm, there is a very strong likelihood that this will be your final procedure- one and done as we say.

I'm pretty freaked out, but also looking forward to maybe feeling better than I have in a while, surgery recovery notwithstanding.

You will feel better and at your young age, it would be expected that you would recover relatively quickly as well.

I'm hopeful I'll be able to continue all my favorite activities running/mt biking/skiing/soccer/softball in due time... It seems like the Warfarin doesn't eliminate those activities, right? (Assuming all the appropriate management and precautions?)

There are members here who do all of those activites. I run (in fact I ran today), hike, lift weights, and do Brazilian Jiu Jitsu. Personally, I procede with caution and try to be smart about it- manage my INR tightly and choose my martial arts training partners with some care- avoiding the pychos who just want to hurt folks.

I'm happy to hear that your surgeon did not try to talk you into going outside the guidelines with the argument that you can't be active on warfarin or by claiming that the new tissue valves will last 30-50 years, despite a complete lack of evidence. It seems that most surgeons do still give their patients the guidance that will give them the best chance for a normal life and a normal lifespan, without unecessary multiple procedures.

Please keep us posted and please feel free to ask any questions. Lots of folks here to help in any way that we can.

 

[DJ-Rae09]

And welcome to the club- the one that nobody wants to join, but our genetics sign us up anyway!

LOL good one!

 

[Seaton]

All the best for your upcoming surgery, @dcarlson. Will be watching out for your recovery updates post-op. It's really great news you were being monitored with routine echoes for your bicuspid. Good to hear you're being dealt with speedily.

There's a ton of great advice and support here, should you need it. The surgery will soon be behind you. See you on the other side!

 

[dcarlson]

I wanted to write back to you all individually, but I'm honestly too overwhelmed, so I'll just do it here and hope you see it!
Thank you all so much! I cannot tell you how much your responses have calmed my apprehensions and anxieties... I'm almost feeling excited to get this done now... which seems crazy.

Anyway, thank you for sharing your experiences and I'm looking forward to being able to do the same.

And unless I decide to post a night before message or something... T-minus 6 days.... See you on the other side!

 

[Dodgy Ticker]

You'll NEVER guess what my Ex said to me.....
Because I hadn't done the vacuuming of the house, she screamed her head off at me and told me to drop dead.
So I thought - "i'll teach the *****" - and I did indeed drop dead!!
But as I don't like cutting off my nose to spite my face, I thought
"Bugger it - i'll haunt her from the grave" - SO I CAME BACK, AND WITH NEW VALVES!!! Two, no less..
And now, friends, I drive her nuts every day of her pathetic life.
Whoever said that vengeance is not sweet was clearly an *****!
So, you see, whichever way you look at your problem, there's ALWAYS a bright side of life to look forward to.
Good luck, keep calm, and don't get hooked on anti-biotics....

 

[Chuck C]

I'm almost feeling excited to get this done now... which seems crazy.

You have the right attitude!

Keep that enthusiam, always looking ahead, and be excited ane celebrate during every step of your recovery process. This is not a cake walk, but you have a lot of little victories ahead of you during the recovery process and I would encourage you to enjoy every one of them.

Best of luck, and keep us posted when you feel up to it.

 

[Timmay]

Hey Brotha! Soon you will be in the mech valve club with the rest of us . Yes, it's scary. But you will be good! I just had mine 5 months ago. This forum has been AMAZING. Lots of support, help, etc.

FWIW, I had a full sternotomy and I am back to running, lifting weights, shooting, car mechanic work, house repairs, etc. You will absolutely get back to a lot of what you did before. For sure. You might even get back to everything you did before ... but since I don't know your activities 100% I can't say that with confidence yet.

One of the best things that you can do to ensure your health is to learn how to manage your INR on your own. Get your own meter and strips. I think everyone in this thread (up to this point) manages their own INR. Definitely reach out to us about doing this.

Good luck man and stay in touch.

 

[user 16827]

Hey, welcome

Regarding your MTB on Warfarin, I continued to race post opp for years, fitness and confidence
took a little time to return but i regained my pre surgery pace so yes its all very possible.

I have had a few crashes , one involved surgery and went hassle free ( regarding Warfarin )

XC and DH

I still race an occasional Masters event

Wishing you a speedy recovery , youll be back on the trails in no time

 

[ValveAdmin]

Welcome to the forum.
Wishing you a successful surgery and a smooth recovery!

 

[Juli]

I'm hopeful I'll be able to continue all my favorite activities running/mt biking/skiing/soccer/softball in due time... It seems like the Warfarin doesn't eliminate those activities, right? (Assuming all the appropriate management and precautions?)

You should be fine - I did my first 35 mile/3600ft climbing mountain bike ride 8 weeks post op at 58 years old. You might be surprised how much better your heart pumps.

 

[pellicle]

.... See you on the other side!

see you then

oh, and you might want to consider this thread
https://www.valvereplacement.org/threads/stool-softeners-and-valve-replacement.887527/
https://www.valvereplacement.org/th...rmally-given-after-surgery.42700/#post-777281