Born with a bicuspid valve, I guessed this day was coming…just not so soon! I will be 56 when they open my chest on August 15th. I would much rather have the TAVR procedure but at my age the long term planning doesn’t support that method at this time. So, OHD it is. I have significant procedural anxiety so this should be interesting.
Anyway, I have a decision to make - biological valve or mechanical valve. The mechanical valve is supposed to last a lifetime but will require I am on one of the old anticoagulants for life. The biological valve will likely last 10-20 years then need replaced. Because I plan to be very active after recovery (biking, hiking, weight lifting) I am guessing the valve will probably wear out faster - so closer to the 10 year mark. The valve could then be replaced through the TAVR procedure (and be more successful because the valve they use to replace my bicuspid valve will be round and the valve they will use during TAVR will be round - as opposed to using a round TAVR valve now to replace an oblong shaped valve typical in humans). A big benefit to the biological valve is no need for an anticoagulant.
There is more…during this OHS procedure the doctor said he will also do a Maze ablation for afib, clamp the left atrial appendage (LAA) and take care of any blockages that I may have.
Looking for thoughts on OHS in general, which valve type I should choose, tips to deal with excessive anxiety and any actions I can take now to improve my recovery (lung capacity exercises, etc.).
Thank you in advance
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Jafib
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Wow that's a quite an extensive surgery ahead! Wish you all the best x I also have bicuspid aortic valve mine is moderate to severe aortic regurgitation and moderate stenosis but I won't need it replacing for a long time which is good. X
First of all... anxiety, something that I struggle with a lot. I initially refused treatment to replace my valve becuase of it. The huge difference for me was my Clinical Psychologist, referred by my GP and the CP did graded exposure to the hospital, introduced me to my medical team and visits to ICU and the wards and wrote a care plan for when I was in hospital. I truly couldn't have done it without her.
Exercise... I was told to stay active but... no running, no stairs, no hills, no fast walking. Nothing that would make me out of breath and put my heart under more strain. So it was gentle strolls every day.
My surgeon made the decision on my valve for me based on my anxiety around hospitals, mechanical in the hope that I won't ever need it replacing. Yes I'm on Warfarin, but it's not an issue at all.
Unfortunately as a result of the surgery I went into total heart block so had to stay in hospital longer until I was well enough to have a pacemaker fitted. So I will still have to have another surgery in about 10 years to replace my battery.
Finally, if you are on Facebook and not already a member then maybe consider joining UK Aortic and Heart Defects Pre and Post surgery. Everyone in the group has had, is waiting for or is supporting somebody with these issues -
Thank you so much for taking the time to reply. Is the surgery to replace your battery open heart? I feel like being on Warfarin will limit the outdoor activities I love...biking, hiking through the mountains, etc. And thanks for the FB reference - heading there now.
No the pacemaker surgery is done under local anaesthetic. Because you need to do certain things during the procedure to make sure that the leads are OK.Several in the FB group do strenuous outdoor activities and are on Warfarin. I'm sure they will tell you all about them
Definitely reach out to your GP for help with your anxiety though. I was hoping for meds, not a Clinical Psych, but she was definitely the better option. My appointments carried in for 6 months post surgery to help me with the PTSD following the surgery-
I ended up having valve repair (55) but had to choose in case of replacement. My surgeon explained that in most countries the benchmark is under 65 mechanical and over tissue. UK is choice between 50 and 65. I checked this out and seems accurate so I opted to go with the general international advice.
hi, I hope this will help as our circumstances are very similar. I am 57 and had replacement aortic root and valve (mine was bicuspid from birth also) 8 weeks ago and the few months leading up to the surgery were by far the worst. I elected to have the mechanical valve and taking warfarin daily is a simple tablet or two and does not impact any of your ability to do all of the activities you mention. I just didn’t want to have to go through it all again in my 70s when it would potentially be much more difficult in terms of recovery time. The reality is that you’ll know nothing about what’s happening once they give you the general anaesthetic and although the initial week after is tough in terms of regaining mobility they will have you walking up and down the corridor on day 2 and hopefully home in a week. I have tried to be as positive as possible and walking really is the best way to get back to some level of fitness. I am now back to work (non manual job) and walking 2-3 miles each day. Please let me know if you have any questions as I’d gladly try to help
I had a biological valve 2 years ago - brilliant surgery and am currently walking sections of the south west coastal path something never could have dreamed of ! ( I’m 64) prior to the surgery !!
I couldn’t have mechanical one as I’m allergic to aspirin - but my neighbour whose 92 had her biological valve 24 years ago and it’s still going strong ! They say max 20 years but they haven’t been tested longer as the patients are still going !
Given the choice I’d have gone mechanical as a life long vegetarian it was the obvious choice for me but the decision was made for me .
It’s a very scary time pre op but look to your future where you will have more vim and vigour more zip in your step and a whole new lease of life a head of you thanks to the brilliance of our nhs and the incredible heart surgeons .
What ever valve you get it will make a massive difference to your quality of life .
Good luck stay calm breath and look to your healthy future ! X
hi Jafib I am sure that your cardiologist has explained but the NICE guidelines indicate that a mechanical valve is consideredreasonable choice for those under 60 and a tissue on for those over 65 and if you are between 60 and 65 either is reasonable. US guidelines are even lower and tissue is now much more common. There is a trade off between reoperation risk (having to have a new valve if you go tissue ) and having to manage the warfarin and the risks associated with warfarin eg bleed risk if not properly controlled. My cardiologist still wanted me to go mechanical last time I discussed it at 62 as he was concerned that as I was active it would wear out quicker so if I then had a TAVI I might end up having to have two. I am not worried about the clicking . I had a temporary reprieve at my last assessment I am still borderline for the op but not yet. I will definitely go tissue valve but I am a bit older than you. Not everyone can have a TAVI if you valve is small. I would go through the pros and cons with your cardiologist. If you look at past posts both choices are very legitimate choices. Some forum memebers would not ever want to go through open heart surgery again while others are concerned (like me) about managing the warfarin. Many seem very good however at managing the warfarin and buy a home monitor. if you can face looking at the annual cardiac audit reports there are some really interesting statistics on the variation between different hospital centres some do far more tissue or mechanical than others . So you could look up your hospital and see what they typically recommend and ask them about it. Then be guided by their advice. Best wishes for a speedy recovery from your operation.
I've chosen tissue because the mechanical clicks. But I am 76 so expect either will do. The catheter route for any eventual replacement will be very much easier to have and to recover from but right now, that's not an option for me.
I've been practising deep breathing, slow inwards through the nose taking 7 seconds, hold for 3, exhale through the mouth for 5 seconds. Repeat twice more then another two but instead of exhaling, cough from as deep in the lungs as you can. As to anxiety, my levels are through the roof but I keep telling myself that the state my heart is in right now is more dangerous than the operation. Someone has told me to memorise a poem that you can repeat as often as necessary to pass the time. My op is 8th July and I'm looking forward to getting to the other side. Hope this helps.
Hi Jafib,I had a mechanical aortic valve 5 years ago at age 49. I didn't have the wait as I had emergency surgery within a week of diagnosis. The surgery was not as bad as I expected, cpr left me with more pain.
Warfarin isn't too bad and I spent a week last month on Skye completing the Munros there, that I started last year, including climbing and then abseiling off the In Pinn. I also spent a week skiing both last year and this year without concerns. Close contact sports are not advised and I have had a visit to A&E after walking into the garage door.
Recovery was slow but I am fitter now than I have been in a long time and more able to hike and do 5 and 10k runs.
I had aortic bicuspid valve replaced when 45, that's 22 years ago now, and because I played competitive football I had a tissue valve fitted. The whole procedure was straightforward with only a little discomfort and no pain. Do everything you're advised for the 3 months after the op and you'll be fine. I had the operation in May and played my first game of football, after training, in October. I worked my new valve as hard as I could and my knee stopped me playing at 55 not the valve. I then started running, 5k under 23 minutes and half marathon under 2 hours, until valve decided that was enough and had it replaced again in 2022. Similar experience and back to running after about 4 months. Maybe took a bit longer to recover 2nd time but I expected it at 65.Don't worry and let the wonderful medical team look after you, they're really good at it. I had similar experiences at both Glen field, Leicester and Papworth, Cambridge.
I had my AVR just over 12 years ago in my mid 40's.I had the mechanical valve, wasn't really given the choice.
A few years after the OHS I was diagnosed with LBBB and had to have a pacemaker fitted.
I'm on warfarin, I don't let it stop me doing the things I enjoy, during the shooting season I go out beating, during the off season I train my dogs, I still drink, and eat whatever I fancy.
Consistency is the key thing with warfarin.
IT doesn't like to share, but, if you're consistent with what you eat and drink the warfarin will tolerate it.
Hi I had a mechanical valve in 2005 at age 48 as I was told tissue valves only last ten years. In recent tests it is working perfectly. Yes I have to take warfarin but it has never presented any problems, I have a home tester cost around £300 that cuts my hospital visits down to two a year. It’s now nearly 20 years since my surgery and at 68 I still ski and mountain bike.
I am 67 and last year had OHS for AVR, LAA clip and ablation. I was known not to be able to maintain a stable INR on warfarin so the surgeon used a tissue valve which can accommodate TAVR should this be necessary in its 20+ year lifespan. I still take apixaban as not all stroke inducing clots form in the LAA.
Please join us on the f/b site as mentioned by Rhino67 if you haven't already - a great friendly group, we're all waiting for or been through similar surgeries 😊
I was diagnosed with a stenotic aortic valve and a damaged mitral valve back in 2009 when I was 55. Faced with many of the decisions you're facing now. My aortic valve was almost at the point of collapse so I had little time. I talked it over with my partner and we decided due to my age a mechanical valve would be best. Didn't relish going through the same procedure or similar 10-15 years later. I was in surgery 6 hours and they replaced the aortic and mitral valves and did a double bypass while they were in there. A complete overhaul job. Later they had to fit a pacemaker because of an AV IV Block and for a few days I was in a bad way. That was 15 years ago and overall I have no regrets. Sure taking anticoagulants is a pain and keeping your INR value within range too but you learn to deal with it and I have very very few restrictions to this day. Made very much easier using my own INR test machine. I lead for the most part a fairly active life, get bruised, cut and scraped regularly. I've never to date had anything serious I couldn't deal with. I have just been diagnosed Afib and will have cardioversion at the end of the week. Keeping my fingers crossed for that. My recommendation is a mechanical valve. One time for life. Biological valves don't last that long. The pacemaker BTW was replaced 2.5 years ago and should be good for another 17 years. As medicine advances there will be other better opportunities in 10-15 years for you to consider. I wish you all the very best. Trust your surgical team, ask all the questions you can think of - even if you think it's stupid. It's only stupid if you don't ask it. Your surgical team wants to best outcome for you as well. It's what they do and they want to be the best.
Both of my parents had to have open heart surgery for an aortic valve replacement within a couple of years of each other. Dad had the pig valve and mom had the mechanical. Dad lasted into his mid 80s, over 20 years past it but died when he started refusing to take the Lasix and had fluid buildup. Needless death and the valve was still working properly. Mom is still going over 30 years past hers and she has emphysema bad too from smoking so either can be good I think. I just had a TAVR done for the same reason back in January and it was instant relief from extreme shortness of breath and fatigue. I am on Plavix for now but will be stopping it soon after my next appointment.
I am 71 and apparently inherited the same defective valve. It got so bad that I couldn't walk 20 feet without doubling over trying to breathe. It was masked for quite some time by me being unable to do much from extreme physical pain from a damaged back and then from a reaction to Ramipril which caused the same shortness of breath, fatigue and a few other side effects. The cardiologist said I shouldn't even have been alive by the time I ended up in the emergency room. I had the TAVR because it is less invasive and quick recovery. I live alone and my nearest relative is 900 miles away and also has health problems so could not come and stay with me through an extended recovery.
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