Hi , I’ve just joined the forum and would like some feedback . I have stenosis of the Aortic valve and was informed during my yearly echo review this week that I’m now being considered for replacement valve within the next month or two.
I was diagnosed with AF 6 years ago and have had two catheter ablations , the last just over a year ago . It was largely successful but I still have to take oral anticoagulants in case of stroke.
Im just wondering what effects the op will have on my AF and what pain relief I will be given bearing in mind anything stronger than paracetamol can trigger AF
Thanks
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Hammerboy
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If you need a replacement valve then the op is essential. No matter what side effects might be, you need the op to stay alive. It is a fantastic op done by truly wonderful surgeons and supported by quite the best support staff.
You end up with a pretty fabulous new valve. Mine has been trouble free for three years and I don’t even notice it is there. And I can’t see any scars left behind
You will need a lot of pain relief. However, if your medics calculate the painkillers will be too much for your other issues then perhaps a TAVi op could be a better option.
Please look forward to the new valve. It’s a one off remedy for a failing valve . Highly successful procedure.
I am not in any way trivialising your AF or other problems.
And I do hope you get the appropriate treatment in Spring or summer 2024.
That’s very helpful thank you, my cardiologist is well up to speed on my AF and is talking to the Papworth team so hopefully they will come up with something
It will be nice to experience a new valve and get back to my old levels of fitness
AF is to do with electrical signals that go a bit funny due to damaged caused by calcification and thickening. The abolation is done to try and smooth those out signals. Value replacement is to do with flow of blood. It's possible that replacing the value allows the heart to work better and with less stress which could impact the electrical signals or when AF happens like in my case. But there is no way in knowing until after the procedure and recovery period. At 69, unless you need bypass, TAVI is the way to go and what Arnold Schwarzenegger had done in 1997 and in 2018 he had another procedure. It's really scary but surgeons will give the best advice as they have seen and treated 100s of paitents and work in a big team where each case is reviewed extensively before treament plan is prosed, agreed and executed. Taking blood thinners is depressing at times but I don't want to increase my risk having stroke - the worst would be to have a stroke and not die but being physically crippled in some way. I had open heart surgery, and it's isn't actually painful, not that I can remember but afterwoods I took paracetamal just in case it was painful for about a month.
Agreed on the stroke risk, don’t enjoy having to take anticoagulants but I won’t risk a stroke . I was told age doesn’t come into it regarding tavi , it’s more to do with fitness for surgery and the best outcome for the patient. Given a choice I’d take the tavi option but not sure they will allow me the choice by the sound of it
It's largely science-based, relying on outcomes and studies. For individuals aged 50 and under, the approach is prosthetic. In the 50-60 age range, there exists a grey area, and either approach may be suitable. However, for those aged 70 and above, the recommended course is TAVI. The choice depends on the patient's condition and other factors they may or may not have. If you're interested, you can find more information in the literature here: ahajournals.org/doi/10.1161...
The guidelines are from the European Society of Cardiology (ESC), which is a professional organization providing recommendations for the management of cardiovascular diseases worldwide. The UK is still part of this organization, at least as of 2021 when the guidelines were written. It's important to note that the actual body responsible for setting guidelines for the NHS in the UK is NICE (the National Institute for Health and Care Excellence). You can find the NICE guidelines at nice.org.uk/guidance/ng208, and they are less technical.
I spent months reviewing the literature and even requested a brochure from one of the TAVI (Transcatheter Aortic Valve Implantation) producers, as I was considering that option. However, the surgeon advised against TAVI, mentioning a slightly higher risk of stroke and the potential need for replacement in 10-15 years. The main issue with the prosthetic valve was related to blood thinners, with bleeding being the primary complication (internal bleeding with an unknown source). Nonetheless, since I was already on blood thinners for atrial fibrillation (AF), it seemed acceptable at the time. It's worth noting that the specific blood thinner required is an anti-vitamin K, which can contribute to increased calcification over time.
I was told a mechanical valve would not be considered for me as I’m on Edoxaban . My cardiologist stated I would only be having open heart surgery as I wouldn’t qualify for a TAVI but I’ll wait to speak to the team at Papworth once I’m referred . Thanks for the info
I'm sure your cardiac surgeon will advise you about procedure & type of valve based on your specific circumstances, once referred. Don't quite understand why a mechanical valve wouldn't be an option, but that would definitely require (life-long) Warfarin as a blood thinner, unless there's any specific AF reason why you can't have warfarin? My understanding is that conventional OHS surgery (or a minimally invasive alternative) is the normal recommended default, provided a patient is considered well-enough to undergo this. If not, (due to age or medical condition) TAVI would be the recommended fallback.
I was also 69 when I had my AVR (2022) & in my case 2 separate cardiac surgeons (independently) suggested a Tissue valve (Edwards Inspiris Resilia) which probably won't have as long a lifespan as a mechanical valve, but offer lifestyle advantages. Tissue valves typically only require a non-Warfarin blood thinner, all being well only for a few months. If you have a long-term AF condition, however, you may have to continue long-term with Edoxaban (or an equivalent such as Apixaban). In the event that a second AVR is needed due to the tissue valve wearing out, I was told that the Resilia valve is an ideal substrate for a subsequent TAVI replacement.
Incidentally, I had a few (new) episodes of AF in the days following surgery, which I was told is not unusual, but which in my case was quickly resolved by meds & several infusions. So possibly your existing AF could be exacerbated (temporarily?), although I'm sure your surgeon will similarly advise on the risks & treatment if necessary.
It's clearly a big (but necessary) Op & a recovery period of some months, but with a high %age success rate & the prospect of regaining a pretty normal life thereafter.
Hi and thanks that’s really helpful. I expect to have OHS after what the cardiologist said . My AF has been much improved since my last ablation with only a a few minor episodes triggered by food usually. I’m intrigued to know if some mopping up could be done while I’m in surgery which would negate the need for another procedure in the future and I’ve read that has been done in some cases .
I doubt I’ll be taken off Edoxaban following surgery because of stroke risk but that’s fine .
I had tissue valve and pacemaker with ohs, maybe not now pretty, as I am skinny, but needs must and if someone else has a problem with that, then so be it!!
Interesting I think you are eluding to warfarin, which increases the rate of calcification.
It seems that apixaban yields similar results to warfarin, without the risk of uncontrolled plaque growth, also I would assume heparin would be an option?
I had an aortic valve replacement 20 months ago and I'm doing pretty well now. The surgery is pretty overwhelming, but to the amazing surgeons it's just another day in the office.I'm lucky that I don't have AF, but was unlucky enough to go into total heart block as a result of the surgery and I had to have an extended ICU stay until I could be fitted with a pacemaker.
If you are on Facebook then maybe consider joining UK Aortic and Heart Defects Pre and Post surgery Facebook group. I'm pretty sure that others in the group will have had AF before they had their surgery
It's not an every day thing. There's a node very near the area that they are working on. If it gets damaged then the heart sometimes just takes a couple of days to right itself, but if you are unlucky it doesn't recover and a pacemaker is needed It doesn't really affect me in my day to day life, but the 2 weeks in ICU was a little traumatic
I am one month after TAVI - I did not experience any pain that 2 paracetamol did not take care of. The procedure is uncomfortable but not painful. I am now feeling the benefit with energy and stamina - but it did take a month of going slowly.
I also had to have a permanent pacemaker implanted as the TAVI procedure caused interference with the heart's own pacemaker. This complication is not uncommon in TAVI procedures. I did not have AF or any other rhythm problem prior to the TAVI.
I knew that this was a possibility - it was on the consent papers - but was still a bit of a shock. Of course, I agreed to have it and am now recovered from the scars and initial adjustment period.
I hope that both interventions will become unnoticeable in daily life, except for the improvement in quality of life and life expectancy.
I’m 4 months post op following IE and AV valve replacement and practically good as new. First few weeks were uncomfortable but after that my journey was relatively smooth.
No experience with AF but happy to share more on the procedure which for me was OHS due to the infective endocarditis.
I’ve had my valve replaced August 24th.I feel much better.A lot of unpleasant symptoms have gone.Some things Is got used to for years have gone.I was sore but not in terrible pain regular paracetamol worked for me apart from when I coughed.
I went into AF in ITU but have had no other episodes.They will monitor your heart rhythm and treat your AF if it is triggered.
They don’t change your medicines unless you temporarily need some extra.
They offer you really good analgesics but I was ok with the paracetamol.I took oromorph 5mg twice to help with my cough.
That’s good to hear , I’m 69 and relatively healthy. I go to the gym twice a week but don’t do cardio as it tires me and can bring on my AF . I just do resistance training to keep my muscles strong but do feel very tired after .
I’m not particularly overweight but could probably lose half a stone lol . I’ve had two catheter ablations in the last 3 years which I recovered from quickly so going under general anaesthetic doesn’t worry me but I’ve been told since diagnosis that anti inflammatory drugs and strong painkillers aren’t advised if you have AF .
It’s been a bit of a shock to learn I need open heart surgery as I expected my stenosis wasn’t that serious but talking to my cardiologist on the annual review last Tuesday he said I was very close to being classed as severe stenosis and now I’m experiencing breathlessness when walking uphill he wants to do blood tests and an angiogram . His gut feeling is I will be a candidate for surgery within a few weeks or months as it’s not a long waiting list .
I have aortic valve stenosis. It's moderate at the moment but i know somewhere down the line i will need a replacement. How is it that so many people get their op scheduled for a top hospital like Papworth? I live in the east midlands and can imagine i would just be sent to a local hospital which worries me. Do you know if it's possible to request that the procedure is carried out at a particular hospital? I'm sorry to bother you and hope that your op is rescheduled soon.
Hi. I think I’ve been offered Papworth Hospital as it’s in my catchment area. Hopefully someone on here will have had good experiences of hospitals near you. Sorry not to be more helpful. Good luck!
I live in catchment area for 2 Surrey hospitals and when my heart problems were diagnosed, I asked my GP for a referral to Harefield - which was no problem. Had aortic valve replacement there 3.5 years ago. They still look after my heart issues, with other medical stuff being done by GP.
I was very worried about surgery but it wasn’t as bad as I thought it would be.You gradually recover.You need to nap a lot in the first four to eight weeks but I could tell straight away I could walk faster and I wasn’t looking for a chair to sit down.
My husband suffers from AF and had an aortic valve replacement 2 years ago by TAVI as he had already had a triple bypass 9 yrs ago. He had no problems during or after this procedure.
He had his pacemaker and ICD replaced 5 wks ago and now has leads monitoring the top and bottom half of his heart. This allows Papworth to monitor his AF.
The staff were wonderful throughout all of this and the aftercare has been excellent.
If you have open heart surgery for this you will need more painkiller but not so many or for as long with the TAVI. Also the recovery period is a lot shorter.
I had a catheter ganglionated plexus RF ablation for PAF in October 2018 which held until April 2022 when I was hospitalised with a virus beginning with c which put me into atrial flutter. This continued for several months and an echo showed my aortic stenosis had progressed to severe and I needed AVR which I had Jan 2023. I had previously been unable to take warfarin as I couldn't maintain a stable INR and had been on apixaban for several years. I therefore had a tissue AVR, Atriclip (left atrial appendage clip) and a PVI ablation. I have opted to remain on apixaban as not all stroke causing clots occur within the LAA and I have very strong family history of stroke and thrombosis.
Please join the facebook group as mentioned above by Rhinos67, a small friendly group giving a lot of helpful advice and support 😊
Another vote for the Facebook group over this, where you don't get censored for writing about 'a virus beginning with c', as Cat04 had to do. See you there!
I am now 84. I was diagnosed with heart failure, including a poorly performing aortic valve, early in 2022. I was offered a TAVI procedure which I had in August 2022 - our regional hospital in North Wales had passed me on to Liverpool Heart and Chest Hospital - this is fairly routine in our part of the world. Based on my experience I would say if a TAVI is considered medically advisable for you, accept it gracefully - in fact grab it with both hands. I had a 12-month check up in August this year (2023) at LHCH and they confirmed what I was feeling myself, that the new valve is working well and my heart performance is significantly improved. I feel this in my daily life.
The operation was effectively painless and interesting - I was even able to sneak a view as it was happening on the surgeon's X-Ray TV screen. I needed little in the way of pain relief afterwards. I wish you all the very best, and if you have any more questions I am happy to contribute what I can.
I’m hoping to have your experience but I’m in the hands of others sadly . It probably comes down to money in the end which is about par for the course now
Just to pick up on a couple points already made: I live in Reading and had initial tests at the Royal Berkshire Hospital there. The visiting consultant wanted to do the TAVI at Hammersmith NHS Hospital, which initiated weekly remote monitoring: a phone call and my filling in a questionnaire. TBH after a while I found this slightly irritating. I was never given much idea of when the operation might be done ("up to six months", and this with NHS strikes ongoing) and was told that one problem was a shortage of beds. ("Ring up after midday on the day of your op to check that we have a bed for you"!)
So I elected to go to the John Radcliffe Hospital in Oxford, where all the staff were very nice. The day after the op, I accumulated 70 minutes of walking around the hospital. I could have been discharged after one night, but was kept in for a second to check that I didn't need a Pacemaker.
I suppose that it would happen after most serious ops, but I've spent a lot of time on the Internet checking out my medications (discovering that my GP should NOT have prescribed Omiprazole anti-acid pills when I was on Clopidogrel blood-thinners) and my body's reactions to hot weather- and now the current cold weather.
Hi and hope you are doing well. I have been on the forum for a while but have only done a couple of posts ( mind you they were lengthy!). I told my tale of getting my Aortic Valve replaced which went well and I am still here! A few people commented that they foubd mu posts helpful, so please feel free to have a look yourself. I found the forum really useful in the early days, tend to only look at things occasionally these days but your post struck a chord! Best wishes with your op in due course. Robin.
Please dont worry everything will be in hand; I underwent surgery in April 2020 just as everywhere went into lockdown as a "Mystery infection"damaged my Aortic and mitral valve {covid?] My aortic was replaced and the mitral was repaired. I did suffer bouts of AFafter the surgery but this was corrected by the end of the year. Im on a small amount of apixaban along with some other meds. I was reasonably fit before all this but now I walk and attend a gym regularly and last year completed a skydive to raise funds for Stoke university hospitals cardiology unit where the surgery took place. the night before as i was admitted a porter arrived to take me for a chest X ray. As we sailed down the corridors he assured me that these folk know what they are doing, and not to worry, it would be just like me replenishing the shelves with toilet paper in the supermarket where I worked😆
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