Morning all , I’m 14 months post my second ablation which was an RF redo to tidy up the PV and left atrial floor as I was told . I’m very pleased with my progress so far with only two mild and short episodes of AF .
I also have mild to moderate stenosis of the valve which I was told in 2017 would have to be replaced within ten years . I have my annual echo appointment today to monitor any deterioration of the valve and change in the left atrium . So far in the past 6 years there has been almost no changes in the measurements taken during the echo so I’m wondering if anyone else has this issue alongside AF and has the AF caused any changes to the heart which make the stenosis worse . My cardiologist is adamant I won’t go beyond those ten years before requiring surgery so does this mean I will deteriorate quickly or suddenly as at the moment I feel well but considering the situation in the NHS I’m not confident I’ll be seen in any hurry . After all my past echo’s I see the cardiologist on the same appointment who discusses the results and any changes from the previous year . Now they are so far behind I’m told he’ll only call me in due course or if necessary .
The other question I have is regarding the surgery itself . I’m told it can be done by keyhole or cracking the chest which is a much bigger op . Has anyone else had the choice in this situation or just told what they will have ?
I’ve always been curious as to any possible links between valve deterioration and onset AF in later life as I was diagnosed with a murmur twenty five years ago with no stenosis but in 2017 when first diagnosed with AF I had developed mild stenosis .
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Hammerboy
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I can understand your concerns. Yes, my husband is in a very similar position in 2017. He was considered for a TAVI - Transcatheter aortic valve implantation (TAVI) involves inserting a catheter into a blood vessel in your upper leg or chest and passing it towards your aortic valve. The catheter is then used to guide and fix a replacement valve over the top of the old one. He was told that they wouldn’t do this procedure unless there was no other option.
It was decided that it might be stabilised if he could be converted to NSR so took Amiodarone instead, reduced AF burden to about 5% and that has stabilised his heart’s function and EF fraction is up so for the time being, continued being monitored.
We moved house about 18months ago and have found it incredibly difficult to see an EP or cardiologist, we ended up having to go privately and was reassured that at the moment, apart from requiring a PM box replacement which is booked with NHS for next month, he is doing well so continue with monitoring which means next echo will be in about 18 months time.
My understanding is that there is a link between valve dysfunction and AF but it is very hard to know which is the chicken and which is the egg.
I can’t answer your other concerns, only your doctor can, but empathise with the anxiety caused when we have difficulty just getting to see anyone to put our concerns to! Any possibility of seeing your cardiologist privately - just to get a consultation and talk over?
Hi thanks for the info , yes I could see him privately I guess but considering the only reason he is behind on consultations , is he has been joining in with strikes I’m loathe to pay him . I’m already nearly 5 months late having my annual echo . I actually feel quite healthy but I have no idea how much change there has been in the last 17 months . I was told by the registrar who saw me after my last echo I would have the choice of keyhole surgery when it comes to it but I’m not sure that will be the case now . I’m not worried about the surgery but it’s a lot less intrusive and a quicker recovery period so obviously if it’s possible I’d opt for it as I’m quite active .
My understanding is that there is a link between valve dysfunction and AF but it is very hard to know which is the chicken and which is the egg.
Good analogy by CDreamer I have moderate AS which progressed from mild over the past 5 - 7 years. My cardiologist states they are not positive of the effect on afib but it is considered a factor.
Just keep having those regular echo exams. From reading, they have improved the replacement procedure with the TAVR/TAVI. Minimally invasive. The overall condition of the heart is considered. You may want to google or go to the HU Forum on valve conditions. (sry, cant recall exact forum title).
My understanding is that valve problems concerning the mitral valve between left atrium and left ventricle can cause AF due to back pressure waves stretching the atrium and the natural electrical pathways breaking down. I have not heard of this resulting from faulty aortic valves. NB I am not a doctor just been around a long time.
Thanks Bob , there’s a lot we don’t know I guess . I did read somewhere that AF can cause enlargement of the left atrium but mine is normal size and ejection is good .
I have a bicuspid aortic valve ( 2 flaps instead of 3 ) and mild stenosis. I found out only when I had an echocardiagram related to Af diagnosis, although my gp had just noticed a " slight heart murmur" a few months before. So I dont think my valve issue would have affected AF.
I have yearly echos to monitor but seems steady for now.
I believe it is 80% of aortic valves that eventually need replacing.
There is a procedure called TAVI which does not need open heart surgery but I believe its for those deemed unsuitable for OHS. Could be wrong.
Hi , yes I can relate to that. My cardiologist at first thought I had a bicuspid valve but valve but now isn’t so sure . He was very adamant that the valve would need replacing within ten years but as with you mine has remained steady so fingers crossed . It’s frustrating that you get different answers from the experts about the same thing within the NHS . I was told I’d have the choice of op but I’m starting to believe they say what you want to hear most of the time .
Had the echo done this afternoon , apparently little change from last year . other than a pressure increase through the valve which means the stenosis is progressing slowly . Still need to talk to the cardiologist for his opinion but nothing to worry about at this time
Sorry you are having these problems, I know how agonising it is.
I am 83 years old, was diagnosed with AF approximately 20 years ago. Had a pacemaker fitted in 2004 as I was failing on my left side and almost fainting. From then I had a check up annually and all was ok apart from getting breathless more and more as time went on, which I put down to sotalol which did have a warning in the paper work.
Due to covid I had to wait for a consultation with a cardiologist due to my increasing breathlessness.
I was told after lots of tests that I have moderate to severe aortic stenosis, also an
Aneurysm, plus a bicuspid valve which I was born with ,it’s a deformity.
The upshot of all this is to say to you that I have survived all these years.
Initially I was due for an operation but I am monitored frequently and am still alive and kicking.
I do get tired but am able to do light housework.
Forgot I have type 2 diabetes ,arthritis, and osteoporosis.
Don’t give up keep smiling and don’t let your heart consume your life, live it, good luck.
Many thanks for your reply and well done for surviving and dealing with your health issues in such a positive manner. I’m 69 and it’s only the last 6 years that my health has been something I’ve had to think about . I’m comfortable with the AF once I knew what it meant and how to live with it and after two ablations I’m in a much better place . I’m told my valve is probably bicuspid but they can’t say for sure and after yesterdays annual echo my stenosis has stayed mild to moderate for the time being . I would say the only downside for me is being on anticoagulants for life and not drinking which I always enjoyed socially .
Life is always about compromise so I’ll live with those downsides and accept I will never again march up mountains like I used to .
I’ve only ever been a social drinker and enjoyed the Christmas parties and trips to the pub with friends and family. Unfortunately alcohol is a big trigger for AF so I was advised to abstain once I was diagnosed
Just saw my cartiologist and he indicated my progressive aortic stenosis is actually looking better and will be reviewed again in a couple of years. At 78yo, this is very good news and will probably 'see me thru'.
My husband has permanent AF and has had aortic stenosis monitored annually for years (he's 79).This slipped to 2 yearly for a while but now annual again and always told no change in echo. This year saw cardiologist and husband admitted to being more breathless so the plan is to refer to Leeds team for possible intervention ?TAVI or the full Monty. Cons. also said that they are now doing TAVI on much younger patients than before as they have shown their worth and been around for longer. Cardio then asked when he had his coronary artery stents (2005) so feels he needs an angiogram first as if they are the issues a TAVI would be ruled out, also Peripheral Arterial disease may need checking out. First thing an angiogram "in a couple of months" consult 23/8/23 no sign of that yet. I could go on re other ailments intervening but it won't answer your question. We seem to be testing every specialty at present.
I was told yesterday that TAVI is generally only considered on older less well patients who maybe cannot cope with OHS . Also they said that TAVI isn’t as effective as a replacement as the valve tends to be slightly more restricted making it harder for the heart to pump blood through it . I have no idea how accurate that is so I’m going to wait till I get to discuss it with my cardiologist when he calls me to go through the results of yesterdays echo
Hi, I had 2 valves repaired in Dec 21. I went private cos of NHS waiting time. I could choose surgeon and went for one who did both keyhole and open heart. In the end I decided for open heart for following reasons. Keyhole is still very experimental in UK, more common in Europe, so not many UK surgeons have much experience, also if anything goes wrong they have to open you up to fix it. My EFR was low cos of leaks so that was a complication.
Open heart means more issues re post op such as not doing anything strenuous with your arms for 6-8 wks, only allowed to lift cup of tea, but not a kettle to make it. If you have a partner they will have to help. I'm 75 so body perfect doen't worry me and a 4 inch scar is much smaller than my abdomen scar from my cancer op aged 40.
Thanks for that, I guess my cardiologist will recommend OHS if the time comes I have to have a valve replacement. I recall him saying about 3 years ago the recovery time is longer and more risks but it was also the most common operation carried out on the heart. He did say the scar would be about 12 inches long though 🤔
As you I’m not that body conscious but a smaller scar is better . I had my gall bladder removed 7 years ago and had drainage and catheter holes in my abdomen but you can’t really see them . I’m all honesty I’m more concerned about the time taken to get back on my feet and enjoy normal activities. I train and show 3 large dogs so my wife will bear the brunt of it
hi again, you do have to be careful for 6 wks, no driving etc, to allow chest bone to knit. But NHS should offer you heart rehab and district nurse took out my stitchs and checked wounds etc. Had heart scan about 6wks ago and they said everything was good, repairs all working, no stenosis and EFR back up to 60
Hi , I had to have an Aortic valve replacement in 2017 due moderate/severe aortic stenosis caused unfortunately by an undiagnosed congenital aortic bivalve disease. My understanding at that time was that TAVI was only being offered to patients who were too ill to survive OHS. The only real decision I had to make at the time being only 47 yrs old was wether to opt for an artificial valve or a ‘natural’ valve replacement. The main benefit to my thinking was an artificial valve should last 10+ years longer than a natural valve before needing replacing again the down side was that I would be on warfarin. As I had said I was only 47 at the time so weighed up the possibility that I would quite possibly require at least 2 or 3 natural valve replacements as opposed to only probably 2 at most of a mechanical valve. Given the longer lifespan of the mechanical valve I opted for that despite the issues associated with being on warfarin permanently. Apart from having some issues with post op AF initially whilst in hospital which settled to a longer term issue with mild tachycardia that they performed an ablation procedure to eliminate signals from what they said was scar tissue from the original valve replacement, I have been fine since and back to a normal life in the main.
Thank you , that’s good to hear. Being older and already on anticoagulants for life I’ve been told a mechanical valve would not be possible so a natural valve will be used . My AF is very well controlled so I’m hoping that whenever the valve needs replacing I’ll be in a good place . As I’ve said on previous posts my main concern is not the surgery itself it’s the recovery time and how soon I can get back to normal activities. I would like to ask though , what difference did you find in your energy levels once the valve was replaced . The only thing I find at the moment with mild to moderate stenosis is that I struggle walking uphill and have to keep stopping to catch my breath , on level ground I can walk for miles . Did you notice , once recovered from the surgery , you were fitter and could manage hill walking . I do a lot of hiking
sorry for not responding at the time I missed your response. My recovery time was relatively quick the only issue I had was because of my job as a home carer for disabled clients I had to take 4 months off work to allow my sternum to completely heal due to the lifting required in my job. Pre diagnosis I was having problems with exercising even up a mild incline, given that I had had what has since been recognised as a congenital aortic bivalve malformation of the normal aortic tri-valve. I had been experiencing what appeared to be episodes angina and despite there being no apparent occlusions or narrowing of the coronary arteries. It was only after they decided to do an echocardiogram that I was diagnosed with the moderate to severe aortic stenosis which was causing my cardiac symptoms.
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