hi my mum has been diagnosed with proximal AF and aortic valve stenosis. She now has to wait for a cardiologist appointment which she has been told could be a long time due to waiting lists on the NHS.
she has been out on blood thinners. Is there anything else she needs to be aware of? Has anyone else had this diagnosis and got through the other side? Thanks 🙏🏻
hello. i started having bad bouts of palpitations and chest tightness, among other awful symptoms, in 2019. it is now 2023, my symptoms are even worse, so bad that i doubt i'll be around for long, and docs still have not gotten to the bottom of what's going on. i've been left to suffer, basically. many of you in the UK support all the NHS strikes, but they've absolutely infuriated me and they've also traumatised me. 24 hours isn't good enough for them. they have to strike for days, again and again. it's a form of terrorism against the vulnerable.
when you're not well, knowing that nobody is around to help you if you get really bad causes you so much distress. you think "please let me not be bad when they strike." Because people like your mum will be made to wait a lot longer to be seen and treated, and that's not right. Using vulnerable people as leverage to get a pay rise isn't right. But most people support these strikes. how many people have these strikes indirectly killed.
Apologies as i cant answer your specific question but i'm sure someone else will be able to.
dear Pinky
I can give you a few words about stenosis of the aortic valve. That should not be a problem until the stenosis is severe. Before that it might be moderate, which means she will be monitored.
If Mum does reach severe then you will see the NHS in a different light. All systems go and short waiting lists.
A had slight stenosis and it was no problem, for about five years. Then moderate and it was just regular checks. About a year. Then it got severe and all systems were go. New valve fitted and now no problem. I was 72 so old enough to have a non metallic valve. Should see me out.
I have no knowledge about AF. Others will no doubt be on here soon.
Regarding the stenosis, it would be a good idea to keep moving and to get diet and weight reasonable.
Say hello to Mum
Sooty
Thank you so much 😊 my mum is 73.
I’m glad to hear you have a new valve!
That’s good to know about the different stages. I will let her know.
Yes, I had heart valve replacement due to severe aortic stenosis back in 2008 and I was also born with a bicuspid aortic valve. Unfortunately I suffered AF after the operation and for many years since. I was taken into A&E with AF and dizziness only a few weeks ago when the junior doctors were on strike and, to be honest, I had the same care and attention as I have always had and expected. I was admitted to cardiac care unit where I was told they could do no more for me and advised me that I needed a pacemaker. I agreed and asked how long, thinking I would be discharged and put on a waiting list, I would have to wait and was told that I would not be discharged and that I would have the pacemaker just soon as they could get a bed for me in a London Hospital. I only waited a few days. I am now home with my pacemaker fitted and could not fault the care that I have had. If you really need urgent medical attention, then I think you get it.
Hi Pinky20JI don't have experience with proximal AF but I do have experience with aortic stenosis mine is classed as moderate stenosis. Hope your mums ok x
Thank you x
Pinky, Sorry to hear this.
These are two separate diagnoses.
Paroxysmal Atrial Fibrillation is AF which comes and goes. Many many people have this as it is common, especially as people age. The treatment will start with an ECG to see what the heart is doing, probably one that you wear, called a Holter monitor, as it's paroxysmal. Then a Cardiologist will decide what treatment is required. This would probably be one medication or another, either to try and make the rhythm regular (anti-arrhythmic) or to slow the heart down (usually a beta blocker). If things are very distressing and/or exhausting, you should talk to your GP and explain this, to see if you can get seen at a higher priority. Get to learn as much as you can, there are some great videos on Youtube by Dr. Sanjay Gupta of York Cardiology. There is also a specific AF forum here on HealthUnlocked.
The aortic stenosis is a narrowing of the aortic valve between the heart and the aorta. In its early days it is not usually too problematic. However, in time, the stenosis can get worse and there will be more shortness of breath and tiredness. Eventually, the aortic valve is sometimes replaced by a new valve.
It may be difficult to separate out whether the AF or the stenosis is causing breathlessness.
To minimise the risk of stroke caused by the AF, make sure your Mum keeps up the anticoagulant (blood thinners). If this is warfarin, make sure the INR and dosage levels are regularly tested. Your GP surgery will manage this. There is also the option of "DOAC"s, a Direct Oral Anti-Coagulant, these still need monitoring, but not quite as often as Warfarin. More info at cks.nice.org.uk/topics/anti...
If things get really difficult, call 111 for advice, and they may recommend you get to A&E.
Best wishes
Re the Aortic valve Stenosis, your Mum should have been told whether this is "Mild", "Moderate" or "Severe". These classifications are usually determined by scanned measurements as part of an Echocardiogram, which hopefully your Mum has had to confirm the Stenosis diagnosis? Mild or Moderate Stenosis will normally be kept under periodic review & monitoring, but when it reaches the Severe stage it really needs to be scheduled for prompt replacement valve surgery. So, if you don't know already, I would suggest following up to determine what classification your Mum's case has reached - & keep chasing up
Hello Pinky20J, nothing re aortic stenosis. For PAF if she doesn’t already monitor her own BP then home machines are affordable. Perhaps get an appointment at the GP practice for it to be checked then she’ll have a baseline and they should give the parameters for it for her age, size and any other pre existing health issues. If they decide she has an BP issues they can address those whilst awaiting an appointment. If finance were to not be an issue perhaps think about getting an initial private EP appointment. Maybe avoid caffiene, alcohol & high salt foods. Hope she gets on ok
Thank you. Yes we are looking into a private initial appointment with a cardiologist.
Hi I am 75 and had aortic stenosis as others have said it needs to be severe for a op to be done I had mine done by TAVI which is usually offered to older patients much less recovery time and only 2 days in hospital so your mother may be offered that As you have indicated it may be a while before she gets an appointment this may indicate she is not yet in the severe stage but her gp should be able to explain what stage she is in. Symptons of severe are being exhausted the entire time and breathless were the main ones for me and I had 3 faints as I was waiting for the op but my wait after seeing cardio and deciding on TAVI was 7 weeks There is a longer wait for open heart surgery which is based on your condition My treatment was first class and I had a cardio nurse checking on me when I got home and I am doing a 6 weeks cardio rehab which is great
wow, you’ve been through a lot. Glad to hear you are recovering. Thank you so much for the information.
Send our regards to your Mum.
My Aortic valve was classified as severe in December last year; bicuspid, stenosis and leaking. As a sixty year old I was in shock.
Valve changed in June for the Edwards (non-mechanical), after I was losing consciousness and coming up to six weeks today since OHS. NHS has been amazing but swamped in places. Need to push a little to make sure you know how the queue is working.
I did 5km walk yesterday and it can be done but a bit of courage needed. Fitter everyday. For me life is already better but you really need to manage your expectations for recovery. And everybody is different. All the best Julian
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