Aortic Valve Replacement Monitoring

[Petitlady]

I had a surgical aortic valve replacement (tissue valve) in June and I have been lucky enough to have an uneventful recovery. I opted for private surgery because long waits and lack of communication from the NHS was causing me such stress and anxiety and recently retired I had savings I could use. I saw a cardiologist and was referred to a surgeon and had OHS. In August I had an ECG and an echocardiogram and was signed off by him. The valve is working well and I think I made the best decision for me. I am now wondering what to do about future monitoring. My GP has shown zero interest before and after I opted to go private. Should I ask him to refer me back to NHS. I know there are nurse led clinics for NHS patients? Should I be seeing a cardiologist again soon? I am well and apart from some chest discomfort and fatigue pretty much back to normal but I’d at least want my meds reviewed to see if I could drop Bisoprolol soon. I’d be interested in others experiences of ongoing monitoring, NHS and private

[Julie_O]

Hi there,

You are brave for opting to go privately, I wonder how different the care you received was to the NHS, eg, mine? You are lucky too to have that option.

I would like to understand the monitoring policy of the NHS too, if anyone knows. My operation was in 2021, I had two valves replaced (mechanical) and thought the cardiologist said that I will be monitored every year. That was in June 2022. Should I chase up when my next appointment will be? I seem to be having a bit of swelling, which worries me.

xx

[Petitlady in reply to Julie_O]

Hi Julie. The surgeon and cardiologist both work for the NHS, so I think I got the same medical treatment. What I paid for was certainty really. The NHS told me it was severe bordering on critical and then I waited to hear about an angiogram. After two months of silence I went private and tests were arranged days later. I do not know how long I would have continued waiting on the NHS or whether it would have meant my heart was more damaged by the time I had surgery. I also felt I was treated more as an individual than I have previously been in the NHS. Pretty sure the two days in ICU would be the same in any well run hospital. After that I had a private room, which made it easier for family to visit. I suspect there are more nurses around as well, but I’m comparing with other hospital stays for different problems. It made a big dent in my savings but I wanted to do everything I could to enjoy my retirement and if I’m healthy but a bit poorer it seemed like a good deal.

[Julie_O in reply to Petitlady]

Certainly - you did exactly the right thing for you. Mine was at the same stage, and luckily for me, I had lots of tests scheduled quickly. However, I was diagnosed on 25th November 2020 and did not have surgery until 19th February 2021. By this time both my mitral and aortic needed replacing, and they replaced part of my ascending aorta (although I am not entirely sure what that is). The only reason that they admitted me in February was because my husband kept calling. We sent them photographs of my swelling and the surgeon operated as an emergency. I was very lucky, considering it was lockdown. I was in a ward with three other lovely ladies, so no private room, but that isn't a problem.

How are you at the moment?

[Rhinos67]

Hi

I had my valve replaced in April 22 under the NHS . Check up with Cardiologist July 22 and a further check up April 23.

I have also had telephone appointments and pacemaker clinic checks. I did have some complications, total heart block needung 2 weeks in ICU and then a pacemaker though.

I'm next due to see them for further tests in January and all being well will be discharged by my surgeon and placed back under the care of my Cardiologist.

I haven't had to chase any of these appointments and all and can't fault their care since I was discharged, although I understand that this might not be the case for everyone.

I wouldnt worry about any more tests or check ups yet unless you feel unwell

Joanne

[Julie_O in reply to Rhinos67]

I have a bit of swelling at the moment, which worries me. I had some blood tests which showed a very little chance of heart failure. However, I suffer severely with health anxiety, so everything is my heart (in my head). I do think that I will chase up an appointment:- I have quite a bit of hair loss and feel sick every day, which could be down to warfarin, so I am going to ask about Sinthrome. It is hard to function when you feel so sick and I have 14 more working years before I retire, I love my job, and don't want to stop right now.

It is true though, I cannot fault the care that I received, and during lockdown too. I will always remember the first thing the ICU nurse said when I cam round after surgery "Would you like your phone?" I took a selfie and sent it straight to my husband xxx

[Petitlady in reply to Rhinos67]

Thanks for you reply. It must have been frightening to end up needing a pacemaker. I had a higher risk of that than most people as I have left branch bundle block but in the event I was fine when they removed the pacing wires. I hope your January appointment goes well!

I have seen guidance that suggests we should all be checked once a year and I was wondering what happened in practice and whether I need to make sure I’m on someone’s radar.

[Blackcatsooty]

I too went private for AVR. April 2021. NHS hospitals closed at this time. I got fabulous service from wonderful staff. Very smart London hospital, with no patients as many would come from abroad. I have had no problems at all.

My GP sent a nurse to take my stitches out. My GP monitors the medication.

I now get an annual check up at the local NHS hospital, together with two scans and I get the results in minutes.

There is a nurse who controls these check ups. She has a consultant on tap if there is a problem.

My GP totally agreed with my going private.

Things are improving at the NHS , really good.

I allowed my op to be monitored by students. They raved about the surgeons ability and they confirmed I had weeks to live.

It cost me £43,000. But I have got more than that in pensions during the past three years.

I never got any rehab. Lots of promises but no chance. I could go private but the journey would be ludicrous.

I have been logged in for NHS annual reviews. In the meantime I can refer to the staff at the private hospital. Or the nurses on this site.

I hope you go forward with the same super service.

Sooty

[Petitlady in reply to Blackcatsooty]

Thank you. That’s good to know. Like you I went into London for surgery and I had very good treatment. It actually cost me a bit less than £40,000. The surgeon told me my valve had narrowed to the size of a hole in the middle of a polo mint. The private hospital also linked me up with a cardio rehab provider and I have been using that. Having only just reached 66 I am pleased to still be here to claim my state pension (originally expected at 60) and my free bus pass, hopefully for many years to come😂

[Julie_O in reply to Petitlady]

Of course I had my treatment on the NHS and was extremely lucky, as we were in the throes of lockdown!

[nursenancy53]

Good morning

May be slightly different for me as I live in Northern Ireland. I had a tissue valve in November 2018, check up in January 2019 and in March 2019 a further check up and an echo because of problems with shortness of breath. Sadly the breathing problems have not resolved but I have had no further check ups apart from an annual review with our practice nurse - bloods, weight BP etc - have just about given up now and plod on as best I can. Good luck for the future.

[Petitlady in reply to nursenancy53]

Thank you. It must be frustrating if your breathing problems are not being resolved.

[TriumphLover]

I’m only 6 weeks after my valve replacement ( also private ) and haven’t been signed off by the surgeon yet. However, I did ask if it was annual checks and he said that once signed off he will see me in 5 years!!

Ironically that gave me more confidence that they trust the tissue valve not less!

[Petitlady in reply to TriumphLover]

I hope that’s right! I came across this article when I was googling the subject. It’s interesting and although a bit old, now not much seems to have changed considering the different regimes people are experiencing bjcardio.co.uk/2012/05/rout...

[080311]

Hello,

I had my Aortic valve replaced (tissue) and by pass done in August of 2016, by the NHS, my time scale was 6 weeks check up with my surgeon discharged back to my cardiologist saw him 6 months after my surgery he discharged me back to my GP. I have an echocardiogram done yearly at the hospital, have review of my prescription drugs by my GP along with blood tests, blood pressure checked, weight checked yearly.

If I have anything to worrying me to see GP and if was concerned he would refer me back to the cardiologist. At 8 weeks I was referred to cardio rehab, if you haven’t already started do look into it, I found it invaluable. You are with others who have gone through the same or similar issues. And that twinge you get from where they harvested the artery from is normal.

I am now 7 years down the road, at some point I will need a replacement valve, so every year when I have my echo, say thank you to my pigs valve 😂

Hope your recovery continues to go really well.

Best wishes Pauline

[Petitlady in reply to 080311]

Thanks! I am currently doing some cardio rehab (by Zoom!)

[nursenancy53 in reply to 080311]

Lovely to see you on here Pauline, hope all's well x

[080311 in reply to nursenancy53]

Morning Eileen,

I tend to look in a few days a week, see how everyone is doing. I am not too bad, health wise valve is okay, though do get more out of breath. Life in general plods along, miss John dreadfully. Sometimes just need to hear his voice, there are times when I do hear him saying come on get yourself together!

Hope you’re doing well, the year is flying by isn’t it?

Take good care Pauline xx

[DinoCat]

I had my AVR operation privately (Oct 2022), but was then referred back to my original NHS cardiologist. I definitely think that you should be back on the 'NHS radar' as there should be future checks of Meds & echocardiograms until they are confident that everything has settled down well. In my case I had Cardiologist reviews after c3 months post-Op (when he was happy for me to cease all Meds) & again after c6 months (to review the results of a further Echocardiogram to check that all was still well with the new valve). I am due another Echocardiogram after a further year & I understand that if all is still well then, there may not be a further scan for 5 yrs. I was under the impression that the above checks sequence is broadly in line with NHS policy, but I guess it always pays to keep following up to make sure that post-Op checks etc do actually get scheduled!

[Petitlady in reply to DinoCat]

Thank you. I’ll see how I can get something similar in place. I didn’t actually get to see an NHS cardiologist as I was diagnosed at a nurse led clinic and then arranged a private consultation when I hadn’t been offered a cardiology appointment or any sort of follow up / communication two months after I had been told I needed urgent surgery.

[Leonardo1]

I had same op - 18 months ago ( Nhs very speedy service ) and essentially- your fixed ! I expected regular checks echocardiogram once a year regular checks by the cardiologist but no .

If I have any issues it’s back to the Gp mine thankfully is top notch . My neighbour had the same op 15 years ago and she too said the same - you’re essentially fixed so live your best life . Which I wholly agree with !!

[Petitlady in reply to Leonardo1]

I have tended to be someone who avoided going to the GP, so as not to wasted their time, which is probably why, by the time I went the situation was urgent. I always thought the NHS would be there when I needed them and I have rather lost my faith because they didn’t respond well when I had a life threatening problem. I would like to believe that checks are not offered because they are not necessary, but just reading the different experiences here does suggest it’s more to do with the local management practice than clinical judgment

[Leonardo1 in reply to Petitlady]

That could be very true , like you I avoided all health interaction being very much not wanting to be a time waster. But when I needed them they were there although I did have to get a bit pushy which was against my nature . I worked in the Nhs for 12 years it’s incredible , but …as we used to say it’s not broken it’s just that there are too many patients !

I too looked at going private but thankfully they came up trumps . But reading the other replies it makes my post op care look pretty thin ?

On the positive I am very fit and well snd try really hard not to over think every little twinge tweek or wobble !

Good luck with your recovery enjoy every second of your new valve .

Ch

[BicuspidBloke]

I had mine done August 2022. I had been told all along I would be monitored 3 to 4 tines per year by the Cardiac team and 1 to 2 times per year by the GP (or wider health centre nursing team).

This was fine between Feb '22 (diagnosis) and Aug' 23. Then I was told because I'm 100% fine I can be discharged. Now I get that this is great news and a positive. I get this means they can help new referrals. I get that I opted for a tissue valve so I wouldn't be a perpetual patient.

But now one appointment per year (with the Health Centre, ironically tomorrow) seems somewhat underwhelming and slightly nerve-inducing. I know I'm "fixed" but I would like the reassurance of the promised annual echo cardiogram.

[Petitlady in reply to BicuspidBloke]

I wonder if you’ll be offered an echo at the health centre? My diagnosis was made after an echocardiogram at a nurse led clinic at my local health centre. I didn’t see a cardiologist for another two months, but the nurse led diagnosis was spot on (unfortunately!)

[BicuspidBloke in reply to Petitlady]

Thank you for this. I will ask tomorrow whether they can refer me in for one each year. Thanks for the tip.

[Julie_O]

Well 2021 I had two metal valves and I have had only one scan . I think I have one scheduled for December x