Looking for advice please. 63 year old male, born with bicuspid valve, had AVR with mechanical valve and aortic root graft in December 2019. Always been very active (not showing off, but ex-international athlete who then maintained activity in many sports until the lead up to my AVR). The only medication I take at the moment is warfarin. My INR is generally bang on 2.5. Experiencing ‘thick head’ and a feeling of pressure in my head. Occasional random dizzy spells. My blood pressure is generally in the low pre-hypertension range, sometimes rising to the Stage 1 hypertension stage. I suspect I am going to need to start on blood pressure medication of some kind. I have a feeling that my blood pressure is rising too much at times when exercising. I am waiting for a telephone appointment with my GP, and the earliest appointment is in two weeks time. After my heart surgery I was was placed on Bisoprolol beta-blocker (smallest dose 1.25mg) as a matter of course. My normal resting heart rate is 48/50 range. I had to come off the beta-blocker as it was lowering my heart rate too much.
I am hoping to maintain my active lifestyle, and having already experienced how the NHS deals very poorly with physically fit and active people (at least in my experience). I am wondering if anyone out there is maintaining a very active lifestyle after AVR and what type of blood pressure medication they are on. I am in the fortunate position where once I have seen my GP, I can use my medical insurance if needed. In a similar vein any advice on what type of medical person I should see and any particular types of testing that may be applicable to my situation. Sorry to witter on, and any advice will be gratefully received.
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Mikedabike
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Hi there. The operation was carried out on the NHS. perhaps I should have specified that from the point I had my AVR, the NHS service was exceptional. However prior to that just a personal viewpoint but it left a lot to be desired. So much so that my cardiologist prior to my operation even apologised to me for his misdiagnosis and for his underestimation of the seriousness of my condition.
Hi, my husband had his AVR 3 years ago. He's on warfarin, bisoprolol, lisinopril and spironolactone, all at low doses; the latter 3 to regulate his BP, which now stays within the normal range. He has Dilated Cardiomyopathy. He’s never been an elite sportsman like you but enjoyed keeping fit and was always active. He finds he gets a fuzzy head after he takes his meds, especially in the morning, so has had to moderate his activity but he does what he can.
He’s discussed this fuzzy feeling with his cardiologist over a few years but finds they are reluctant to reduce doses or switch meds, partly due to NICE guidelines which state target doses. He did have a 24 hour heart rate monitor to see how his rate control, is with a view of changing meds but no following action - delays due to covid.
So you may find that getting personalised medication (which is supported by NICE guidelines) isn’t very achievable at present. Good luck though.
I had an AVR in Oct 2019 and they put me on Ramipril, a low dose of 1.25mg. I don't have high blood pressure, they just said it will help in the ling term, especially with mechanical valves.
I've no experience of AVR, but had a triple bypass 3 years ago. I know what you mean about the NHS dealing with fit people. The vast majority of cases the NHS deals with are people that are quite ill, some critical, so when they deal with someone that is fit, there is to some extent a lack of understanding. I expefienced surprise and concern that I should not overdo my exercise. Walking for 3 hours non-stop just 2 months post-op was certainly outside their terms of reference.
I did manage to impress upon the cardiac team at my local hospital that I was quite aware of my body and capable of tailoring my exercise to suit my recovery. Half the problem was that my care had been transferred from the hospital that carried out my surgery, so there was a disconnect in communication. Once the local cardiac team understood my case, I received ample support until I was discharged to the care of my GP - then support ceased. My wife was quite concerned about the lack of follow up, but I was on my own case, as so to speak, and was happy that I had the necessary back up should I need it.
All I can advise is to be aware of your own body and tailor your exercise regime to suit. Basically take it steady and see how you go. The occasional relaxation day is very important of course.
As for medication for high blood pressure, well you will need to discuss this with your GP. Personally I worked my way through several medications which affected me in various ways until I was prescribed one which suited me. I now have a long list of allergies / intolerances! My GP declared me to be a "nightmare to medicate". How true that is,
Thank you for your reply Gerald. I am still waiting for my phone consultation with my GP next week. Until my AVR I have always been in the lucky position of being very fit and healthy. My BP now seems to be regularly in the stage 1 hypertension bracket. My concern is when I am exercising that it may be going too high. I am almost adjusting my mind to the fact that I may need blood pressure medication, but I want to be able to continue with my very active lifestyle.
I have been on Losartan for my BP since 2011 without any issues. I had previously been prescribed Ramipril and Amlodipine which did cause problems, particularly when I was exercising. It was a case of getting the right medication for me. Following my bypass, I am still on a small dose and I am happy with this. Don't worry about BP medication limiting your active lifestyle... I'm still regularly climbing mountains. 😀
I too have had born with …bicuspid valve, had AVR with mechanical valve in July 2019
My valve was Calcification and critical, I went up the stairs one night to bed and blacked out fell all the way down the stairs.
I was in hospital in Cardiff for around 6 weeks they had to make sure because I was so critical I wouldn’t blackout and not wake up again, Had AF after operation around second day they give me potassium drinks, I then had one more A F after around the 6 day mark not nice not nice at all, body shakes the lot very Scary.
Before operation I had a lot of dizziness I remember shaking my head to stop me from well I was sitting even, this got better around 6 weeks from my AVR I remember being very disappointed that I still had this dizziness fuzzies in my head that it was my heart, but it cleared up until recently I get a fullness in my ears and like I’m drank
I don’t drink lol
I’m on warfarin 5 5 times a week and 6 two times in the week, I get tested 6 weeks apart my range is 2.5 to 2.8
I’m also on bisoprolol 2.5 Iv been on this from day one of my AVR
I also take 40 of Atorvastatin my Cholesterol is 3.2 low ?
I also take Blood pressure tablets 50 Losartan
I do get Etopics beats a lot more but this dizziness I hate more I should but don’t drink enough water I’m looking for support on hear with medication and this dizziness like you are experiencing and what your dr telling u you r experience I’m due to go see my dr in October so I hope this clears up for me and yourself and others because I don’t know if it’s high blood pressure low blood pressure or the medication
Hi Madyy thank you for your reply. I understand perfectly how you feel about the dizziness. 3 days after returning home from my AVR I had an apparent TIA. I have no recollection of it at all. Luckily my wife was at home and called the paramedics. I have a ten hour gap of no memory whatsoever. I woke up in the stroke ward and felt perfectly fine within a few minutes. The problem now is that each time I have a dizzy spell I am terrified that it may be the onset of another TIA. I have started monitoring my BP and it does seem to be rising. I am beginning to adjust my mind to the fact that I may need BP medication. The frustration now is waiting for my telephone appointment. Don’t get me wrong I realise in the grand scheme of things I am very lucky, and there are many, many people out there who are far worse off than myself. I will update you if I get any progress or advice on the dizziness. Thank you.
It’s great to have this forum we all have different stories and how we coping …and by writing on the forum , it’s support on a rubbish day ,or a good day to write up all the positive and the challenges and concerns 2 years on
I’m glad I have come through my operation ,I told the surgeon if you get me through the operation ,I can do the rest Lol,… it’s not easy /But remember where we been to get through all that, to now ,…Big hugs
Sorry can’t give you any advice but hope you don’t mind me asking you a question. I was born with a bicuspid valve and only found out 2 years ago. It’s at the Moderate stage and hadn’t changed in the last echo thankfully. Why did you pick the mechanical valve?
No problem at all. I’m 63 years old and my decision was based purely on the fact that I did not fancy the thought of having to undergo further major surgery in years to come. Having said that of course, it’s no guarantee. Perhaps of interest just 8/9 months prior to my operation I didn’t even know that I had been born with a bicuspid valve. However in a matter of months I went from completing the Pennine Way and cycling in the Italian Dolomites to being out of breath tying my shoelaces. I did have quite a problem getting across to the medical profession how rapid my deterioration had been. I found that as I presented the image of a fit healthy individual, it was very difficult to get the message across that I instinctively felt something was seriously amiss. It was only after I had a CT scan that they put me in a wheelchair, and wouldn’t let me move. I was then kept in the hospital for 2 weeks until my AVR. As I have mentioned above the cardiologist even apologised to me. I have to stress again though, that once I was kept in hospital the service from the NHS was superb.
Thanks for your reply. It came as a complete shock to me as well as I have always been very active and still manage 15,000 -20,000 steps a day at 66. I have no symptoms at the moment thankfully but obviously it’s always at the back of my mind, so just interested in gathering as much information as possible.
With me, my Bicuspid valve was from birth, I always knew about it well I knew I had a heart murmur, when I was carrying my son in 1980, I wasn’t very well they give me a Caesarean delivery because of my heart murmur …and told me to not to have any more children which I didn’t,
then about 5 years after when my son was starting school, I was having so called panic attacks all put down to panic attacks, I never ever went to the dr or any heart drs, I just put it all down to anxiety so did my family…
I blacked out at 57 fell down the stairs and was lucky to wake up because by then, I was critical well my AV was…
See let this be a lesson to be on heart dr lists I personally think now it’s better to know than not,
I’m assuming from your post you go to your heart clinic yearly now, because you know how your Aortic Value is, please correct me if I’m wrong/ so how I came to choice of valves, age is one thing, I was 57, I have never drank alcohol so with me needing to take warfarin Daily with not the need to give up alcohol, that wasn’t a issue , but I love all vegetables like sprouts but I have found that’s not been a issue at all , my INR is within a good range, I will be honest at first my mechanical valve has made me anxious but I’m two years on now , for me it is mostly I’m hoping to never to have the need to have surgery again, Every 6 weeks I go for my test INR bloods I’m known at the Drs now lol so I think also it’s down to what ever choice we make we all want the best long term extension on our lives which thank goodness this operation gives us Big hugs all The night before my operation my husband said we have run out of fairy liquid to wash the dishes so I went shopping, and got some
That’s my job I said lol and I got really upset, not about my other half buying the fairy liquid but life goes on, So my Aortic mechanical Valve allows me to buy the fairy liquid to wash the dishes /
The doctor only picked up on the murmur when I went about something else and arranged the echo which I now have yearly and so far so good. I can relate to what you were saying about the palpitations I used to get them but was just told not to worry. I have 3 girls one has yet to be screened. Like you said it’s better to know than not. Re the mechanical valve it does put me off a bit especially having to take warfarin for life and some people have mentioned the ticking noise they can hear. It sounds like you are doing really well which is encouraging. Hope you have a long and healthy life
Thank you that’s very much appreciated and I wish you the same, yeah the medication and the warfarin it’s a pain but it’s part of the deal that’s a way I look at it, my son needs to be screened Like your daughters, I’m glad your echo picked it up it’s the calcification to watch, I’m so glad for you it’s not changed, I’m new be on here please don’t go away Stay with our stories I’m sure it’s going to help and of a great support to us all on the days of good or bad …Big hugs
Hi MacRodney. At the moment I’m not on any other medication, so I find taking the warfarin isn’t a problem. I found the ticking noise of the valve very noticeable for the first few months after the surgery, but in a strange way I found it comforting as I thought “well I’m still here and it’s working”. Now approaching almost 2 years later I hardly notice it other than if it is very quiet, or occasionally at night. With the warfarin and INR readings, they generally take quite some time to initially settle down after the surgery as would be expected I guess. I love my vegetables and was mightily disappointed when I found the number of things that are high in vitamin k. Over time I have realised as other commenters have mentioned on other threads. You can actually still have these vegetables, the key is consistency. Similarly with alcohol. I enjoy a drink, but I only drink beer and lager and not in huge amounts. Recently I had arranged to meet up several friends who I hadn’t seen since lockdown. I knew I would be drinking a tad more than usual. It was the day before my warfarin check up. Luckily I was able to rearrange the appointment for a few days later. The result, my reading was bang on 2.5 again. I have found the staff at the warfarin clinic to be very helpful. I’m lucky that I am semi-retired. If I was younger I may find attending the clinics too much of an inconvenience and I would possibly have considered other alternatives rather than a mechanical valve. Some NHS areas support INR testing at home. Apparently you then just email the INR clinic with the readings. This doesn’t appear to be the case in my area. The good thing is that your murmur has now been identified, and you will get your regular checks. You sound as though you are quite fit and active. After my own experiences prior to my operation all I would say is that if something doesn’t feel right, do not hesitate to contact either your GP, or even attend your local A & E. Good luck with your progress.
If I was younger I may find attending the clinics too much of an inconvenience too, and I would possibly have considered other alternatives rather than a mechanical valve, but my family would of never agreed it’s difficult more so for me I can’t go anywhere on my own my anxiety is not controlled to where I can cope without someone who I can trust to take me from A to B I would love it if I could send in my reads by email Thank you for your post I’m going to find out if this is doable at my Gp saves going to INR clinic
Like MacRodney my murmur was only picked up when I went about something else. As I was on the ward for two weeks prior to my operation I was regularly examined by trainee doctors to see if they could pick up the murmur. Apparently it is quite easy to pick up. I don’t know when they began checking for heart murmurs in the UK. But I was quite surprised that it had never been picked up in all my previous 61 years. I’m lucky that I only go every 6 to 8 weeks now for my INR. I’m not a big drinker. My diet is reasonably healthy I saw my cardiologist 3 months after the operation, who was happy to take me off all my other medication. I now only take the warfarin, however I’m pretty sure I will need blood pressure tablets when I get my phone consultation with my GP. I get an annual echo at my local surgery, other than that I’ve never seen anyone else. Re: your blacking out, ever since I was a teenager I have regularly been light headed when standing up too quickly, likewise if ever there was a cold of flu bug knocking about at work, I would always, always catch it. In hindsight I do wonder if my bicuspid valve had something to do with all that. The good thing is though, we are still here and I will always be eternally grateful to the staff at the heart unit.
It may sound daft but I use my alarm on my phone to remind me to take the warfarin. There are numerous occasions that I would have totally forgot had my alarm not rang. Thanks again Madyy for your replies. I will ensure that I update after my GP appointment.
Hi MikedabikeYes it’s very interesting reading your posts, I can get it ,how we can live with our valves from birth,
go about our lives, in and out of hospital go through school, and work bring our family’s up , have a family going about our lives, then we told oh you will need a new Aortic heart valve and because your heart has been struggling to get oxygen and blood around your body you have Compromised other bits of your heart, it’s serious,
and your mind goes, well mine did ..has…lol come to think of it now Iv struggled with this murmur
like u from earlier always getting colds too and worse, it’s the Turbulence , they can hear the different heart sounds the drs, and the trainees love to hear the heart murmurs they were the same with me in Prince Charles hospital and then in Cardiff where I had my surgery, like you I’m really am so grateful and can’t thank the NHS enough every day ..yes the medicine I’m on that heart blockers and blood pressure meds and warfarin meds Iv only had one echo done in two years I’m going to see if I’m due Thank you for reminding me about the echo I will ring my drs on Monday I will post up about getting my echo or Gp appointment
Thanks for sharing your story and everyone who replied. I am burying my head in the sand a bit but read the post and replies this morning. My situation is moderate and keeping a close eyes on things. I’ve got another revision in October with private health care as state Spanish system still has not called me for an appointment after ecg at GP showed up an issue and that was back in February!
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