Support with Aortic valve replaced - British Heart Fou...

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Support with Aortic valve replaced

Madyy profile image
21 Replies

Hi

I’m newbie here

I have had my aortic heart vale replaced in 2019, mechanical..

I’m doing ok, I still got my heart murmur my extra beats,

But lately I get my ears full up like on a plane, I’m waiting for them to pop, and like a drunk feeling it passes but I get so anxious about blacking out, I was born with my Bicuspid Aortic Valve in 1961, I always knew I had a murmur

I was doing so well I’m 59 but my anxiety has not helped Iv stayed in because of Covid and got no life, my dizziness is a constant concern just wondering if this should be, I take warfarin 5 daily and 6 Saturday and Sunday blood levels are a good range, I take blood pressure tablets and heart blockers bisoprolol, and anxiety medication, I think Iv not seen a dr other than going in the first year after op, and once up go so I think I should tell him about this dizziness Any one experience this, and any problems with ears , be helpful if I’m not alone

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Madyy
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21 Replies
andy110519 profile image
andy110519

Hi Madyy, I had a mechanical aortic valve about the same time as you and for the same reason although I am a few years younger. I don't suffer from dizziness or the my ears popping. I am only on warfarin, 3 & 4 alternately, and reading on here meds have all sorts of side effects so that could be the issue but I would be heading to my GP to get it checked out.Andy

Madyy profile image
Madyy in reply to andy110519

Hi All

Not been posting up , been sorting my health out, but been reading all posts

Iv been sorting blood pressure out of late and because of my heart valve OHV

been put on blood pressure tablets Well extra blood pressure tablets and

Now having a Novacor Cardiac Monitor

I have dizzy spells and missing beats and have shown up on the heart monitor I had / anyone had this or know of this I need to keep it on for two weeks

From my other posts Iv also got anxiety and now this is yet more anxiety but I guess I’m lucky they are checking it out

Keep well all

Hi Madyy, I've had one bout of ears blocked, but, it was years after having surgery, and before I was put on any beta-blockers or BP meds. GP prescribed me some ear drops and the problem eventually went away after about a month.

Best to ring your GP.

Madyy profile image
Madyy in reply to

Thank you , I have been told Vertigo, by Gp it’s a real worry it’s put me 10 steps back thank you for your reply

Madyy profile image
Madyy in reply to

Keep safe and well all

Madyy profile image
Madyy in reply to Madyy

Keep safe and well all

Alison_L profile image
Alison_L

Hi Madyy. I suddenly went deaf in one ear last November. Nothing to do with my heart failure. Suggest you contact your GP asap. xx

Madyy profile image
Madyy in reply to Alison_L

Thank you , will book gp

Madyy profile image
Madyy in reply to Alison_L

Keep safe and well all

Madyy profile image
Madyy

Thank u , will do

Madyy profile image
Madyy in reply to Madyy

Keep safe and well all

road2ruin profile image
road2ruin

Hi,

A lot of your symptoms could be down to stress. Speak to your GP, but think about getting a hobby, something to take your mind of things. Get involved in a local group of some sort, hiking, whist, reading etc. Post a lot on here too. When I was low after my op I found venting on here really helped. Lot's of support from like minded individuals, but also taking my time to type things was a release.

Peter

Madyy profile image
Madyy in reply to road2ruin

Thank you , yes I agree I can and do and have been very negative Great advice to come through the operation process ,I need to sort out my negative

Maskt3 profile image
Maskt3

Hi Madyy I too was born with a bicuspid aorta, 2 years before you in 1959. I found that with blood pressure medications I often felt dizzy, if I lost weight for instance. When I take my own readings at home they show that while resting for half an hour - drs orders- my BP is more often low. I get readings of 95-109/49 - 55. Currently taking my BP every couple of days so that I have a record for when I see Cardiologist. My 2nd replacement was porcine so no warfarin yet. About to have 3rd replacement soon. I hope you keep safe as possible and hope we can all get back to more normal soon.

Madyy profile image
Madyy in reply to Maskt3

Hi Maskt3

I wish you well with your operation wow my heart goes out to you with having to do it 3 times,

I will follow you on your journey

yes with mine I’m mechanical valve,I hope it sees me out lol can’t even think of doing it again …to be honest but if needs must of course I will but maybe if I’m old and need a extension again lol if you understand I m not suiting warfarin it’s taken two years to get my INR To be good so have had to go each week for the blood tests, but this last 6 months only need to go every 6 weeks , maybe I would consider not open heart surgery but a Tav like old Michael Jagger lol

I always knew I had my Murmur and had a lot of problems from about 20 years of age like tachycardia and depression and anxiety Agoraphobia, So Iv lived with it 60 in October lol I don’t want to be coming across has disappointed because I’m not, I don’t want to come across has not appreciated because I’m not it’s just well it can become overwhelming at times

I forget I run up the stairs then other days I can’t dress because I’m so tried then I’m going about my day and this dizzy comes on like I’m drank and my head is heavy good advice I will get a machine and do my blood pressure see if it’s the meds like Bisoprolol the beta blocker I take 2.5 once a day and Losartan 50g one per day for blood pressure So I don’t take a lot of meds for the heart really and of course Atorvastatin for cholesterol only 40ml one per night but cholesterol is low and of course I need to take the warfarin

It might be my blood pressure low or high or could be the meds in 2 years only been getting this dizziness of late I think I will start a journal

Keep well all , great advice as always I appreciate

Maskt3 profile image
Maskt3

Hi Madyy thankyou for your message. I found out about my bicuspid valve after my daughter was born age 30. I had some gyna e problems and was due an op. The anaesthetic who checked me over told me I had a murmer. She let me listen to her heart then mine. While all this was going on my husband was out of work. When I saw the cardiac specialist I told him I was ok and had no side effects. Soon after my husband became employed again and I realised I couldn't carry my daughter upstairs without a rest or hoover....all the things my husband did while he was home I saw the cardiologist again and he bought an ,expert, from the Royal Brompton, she said it was just asthma and said if I wanted to waste her time I could go for an angiogram. Which I did, all her junior colleagues came to tell me that if the angiogram showed nothing I could be seen by their respiratory drs, so not to worry! 30 minutes after the angiograms the junior Drs were back to tell me I DID have a problem and would be put on the list for surgery. I was asked to wait to speak to her before I left...but I wouldn't give her the time of day! 6months later I had a new homograft aorta and was full of life. It lasted 12 years. My 2nd was porcine and just about lasted 17 years. If I have to have open heart surgery I will do it! But hopefully the Tavi procedure will work for me. All fingers and toes crossed this one happens soon. I found out a recent chest infection was more heart related and she to fluid on my lungs. I am on 40mg of forusemide already for feet and ankle swelling. Have asked cardiologist if I need more. I can't do anything at the moment but rest. X

Madyy profile image
Madyy in reply to Maskt3

Hi Maskt3

You are doing wonderful, I will follow your journey, it seems there is a lot of us learning about our condition with our hearts in similar ways, I’m so glad you by passed this Dr like you did

With mine if I had found mine earlier maybe I would of not needed open heart surgery but my aortic valve was calcified so it was critical I’m one lucky person believe me to black out and come round lol

In total 6 weeks in hospital in Cardiff 12 days in Prince Charles Merthyr,

That was in July 2019

Big hugs

Keep well post soon

My operation was a different one to yours, but I've also ended up with what appears to be Vertigo. I'm also getting medication to help control it - and at some point in the near future (alledgedly) I will speak to a Neurologist and can expect an MRI to assess various aspects of the workings in my head, ears, nose, mouth etc. Oddly enough, I seem to not be bothered by the vertigo, even though it is likely the cause of me being unable to drive, cycle or walk on paths next to roads.

The only thing I'm sure of is: we all respond in different ways to the surgery we have and eventually we all learn to live with the new abilities or disabilities. Not all disabilities are bad - for me, not eating cakes, sweets, chocolate, take aways condiments, deserts, biscuits etc has been a huge bonus - I don't have to watch my weight as I once did.

I wish you well in your recovery and hope you get all the answers you desire.

Madyy profile image
Madyy in reply to

Hi Brand

I wish you well and I’m following your journey, and thank you Bless you,

they say it’s vertigo with me, the dizziness

and they have given me meds,

I’m not that trusting of anything Drs say of who says what of late knowing I’m having to go to the doctor means I’m reminded of what if it this that or the other you know,Lol

the dizziness puts my anxiety 10 steps back,

it is learning to live with this disability/ good days or bad but try telling us all that ,when we are going through it

Please keep up and be positive , easy to say I know…

be kind to ourselves …Cakes sweets or not, for me I love ice cream and a flake,

you got more will power than me ,

no ice cream and flake ,Maybe not lol,big big hugs

in reply to Madyy

Thank you,

on the plus side, I now have a powered wheelchair to get around in - which is rather cool. I sometimes feel like 'Davros' - the leader of the Daleks in Dr Who, though I think that says more about my age and the child still within me.

As for the will power with eating - it's simple, post op anything sugary tastes like salt, so put a sweet into my mouth tastes like putting a few spoonfuls of salt in to my mouth, sometimes with vinegar to add potency. When you think of it like that, it's easy not to fancy those types of food. Cakes, bread and pastries all turn in to some form of chewing gum type goo that sticks to the roof of my mouth and is rejected by my throat during any attempts to swallow - so again, easy to not want. It's been an insteresting year - my wife tells me this time last year I was still unable to stand by myself and had to be hoisted from bed to chair and back again as part of the OHS recovery procedure, so being able to walk to and from the small back garden, up and down stairs seem like a miracle by comprison.

I do, apparently, enjoy anxiety at times, and also a good helping of depression - when I remember. Sometimes, it can be funny not remembering things - cos you can't remember doing wrong or any of your post op shortcomings - different when you can't remember your Grandsons name or daughters D.O.B. - but I take the swings with the roundabouts, when I'm allowed over the park 😅

Madyy profile image
Madyy in reply to

Do I know Davros' - the leader of the Daleks in Dr Who, I come from Merthyr Tydfil The man who invented the Daleks came from my home town of

Merthyr Tydfil lol

It’s nice to be able to have banter like this where we get it / I get what u saying Big hugs

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