I'm new on here, having been diagnosed with bicuspid aortic stenosis. My consultant has told me I'm now ready for a valve replacement. I'd like to chat to others who have had an aortic valve replacement.
Hello from a newbie: I'm new on here... - British Heart Fou...
Hello from a newbie
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Carion
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Hi Carion I had a aortic valve replacement about 11 years ago, mine was replaced with a porcine valve which seems to have served me well so far. I was in my early 70's when this was done. They chose this because of my age. Happy to answer any other questions.
dear Carion
Welcome on board this forum. I had the aortic valve replacement (AVR) in May 2019. I was your age.
Before the op, I was being reviewed yearly. At first it was mild stenosis, then moderate stenosis, then severe stenosis. At the severe level the operation became urgent, very urgent, and I had the op done in Cromwell hospital.
It was nothing like other hospital treatments. The specialist staff are simply fabulous. They all highly trained in cardiac matters. They know exactly what they are doing.
The op is carried out frequently and the success rate is 99% ish. It is a major op and recovery is typically a few days in hospital then about 12 weeks at home. You will need help during home recovery, so if you live alone then maybe a stay elsewhere will be essential.
I assume you will be OHS (open heart surgery) but a limited invasive option is a TAVi which might reduce the recovery time.
I can honestly say that I have fond memories of my time in hospital. Terrified before hand but fine once in hospital.
I don’t know how the chat works on this site but I will give it a go.
Best wishes
Sooty
Hello Sooty. I was diagnosed with moderate bicuspid aortic stenosis, monitored 3-monthly, then Covid kicked in and the monitoring was changed to telephone monitoring. I had my check-up last week and was told my operation is imminent but no date was given. Was told it will be OH but have to have various other tests beforehand; chest xray, ECG, EchoCG, and angiogram. I'm terrified! It doesn't help that other family members (mum & uncle) had OH surgery and it didn't bode well for them. Mum had valve replacement and died after 2 yrs and uncle ended up brain damaged. I also have a phobia about the cannula and generally being in hospital. I have help at home but no-one I can chat to about my fears. At my appt I was so tempted to refuse the op and just run! Your comment has made me feel a lot better, thank you.
Can I please ask how long it took to go from mild- moderate-severe ?
Dear Mauschen
From mild to moderate was five years. From moderate to severe was six months, but I didn’t realize it was severe stenosis, a further six months and severe was formally diagnosed.
With hindsight there was a subtle change in the fatigue. And another side effect, whereby I would start to fall forwards when walking, did not alert me to the situation.
My GP was very much on the ball and did ECGs in the surgery. Then got me in for the first hospital scan in double quick time.
I guess long term stroke fatigue sufferers should be aware,but there is little to go on. I note that long covid is pretty much identical to stroke fatigue and there is now a lot more medical attention.
However, I came through and to be honest I would rather have my experience than be alarmed by severe stenosis for many months !
Best wishes
Sooty
Hi. I was moderate when they discovered my stenosis. That was 4 years ago. I was on 3-mthly obs for 3 years, then Covid happened and the obs turned to telephone obs until last month. I had an ECH and moderate and developed to severe. Had my consultants appt last week and he said I needed the op and it would eb imminent. I took that ti mean fairly soon, but I hope not before NY.
About 15 years for me.
Hi just read your reply to mauachens post 15 years for it to change from moderate to severe woah! . Mine is moderate to severe and it only took about 10 years I think I get seen every year so don't need valve replacement as yet which is good. Hope your keeping well.
Sorry - my comment was confusing! I was diagnosed 15 years ago at mild & had a surveillance echo annually. Then last year in June I was upper moderate (moderate to severe) and now August this year severe and I'm seeing a cardiothoracic surgeon in December to discuss AVR. I also have been in AFib/flutter since April this year so will have concomitant ablation and my ascending aorta is mildly dilated so may require intervention during the OHS.
Hoping it will all make me feel better & prolong my life!
I'm doing OK, especially since joining this group. All the positive replies has allayed most of my concerns and fears.
Thank you for yours.
Carion
Hi Carion
I was is the same situation about 2 years ago.
The cardiologist had been open to TAVI then changed and pushed bioprosthetic valve.
I had been totally against open heart surgery and many tough discussions took place.
I did weaken and had the 'donkey valve' and it has neither been a pleasurable journey nor successful outcome.
Prior to surgery I had been asymptomatic but now I have dizziness, chest pains, heart palpitations, swollen calves and ongoing fatigue with poor aerobic capacity.
The two other people who have replied to your post seem not to have had these issues so clearly my outcome may not be typical. The frustrating issue for me is that the ones who pushed this disaster on me, take no responsibility and provide no options to improve the situation.
I am 62 YO male and I am now 21 months post surgery.
Good luck should you go through with OH but if I could, I would go TAVI or not at all.
Carion in reply to
Hello Floyd. Thank you for your honesty; I appreciate that. My decision was forced on me too. I had decided not to have it but family pressure made me agree to having the op if a major heart attack didn't finish me off first. I was in a daze after my appt with the consultant and now realise I should have asked a lot more questions. I hope you recover and wish you all the best.
write your questions down and either take them to your next consultation or post/email them to the clinic.
You should be 100% informed before you make any decisions.
Floyd raises some good points about the procedure to be followed when the results are not as expected.
What follow up care is available?
If something goes wrong, how will you fix it and in what timeframe?
You will probably need to take blood thinners for life. You could ask if this will be Warfarin or the newer NOAC
Once you start writing, the questions will pour out.
I also have Aortic Stenonis but not needing a valve replacement for now. Therefore, I am interested in the experiences others are sharing with you.
in reply to Carion
Hi Carion
Just replying and hoping that you can make an informed decision over your future. Just read some of your comments and my fear and opinion over OHS stems from my grandmother. She was told to have OHS for valve failure while in her early 50s with her fears being deteriorating future health. She had OHS and after 18 months ,99% of it being in hospital, she died from heart failure. Consequently, I held no respect or faith in this surgery.
Things are much better after years of research but I am particularly upset that they would not inform me which valve they where going to use despite me asking many times. Only 4 weeks after the surgery I found out that the valve was in its clinical trials phase. I feel that I am being treated like a lab rat. I was told to leave the wounds to heal and leave the scab to fall off. There was one last one under my chin that remained. After 5 weeks I took this photo to find that the scab was a remaining suture poking out ofy chest.
Before surgery I could swim 32 metres on one breath, post surgery my best is 20 metres.
Your family clearly love you but this is a solitary decision only you can make as it might save you or might not and no one can accurately predict the outcome.
Ask questions and clearly articulate the 'what if' question. Find out what valve they want you to have and take time to consider before you say yes or no.
FYI they used the Edwards Inspired resilia valve. For me, I had a poor outcome and others have had a better one. I do not use a blood thinner but a mechanical valve will dictate that you will need warfarin for the rest of your life. I despise ongoing medication so mechanical was never going to happen.
The cardiologist incorrectly advised of glowing health and boundless energy in a 4 month recovery period. I followed advice until 4 months was over and dropped all meds on protest over the lies given to force this surgery. Thats just me. If it is in any way possible I would get the donkey valve removed.
Suture protruding through open chest wound
Carion in reply to
OMW! You have been through it!! Thank you for your honesty. My mum had the same surgery as is planned for me. The bicuspid part is hereditary, but she had also had scarlet fever as a child which affected/weakened her heart. She had her op in 1966; back then the valve was replaced with a metal one and could only been done once. She never really recovered and only lived for 2 yrs after the op.
It gave me the heeby-jeebies when I was told I also need the op and it would be OHS. I had decided to refuse the op and let nature take its course, but talking to my family, they wanted me to 'give it a go'. We agreed that I would accept whichever happened first; massive HA that killed me or the op. Well, the op has won. I spent 2 days/nights worrying about it. Then I came on here and joined a Fb group for aortic replacement patients. They have been wonderful and so supportive; so much so that most of my fears were allayed. Tbh, I would say 94+% of the replies I've had (47 out of 50ish) have been positive. I've been private chatting with someone about the good v bad aspects of their experience with OHS.
According to check-ups to date my heart is strong, beats well and I have good biventricular function; it's just the aorta that is faulty and has stenosis. I've always enjoyed my activities (ballroom dancing, long walks) but now find I can't walk more than 100 yrds without needing to sit down for a rest.
I have a long list of Q's for my next appts.
Everyone said being positive helps pre and post op. Since I decided to go ahead with the op I have adopted a positive attitude to it. I used meditation to find my way forward/change my mind-set.
I hope you improve and feel better soon. Take care and be positive; it does help, honest.
Carion
in reply to Carion
Well if you have commited to the OHS then I can only wish you well and hope for a speedy recovery.
I could only speak from my experience and I would not say that the recovery was overtly painful but overwhelmingly fatiguing. I had a poor experience with a drug called fentinel and in my first two days my only recollection was vomiting and I had no visual recollection at all. On my third day (with no fentinal) I became much more aware but breathing was difficult. Day 5 I had my first shower (and I needed it) and initially made good progress day by day.
I lost about 7-8 Kg while in hospital and found that my strength and duration where impacted. So expect a steady recovery and understand that you want a daily improvement but some days might set you back so it is more realistic to see a weekly increase and accept an odd day that things don't go so well.
Which ever valve you have, there is a + or - in each. Talk through with your cardiologist. Unfortunately I was given false expectations by mine.
With my Grandmother, we had believed she had an aortic valve replaced in May 1969. We obtained the operative notes and found that it was her mitral valve. They used a plastic valve and ultimately that cost her life. My mother had been well until I had surgery and her concern for me in hospital was so intense and she had a nasty turn and ended up in a different hospital.
My anger is over false information and the offensive way that (in my view) that an experimental valve was used without my consent. The cardiologist would not refer me for a TAVI because it was not tested and now I am being used to test a new type of valve. Ironic ?
I have chest pains and hear turbulence in each heart beat most nights and my only survival strategy is to not really care what happens (less stress). There is clearly no health improvments in my future and medicated or not, no changes in my condition. Not everyone takes this path.
Good luck and let me know which valve they are going to use please.
Carion in reply to
You sound very depressed. Have you had any therapy to help you? I personally have never used therapy but am told it can help. Meditation has always been my self-help therapy, though I do intend to find out about therapy post-op because I have been told it helps to meet others in the same situation.
I had a bad experience with a different major op 5+ years ago. Lots of mis-treatments and neglect in hospital. That was another factor in deciding about this op. I have been told that heart wards are different to other wards and the post-op care better.
I think I am committed to this op, but can also change my mind. I'll post on here when I get my date and after the op.
Whatever happens, try to find something positive in your life and work towards being positive about other things too.
Take care.
Carion
in reply to Carion
I understand I might come across that way but I just lost about 40% of my physical capacity and I guess that must have some negative impact on mental health. My family are a positive and my wife understands that I hit a limit much earlier than ever prior to surgery so that helps.
Depression often follows a cardiac event but I don't feel suicidal in any way. I had a good friend who suffered a mental breakdown badly following a quad bypass so I had been aware of it's prevelence.
In the cardiac rehab meeting post surgery, the nurse mentioned depression so often, it was sickening. Being aware is the best strategy to avoid falling down this path.
I have the capacity to just work within whatever new limits now apply. About 15 years ago, I had a serious spinal injury and learned to adapt to it. I am using this mindset to work around the reduced capacity following heart surgery.
The problem for me is that the doctors are in denial over the incapacity of the surgery. Given that I had accepted not to have surgery and let the stenosis do whatever it would, I doubt that there is any option other than to just let things run on. The doctors don't want to remove the valve and I no longer trust their opinion anyway so I will see what happens. The cardiologist has been sacked and likewise the GP who pushed the surgery. There seems no point wasting energy arguing with a system that is in denial so I shall live for what I can and accept what can not be changed. My stress levels are at least contained this way so I am avoiding confrontation with the medical system that has failed me.
Carion in reply to
I really don't know what to say.
I was in denial of the benefits the op might/would have. I had such negative feelings and thoughts before I changing my mind-set. My family wanted me to live; I didn't want to live with the reduced ability I have now. Finding out so many people have such positive feedback to give me, and hopeful of getting back the stamina to pursue my dancing again means the world to me. I have to stay positive.
I wish you all the best.
Carion
in reply to Carion
Well as you said earlier, you are now having mobility issues walking over 100m. So you may have a step (or two) up. The scans should be showing excess pressure in the left ventricle and a thickening of the heart at which point the heart will be in some stage of distress. If you are breathless after a short walk, there should be some signs on the scans. Your cardiologist should be looking at all these things.
In my case, I was told that the pressure was too high & some very slight thickening of the heart wall. However I had no issues walking except when I had to carry my tools 400 metres to a job.
About a year before surgery, we climbed Mt Vesuvius (not exactly Mt Everest) and had no problems but I would struggle to do that now.
I guess I was not as ill as you are describing for your current capacity. The cardiologist I was seeing did advise me of people arriving at A&E blue and breathless not realising that they had aortic stenosis. There is a point at which the heart is damaged and beyond repair , she told me.
If you are definately going to have OHS, then may I suggest that the sooner you do it, the better, in case you were to hit that tipping point.
Please don't hit the panic button but yours sounds much more restricting than mine ever was. In any case a cardiologist would be in the best position to identify the warning signs and should be clearly giving you a guidance as to when you need to attend to the stenosis.
mauschen in reply to
can I just say, that a trial valve does not mean that it’s not licensed for use.
Sometimes studies are conducted between different types of valves.
For example, drug eluding valves and non drug eluding valves could be the subject of a comparison study to find out how long they last before needing changed.
In this case, the researchers are looking information on the valve regarding longevity. The valve itself will have been through its requirements for registration and licence for use.
Have you considered this type of scenario?
hi Carion
I had my AVR replaced 5 years ago as an emergency operation, did not realise I had a bicuspid valve and severe stenosis until I collapsed twice.I have a tissue valve and just take aspirin daily. I was in hospital for 5 days and it took about three months to heal properly, it saved my life, and now completely back to normal. Good luck with yours.
Best wishes
Karen
Hello Karen. My bicuspid valve was diagnosed before the stenosis was. I was being monitored 3-monthly until Covid kicked in then it change to telephone monitoring for 2 years. I had my check-up last week and was told my operation is imminent but no date was given. Was told it will be OH but have to have various other tests beforehand; chest xray, ECG, EchoCG, and angiogram. I'm terrified! It doesn't help that other family members (mum & uncle) had OH surgery and it didn't bode well for them. Mum had valve replacement and died after 2 yrs and uncle ended up brain damaged. I also have a phobia about the cannula and generally being in hospital. I have help at home but no-one I can chat to about my fears. At my appt I was so tempted to refuse the op and just run! Your comment has made me feel a lot better, Thank you.
I too have had my Aortic Valve replaced, along with others. My Aortic Valve was done through OHS whereas others were done by TAVI. I had a long recovery after OHS but not so much after TAVI and because I live alone I went to a convalescent home which was the best decision I made. It was like a mini holiday (all inclusive) with the added bonus of 24 hour care.These operations sound scary but they are regularly performed by cardiac teams and are nothing to be concerned about. Just do as you are told and listen to your body!
Good luck to you x
Hello Becks. Thank you for your comment. I feel a little less fazed now. I had my check-up last week and was told my operation is imminent but no date was given. Was told it will be OH but have to have various other tests beforehand; chest xray, ECG, EchoCG, and angiogram. I'm terrified! Your comment has made me feel a lot better,
Please don't be scared. To bo told that your heart is not performing as well as it should will have a massive impact on your mental state as well as your physical health. Before you see the Consultants and have your tests, write down questions that you have and don't be afraid to ask anything. There's no such thing as a stupid question.
Read up as much as you can on this site and a reputable site like the NHS.
Afterwards, take all the help that you are offered. No housework, lifting, ironing, driving until you are told you can. Don't push things.
I am 4 and a half years post op; that's 4 and a half extra years I didn't expect to have!
I'm terrified about it all! Pre-op and post-op. I've been aware of the bicuspid valve for a long time but the stenosis has only become apparent over the last 4 years and the valve is deteriorating. I have physical and emotional support at home (hubby) but no-one who has gone through this and is still alive to talk to about my fears and concerns. My mum had to have the same op and she only lived for 2 yrs afterwards. I've read about it online, and think that has contributed to my fears as it all sounds horrendous. Originally, I didn't want the op, but was 'persuaded' to have it by hubby and my daughter.
Oh bless you. I too have problems with my Bicuspid valve leaking. My Consultant did try to fix it with a TAVI procedure but it didn't work. They were scared that the replacement valve may ping off during the operation and ended up putting it on one of the other valves instead.If your operation is being done OHS then they may ba able to do it at the same time?
I'm sorry to hear about your Mum. X
Thank you. I'm going to contact the consultant's secretary with a list of Q's I forgot to ask at the appt.
Thats a really good idea. They can be very helpful. Good luck and please don't worry. These ops are "bread and butter" for the Consultants.
In that case, I'm going to give them a picnic! Lol
Hi Carion,
I had my operation when I was 28. I am now 70. We are all highly individual as are our medical needs. My valve is artificial and has served me very, very well. Taking Warfarin has to be managed but becomes routine.
I was scared before my op. We had two babies, two years and eight months. A difficult time but my decision to have the op was easy. I wanted to live.
Very best wishes for the future.
Hello YH, I'm nearly 67 and was going to refuse the op, but was persuaded into it by family. Having read so many positive comments on here and on Fb I'm glad now that I am going to have it. I'm still scared but the encouragement I've had on here and Fb has reassured me tremendously. Thank you.
I too have severe aortic stenosis of a BAV and soon have my first appt with the surgeon to discuss AVR.There is a lovely small friendly Facebook group -
UK Aortic & Heart Defects Presurgery & Post Surgery
You'd be very welcome to join and can ask anything of the people that are on and have been through this journey x
Hi Carion. I have had both Aortic and Mitral Valves replaced in 2020. My Stenosis was severe! I actually spent 6 Weeks in 2 Hospitals as I had Complications. Please don't be put off by that!! They then decided to insert a Pacemaker after the Bypass. It hasn't been an easy road but now I can say it has given me a 'New Life' so to speak. I am so happy I had it. You will be too 
Hi. I'm glad it worked out for you in the end. I hope it will for me too. I've had lots of replies and support on here and on Fb, and that has allayed some of my concerns, but not all. I realise I should have asked more questions at my consultation but tbh, I was a tad fazed at the time. I think an email to my consultant is in order. Thank you for your support.
You are very welcome. When I think back now, I didn't ask that many Questions either. I think if I had though, I might not have ended up having the Op if you know what I mean. Sometimes, what we don't know, can't hurt us lol 😂. Good Luck 🤞
Thank you
Hi Carion,
I had a replacement aortic valve via open heart surgery on 3rd October so I am nearly 6 weeks post op now.
I opted for a tissue valve and have the Edwards Resilia Valve. Happy to answer any questions or concerns you might have but, in the meantime if it helps, im feeling really well.
Best wishes
Rachel x
Carion in reply to
Hello Rachel. I have had a great response on here and on Fb, allaying most of my concerns and fears. It does help that you are feeling well; every positive outcome I hear eases my concerns. I do have a couple of questions unanswered, but it would help if I had thought to ask them! Haha.
I don't know when my op is scheduled for yet. The consultant said it was imminent. I took that to mean it would be soon. I hope it is after NY though.
One of my main worries now is the thought of my rib-cage being cut open and rewired, and the scar it will leave.
Carrie
in reply to Carion
Hi Carrie, Im pleased to hear that this forum and facebook have been able to put your mind at rest a bit. The worry leading up to the op is the worst part of it all. Once I got to hospital I felt really calm and the staff were brilliant.
My biggest fear was also the sternum break, it made me feel ill just thinking about it. I dont know why I worried so much though. There were no visible stitches, all internal, and the scar was glued together. Its really neat and now its healed i am putting bio oil on twice a day. Its certainly sore for the first few weeks but its genuinely not as bad as id built it up in my mind to be.
I hope this helps xx
Carion in reply to
Hi. I'm not sure how calm I will be. I don't cope well with hospitals. As soon as it gets to the point of the cannula going in I'm almost in a faint.
Yes, I feel sick every time I think about the sternum break et al, but find your experience reassuring and it has helped me, thank you. I have my bio oil at the ready
in reply to Carion
You sound very similar to me in that I dont like canulas etc but I didnt have one put in while I was awake, it was done while I was under anaesthetic. I dont even remember going to sleep!! Honestly, I spent months worrying about my op but now I wish I hadnt. Its the fear of the unknown though but the things you dread the most will not be as awful as you imagine them to be.
Rachel x
Carion in reply to
Thank you.
Hi Carion. My husband had his Aortic valve replaced nearly 5 years ago when he was 54. He had a mechanical one and he wanted it done once and for all so he’s on Warfarin for life, but that truly isn’t a problem. Without this surgery he wouldn’t be here now, so I’m relieved and pleased he went through with it. It is major surgery, so it’s scary as a patient and for their loved ones, but it’s common so the hospital staff have lots of knowledge and are used to looking after patients who need this operation.
Feel free to look at other posts about AVR and ask loads of questions.
Best wishes to you and your loved ones.
Hello. I have looked at lots of posts on here and on Fb, and had a tremendous amount of support from everyone. There have been a couple of negative experiences, but on the whole most have been positive. It's nice to hear from someone who hasn't had the procedure but is a relative. I'd like to hear your side of the experience and about the after-care you had to do. (I don't think I've termed that very well!) My emotions are all haywire; how must my hubby's be? I've found it difficult to talk about it all to my family. My daughter knows I have a heart 'condition', but not that I'll soon be having OH surgery. I don't know how to broach this subject with her.
It’s definitely a different experience for patient and partner! I’m a fusser and my husband doesn’t like being told what to do/what not to do so we came to an agreement that he’d let me fuss and I’d let him get on with things without saying “I told you so” when he did too much! And it’s natural to do too much because you only know where the line between “enough” and “too much” is once you’ve crossed it. Then it literally takes a few days or so to get back to where you were - very frustrating for all concerned. In all honesty I was just numb emotionally for ages and it hit me more a few months afterwards. I saw a counsellor (via a workplace scheme) who really helped. As my husband struggles with anxiety I took the week off he was in hospital so I could spend lots of time there each day then the week after too so he wasn’t filling the kettle and lifting 4-pint milk bottles etc.
The most useful bit of kit at home post-op was a shower stool. My husband felt very weak and you’re not allowed to lift your arms up above shoulder height so he needed help washing his hair & back. If you’ve got long hair and your husband’s not used to washing long hair maybe practise first?
How old is your daughter? Our grandkids were 8 and 3 when my husband had his op. The 8 year old thought it was cool that grandad had a gadget like iron man inside him and they both loved listening grandad tick like a grandfather clock! We told them both he had an op on his heart, to replace a valve that wasn’t working properly and that he could only give gentle hugs. They looked at his scar but they weren’t bothered by it. Kids are generally very resilient and if they know you’re confident in what’s happening then they will be too. By the way, the kids can still hear the valve now because of their superb hearing but no-one else can. As his chest healed and he regained muscle the tick diminished. I can only hear it if I put my ear to his chest. He can only hear it if he wears ear plugs.
I’m sure other people on here will be able to say what they told their kids and how they reacted, especially if you do another post with the heading saying your daughter’s age and what to tell her. The brilliant BHF nurses will have ideas too. They’re available working weekdays, office hours, 0300 330 3311. The nurses are there for you and your family too, not just for technical/medical/how to questions but emotional support too, so please tell your husband not to struggle by himself. If he wants, he could also sign up for this forum.
Lastly, I’d say give yourself time - time to heal physically, time for the anaesthetic and medicines used in hospital to leave your system, time for new drugs/doses to settle, time emotionally, time before going back to work or doing all your usual tasks. We found it takes longer than you think, probably 6 months or so until you feel properly like you again.
xx
I'm a terrible patient and hate people touching my long hair so I see I'm going to struggle there. My daughter is 34yrs, but has emotional probs and mood swings. She cried when I told her about the BAS and that I'd have to have OH surgery at some point, so gawd knows how she'll react when she hears it's imminent. I'm retired so can take the time needed to recover.
Thank you for the above advice and suggestions. x
Hi Carion, I had my Aortic valve and root replaced in May this year. I was slightly unlucky in that I went into total heart block and had to stay in hospital until they were able to fit a pacemaker.
I'm recovering well now, but I can't say that the journey, experience or recovery has been easy.
I would also recommend the Facebook group UK Aortic and Heart Defects. Their support and advice has been invaluable to me. Everyone in there has had the surgery, is waiting for it or has somebody close to them who has.
Ask me anything that you want though
Joanne
Hello Fiona. Sorry to hear your experience wasn't a good one. I've found the Fb group and they are lovely and very helpful. They have made me feel a lot better about what I am facing.
Hi Carion, You've had some good responses that have hopefully alleviated some of your concerns. I won't go too deep into my experiences, but, to put surgery into context I've had three Aortic Valve Replacements, along with a single Mitral Valve Replacement and a further repair, over three seperate surgeries. The reason I've had so many was my choice, I was young and took the Tissue Valve option first time round. That was 28 years ago when I was 33. I've had both Tissue and Mechanical Valves, and I appreciate you probably haven't given it much thought as yet, but, the type of valve you choose is hugely important, and very much age dependant and how averse you are to potential further surgery down the line.Valve surgery is a life changer, for the good with the vast majority of people, again in my experience, I've always found the best way to approach it is to be positive and not dwell on the negatives.
You'll get through it and come out stronger at the other end.
Best wishes
Heed
Carion in reply to
Hello Heedio. I have indeed had many encouraging replies. I realise now that I should have asked more questions at my consultation but TBH I was rather fazed at the time. I'm an oldie (67 soon). I also hadn't realised how common this type of operation is. The replies have been mainly positive and I do feel a little better for reading them. I was in a very negative place after my consultation and was ready to refuse the op and run, but now I do feel more positive about it all. Thank you for you well-wishes and here's hopefully to a successful op and outcome.
Here! 67 isn't old! I'm 67 and a quarter and still able to get into mischief thank you. You could have another 20 years after your op!
Love that you are still getting up to mischief! And hoping for many years of doing that myself.
hi I had avr nearly one year ago and I’m celebrating my beautiful bovine valves first birthday by going to Vienna !
I was very poorly prior to my surgery but 3 weeks post op I was feeling loads better ! 6 weeks I was feeling pretty grand and by 3 months I was back to work and feeling perkier and healthier than I had in a long long time !!
In short it’s a biggie the op but it is so worth it - do exactly what they tell you post surgery get up get moving !! They are brilliant these surgeons their years of hard work and dedication and skills humble me and I owe it to them to live every second of my new life to the max !!
I do feel like I was given a second chance - I love my scar and my bovine valve and in 17/12 a whole year later we will celebrate big style !!
Good luck for your surgery it’s big but the rewards are so very much bigger !
With love CH ❤️
Hello Leonardo. Such a positive and cheering reply. You'll love Vienna. I'd like to go back there to see the Lipizzaner horses. Must admit, I'm dreading having my ribcage cut open and wired back together, and the scar; OMG the scar. I'm having nightmares about that. I have lived most of my life to the max, until 4 yrs ago when I started feeling ill. I look forward to being able to so that again.
all perfectly normal!!! I went into denial about the mechanics of the op and nearly fainted at first sight of my scar but now it’s a thing of beauty !!
focus on the future your wonderful healthy full of vitality future !! I have just had a swim something I couldn’t manage a year ago climbed 3 flights of stairs when last year I couldn’t climb 3 steps !! This op is a game changer to a fab full sparky life !!
Don’t over think the mechanics you will know nothing just focus on your amazing healthy future !!
With love CH
Hello CH. Another wonderful, positive post. Thank you. I'm at the stage where climbing 3 steps is like mountaineering. From your post, and many others on here and on Fb, it seems I have a brilliant future to look forward to. I will look forward to my sparkly new life, thanks to you all.
C/x
Hello Carion,I'm new on here so hope I'm doing this right.
I had a bicuspid aortic valve diagnosis in 2001, was feeling odd playing footie, and had porcine replacement fitted in May 2002 at age 45. The whole experience was surprisingly positive and I was back playing football in September 2002. I gave my new valve a really tough time from 2002 until last year when I began to feel symptoms again and had another piggy valve fitted in March this year. Considering that I'm 20 years older recovery has been really good and I'm back running and so far managed 10k in under an hour.
My operations were carried out at two different hospitals and care was excellent at both. I was aware of no pain, just a day or two maybe of discomfort. I was told that if I did just as instructed for 3 months that I would be as good as new and that is how it has been. I think that having a positive attitude, if you can muster it, helps.
I'm not sure if you're aware but I was told that the condition was possibly inherited from my father, apparently it can be passed down through the males in the family.
I do hope that things go as well for you as they have done for me.
Good luck
Hi. Thank you for your post. I was diagnosed with arrhythmia when I was 11. The bicuspid valve and stenosis wasn't discovered until 4 years ago. I had various tests and scans for 2 years and was told I would need the valve replacing. Covid put a stop to my 3-mthly checks, but now things have started up again they seem to be moving pretty fast.
It is good to hear how you have been able to resume your activities. I'm a dancer (or was\0 and hope to be able to get back to it after my op and recovery. After all the positive comments I've received, my fears have been mostly allayed. I'm still scared but not as scared. At first, |I wanted to refuse the op and run, but have now decided to be positive and look forward.
Mine is inherited too, from my mother, who had to have this op back in the 60's. I was only 11 and remember with horror what I saw her go through. She only lived for another 2 years. That left a huge imprint on my mind and I was convinced the same would happen to me. Now I have been reassured that it won't.
Thank you for your support. I'm sure \i will have many years to look forward to.
Hi Carion this time in 2015 I had just had my aortic valve replacement operation second open heart surgery first one being 1998 when I was 40 I had a mitral valve replacement both are metal valves both congenital the Aortic valve found whilst having the mitral operation. First operation was okay obviously younger and recovered more quickly than I did with the second and like you did worry, when I had my mitral valve fitted did not have the time to worry as I had angiogram which burst a blood vessel and had to go straight to surgery the blessing was I would have had to have the operation but had it without the worry albeit had to have a double bye-pass also. Have been taking warfarin ever since along with other medication, never leave it longer than 3 weeks for checking, as I have got older has settled down more than in the beginning but is a small price to pay for keeping me alive. Be positive I have always believed what will be will be, I cannot praise my cardiologists and hospital enough as I am sure you will be the same, try not to think about it too much I know easier said than done wishing you all the best
Hello Carion,
I agree with everything said so far. We are all different and individual and our health at the time of the op is not the same. I had a metal valve at 65 I did not like the idea of having open heart surgery again in 15 years time. Would that be the case anyway? Taking warfarin has not been a problem apart from regular blood tests. Do get informed on the pros and cons of what valve to have, the doctors said it was my decision. I consider myself very fortunate that my life currently is very good, (it would not be if i had not had the op) and I have not had to experience too many adverse side effects. Probably the best advice I had was try to maintain a healthy diet, control your weight as best you can, take all the meds prescribed and sensible exercise. I consider myself lucky that I have not had too many problems post op and are able to walk pretty easily and play golf. Good Luck
HI Carion,
I was diagnosed with very severe aortic stenosis in Jun 2008 and had a bovine valve implant in Jul 2008. It lasted around 11 years after which it developed a tear and I had it replaced in 2020. Both times I had open heart surgery (OHS) and was in hospital for 11 days both times due to post operative Atrial Fibrillation, which is quite common. For me it took around 3 months to recover and I was completely back to normal after around 6 months.
Second time round I have an implant which will take a TAVI (transcatheter valve implant) when it requires replacing, so no OHS next time! The valve has also been treated to reduce the rate of calcium build up. Time will tell but I hope it will last longer than the first one.
Don't worry about OHS if you go that way, it is routine nowadays and very successful, but you will feel rather delicate at first so I would make sure you have some help at hand. Any other questions please ask
Hi 65C. I was diagnoses 4 yrs ago, had all the tests over 2 years and was awaiting a date for my op when Covid started. Everything went on hold for 2 years; 3-monthly monitoring turned into 3-monthly telephone checks. My consultant says it will be OHS. I've had an ECG and have a vascular scan next week. I' also seeing my consultant again next week and hope to find out when the op will be and where.
If it only takes me 3 months to recover I will be over the moon. I am scared and worried, but am coming to terms with what lies ahead, slowly. Everyone on here has been fantastic, putting my mind at rest about many things that are going to happen by their positive comments and stories about their experiences and recovery.
I will have someone to look after me when I get home. Hubby will no doubt molly-coddle me.
Thank you for your comments.
Carion
Hello Carion, it's 3 months since you posted your first message so I thought I'd ask if you've had your surgery yet and how are you feeling? I'm about your age and have the same condition, awaiting AVR. I'm focussing on the future and really looking forward to making the most of the second chance I'm about to be given - but the waiting is a bit of a trial.
Hi,
Not had the surgery yet. Have had various tests/scans over the last few weeks and have my angiogram on 27/02. Hopefully surgery will follow soon after. I've gone through all the stages of emotion, from total meltdown at being told surgery was imminent, anxiety at the thought of what was to come, resignation that it had to be done, and finally total inner-numbness. The angio is 4 weeks away and I have regressed a bit today to feeling anxious about it all again.
Imminent? Hah! They don't seem to understand the meaning of the word. 3 months on and I'm still waiting.
I've been very lucky. I've found a group on Fb where everyone has either had OHS or is waiting to. They give great advice and wonderful support. You can vent your feelings, share experiences, ask for advice, etc.
facebook.com/groups/3928607...
I've also been pm'ing with someone on here that has had OHS, gaining reassurance about what is to come and the benefits.
What stage are you at?
Carion
I'm sorry you're still waiting and I hope your angio goes well. I think all my scans are done. 🤞 Let's just get on with it now please!
hi Carion. I have had AORTIC STENOSIS now for a few years with annual check ups. This year it had become SEVERE, so I spent a night at St Thomas’ Hospital London at end of August this year for various tests. Stayed in overnight. Been decided to do Aortic Valve Replacement op called TAVI- which replaces the valve going up with a catheter from the groins or chest , instead of open heart surgery, so less invasive and quicker recovery. I am finally due to go back to London on 12 th this month for the procedure the following day. I have had my admission altered by 5 days due to industrial action. so keeping fingers crossed that it doesn’t happen again !!
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