I was born with a buscupid aortic valve with no issues it was all monitored for years and i am now 51. However I’ve recently been diagnosed with severe aortic stenosis. I’m due a valve replacement at the end of the month and possibly root replacement, however the surgeon is yet to make a decision on that until the day to say I’m terrified is an understatement. I’m trying to stay calm and not get too stressed. I’ve just unfortunately lost my mother-in-law due to cancer in the last 2 weeks and my own mum with ovarian cancer a couple of years ago, which I’m still struggling with. The pounding in my chest is horrendous. it literally feels like it’s coming out my chest. I have a very small family whilst people tell you not to worry. I do feel like that’s all I do. i’m taking propranolol three times daily which normally help unfortunately thoughts consume you with illness I feel as though I have no life, there doesn’t ever seem to be anything to look forward to. I’m normally a very positive person. I just feel at the moment so emotional I cry on the drop of the hat. It’s been very positive to read the stories on here for me especially people coming through the other side and gaining their life back.
Aortic valve replacement : I was born... - British Heart Fou...
Aortic valve replacement
Hi cem1234, , you've been through an awful lot in the last 2 years, it's not surprising you're struggling mentally. I had an aortic valve replacement and aneurysm repair 3 years ago, and was given a link to this group facebook.com/groups/1864350... They are a group of people who are either waiting for AVRs or have had them and give support to others. They are a lovely group of folk ,very supportive and helpful. In the mean time, had you thought of contacting your heart hospital and telling them how you feel. I think most heart centres have a clinical psychologist who can see you and help you through this difficult time.
Honestly , waiting is the worst part, and while at the moment you wonder why you should carry on, once you've had your operation you'll start feeling so much better and life will seem more positive.
Looking forwards to meeting you in the group, 💖if you feel like joining, they really are a fantastic bunch of people
Thankyou so much you are right it’s the waiting that’s the worse. i’ll look into the things you suggested thankyou so much so kind of you to reply 🥰
It's my pleasure ❤️, I have got so many help and support from the group, and there will be others there who have faced having an operation on top of personal worries in their lives. Any questions you want to ask or advice you need. on our Facebook group, please feel free No question is too trivial ♥️
Cem I am in the same position as you and terrified. I am now 75, I have no family, relatives etc., and live totally on my own. I go to bed scared and wake up scared. I think people are different and the many who have family backup, and therefore don't feel isolated see things much differently than I do. I refused aortic valve replacement last year, my cardiologist said he would give me a call this year to see if I have changed my mind. I asked about life expectancy if I don't have it, he said two to four years. I have balance issues, walking difficulties etc. If I have aortic valve surgery, I will still have these issues, except I will be less breathless. This op won't change my day to day life, as it does others. So I too am in a bit of a quandry sad to say.
good morning I’m so sorry to hear you are struggling it’s a very difficult time, would it be worth talking to a counsellor or even the BHF nurses on the phone ? both have helped me enormously I didn’t think it would be my cup of tea but i am trying to communicate more instead of bottling it all up. I also have something called talking therapies which again is so helpful if you cannot find something like that ask the Gp receptionists who would help i am sure. I know it’s easy for me to say, but please don’t think you’re on your own. There’s lots of people on here to help and I’m more than happy to chat to you any time. Please just message me direct if I can help you and then you can help me too! A lot of my parents friends who have had heart operations all different sorts who are older than you in their 80s have all had it successfully and had really good outcomes but it’s very difficult which is why you need a little bit of guidance and help to speak it through with somebody. 😊
Thank you .cem, my main reason for probably not going ahead is the fact that things that affect my mobility and day to day life are not valve related so post op I will still have these problems. I spoke to a woman who had the valve surgery a year ago, she told me afterwards you will need a carer to come to your home as there are a lot of things you will not be able to do, even very slight things. I have no one who will look after and love my two wee dogs, and under no circumstances will I have a carer. My husband died in 2021 from an ilness he had for 21 years, I have seen this outside care first hand. These are my reasons. Speaking to a counsellor or friend will not make me change my mind, but I also realise without surgery I could go to bed one night and not wake up the following day.
hello, thank you for explaining it to me. I understand your circumstances and your reasoning for not having the operation especially with your dogs 🐶
Isn't there anyone who could look after your dogs for the first couple of weeks after you come out of hospital? ( If you change your mind and go ahead ) Or perhaps they could go into kennels? Planning ahead regarding shopping and getting things arranged in your house really helps and the hospital will do that. Raised loo seats , a Zimmer frame for when you first start walking etc
The carers I had after my operation were from my local hospital , arranged by my heart hospital. They were completely separate from the ones that come in if you have a long term illness. They were absolutely fantastic, would have come in 4 times a day if I'd needed it, and would have come for 6 weeks, and it was all free.
You are not helpless for 6 weeks post op, there's a lot you are able to do by then . Before you finally make a decision, please find out what help you can get .
Under no circumstances would I put my dogs in kennels, those near me are awful and my dogs are used to me and all their comforts, I just woukdn't do it to them. There is totally not a single person I would leave them with. Not only do I live on my own, I also have no friends or family, only people I ever see are my Tesco delivery men once a fortnight and my dog walker. But thank you for the reply. The hospital I would have any surgery in is The Royal Jubilee Hospital in Glasgow, which is a centre of excellence for some of their pioneering work many times over. It has its own attached hotel and conference centre. Originally it was built as a hospital for wealthy Arabs, it is a place of luxury who now undertake heart surgery for anyone. I know that is where I would go, getting there is another thing it is 50 miles from me.
OK , I understand your problem. I don't suppose your dog walker could look after them for you ? As for transport. I know people in Scotland who live some way from their heart hospital have had transport arranged for them by the hospital.
yes I think patient transport is available, my dog walker has five dogs, she absolutely adores mine and she is terrific with them, so Ithink tgat may be possible xx
That would be good. Please don't give up any hope of having your operation. I'm sure with some support you could manage afterwards. You won't need people with you all the time.♥️
Thanks Isobel, I am still of two minds, but I am also conscious of the fact if I do nothing I think the worsening is bound to be the case, and what would happen to my wee dogs then, these two dogs are my life. I am also epileptic and one of them sleeps with me, the other sleeps in his own room, she just prefers it.
I know it's hard for you, but I'm sure letting your heart hospital know your situation and with advanced planning you'll be able to have your operation. It's a case of accepting you need some support and help to get you through the first few weeks. As you say, where would your dogs be if you weren't there ? You can do this , ♥️
I had aortic valve replacement, aortic root and ascending aorta replacement when I was 55. My valve (bicuspid) was working ok, but it was the aortic swelling they wanted to deal with so they did the valve at the same time (it was starting to go said the surgeon). I was quite calm about it but my family wasn't. For the surgeons it is a 'routine operation' and the success rate is very high but it is very major surgery. It's easy for me to say I suppose but the surgery was fine, the hospital care superb and they get you going very quickly post op. I had little pain and was soon walking. First 4 weeks are the hardest but that's just from the chest healing. As the surgeon said your heart is fixed the moment you leave the theatre. I was driving by week 5. Please follow all the post op rules though, no heavy lifting. I'm over 3 years post op now and feel 100%. Just keep taking the meds. I can't say don't worry, it is a big event, but hopefully you can find some pre op support at the hospital. All I can say is by 12 weeks post op you will be back to a new normal and will feel much better
thank you so much for responding and that’s brilliant. I’m so glad you’re back to normal. i’m literally gonna do whatever they say to get better. I was concerned about the driving because I wasn’t sure if I could drive or if I had to let DVLA know but I wasn’t sure.? may I ask if you’re on warfarin they said at present they’re not sure if I’m going to be having a mechanical valve or tissue valve until the operation, but that if it’s mechanical i will need to be on blood thinners and have bloods checked 3 weekly?
I'm not sure about telling the DVLA, might be worth asking your cardiologist,but whatever you do don't hand your licence in, it can take months to get back. I was driving again after 6 weeks. I can understand Yorkie's reluctance to have the operation, but it just isn't true that you can't even do little things for weeks after your operation. Some people who lived by themselves just had a friend or relative to stay over night for the first few days. Other than that, with planning in advance and people popping in to check on you, & give you some help, you'll be fine . I think you only have to have your blood checked X3 a week to start with.if you ' re . After that it's much less frequent. Some people even buy the blood checking kit and do their own. Please don't worry, you'll be fine ♥️
thanks so much Isobel for the advice i do appreciate it i feel so much better today. I’d had a really positive day yesterday interacting with people so thank you for that. It’s just so nice to be supported. I didn’t perhaps realise how much support I needed. I didn’t realise about checking your own bloods either that’s so good. I think I’m thinking back to my grandad who was on it years ago. Hope you have a good day.
I am glad you are feeling more positive ♥️ you are bound to be worried if you are just there with your own thoughts . Did you manage to speak to the BHF nurse? I do know that it is the first 2 or 3 weeks when you come out of hospital you have to be checked more frequently for your ? INR levels, but after that it is far less often. Some people with their own checking kit only do a blood test once a fortnight.
You don't have to inform the DVLA but you do need permission from your surgeon to start driving again - 5 / 6 weeks is the normal time before you can drive, letting the chest bone heal. Would be dangerous before then. Even opening a car door is too heavy in the early weeks. I have a metal valve and am on warfarin. It took a few months to settle but I've been on the same dose for 3 years now. I generally have it checked between every 6 or 12 weeks now. They occasionally adjust the dose if reading a bit high (alcohol can raise it!) .I've never been below range which is the important thing. I've got used to warfarin and it doesn't really affect my lifestyle. It's all about moderation but I can still enjoy myself on holiday. I was never offered a tissue valve, surgeon said at my age, metal was better as it should last forever
that’s great thanks for the advice i was not sure re the driving - that’s good news about the warfarin mind you i’ll do whatever i’m told to get better, i am not sure about the valve surgeon said he’ll decide what’s suitable on the day but if it’s the tissue valve and it does need replacing after 20 years they will do a Tavi surgery honestly my head was whizzing with all the info i am not sure if i took it all in but my husband’s there for a second ear 😊
Dear Cem
I had the op four years ago. I was bicuspid. And I was very frightened of travelling to London to have the op. By far and away the worst bit is what you are going through right now. But once I walked through the doors of the hospital, my fears melted. Staff were so lovely. Surgeons fantastic. Of course l knew nothing about the op, but I came through just fine. I did not have much pain, the drugs were pretty comprehensive. It takes many weeks at home to recover your strength, but at the end I totally had my life back again.
Cardiology are a cut above general wards. Own room. All just fabulous.
Can I offer a word of warning. If I write anything on this site it will be removed if inappropriate. On Facebook you may well find lots of advice, but you will also get the odd posting that is wrong, malicious, inappropriate. And you really don’t need that right now.
Success rate for your op is better than 99%.
Best wishes
Sooty
I can assure you and Cem our FB group is highly moderated and Cem doesn't need to fear malicious or inappropriate advice.
thank you so much for your kind words. It does mean a lot. i am really trying with my anxiety.
I can assure you, there's lots of people in our FB group that really struggled with their anxiety before their op. We're all there to support you ❤️
Hi sorry to hear you need surgery soon, hope your not waiting too long for surgery. I also have bicuspid aortic valve I have moderate to severe aortic regurgitation and moderate stenosis but I'm stable so won't need surgery to replace valve until I'm about 40 something which is a relief. Wish you all the best and keep us all updated when you can x
thankyou for your kind words I am in on 30 may and i’ll keep updated i felt so low this morning but everyone has really helped me i’m so grateful ☺️
Aw im so glad your having it done so soon x glad your feeling better in yourself this is a great support group and the Facebook group
I had mine replaced in2022, at 72 years old, you will be well looked after, just takes quite a while to recover
thanks so much, take care
I'm sorry to hear you are struggling, keep in touch with the website here it has helped me no end. I will have mytral valve replacement by open heart surgery tomorrow. To know so many people have been through it and are functioning again is invaluable. I really appreciate all the advice and suggestions and experiences of everyone. It really helps. I'm not worried about surgery, because I'll be asleep😂 but the support everyone gives is super! You'll soon be on the other side of surgery feeling loads better.
Thankyou for your words Dimelza66, i wish i had joined this site on knowing, family and friends don’t understand and i feel like i am living in a constant panic, the site has been so helpful and people are so positive and supportive to each other. i’ll be thinking of you tomorrow and will look forward to an update from you.
Good luck for tomorrow
Hi Cem,It's natural to worry but take it from me you'll be ok. Like you I was born with a bicuspid aortic valve. I had a root anuerysm too, so again, similar to you. I'm 60 and had my op three weeks ago tomorrow and I can tell you I feel better and stronger each day. It's a big op and you'll fell pretty beat up afterwards, but as many others on this forum will tell you, you get better. And best of all you get to live a life without a dodgy valve or a potentially lethal anuerysm. Try not to worry too much, we've all been there , and we're here, having had successful ops to tell you you'll be ok.
Cheers
Dean
thank you so much for your comments. It was a very lovely positive thing to read first thing this morning . you’re absolutely right at the minute it feels like no life really being lived as i am in constant panic and fear. I never realised how much health could consume you, every twinge and i am on high alert. how much time do you think I would need off work to recover? I read somewhere that you can’t drive for six weeks and it could take up to 8 weeks but I haven’t really been told anything. I have a pre-op assessment next Thursday, so I’m hoping somebody will be able to shed a bit of light on it. you take care and thankyou again.
Hi Cem,I would give yourself 6 weeks off work to recover. If it's a physical job you do then even longer. Trust me you'll be doing yourself the power of good the more you allow your body to heal. I do a fairly sedentary job and figured I'd return to work after 4 weeks. But I've upped that to six. It's nice pottering and getting better at this time of year. Your consultant is best placed to advise on when it's safe again to drive. But seriously Cem. Don't be in a rush , let your body take the time it needs to heal. I promise you each day you'll feel a little better
that’s actually better than I thought i do an admin job but I thought it would be eight weeks but you’re absolutely right about recovery time. I need to take my time. Thank you so much for responding.
I am so sorry and, with similar experiences, both understand at least a little, and greatly sympathise. You clearly understand a condition that you have lived with for years. You seem to have good medical advice. Do try to enjoy every small moment and think that this may , in spite of your understandable dreads, have a far better outcome than you now fear. Warm sympathy,
Tavishock
Thankyou Tavishock, the GPs have said how lucky I am to have had this picked up without having too many physical symptoms apart from raising heart and panic which is why they diagnosed it with anxiety until I had my echocardiogram done I appreciate your kind words thank you so much.
Good morning IAM Craig I've recently had xalue replacement and root surgery like you I was born like it and wasn't discovered untill my 50s lve been waiting 5 years in that time every got worse for years I was scared to death breathing got worse untill Dec I became unconscious I nearly died after that I really needed the surgery it's been hell day and night not until march did the surgery happen l no what you must be going through even before the surgery I thought I'd never make it .I did bear with it ice learnt to live with it meditating has help me being kind to myself has helped sometimes doing nothing helps keep your positive free of mind in check good luck
hi Craig I hope you’re starting to feel a lot better now , you’re right absolutely about positivity. I do find when I let my mind wander all the bad thoughts and all the negativity just pour in so I’m trying just like you to stay positive and do a little bit of meditation and a bit of CBT. thanks for responding appreciate it.
Hi, In 48 and having mine done at the end of this week ( fingers crossed) My dad has a history of heart probs and has had several operations and is so reassuring to me, seeing how healthy he always says he feels now and he is really active and positive. Thanks for all the postive messages everyone as its good for me to hear them too. Cem1234 please feel free to message me directly if you want too.....
Hi that’s so good to hear about both you and your dad, i’ve never been off from work so long. I’ve been off now since February and sometimes too much time is not always a good thing is it? The messages are so lovely from people people are so kind and supportive from yesterday. I’ve just felt so much better more positive. Thank you so much for your lovely message and yes, I will contact you. I’ll be thinking of you at the end of the week I look forward to hearing from you soon.
Hi, I ended up having AVR and replacement of the root and ascending sorta unexpectedly when I was 52. Once I knew I needed the op, I was in hospital in a number of weeks waiting until I was fit enough to have it. The waiting was very hard, especially as there were no visitors at that time. Once the op was over, you can focus on recovery. This takes time, but each bit of progress is very satisfying. I have 2 children, work and lead a normal life, and am very grateful for the care I had. It is such a big operation for us to take on board but to the surgeon and cardiac team, one they are very used to. I wish you all the best 🤗
Thankyou so much , how how lovely to hear that you’ve gone back to a normal life. I think when people mention open heart surgery to me it’s like oh my goodness it seems such a massive thing but like everybody says it’s something the surgeons do day in and out. we are similar ages I’m 51. I know things change but the consultant led me to believe that this would be something that would need to be done for me but it wouldn’t be yet it would be more in my 70s I think that’s why it’s such a shock especially as I was discharged in my 40s from the hospital. I was so shocked because it was classed as moderate and then it went to severe it terrified me. it must’ve been very worrying for you to have been on a ward during those times my own mum had cancer during that time and I remember we were waiting for her to get out of an operation and it was very frightening and very scary time in the hospitals then. thanks for responding the people on this site have been so positive and supportive
Having also been born with a bicuspid aortic valve, as well as an aortic coarctation, both of which I have had surgery to repair at various ages over the years, I am entirely empathetic with your situation.
Based on my experience of the cardiology teams I have had looking after me during my life, all of which have been at Bristol, you should rest assured that you are in safe hands. The "things they can do today" are amazing, and my only advice can be to put your faith in these people.
You say that they don't yet know what procedure they will use? I had a 'Ross procedure' and I wouldn't be surprised if they are considering this for you!
Again I can only report that mine was very successful....and the only other person I know who has had the same was also successful (his at age 21, mine at age 36...I'm in my 50s now).
I would be interested to know what they chose for yours, and also if its your first cardiac surgery?
The feelings you are going through right now are normal and understandable, but rest assured the surgical capabilites these days should give you cause for optimism for a good life ahead 🙂
hello thank you for your kind words. Yes it’s my first cardiac surgery and the surgeon has said root vs interpositional graft vs open distal anastomosis with 3 or 4% of major complications hopefully a tissue valve but surgeon said mechanical in the event of full root replacement which is a 5% chance. I haven’t looked all these words up he explained it to me and my husband with my anxiety high at the minute I didn’t really want to start looking up things on the Internet and getting even more worked up.
hi, I had aortic valve and roof replacement 2 weeks ago along with repair to the aneurysm and understand what you are going through as the waiting for this op is the worst part. If there is anything I can help with by sharing my experiences please let me know….i am trying to complete a journal of the day by day experiences from operation day to coming home and am happy to share this with others once completed if they would find it useful. Wishing you all the very best. Andy
hi Andy thank you for your comments. I hope you’re getting on okay what a good idea and a lovely way to help other other people. could you let me know if you know how long I would be expected for recovery time? I’ve heard that you can’t drive for six weeks and I’ve heard that it might be eight weeks off work but I wasn’t sure and also this is going to sound a strange question. Do you have to have a chest pillow to sleep?
Hi, I bought a v pillow from Dunelm before going in and personally can really recommend it. it’s the best thing I have found to keep things comfortable. Once you get home (I was in hospital for 6 nights) your pain relief should be more manageable and I am now largely using paracetamol with codeine at night. Things are going well, in terms of recovery they say everyone is different but I am already managing to walk around 1 mile on flat surfaces. I have a review with my consultant in a few weeks but the minimum time off work for me is 6 weeks ( I don’t do any manual lifting) at which point I am hoping to start driving again. The breastbone healing is the thing that takes time and you’ll be led by your consultant and recovery teams once you’re home. Hope that helps and any more questions please don’t be afraid to ask
perfect thank you so much. I’ll look at getting one of those and thank you for your advice. I’ll definitely be asking more questions. I’m sure ! thank you so much.
That’s no problem, anytime!
sorry me again can I ask who does the sicknote is at the hospital or is it your own Gp? My work have been okay, but I’ve been off since February.
Hi Andy. I noticed you are from Cheshire like myself. Would you mind saying where you had your operation and who your surgeon was.
Hope you have a smooth recovery
Cath
Hi, my operation was at the Alexandra in Cheadle and my consultant surgeon was Mr Lognathen Balacumaraswami (most know him as Mr Swami). He and the entire team were incredible….he works also at the Stoke NHS hospital.
Hi I had a mechanical valve fitted in March 2020 and have felt so much better since, no breathlessness now. I recovered well from surgery. Wish you luck 😀
I had a different journey to you. I had no symptoms until last year when I was in my mid 60s. My valve was normal but severely aortic when I was diagnosed. My mum died of heart disease. My lovely mother in law had oesophageal cancer but died a few days after a chest operation that required her chest to be opened up. I felt to sick and scared when I was told what lay ahead. By the morning of the surgery I was calm but didn’t necessarily expect to survive. Here I am today. Off to enjoy a family picnic in the sun. It’s nearly a year since I had the surgery and I can get on with my life and that’s great! So many people have this life saving treatment now. It’s serious surgery but routine and the doctors know what they are doing!
Hi cem1234.. it sounds like you’ve had some very upsetting things to deal with and now finding out you need surgery ! Please don’t be to hard on yourself, if you feel like crying then cry. People say the waiting is the worst, so one positive is that you haven’t got long to wait and you will get through this !! This group and the Face book group are so supportive and positive.
I found out 18 months ago by chance that I have a leaking bicuspid aortic valve that was moderate to severe and was monitored every 6 months, I found out last week on my 6 monthly echo that I now need surgery. I cried and felt winded when he told me this. So I completely understand why you feel so scared. I am waiting for my date, if you’d like to be OHS twins, direct message me and we may be able to help each other get through this.
I wish you well, join the FB group it will help you xx
bless you thank you so much for lovely words I will definitely message you
I can only add join the Facebook page it is fantastic They are brilliant a great support group for anyone waiting for and and afterwards too
perfect thank you so much. I’m definitely going to look into that today. I can’t believe how positive and supportive everybody is on this is such a lovely site. I just wish I’d come on weeks ago. 😊
Yes it is and the other group us even better We even to a Zoom meeting every three weeks on which if you decide to come can just listen or tell your story or ask any questions and if you didn't like it I eill be very surprised Lits of joined by seeing it recommended on this group I never regretted it still logging in a year after having a TAVI valve replacement
Hi.
I was born with a mitral valve issue and monitored at hospital every 6 months till i was 50 in October 2023, they then told me it needed doing ASAP. It obviously a worrying time but i had the operation end of February, OHS, 10 weeks into recovery and feel great, i didn't know how poorly i must have been because of how i feel now.
I'm sure you will feel the same and post something similar in your recovery.
Best of luck
that’s wonderful to hear Paul thank you so much for letting me know. I’m so glad you’re getting on okay
The waiting is absolutely the worst part. I was diagnosed 4 months after my Dad died from heart failure. Can’t even explain how I felt. Even considered not having the surgery but I’m now 14 weeks post mitral valve surgery (in my 50s), been back at work for 10 days - working 8-2 so shorter hours than usual but a fairly decent length of time. Getting backache but no other symptoms at the moment. Been discharged by my surgical team back to local hospital for annual review and yesterday I walked my first 4 mile walk without breathlessness. You’ll soon be saying the same thing!
I’m so sorry about the loss of your dad. Must’ve been terrible for you with all that you were going through. You’re absolutely right it’s the waiting that’s the hardest part. unfortunately, I have my mother-in-law‘s funeral on Tuesday and I was so frightened that I wouldn’t be able to go but also frightened of taking poorly at the funeral the fear just grips you.
I work in admin and I’m definitely gonna do the same. I will never be able to go straight back to full-time work.It’ll have to be a phased return. A 4 mile walk. That’s absolutely brilliant. Well that’s definitely gonna be my inspiration.! 😊
There were so many people on here that gave me hope. There were moments where I thought I’d never get through it but I’m even planning holidays now having cancelled four.
I’m so sorry about your mother-in-law’s funeral. That’s tough while you’re so ill.
I had my daughter’s graduation last year and I was worried about letting her down during that and her finals.
Keep in touch, I’ll be looking out for your posts x
thank you so much you have been so kind
Jollymiller080311
1 year ago
I’m now into week 6 past operation and getting back to normal, just some slight pain in chest where they opened me up but very slight.
It’s taken me till now to get back into a normal sleep pattern but thankfully this seems to have sorted itself,
The care from the hospital was absolutely fantastic,, for anyone worried about the procedure I would say it’s more discomfort than anything else, I’m now looking forward to gradually getting back to my hobby of hillwalking but gradually!
Here’s to life !
that’s amazing and good luck with the walking ! brilliant six weeks I am worried and thank you for your words. You’re putting my mind at rest.
I had my mitral valve replaced over two years ago.
Surgeons are superb and they know what they are doing. I am living a fantastic life now.
Just Imagine the healthier days are ahead. As soon as I woke up i felt better rhan before. Thats what you will feel like. I waited long as well and its not nice to wait. But leave it to doctors and trust me they are superb in what they are doing.
Good luck.
hello, I was also born with bicuspid AV, had no symptoms at all except occasional pounding palpitations, like you mentioned, my diagnosis was coincidental, long story I think I shared it here. These surgery, I was told, are not as complicated as they were, say 20-25 years ago. I have had mine done January 2023 and it had changed my life, I feel much stronger and fitter than ever before.My advice is try not think about too much, everyone involved in your care know exactly what they are doing, you will be absolutely fine. This surgeries are indeed a life changing event and how you manage your fitness afterwards will have more impact on your health and wellbeing. Wishing you all the best for your surgery hope you don’t have to wait long.
thanks so much i am booked in 30 may i am trying to stay positive, i will really try to worry less thanks for reaching out, lovely to hear such positivity , that’s brilliant news about how you’re feeling. I will do whatever I am told moving forward to keep myself well, it certainly made me appreciate my life a lot more.
sorry for your losses. I had an AVR 9 years ago this June. My sister passed away just before that aged 62 of a heart attack. The thing you have to cling into is that you will feel tons better once you have had the operation. BHF also has a nurse on hand to answer any questions you might have x good luck x
thankyou so much i am going to call them tomorrow, sometimes i feel so positive then i get a twinge and i am on high alert and so tense and literally the anxiety wins unfortunately but you are so right afterwards i will feel so much better.
I hope the BHF nurse is helpful. Just remember although the heart op is a big deal for us going through it. These surgeons often do 2 AV replacements and aortic aneurysm repairs a day, and they will have done hundreds of them . So try not to worry, honestly you will be fine ♥️ I was 73 when I had my operation xx
I had an aortic valve replacement in January by TAVR. It was over in an hour and 10 minutes and I was up walking the hall of the hospital without a problem and discharged the next day. It is great to no longer be doubled over unable to breathe well just from walking room to room.
Both my parents had to have the same valve replaced but that was when they only had open heart surgery and they both came through it fine even my mom who also had emphysema from smoking like a chimney up to the morning of surgery. Dad was discharged 3 days later and did fine at home. Mom had to be in a couple of days longer and my brother stayed with her for a couple of weeks because of her lung issues. Both recovered without incident and had a much better quality of life. Dad died about 21 years later because he was an idiot and wouldn't take the meds he was supposed to near the end. Mom is still living over 30 years after hers even with her emphysema and she is on oxygen 24/7.
I am sure you will be just fine. It is scary but the waiting is the hard part. By the time I got to the hospital I just wanted it done so I could get on with living instead of merely existing because I was so bad off. You will feel so much better and far less stressed once it is done. Try to think of how much better you will be doing after rather than fear of the procedure itself. And you will be doing so much better. I'm able to do things I hadn't been able to for a couple of years before it. I was amazed at how bad off I had been. The surgeon said that he was surprised I was actually living long enough for the surgery as I had thought my problems were related to something else until I ended up in the ER. Never going to be that dumb again.
Thankyou you are so right i need to focus on the outcome rather than all the negative thoughts i am feeling. it’s amazing that you are doing so well i bet it’s just like having a new life so i am going to take that today and think of that, and also your parents and their positive outcomes, sorry about your dad but your mum must be made of very strong stuff! i feel the same as time goes on i just want it doing now and my life back, thanks for responding it’s lovely to hear such stories it’s making me feel so much stronger,
Hi, i was the same as you , bicuspid valve, had the op 3 yrs ago so far so good have a check up once a year which is due soon. I was the same as you very stressed and thinking the worst but when the time came to have the op the nurses docters and all the staff were all so reassuring i just calmed down, these surgeons are so good at their job you be ok, its routine for them.
All the best Presley
I was scared too before mine but knowing my parents came through the same replacement and my mom had been in much worse shape and she is still around made it much easier for me. The risks really aren't that bad anymore but they still tell you because it is required. I think you have a higher risk of getting hit by a car crossing the street nowadays. I'm sure you will come through fine. I feel like a whole new person since coming out of the surgery, lots of energy and no shortness of breath and I felt like that the first day. Having it the way I did I came out with no pain or swelling though I think some of both is typical. Best wishes to you.
thanks i am now feeling more positive and i spoke to BHF nurse today too when you are on your own at home and have too much time you can get carried away with negative thoughts. I too am looking forward to waking up without the feeling of dread and the palpitations and panic thanks Tlyna 😊
Beta blockers cause some people depression. I had to be weaned off mine. Like you crying at anything losing myself. I to have a bicuspid valve with moderate to severe stenosis and a part of my aorta needs surgery. I live on my own and I try so hard not to think about it. I struggle walking especially up and down stairs. A couple of months ago I was really ill and they were deciding to replace my valve then but they stabalized me. I'm still being observed. I hope all goes well with you.
Hi Cem1234, Im a 55 year old male with a bicuspid valve and an aneurism. Im due for surgery at the end of the month and understand how you feel you are not alone. There are alot of positives. This has been found and can be fixed and you will feel much better too. I hope you can try and relax and start to feel better.
thankyou so much for your kind words and wishing you all the best, i think it’s for me when the negative thoughts creep in, usually i am very positive , however at present this doesn’t feel like much of a life as i’m on the sick, constant tiredness and unable to do things, i’m trying so hard to look at life beyond this, surgery is on 30th may please keep me updated after on yourself and how you are doing. take care
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