Had a meeting with a surgeon at Glenfield Hospital last Wednesday and was told my valve needs replacing as soon as possible, I'm expecting to be admitted within 2 to 3 weeks.
I was told over 3 years ago my valve would need replacing but I've been monitored ever since. All of a sudden my valve is deteriating and now it is all so real and the time is here.
I am a strong person but I find myself getting really apprehensive about having open heart surgery. I read most posts on here and I will draw strength from you wonderful people who have already gone through this procedure.❤
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meashamfox
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Thanks gmkilly I was told almost 3 years ago it would need replacing within 6 months and having it on my mind for almost 3 years has been a test in itself.
I hope they don't keep you waiting that long. Any help or advice I can pass onto you after my procedure I'll be happy to.
Hi, please don't worry about open heart surgery they are all rather good at it now. l had all valves repaired 01/17 due to sepsis and severe endocarditis, then needed a mechanical aortic valve replacement 5 weeks later so two open heart surgeries in 5 weeks but it was OK thankfully. You are sore afterwards and quite dependant on others and it takes a long time to get your confidence back but then you are all mended and will eventually jump out of bed like a gazelle!!! Sending you lots of love on your journey please stay strong, Sue x
I had my Aortic Valve replaced in May - don't worry the thought of having it done is much worse than the operation itself. You are very tired and dependent on others for a while but if you are determined and focused which you sound then you will be fine.
I had my aortic valve replacement 3 weeks ago. It has not been as bad as I thought. I am amazed how I am recovering so well. You will need help the first couple of weeks and will be tired and sore. You won't be able to lift. Plan for when you come home. Make sure before that you enough pillows, loose easy to wear nightwear / clothing, is your toilet upstairs? Good luck ❤
Thanks Gill, it is reassuring to know you are recovering well and it wasn't as bad as you thought. The mind is a powerful tool and everyone that has replied has been so positive. I'll be taking all this positivity into the theatre with me.
I have a pre op on Monday and have to go in on Thursday.
I went through an AVR (mech valve) and pre-emptive double by-pass in Oct 2015.
It was all rather a very quick diagnoses for me, however although I was very apprehensive about it all I knew that it was the best and it would let me keep living and do things I still had plans to do (except diving).
Afterwards I found that in keeping a diary I could see the progress I was making and gained confidence from that.
The things that I learned was
1) To listen to my body - when tired be tired
2) Emotions are there so that you do listen to your body and what it needs
3) Confidence - I found it hard being out and about - scared that someone would bump into me or that I would be a burden on people if something was to happen to me! This takes time and I did create a few positive thoughts for myself. Things like I have been given a second chance so lets get on with it. I have every right to be here but no right to complain about what I have gone through. Also what is past is past and what I have been through is part of my life story.
4) Daily walks using lampost target distance really helped (except having to come back against a strong wind lol)
5) I have good days and bad days but at least i am still around to have them!
6) This is a great site for support at all times!
I was able to go on a great holiday to Thailand in February 2016 so things do pass quickly!
So relax and trust all the hospital staff, they are experts at what they do.
Work well with all around you and things will pass.
My slight regret is that I didn't have it done earlier in my life, however that was balanced with the knowledge that i have had it done and now have the heart of a 27 year old!
Hi Alheart what a wonderful positive post. I to have aortic stenosis quite a rapid detoriation in a year. Had all the tests and just had letter the surgeon s had meeting and are watching and waiting? Want to do another echo December. My gp feels I'm symptomatic and asked if cardio can see me sooner. Emotions and anxiety high .
You must be so frustrated and I am sorry that you suffering.
I know that it is not easy for anyone. The NHS are under pressure with treatment demands and their prioritisation of patients is not often seen or shared with likes of yourself and your GP!
That said I think that you and your GP are doing the right thing in asking Cardio to see you sooner - fingers crossed.
I was fortunate that I was taken so quickly but having said that I was at the desperate end without anyone knowing it! I had no real issues regarding pain etc. and where I may have had some I put down to "just life and career pressure" (very foolish of me)
One of the things that i have learned is that it is my body and that I now know when things are not right as much as any GP or Cardiologist could see!
There is no shame in getting something seen to if you feel a huge difference in pain etc. The NHS would far rather see you and check you out than not and they recognise and accept that we all have different pain thresholds, stress levels etc. and am sure that the consultants take such things into account. (no one wants negligence)
I know that the emotions, anxiety, stress etc. are like heart illness in that they can't been seen but they hurt both physically and mentally.
(A cardiology nurse said " a broken heart is a broken heart be it physical and or emotional. The good news is the physical side can be mended by the NHS " (Said the night before my Op and brought a smile to my face!)
I know how I felt when discussing the op etc. how the emotional side grab me just a week before my op!
Perhaps this is the time to focus on relaxation techniques and trying to reduce and control any anxiety and stress issues (your heart will thank you for this). I know that I wished that I had focused on this before my op, even if my "catch-up" was fast afterwards alas there is little physical medicine for this.
Another regret is that I wasn't on this site quicker!
This is a great sight and has a great heart "family" as its members from BHF professionals to "Heart stars" and "Braveheart" Ambassadors and the experienced.
So try and stay calm and know that you have a developing team around you (you, your GP and your cardiology team)
It is not easy, it is not pain free but at the end of the tunnel there is something that money can't buy!
Always here to try and help
So happy chill out and happy bucket list planning for after
I am glad that we can all share on this site and help one another.
Couple of things that i would add that helped me
1) In Oct 15 the journey home was horrendous! Because of the open heart surgery I felt bumps in the road that normally you just wouldn't feel! I did have a couple of pillows between me and my seat belt but that wasn't enough!
In Feb 2017 I had the awful experience of someone thumping into my sternum which caused a lot of pain an a week in hospital. The consultants couldn't repair what had been done and over time I have recovered. On release from hospital I was given a vest which is like a modern life jacket but has foam inserts and could be worn under a shirt or jumper this was great so I implore everyone to ask for one.
2) I was given, by a very wise friend, a medi-tag (or SOS talisman etc.). This is an ID dog Tag (you can get necklaces bracelets etc.) It has the Medical decal on the front and it states on the back
My Name, Warfarin User, AVR, INR reg. Nos and my CHI (pronounced /ˈkaɪ/) reg Nos. A unique ten-digit individual patient number
I think in England it is referred to as your NHS number.
Anyway any medical professional can through an appropriate system access my notes if I end up needing medical attention.
This is a real comfort and I would recommend anyone with specific medical needs to get one.
Thanks alheart, you seem to have had it mastered. The diary is a great idea and I'll certainly be adopting that tactic. I'm taking everything on board from everyone and you will all be with me in the operating theatre ❤
I’ve had two AVR ops, the last one was last November. Both ops have been at Glenfields and the staff there are brilliant and really supportive, the food’s not too bad either!
They’ll have you out of bed the day after your op and the physio will have you up and walking within two days. Once you can walk they take the catheter out so you have to walk to the loo, but a nurse will walk with you the first few times if you don’t feel confident, just ask. Nothing was ever too much trouble. Can’t remember all their names, but Soby, Joe and Rob were lovely.
Best advice is to make sure you take the painkillers, both whilst in hospital and when you get home. This is no time for heroics as you won’t want to move if you are in pain. Do ask for more painkillers if you need them. I had problems with my shoulders (existing problem) especially at night so I usually had to ask for extra pain meds at night. Once you get home and get settled you can start cutting down on them, I found I needed them first thing in the morning and at night but not as much during the day.
Don’t overdo it when you get home, but also don’t sit around doing nothing- both scenarios won’t help your recovery. The hardest thing when you get home is probably sleeping. First time I used a rolled up duvet so that I was propped up slightly, but this time I had a bolster pillow - I got a full length one but the v-shaped ones are just as good.
You’re taste buds may be affected by the anaesthetic, mine were, everything was tasteless and I even went off biscuits I used to love. Your memory and concentration will also be off for a while, but this soon passes. I couldn’t read a book to start with because I’d forget what I read, so I stuck to doing puzzles like sudoku.
I’m sure everything will go well, if there’s anything you want to know just ask. Keep us posted.
Thanks Wendy, it's the not knowing what to expect that gets me, and the recovery. I still play football and it's going to kill me not being able to play.
I'll certainly take on board everything you have passed on xx❤
You won’t feel like playing football to start with, but I was driving after 6 weeks and back at work after 12 weeks. You’ll be surprised how quickly you recover, especially when you’re reasonably fit to start with. Set yourself small targets when walking - don’t forget you have to get back home - and slowly increase the distance. You should get offered rehab, although I wasn’t but that may have been Lincoln Hospital being lax, but as I went back to work at 12 weeks I got plenty of exercise.
If he hasn’t already done so, your surgeon will discuss what sort of valve to use. I had a tissue one the first time, but it didn’t last very long and had a mechanical one this time, mainly because I had a splenectomy two years ago and didn’t want the risk of further ops. Glenfields are also one of the hospitals that are doing surgery with a new tissue valve that is supposed to last a lot longer than the usual tissue ones, so worth asking about them, can’t remember the name of it, but might be something on their website.
Thanks Wendy, I play walking football and I've set myself a target of playing again by next spring. I will set myself targets and take it one day as a time. Driving after 6 weeks is good and getting to that 12 weeks will be a boost. I have been contacted by the rehab team already, they can't wait to get their hands on me 😊.
I chose to have a mechanical valve although the surgeon explained the benefits of a tissue one. I don't fancy having to face this again so I think I'll stick with a mechanical one.
At last, my pre-op was yesterday, and my op is scheduled for the afternoon of the 14th. I believe that the tissue valves, which I'm having, are Pericardial/ Edwards valves. I'm thinking that Meashamfox had his op yesterday. If so, as soon as he, or relative reads this, please pass on all our very best wishes for a speedy recovery.
I’ve been told my valve could need replacing up to every 3 years at the mo so I’m glad I’m not the onli one, I’ve had it replaced via keyhole surgery but been told my next op will be open Heart surgery. I’m trying to understand what it be like as I can’t remember having open heart surgery as a kid.
I have received a letter this morning, I have a pre op on Friday and will be going into hospital on Thursday. It's all moving very quickly now. Anything I can pass on to you after I've had the procedure I will be happy to. xx❤
I hope it all went well, at a guess you will still now be in critical care. I hope everything went really well, that you are feeling well on the way to recovery. The posts from everybody on this site has helped my nerves. Having had quite a few operations in my time, nothing has compared to the apprehension that I feel for this one coming.
Good luck meashamfox, by Xmas you’ll look at this thinking it wasn’t hat bad 😂 the words open heart surgery sound worse than what it is all the pain is controlled and the morphene is great once you get that, I can say all this first hand you will look back and understand what I mean.
Good luck Meashamfox, I’m not in the same boat but I understand how you feel. I had a blocked artery and have had two stents fitted, it knocked me sideways if I’m being honest. My advice would be to get ready for the emotional battering you’re going to possibly feel. I felt very sorry for myself and very down. I’m starting to turn a corner now with the help of my cardio rehab, thoroughly recommend doing that btw. Anyway, hope all goes well and you start to reap the benefits soon. Thanks for posting your thoughts, we love reading them and also it lets others share experiences.
Thanks, everyone has given me positive replies and I'll take that over negative anytime. I'll try and take it one day as a time . Everyone on this site has been helpful and supportive . Thanks again
Thank you Clare, I've been waiting since October 2015 since I was told it would need replacing, all of a sudden everything is moving quickly. I go in on Thursday and the operation will probably be Friday. Getting a little nervous xx
See if your anticoagulation clinic supports home testing. I bought my machine, testing strips etc and test my blood when they tell me, phone through my result and they let me know what dose to take. Some gp surgeries will prescribe the test strips, unfortunately mine doesn’t. It makes life so much easier than having to take time off work to attend the clinic, especially if you struggle to stabilise your INR levels.
My surgeon was Mr Hadjinikolau, very nice bloke and did a very neat job with my scar - which is more than can be said for the surgeon at Lincoln hospital who took out my spleen and has made a complete mess!
Hi, hope you are now recovering from your op. Be kind to yourself. Sure you will soon be walking your daxis! Cardiac rehab will be great to get you back on track once you are healed up. My hubby looking & feeling great ten weeks after op. . Ps be kind to the wife - we suffer too!
Hi thank you so much for taking the time to message me. After 3 years of anxiety my operation is done and I'm hoping to go home tomorrow. I think my wife has suffered more than me, and I don't want her suffering anymore. I know there is hard work ahead physically & mentally but I have been given a new chance and I am going to take it. Thanks again ❤❤
Really pleased to hear you are doing well. Such a relief for you. Yes sometimes it’s more difficult for our loved ones as they are the onlookers who can only imagine what we are going through which sometimes is worse and as you say more stressful. So stay strong. Follow the exercise regime and do as your wife tells you (trust me it’s better that way!). Take care and sending positive thoughts and hugs. Zena x
Good morning .....So pleased to hear you are doing well and going home soon. Onwards and upwards ! Take care and keep us posted. Best wishes to you and your wife . 💕
My husband had aortic valve replacement and partial repair of the ascending aorta four weeks ago. Physically he's mending well but he still gets quite emotional at times. One of the biggest issues is the loss of taste which has been ongoing since the operation. Some food has no taste at all and food that he can taste has an altered salty taste. Has anyone else encountered this problem please? Thank you.
Fortunately Debbie I have had no issues like your husband is experiencing with food and taste buds. I have always been an emotional man and can cry at anything and following my operation I was getting more emotional than usual. It will get better but I don't worry about that. I hope things improve for him ,I'm sure they will ❤
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