Leaking heart valve

[Pbbluenose]

I've been diagnosed with a leaking heart valve which is now severe.I'm currently awaiting to go into hospital for a new heart valve via open heart surgery.

To say I am scared is an understatement.

I'm not really sure what to expect.

[Yumz199725]

Hi sorry to hear your going through this 💔. Which valve is it, I have severe aortic regurgitation and moderate stenosis and will eventually need valve replacement surgery. Are you having symptoms with the leak? Wish you all the best and hope your not waiting too long your operation. There is a brilliant Facebook support group you will definitely benefit from joining (UK AORTIC AND HEART DEFECTS PRESURGERY POST SURGERY) definitely request to join so helpful and supportive most people have had this operation or are still waiting like me, and you. I've been told the waiting is the worst part and once you have had it you will feel so much better! ❤️💪🏻. Have you had your preop yet or are you still waiting for appointment with surgeon?? Wishing you all the best and keep us updated on your journey! 🥰

[Pbbluenose in reply to Yumz199725]

Hi Yumz,Thank you for taking the time out to respond to me.

Like yourself I have severe aortic regurgitation which is now severe and so a replacement heart valve is required.

I saw my surgeon on Tuesday and he advised me of the options for which type of valve I could have. I'm now expecting the op to be done within 2-3 months.

I've had my test of chest Xray, ECG & blood test.

As I mentioned I'm am scared, however it's nice that like yourself folks have taken time out to share their own experiences, this I find is of great comfort and has already given me some reassurance of what to expect.

Thanks again

Bluenose

[Yumz199725 in reply to Pbbluenose]

Ah you so welcome I'm so glad I can share my experience, so do you have stenosis aswell or just regurgitation? That's good that there sorting it out so soon! I have been told when I do require valve replacement will be major surgery and they will sort it out very quickly so I won't be waiting long for operation when I do need it which is good. What symptoms you been having?? Can I ask what measurements of the leak are? Sorry for all the questions, just curious 😅x

[Pbbluenose in reply to Yumz199725]

Hi. just regurgitation, no stenosis.

I don't really have the symptoms associated with leaking heart valve. I had an echo scan back in 2021 which showed I had a moderate leak.

In 2022 I had another echo scan but this was inconclusive so they sent me for an MRI scan, which of course showed it now to be severe.

My aortic is showing 41mm, not fully sure what that means.

Anyway just now sitting tight waiting for the call for my OHS.

Take care, hope your arm starts feeling better soon.

[Yumz199725 in reply to Pbbluenose]

Ah ok, maybe the left ventricle is enlarged or blood pressure is affected maybe, I guess it's different for everyone I just thought you needed to have symptoms to have AVR 🤔. What else did the MRI show? I think when it gets to 50mm it's operated on all I can assume is you have other circumstances that mean you need an operation even with out symptoms? Sorry I'm just confused, because I'm not even sure what there waiting for to operate on me, I have severe aortic regurgitation and moderate stenosis?? Do you have an enlarged left ventricle? Sorry again for all the questions x 😅. Hope you get the call soon, where you having your surgery?? X hope your not waiting too long for your operation! ❤️

[Classof1988 in reply to Yumz199725]

Yumz, what a lovely response. I will reply to PBbluenose as the more testimony they read the more encouraged they will feel, but you have really said it all. How are you feeling after your swollen arm? I walked around for 19 years with a leaking valve, with no symptoms, as a result of rheumatic fever, and the medical protocol seems to be to not intervene too soon but operate while you are still feeling well and before symptoms appear.

[Yumz199725 in reply to Classof1988]

Ah thanks I wanted to share my experience even though I'm still waiting for valve replacement surgery x my arm has gone down sooo much bit itch but it's not hot and bright red anymore, I am how ever on my way to A&E because of a different problem can't walk properly on my right foot so painful x yeah your so right about that, you have to meet all the criteria but not be too sick for them to operate it's so confusing 😅🤪🥴. Thanks for asking hope your keeping well.

[Classof1988 in reply to Yumz199725]

Thank you. By God's grace I am well. Praying for a speedy and full healing for you foot and for whatever has caused it.

[Yumz199725 in reply to Classof1988]

Thanks I'm glad your ok x ah this heat is aggrevating my arm and it's itching and burning but a bag of Ice on it it helpd for about 5 minutes then started melting the Ice. Ah what a waist of time I got there was there for 5 minutes and they said go home elevate it and put ibuprofen gel on it, so literally cost me nearly 20 pound for nothing!!! X

[Sootyismycat]

Dear bluenose

The procedure is amazing. I had a replacement valve April 2020. It is a big op, and recovery is months rather than weeks.

But a unique factor is that I felt a little improvement every two days.

If I give inappropriate advice, then this site is monitored and will remove my post. If however I post on Facebook then I can give wrong, misleading and bad advice which becomes online Facts. I would urge you to avoid doctor google and rely on the NHS site and The BHF site.

waiting for the op is far and away the worst bit. reading about the tiny minority where things went wrong is not helpful. The London hospital that did my op told me the success rate was better than 99%.

I was a nervous wreck, but the minute I entered the hospital, the nerves melted away. The staff were so well trained and deal with OHS every day. There are three tests before the op. Probably done as an outpatient. The tests are fine, no pain, no issues. Your surgeon will talk to you. The main thing will be whether to give you a metal valve or a synthetic valve.

The day of the op is well organized. You will be asked to shower and wash your hair using provided shampoo. Nurse might help you with that. I walked to the ante room and then got on the operating table. They then started getting needles in and I was about to ask if they could wait until the anaesthetic kicked in.

I woke up two days later, all done.

Best wishes

Sooty

[Pbbluenose in reply to Sootyismycat]

Hi Sooty,Many thanks for taking the time out to share your experience with me.

This has given me some reassurance on what I can expect.

I've had the no pain test of xray, ecg & bloods, now expecting op within 2-3 months.

What's frustrating for me is that I don't yet have any real symptoms associated with the leaking heart valve, however I know that long-term this operation will prolong my life.

Another reassuring this is thatits nice to know that folks are happy to share their experiences to help others.

Once again thank you for your comments.

Best wishes

Bluenose

[Rhinos67]

Hi

I had OHS in April 21 to replace my Aortic valve. Unbeknown to me until Oct 20 I had a congenital heart defect, a bicuspid aortic valve and at that point I was diagnosed with severe aortic stenosis. The diagnosis was such a shock and the thought of surgery and a hospital stay sent me into freefall. This group was helpful, but I got so much support from UK Aortic and Heart Defects Pre and Post surgery facecbook group. There are Zoom chats and to see people in the chat who had only had their surgery 2 weeks before gave me a lot of reassurance. I was able to ask questions and get immediate answers. Obviously they aren't medical professionals but they have all been on Re goung though the same journey.

Definitely don't Google though. I did and I ended up having a massive panic attack as a result.

Please ask if you need to know anything, or I may see in a Zoom in the Facebook group 😁

Joanne

[Hidden]

Hi, You've had some good responses, so there's not much I can add, but, you've touched on the options the surgeon has given on valve types. It really does make a big difference post-op, so you have to make sure the type you go for is best for you. Age can make difference, it certainly did for me, so choose carefully.

I've had a total of four replacement valves along with a repair, over three operations, the first in my early 30s. I'm probably a bit gung-ho, but it'll be 29 years soon since that first one, so I've seen the benefits surgery can bring longterm.

You seem pragmatic in your posts, which I've always found breathes positivity into the situation.

I remember one of the forums members once writing something along the lines of...

To me, Heart Surgery is about not having a choice, you just have to get on with it.

I couldn't agree more with her.

Be positive and Take Care

[Yumz199725]

At your last echo did they tell you the measurements of severe aortic regurgitation? Because I never know what mine is 😕x

[irishwife93]

Best of luck with your surgery today. The people operating on you are highly skilled and have performed I can only imagine hundreds of similar procedures. They will take care of you and it should all run smoothly. Please let us know how it goes ❤️

[Catmum23]

I had no symptoms before my op. I went into hospital with sepsis and was told they could hear a murmur. Next thing I get transferred to Hammersmith being told my aortic valve is narrowed and needs replacing. Was all very sudden but hospital were fantastic and my new valve is working fine.

[Lilredsz]

Hi

I have lived with a leaking valve for 10 years despite having surgery for 10 years. With Sacubitril Valsartan it is moderate. Naturally everyone’s circumstances are different. I sleep with a V Neck pillow and swim to try and build strength especially for the lungs. I don’t take fluid retention tablets but manage my water intake.

Do not be afraid to ask questions and seek options, and also remember to not feel you have to tell everyone you are OK, if you are not.

Take one step at a time and give yourself time

[Dozival]

Hi, I had a replacement mitral valve via open heart surgery on June 26th. I went for tissue rather than mechanical (I'm 73). Two and a half months later I feel totally normal. The thought of the op is awful but it's the medical team's bread and butter and I'm sure you'll be glad when it's all over. The follow up support has been brilliant. You say you're scared - can you identify what you're scared of particularly? Is it pain or dying or the op not working? It's great that you've only got 2-3 months to wait, also that we live in a country where this surgery is available and there won't be a bill at the end! Aren't we privileged?

All the very best. Take heart 💜❤️

Val

[Pulsesater]

Hi really don’t worry the benefits you receive by having a new valve will be amazing, I’ve had two open heart surgeries so could say I’m a dab hand at it now I’ve never worried about it as you are in their hands and they are excellent at doing it like a day in the office for them 😉 it is not very nice recovering from it but like I say you will get your life back so it’s worth putting up with everything, like I say don’t worry or be scared as all will be fine

[Larneybuds]

Good morning.....I am just a year post surgery for two valve repairs. I was expecting replacement valves but my surgeon decided on repairs. It is daunting thinking about open heart surgery but this operation is very common, has a really high success rate and is performed by experts . You won't know a thing about it and though a reasonably long op....click your fingers and you are waking up....that's how quick it feels . A day or so in ICU to stabilise everything before you go back on the ward and then on with recovery. The team and nursing staff who look after you are amazing and your pain relief will be extremely well managed. Once on the ward this is the start of your recovery. Just do as they tell you to do....you will be given lots of information about going home and what to do and what not to do. It's not a walk in the park because you will have had major surgery and once home you will most probably experience big jumps forward with maybe a few steps back....this is normal but just stay positive and determined. You should very quickly start noticing differences and feel better. Doing the exercises and building up your daily walking are must dos even on the days you don't really feel like it . A big 'do' is make sure you rest on a daily basis and dont over extend yourself. You have lots of tips and advice from people on the forum who are very supportive and experienced in the recovery from open heart surgery. Big tip....stop googling....it doesn't make any difference to what is going to happen and can often fill your head with things that aren't useful. Just stick to BHF, NHS or suggested useful sites from good sources. Waiting is the worst part....once in hospital you will most probably be surprised at how calm you are. I wish you all the best for your op and a good recovery....take care x

[Belfast21]

Hi. It’s almost two years to the day since I had my Aortic Valve OHS (tissue). Yes, you’ll feel wrecked afterwards (to be expected) but after a few weeks you’ll feel so much better. Take advantage of any rehab you’re offered and keep looking forward to your new lease of life. Of course it’s scary but at this level the surgeons and carers truly are experts so you’ll be in good hands. Don’t push yourself too hard, take any support that’s offered and listen to your body. I’m so thankful and appreciative for OH Surgery. It’s remarkable. Don’t worry once you have your operation there’s no going back only forward. Just do it!

[TriumphLover]

Hi.

I had a valve replacement ( along with a membrane removal and wall thinning ) on the 20th Aug. After researching I opted for a tissue valve.

Went in on the Saturday and was home the following Friday night. Depends on your mindset but I wanted to know what to expect, people on here were very helpful.

I was in Liverpool Heart and Chest hospital, excellent care, couldn’t have asked for more.

So it’s 3 weeks tomorrow since the surgery, I’m up and about and building up the walking each day. Pain is well manageable with paracetamol and Tramadol.

Happy to share any details, just let me know. Nerves are normal but focus on the positives, don’t read the negatives, they don’t help!!

Colin

[Survivor1952]

Welcome. I was diagnosed with a regurgitating Aortic valve after having had two stents inserted. My EF, I was told, was below 20 which is, I understand, severe regurgitation and heart failure. I've had AVR and 1 x CABG on top of the angioplasty. My EF is apparently back to normal for my age. I've had a tissue (bovine) valve.

Since my op I've had days when I seem to have gone a step forward, the change on the previous day is noticeable. Only issue I have is that my right shoulder is still sore but it improves with exercise, now that I'm allowed to go swimming I will do so to help recovery. I'll continue with the rehab exercise class as long as I can too.

I feel years younger, literally. I'm 12 weeks post op yesterday. If today wasn't my birthday I'd be doing, for the first time in my life, a Park Run.

[maggie80]

Don't be scared. In Nov 2021 I went into Broadgreen Liverpool. I had a heart valve replacement and a quadruple bypass. It took 12months to recover. I go out on my ebike, go walking and I love to work in my garden. Been to Cyprus twice 2022. Don't be scared. Let it go over your head as though it's not happening to you. All the best, C

[Hridhoy]

I had an OHS to have my Aortic valve and root replaced in January this year.

As everyone mentioned: it is a big surgery but be reassured that medical professionals doing this in the UK are some of the best in the business, so you will be in safe hands.

Post surgery you will transferred to ITU for 2/3 days and then to general ward for 3/4 days. When you go home, for first 3/4 weeks you will feel exhausted but the key thing is to keep moving, take a few steps around the house every so often. After 3/4 weeks you will begin to feel better and more energetic and would feel confident to go out for little walks, first few times you do that take someone with you.

Pleae do attend the cardiac rehabilitation clinic, I can’t stress enough how important this clinic is. Around 50% of the people invited to this clinic do not attend, which is baffling to me.

I went back to work after 5 months of surgery and also joined my local gym and going there 2/3 times a week and again I would mention the cardiac rehabilitation exercise clinic, if it wasn’t for them I would never have the confidence to go to gym.

all the best try not to stress too much, I know it is easier said than done.

[Drummer20]

Hi,I’ve just had surgery to replace aortic valve 2weeks ago.I spent a lot of time waiting and putting my life on hold a bit.I’m so grateful I got through it.I’m getting better every day.

The team at the Freeman hospital were excellent at looking after me.

While you are waiting go for gentle walks as much as your symptoms allow,drink plenty water and eat your vegetables,It just helps to get through the bits after the operation.

I find the Face book aortic valve group very supportive.Hope everything goes well.

[Emzyfred1419]

Morning my friend, I am 12 weeks post surgery for a triscupid valve repair, due to endocarditis. I was lucky that I did not have to have a new valve, but if I needed it my surgeon preferred a biological valve to mechanical one. I was very tired for about a month after surgery because sleeping is a challenge , get yourself a high backed chair to sit in. Let your body tell you what you can do. I have a good woman that looked after me when I came home and it was invaluable, you will need good support. I now feel brilliant and will be making a phased return to work in November. Good luck.

[Malcvtr]

Don't worry. Easy for me to say, but I am 68 and was in exactly the same position as you in 2021. I had the operation done and although recovery took longer than I expected, I am doing very well. In fact, I feel normal! Your fears are almost certainly worse than the reality I experienced, so relax and be confident in the excellent professionals who will look after you very well. My very best wishes to you.

[Classof1988]

PBbluenose, good to hear that you have no symptoms for your leaking aortic valve. Your heart is a muscle which is basically mechanical although it responds to electrical impulses which tell it when to beat. It is quite possible to live a normal life with a leaking valve. I had rheumatic fever as a teenager (just) which left me with a damaged and leaking aortic valve, but it was 19 years before my valve was replaced. The key is not to operate too soon but not to wait until the heart starts to fail. It sounds like your heart is compensating well for the regurgitation of blood and if you are in otherwise good health this will make post op recovery swifter. I only knew about my leak because of annual check ups, life was normal.

Anyway, regarding what happens, and bearing in mind my experience was 35 years ago, firstly you will need a day for measuring your heart valve to ensure the replacement is the right size. This involves a day in hospital, with a cut in your arm for a measuring tube to be inserted via your arteries to the valve, this is done under local anesthesia and all I felt was a mild scratching, plus annoyance 😅 that I had my back to the monitor so couldn't see inside myself. The arm quickly healed.

For the op itself, all I can say is that it was virtually painless, you will be under general anaesthestic. You will feel a bit rough when you wake up due to the anaesthetic but I found once I got through that phase I felt full of energy! Pain relief was excellent. I spent 10 days in the now closed London Chest Hospital, with subtle bed moves close the conservatory part of the ward (I wasn't discharged straight from the conservatory on the first floor though!😂). The key after that is to try not to do too much but I was back at work in three months, drove myself from London to South Wales and back after ten weeks for a mini break and went on an excellent residential cardiac rehab course where I found out I could go back into a swimming pool and where each day we went for a slightly longer walk in Victoria Park which ended up being a four mile walk..

[Yumz199725]

Just wanted to look it up sorry for asking all the questions, just was bit confused x

Severe aortic regurgitation.

[Pbbluenose in reply to Yumz199725]

I'm also confused, a lot of what is said by the consultant goes over my head.Perhaps some of it may be down to not accepting the problem I have and not wanting to know.

The letter I had from the consultant was not clear to me.

Actually seeing the surgeon at Nottingham City hospital on Tuesday he explained about the regurgitation and that my heart was slightly larger than it should be. He also mentioned that I may need a pacemaker. A lot to take in, although you try and stay positive.

I must admit that I am somewhat comforted by the folks that have shared their experience with this procedure.

It certainly has allowed me to understand more and not to be scared or afraid, bit to be positive in the outcome.

I'm sure something you will also be comforted by.

Take care 🙂 xx

[Yumz199725 in reply to Pbbluenose]

I understand why you would be confused but now that I know you have an enlarged heart and needing a pace maker makes sense x hope appointment with surgeon goes well 😉xx

[Survivor1952 in reply to Pbbluenose]

My heart was twice its normal size pre-op, now all back to normal thanks to the OHS. Just don't expect recovery to be instantaneous, it takes time and effort. The most difficult part is mental, you MUST remain positive all the time, the procedure gives you a second chance at life, grab it with both hands ...

[niffum32]

Hi I know it is easy to say but try and not be scared I had a mitral valve replacement coming up for 25 years ago I had Angiogram which burst a blood vessel and was admitted as an emergency I didn't have to wait for that one like you are having to do but when I was opened up they saw that I had a deformed Aortic valve which they put down to me having pneumonia as a baby this was monitored up until 2015 when my Cardiologist suggested I had it replaced as I wasn't getting any younger and to have it done then so I would probably cope better so I had a Aortic Valve replacement. I am able to work full time do have off days take loads of meds but is a small price to pay to keep living, wishing you all the best and hope it will not be very long before you are able to have the op

[it-whiz]

Hello Bluenose

I can't add much more than everyone else has said, to reassure you.

But I did want to share some of my many experiences, which will hopefully dispel even further the fear you are understandably feeling right now.

Having had my mitral valve repaired in 2016, as a result of contracting endocarditis, I then had it replaced with a mechanical valve in 2019, both through open heart surgery.

Before the first I was very fearful of one of the pre-surgery checks (TOE), which in the big scheme of things, is quite minor and nothing to worry about. 😊

By the time I came to my second OHS I wouldn't quite say I was looking forward to it, but I definitely had no anxiety at all, even to the extent that I had complete faith in my surgeon,the same who performed my first. He was also part of the Transplant Team at Papworth and had performed a transplant until 2am on the day of my surgery. I was the first on his list so was taken down to the operating theatre for 8am, but no surgeon, so me and all the wonderful staff involved in such a procedure, sat there making small talk until he arrived. He apologised profusely for keeping us all waiting and with that everyone clicked into gear and my surgery began, led by someone that at most had had only 4-5 hours sleep! And I'm still here to tell the tale! 😊😊

Don't be afraid to ask whatever questions you may have, however silly you might think they are, as they aren't at all! I wish I had known of this forum before my surgeries, so do make use of us that have been there before

All the best for yours

Mark

[Regeton]

Hi

My husband had the same diagnosis as you last year and had surgery to replace the valve in April. It was a scary time but he had very good care and as i write this we are enjoying a holiday and he is doing really well. It took about 3 months to recover but it is definitely worth it.

Good luck with your op.

[Football-Mum]

Hi Pbbluenose

So much good advice here but couple of things I wanted to add that I thought may be helpful. I'm 7 months post OHS for AVR due to congenital heart problem AS and AR.

If you do have someone you can take with you to an appointment this is really helpful as its so much to take in yourself especially with the added emotion. Coincidentally my sister has a baby who was born with a heart problem that needed OHS at 6 months old. Different problem to mine but she always asks me to go with her to appointments to ask the questions and take in the answers. (He's now 18 months old and made a full recovery btw).

I also understand the denial. I was diagnosed 16 years before needing surgery but even then when I got the call it took me a while to come to terms with it. I couldn't tell anyone not even my husband for 24 hours while I processed it! Of course its scary - that's totally normal. But the success rates for the surgery are extremely high (as this group should evidence!). Take each hour at a time initially, then each day. Give yourself the time to heal. I naively thought I'd be running marathons after 12 weeks but recovery is a steady process so give yourself the credit.

If there is anything specific you want to ask about the surgery dm me and I'll be happy to help. Wishing you all the best 😀

[Pbbluenose in reply to Football-Mum]

Thank you.

[Chriscwmpen]

Hi Pbbluenose.

Just sending my best wishes to you at what I know is a very worrying time. I had OHS to repair a mitral valve in Nov 2020. I was blissfully unaware I had any kind of heart problem until it was picked up during a routine GP appointment for a chest infection. As you've said, it is a strange feeling going for a major operation when you have no significant symptoms.

The waiting is the worst part; as soon as I'd had the surgery I felt much better despite the physical recovery ahead.

It won't feel like it now, but you, me and others on this forum are the lucky ones who've had a problem picked up before it's too late.

Keep us posted how things are going - you'll find lots of support on here.

[Pbbluenose in reply to Chriscwmpen]

Thank you for your kind words.