Severe mitral stenosis

[Dazzler142]

Hi,

Can anyone tell me if they have had a mitral valve replacement?

I am 45 and having one in a few weeks and very scared as have found no support.

[Hidden]

Hi there - sorry you feel like you haven't had any support leading up to your surgery. It can be a pretty stressful time for a lot of people, so hopefully you get a few responses from our members on here. In the meantime, you might find it helpful to have a read through our information on valve disease and heart surgery, and you can also download our booklets or order hard copies for free bhf.org.uk/heart-health/tre...

Take care, Chris

[Dazzler142 in reply to Hidden]

Thank you.

Yes i have read this before and very helpful.

[FMW62]

Hi, My husband had a mitral valve replacement almost exactly a year ago. Today he was complaining that he finds 2 consecutive days of physical labour a bit tiring. He is 65! I had a similar operation a year earlier. I advise reading up as much as you can cope with, so you understand what will be happening, but stop whenever you begin to feel scared.

[Dazzler142]

Thank you very much.you are the first person who has made contact with me who knows anything

I have my date now 17th July.

Can i ask, does it improve the symptoms? I am so scared as have read all the negatives online.

Thank you

[FMW62 in reply to Dazzler142]

Yes symptoms do get hugely better. My husband was back to doing physical work pretty quickly after mitral valve replacement, though obviously slowly at first. Now his complaints are that he is not as fit as he was when much younger! I had a similar operation, but have been slower to recover after a rare allergy to a drug I had after the op, but my heart symptoms have just about disappeared. When I have to stop when going up a hill, it is the result of not being fit, rather than my heart demanding I stop, which it has done ever since childhood - 50years ago or more!

Good luck on July 17th.

[Dazzler142 in reply to FMW62]

Thank you so much

[Madgranny2]

I'm having an Aortic valve and artery replacement soon. I do hope your op goes well and your health is improved.

Frightening times for us all due to have heart surgery

[linchisms in reply to Madgranny2]

How did your operation go ? A friend of mine is due to undergo aortic replacement valve surgery due to severe aortic stenosis.

Malcolm

[Madgranny2 in reply to linchisms]

My op was 1st August and went very well and I was recovering better than expected. Unfortunately I then developed an extended DVT and the complications from that are ongoing. Your friend will be fine, I'm sure it's rare for this to happen

[Dazzler142]

Aww and the same to you also.

Its the unknown isn't it.

Wishing you all the best

[Hidden]

Hello mate. Had my mitral valve repair done just over 12 months ago. (1st June '16) must admit was a challenging journey but it does get better. Happy to give your more information and will do so but am in the way out. You will be ok, I promise!

[Dazzler142 in reply to Hidden]

Thank you

I am really scared to have this done,too much reading online and not had anyone to talk to anyone who has had it done.

Can i ask how long did it take before you started feeling better? Also i know about warfarin but is there alot of meds to take?

[Hidden in reply to Dazzler142]

I was scared too. I had severe mitral valve regurgitation and being a typical male, I ignored the symptoms for years. It's only that I visited my new GP after moving to a new apartment in Sydney that the issue was discovered. I was sent to a cardiologist by my GP who once placing his stethoscope against my chest, told me I had a serious problem and needed heart surgery. After performing an ultrasound he confirmed that the chordea attached to my mitral valve had snapped, causing this severe regurgitation. As this had been going on for a number of years, my heart had grown to compensate which created a number of other issues.

I can remember being wheeled into theatre, given some medication, then waking up in ICU a few days later with a bunch of tubes and heart probes attached to me. I must say I felt a lot better than I expected upon awakening, not in much pain at all, mind you I was drugged up with pain killers. First day in ICU I was still dazed from all the drugs and falling in and out of sleep. The 2nd day was much harder, pain was still ok but I was much more aware of everything around me, including all the noises that are associated with being in a hospital.

Surprisingly there was minimal pain coming from my chest, considering what i had just been through, until I needed to cough. Boy oh boy, your first cough or sneeze will hit you like a truck. Make sure you have a pillow handy all the time that you can grab and hold against your chest when you need to cough or sneeze, trust me, will become your best friend for quite a while.

During my 2nd day in ICU, nurses assisted me to get up and out of bed, stand and walk on the spot for 5 steps and move half a metre to a chair and sit. The true reality of what I had just been through became obvious to me there and then. Those simple tasks were nearly impossible for me to do. My legs felt like jelly, the pain emanating from my chest was intense and I was huffing and puffing like I had run 10kms, this was my new reality. I was glad to eventually make my way back to bed.

Nights 2 and 3 in ICU were probably the hardest times in my entire journey. I had gained full consciousness and felt fatigued physically and emotionally. Sleep deprivation was a real problem, I struggled to sleep as too much was going on around me, hospitals are a busy place and all the beeps and other noises kept me awake. Be prepared for those first few nights, they are the hardest, again mainly due to sleep deprivation.

Once they moved me out of ICU and into my own room, things were much better, much quieter, felt like I was in a hotel room. Nurses were amazing, can't emphasise what an amazing job they do.

It's quite impressive how quickly things improve, nurses make you get out of bed each day and go for your walks up and down the hospital corridors, things appear normal again and you can see daily improvements.

After 9 days I got to go home which felt amazing. Not sure of your situation but I was single and lived on my own. Friends and family had offered for me to come and stay with them for a few weeks but stupidly I said no and thought I could do it on my own, probably not one of my best decisions. At hospital you are taken care by the nurses and everything is done for and you think that you are ok and back to normal, at home you are suddenly on your own and performing those simple tasks which are just physical very taxing. Getting in and out of bed was a painful and difficult task. Luckily prior to the operation I bought numerous pillows and body pillows which I had stacked on my bed, they kept me propped up in bed which really helped.

Medication wise, I was initially taking quite a bit, including warfarin, amiodarone, colchicine and digoxin. I bought a pill box which helped as with everything going on, some days I could't remember if I had taken my pills. Now I am only on bisoprolol and aspirin.

When at home, take things real easy. That was my mistake, I wanted things to get back to normal and was pushing too hard which ended up becoming a serious problem. After being at home for 3 days, I woke up in the middle of the night struggling to breath and stay conscious. Something was wrong so I ended up calling an ambulance. I was rushed to emergency and diagnosed with a Cardiac Tamponade. I had bleeding around my heart which was filling the pericardial sac surrounding my heart and in turn crushing my heart. Drs rushed me to theatre and pretty much grabbed a long massive needle which they shoved through my chest wall, pierced the pericardial sac, (needed 2 attempts) which released the blood thereby relieving the crushing pressure on my heart. I was awake throughout all this, the most surreal and painful experience I have ever had. That little trip kept me hospitalised for 10 days. The moral of the story, take things slowly and don't push too hard after the operation.

"Time heals all" is so true. Yes it is a difficult and long journey. You have had your chest and heart cut open. That takes time to recover from. After the operation, you get constant pain in your chest, which is really scary. Your heart rate and breathing is all over the place and out of whack. At times you think something serious is going on. Apart from the tamponade, I did take myself to emergency a number of times as my heart was racing and I was experiencing pain, each time the dr's reassured me that all was ok. It does just take time but things do get better and your confidence grows and you better understand your body.

I was able to take 12 weeks off work, returning was good but also exhausting. You have good and bad days, certain medications can throw you around a bit and have some annoying side effects. Having a good GP was very helpful for me as I would see her on a regular basis and talk about my concerns, she was very reassuring.

Can't emphasise the importance of not pushing too hard and knowing that this journey requires patience and with time, things will get better. It has been just over 1 year for and I am still not 100% but things are good. It did take about 10 months before I felt "normal" again.

Sorry I have rambled on and am not sure if I have answered your questions. Don't be worried or scared by my Cardiac Tamponade, 1 in 500 000 chances, I am just "special"! Please fill free to send me specific questions that you may have. Good luck with it all, stay in touch and let me know how you go.

[Dazzler142 in reply to Hidden]

Thank you ever so much.

I sincerely appreciate you taking your time telling me this..a real person who can tell me what to expect as after my surgeon here in the UK it went all very quiet after months in and out hospital previous as the echos were not correct at all.its severe mitral stenosis i have and getting a mechanical valve which will mean i take warfarin long term.

I have a 15 year old daughter at home so she will help me.

I think everyone around me thinks i will be better straight away.you have confirmed what i thought that it takes months to recover.

So its worth all the risks? I have been close to saying no to the op,purely due to lack of info..so i can't thank you enough.

I have also read that your eyes can be affected after surgery? Taste too?

It's a harsh op,my valve is almost closed apparantly.

I just get so out of breath,dizzy and my pulse races to 130bpm walking up my srairs..i feel like an old woman and not 45.

Many thanks,

I will think of more questions if you don't mind

Kind Regards,

Jenny

[Hidden in reply to Dazzler142]

Hi Jenny

My Apologies for calling you mate earlier, made the assumption you were male, sorry.

Like you, my heart rate was racing over 120 beats per minute doing simple things and I was always out of breath.

In this day and age, operation is straight forward, based on what you have said, you do need to get it done.

Initially things do taste funny and eyes also play up. I was getting many "shooting stars" or flashes as I described them to my dr, but that has all gone away.

Walking from my bedroom to the bathroom initially was exhausting so having your daughter around will definitely help, you will be pretty useless first few weeks just doing the simple stuff.

People around you worry and want to see you ok so they will say things like "you'll be ok back to normal in a few weeks". That comes from love and concern and them wanting to see you better. It is a journey and give yourself 12 months before you feel "normal".

You're welcome to send me a list of questions as you think of them.

Jim

[Dazzler142 in reply to Hidden]

Thanks Jim

Really do appreciate your time and sharing your experience here,seems so hard to find anyone who has or about to go through this..it is helping me coming to terms with it all.i had a bit of an 'eureka' moment after walking 50M and realising i could barely breathe and my heart racing at 140bpm..it made me realise this does need doing ..i never asked if you had a mechanical or tissue valve..i am having a mechanical valve and hear they are noisy?

[Hidden in reply to Dazzler142]

As scary as it may seem, you will feel a lot better once the operation is done. WRT my Valve, the chords that controlled the opening and closing of my Valve had snapped which opened up the diameter of the Valve and prevented the valve from working. A ring was placed around the Valve to close up the opening and the chords were reattached, luckily the valve was repaired and didn't need replacing. I was told that if it needed to be replaced, a mechanical valve would have gone in as being 49, the mechanical valve would outlast a tissue valve. The surgeon did explain that mechanical valves can be "noisy", at times it's like hearing your hand watch ticking.

[Dazzler142 in reply to Hidden]

Thank you Jim

You take care

[Hidden in reply to Dazzler142]

You're welcome Jenny, good luck with operation on the 17th, "Short term pain for long term gain!"

Is worth it, you will amazed at how well you feel once your valve is working properly. Don't hesitate to throw any more questions across, let us know how it all goes!

[Dazzler142 in reply to Hidden]

Hi Jim

My op is postponed i have an infection so 2 weeks antibiotics and then my surgeon is on holiday.14th August is the new date.not great news when you are mentally prepared

[Hidden in reply to Dazzler142]

Hi Jenny

Sorry to hear that, at least it gives you time to fully recover from the infection. I know waiting around for the op day to come can be frustrating but use it to rest as best as you can. Take the opportunity to also prep your place for when you return from hospital. I think I mentioned I bought quite a few pillows to prop myself up in bed. Getting up from lying flat in bed was way too hard the first few weeks so I slept propped up with a bunch of pillows.

Lifting anything heavy or above your head is a big no so maybe you can rearrange things around the house or kitchen for easy access. I also moved a plastic outdoor chair into the shower so I could sit while showering as I suffered far too many dizzy spells trying to stand while showering.

Take things easy, stay positive, the operation is a good thing and it will improve your quality of life. Will all be good.

[FMW62]

In hospital in Aberdeen, I only had 1 day in Intensive Care I only remember intense pain once in IC, when the nurses turned me over in bed or changed the sheet or something. Otherwise I was constantly reminded to press the button to give myself more morphine. Happy times! I then had 24 hours in the High Dependency Unit, then back to the 5 bed ward I had been in pre-op.

The thing that really upset me was that I couldn't work out how to get off the toilet - until I remembered that my mother had insisted one should never touch a toilet seat! Once I changed the habit of a life time, I was fine. Standing up from a chair without using your hands is one of the cardiac exercises we were given in rehab classes.

[Nicholas55]

Hi Jenny

I had my mitral valve changed last May following endocarditis. I can only echo everything that jimi2017 has said. It takes a lot of time before you start to feel right. I will admit I had a tough time in ICU and HDU and morphine did not agree with me - too many funny dreams and seeing things. And I must admit I was quite emotional on day 3. However, the nurses and physios were fantastic - they get you up and walking around. By the time I got back to the ward - i think about day 5/6 things were much better. I had a lot of sickness so could not eat until around then - but I had a good excuse to start with Rice Crispies! I had relatively little chest pain but had to contend with lots of antibiotics to finally clear the infection - so I was kept in for about 3-4 weeks after my op - this is not normal - most people left after about 5-6 days. The keys to being in hospital were - stay optimistic, do lots of exercise - just walking up and down the ward will do and ideally you have visitors to keep your spirits up - my wife visited me on 51 consecutive days!

After i was discharged I had to be readmitted because I had lots of fluid around my heart. This was drained off over a week and I must admit that was a painful process - they have to give you exactly the right painkillers. Once I was finally discharged I found that my chest mobility was limited. I had been given no physio instructions so my wife looked them up and found a good guide from I think the University of Newcastle. once I got into that routine my chest strength improved a great deal. I also did masses of walking - building up very slowly from just a hundred yards to over 10k steps a day. But it took months to get to this stage.

For me the key is to accept this is going to take a long time to recover - at least 3-4 months - and to take things very slowly - especially when it comes to lifting things. I've had one bout of an uneven heart rate which took my back in for 3-4 days while they tweaked my medication and I am left with a heart rate of around 50-56 which is fine. There is no comparison with my time when I had endocarditis - at its worst i could not walk more than 100 yards and now I can do 5-6 miles a day.

i hope this is helpful and all goes well with your operation.

[Dazzler142 in reply to Nicholas55]

Thank you so very much.this is extremely helpful.

It does sound like you had a rough time.i hope you are feeling better and thats amazing your heart rate.

Finding mine is getting worse and really struggling on walks.

I am very grateful for all the info,it's still scary but i think i now i can do this.