So frightened for upcoming mitral val... - British Heart Fou...

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So frightened for upcoming mitral valve replacement at 45 after being diagnosed severe mitral stenosis.

Dazzler142 profile image
23 Replies

So sorry as i have posted on here before.i am 17 days off having a mechanical mitral valve replacement and could almost talk myself out of it,was meant to have it done in july but had it postponed due a sinus infection.i am not so scared of the op,it's life after it that scares me after reading on line about it,sounds like its quite common with complications etc? whats life like on warfarin? I am 45 and have a beautiful 15year old daughter.i have had no support from any proffesional as all tests were done feb-april and met the surgeon in may for the 1st time who told me nothing positive or i just don't remember them.can anyone help me come to terms with this please? I am positive most of the time,night times are the worst as i start to think.i also have bronchiectasis which is scaring me also

Many thanks.

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23 Replies
skid112 profile image
skid112Heart Star

Morning, being scared is normal. The wait doesn't help, you think the worst. Good news you're in good hands, better news they know what they are doing.

Post op it's your turn, you have things to live for, young daughter, family, friends and yourself. No it's not easy there are things you'll struggle to do, but it's worth it. There are an awful lot of people willing you on, you'll have good and bad days but you'll be alive and on your way back.

Post op you'll be invited to rehab, go, it's good for you. Set your self targets, aims, learn to listen to your body and your mind, if your tired guess what, rest. You'll need time to recover, you'll likely to suffer post op with feeling down, again this will pass but talk to people, be honest, most people will listen and help, on here too, some lovely people, great posters who have been through it and can talk about it.

Come back tell us how you feel, pre and post op, we want to know and you need to share.

Dazzler142 profile image
Dazzler142 in reply to skid112

Thank you for you reply skid,i normally feel mentally strong and positive but i am not i am scared.this is truly good advice and the lack of talking with anyone is making the fear worse so this has really helped reading this.thank you very much

Jenny

skid112 profile image
skid112Heart Star in reply to Dazzler142

Any time, I'm usually around if you want to rant or share, plus a number of other posters as well

Fredders profile image
Fredders

Hi Jenny. I am waiting for my op to replace my aortic valve. This is my second one, as I had a tissue valve the first time after being told it should last about 15 years - it has lasted 6, so this time I'm having a mechanical one which will mean taking warfarin. Having already gone through the op I know what to expect. Day 1 you will feel like death warmed up but after that it gets better very quickly. The best advice I can give is to listen to your body and definitely take the painkillers, this isn't the time for heroics. You will probably have good and bad days, I did, but things do get easier and easier. Accept any offers of help in the early days but don't get into the habit of sitting doing nothing, it won't help in the long run and will actually delay your recovery. Hope this helps and that your op and recovery goes well.

Dazzler142 profile image
Dazzler142

Hi there,

Thank you so much for this message,it's so good to hear from people and really do appreciate it very much.

I just have no one to talk to about what to expect and my family so anxious i tend to be brave for them

I am worried that as what to expect after as no one tells you that bit.

I was starting to think i should have asked for a tissue valve but i know the mechanical will be better for my age.

Like you say go with your body and try and keep walking rather than laying.

Good luck also,i wish you well and a speedy recovery

Jenny

kefalonia1 profile image
kefalonia1

Hi l have a mechanical heart valve it was fitted 5 months ago so will have to be on warfarin forever. You hear horror stories about bleeding to death if you cut your finger, this is rubbish the only side effect is bruising which happens with even a tiny knock but its not life threatening. lt is normal to feel anxiety pre-op, it will soon be over and you will feel better that you are all mended. The only complication l have experienced is depression but reading up it seems that is common, l have grea t mates who l moan to and they understand but l am going to get some meds to lift me up for a few months. Take care.

Dazzler142 profile image
Dazzler142 in reply to kefalonia1

Thank you very much for your reply.

I can imagine by what people say on here you hit so many low points it gets you down..its a big op and the recovery and pain i am not looking forward,

I hope you get some meds soon.

Take care of yourself

Jenny

Fredders profile image
Fredders

I think anyone having this sort of operation is scared, it's fear of the unknown. Some will sail through the recovery period and others will struggle, we're all different. When I had my first AVR I joined the old BHF forum and found it great for getting help and support, so use us! 😺 Sometimes just talking to someone who's been there can help. Take care and keep in touch.

Dazzler142 profile image
Dazzler142 in reply to Fredders

I really agree the fear of the unknown is the hardest to come to terms with.i am generally inquisitive so sitting in silence and the lack of people to talk to has been very hard for me and google has had me in tears scaring myself.

Am very grateful for all the great advice,help and possitivevness this site brings.

Many thanks

Jenny

Hi Jenny! Signed back in to say hi and see how you're doing. The waiting game is hard and creates all this anxiety you're experiencing. As a few others have said, first couple of days are the hardest but nothing but improvement after that. Yes you might have a couple of hiccups and setbacks early on but you will feel better, stronger and healthier compared to how you feel now. Hang in there, don't hesitate to ask as many questions as you like!

Dazzler142 profile image
Dazzler142 in reply to

Hi Jim

Thank you once again 😊

Yes very anxious as only 14 days now to go 14th August

I think if i expect some complications it wont be so hard to deal with mentally if they do post op.

How are you doing?

in reply to Dazzler142

Hi Jenny

Can I say the anticipation of the op is worse than the op itself.

I caught up with my cardiologist 2 weeks ago and everything working well. Apart from the occasional twinge near my incision which according to my dr is normal, everything feels great.

It's been 14 months since operation and I can say I feel almost back to normal. Those really difficult days are a distant memory, you are at the start of your journey but in 12 months time you will be a different person.

Not sure if you've come across these 2 websites, found them helpful myself:

heart-valve-surgery.com

and

inspire.com/

Jim

Dazzler142 profile image
Dazzler142 in reply to

Aww thats great jim you are doing so well.so good to hear positve news.😊

Oh i cannot wait to get this done as i am a nervous wreck and having up and down days.i was convincing myself i am not that ill as i can still do alot just not as good as a few years ago,i perhaps have done too much reading online and really frightened myself.

Everyone here is a true inspiration and i will be sharing my experience once able to

14 days to go.

Thanks Jim and i will look these sights up.

Best wishes

Jenny

in reply to Dazzler142

Hi Jenny. Hope operation went well and you're feeling ok. Remember first few days are the hardest and then things get remarkably better. 😬

Dazzler142 profile image
Dazzler142 in reply to

Hi jim

Sorry havn't replied sooner..

My op was postponed for 2nd time 😯 my blood was showing multiple antibodies and needed further screening so have been back to my hospital 3 times since for bloods so it can be screened properly..had my pre op again today..they assure me all ok and surgery is going ahead 30th August now..was intially 1st booked 17th july

Still scared,these waits are making me worse

6 days and counting now..will post when i am able to next week hopefully

Will be ticking well with my new mechanical mitral valve

Hope you are doing well?

Jenny 😊

in reply to Dazzler142

Hi Jenny

I am sorry to hear that your operation was postponed once again. It is however reassuring to know that your Drs are on top of things and aren't taking any risks and only operating once everything is 100%.

Good luck, try not to worry, in a weeks time you'll be all sorted and your heart will be ticking like a brand new Swiss watch!

Jim

Twobells profile image
Twobells

When I first had my bypass and came home it was very traumatic. I was so down first few weeks. Like you I have family so I kept my feelings to myself. I am now 4 months post op and doing really well I still have the odd moment, but now feel so well physically. So it will be a very anxious time stressful, but you will be OK.

Dazzler142 profile image
Dazzler142

Thank you for your time to reply,

I appreciate it.

I am glad you are feeling better,thats great news

Yes i will look forward to that too as tge fatigue is just awful.

Heart racing and dizzy spells are tiring.

Keep up the great recovery

Jenny

Nettyanne profile image
Nettyanne

Hi Jenny

I have just got your post, sorry to hear you are struggling with the fear,I know just what you are going through. When I had my 1st mitral valve repair I was so poorly that I had no choice,it had to be done . But now that I need a valve replacement I am trying to convince myself I am not so bad and that I can wait.

Sometimes I think the Internet can give us too much information which is worrying, could you go and talk to your GP about your fears at least they can tell you about warfarin side effects.

I suppose it depends on how you feel now and how much better the surgeon has said you will be after surgery, only you can make that decision but if you want to talk at any time I am here.

Take care.

Dazzler142 profile image
Dazzler142 in reply to Nettyanne

Thank you for replying,

I have my pre op assessment on monday, i have spoken to a rehab nurse as my surgery was postponed in July and she said that i should feel reassured at pre op so am hoping that is the case.

I dont think i am that ill really but i am telling myself because i wanting to believe it.

The surgeon would not replace it unless necessary i have to tell myself.

Thank you x

Hi Jenny, just a wee post to say hope all goes well for you on 14th August. I will keep you in my thoughts and prayers.💜

Dazzler142 profile image
Dazzler142 in reply to

Aww thank you so very much.i really appreciate it 😊 x

Shopgirl profile image
Shopgirl

Hi Dazzler, I'm having the same done in 24 days time! Just think you'll have been through the op and be home recovering as I go in! I do get moments of panic and like you I've had a long wait since been told, not due to cancellations but lengthy waiting lists for an angiogram and TOE. I'm enjoying every day up to the op best I can and keeping away from people who say daft things that don't help. Im also trying to walk every day as that should help recovery. I'm relatively young too at 50.

I'll be very nervous when I'm waiting in hospital the night/morning before.

You can do this and just think how much better you will feel in a few weeks/months time. Keep positive and looking forward. X

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