hi all

[mewg]

hi all im paul and last december i found out that i was born a heart condition biscupid valve and i would need surgery within 12 months 2 repair it i never took it all in really as it was out of the blue but nearly a year on and after loads of tests i seen the surgeon yesterday and im on the waiting list now 4 a aortic valve replacement the mechanical 1 as im only 40 this is recomended 4 me im still in shock and dont know wot 2 expect i have 2 children 1 of 3 yrs and 1 of 21 months with down sydrome and my partner is suffering with post natel depression so im worried how she will cope so i was just wondering wot i can expect after my operation thanks.

[Dazzler142]

Welcome mewg,

Aww Bless you..very young like me i am 45.

I have just had a mechanical mitral valve replacement 7 weeks ago.

So its open heart surgery as i am sure was explained to you..so your sternum will take about 3 months to heal properly and you will have to be very careful for the first 6 weeks after surgery because of the sternum healing,no heavy lifting,driving,things you do on a normal day are very hard work.the sternum does hurt and mine does now 7 weeks later but you can get good pain relief..you do feel rather weak but i think youth is going to be on your side here,it has so far with me and i have recovered well luckily.i must say i have never looked back,you are well cared for in hospital.

There are plenty of lovely people on here who have had this op and sure they will be here to help you more

Take Care,good luck and any questions please ask

Jenny

[mewg in reply to Dazzler142]

hi jenny hope you are recovering well its scary but im sure ill be fine its nice 2c other peoples stories 2 show ur not alone that why i joined this group as my partner and friends listen but dont know how stressfull it is.quick question is the valve noisy as i heard it is x

[Dazzler142 in reply to mewg]

Hi Mewg,

This is a brilliant forum,so many lovely,caring and helpful people here.

Yes the valve is noisy,its clicks loudly and still am not sleeping well but i was told 4 months and your mind starts to switch off from it

Its better than having open heart surgery again as the tissue valve would not last

Hope you are okay

Jenny x

[mewg in reply to Dazzler142]

im really funny about little noises so aint looking 4ward 2 the clicking but if it gives me a better life with my family ill put up with it.wot symptoms were you haveing 2 make you aware of heart problem x

[KazSumm]

Hi Paul I had AVR 12wks ago

Some days I still can’t believe it happen, it came totally out of the blue, I had no idea a birth defect. Having a young family to care for, it must be worrisome, my advise get as much help organised in advance for while you are in hospital and your return home.

The operation it self is not as scary as you imagine,I was up and walking the next day, pain wise I wasn’t really in any, but I always took the painkillers when I was in hospital.

I was home after 5 day. This is when you will need the help, especially the first 10days as you will be restricted from lifting( for 6 to 8 wks)you will feel tired and need to rest on and off through the day, I wasn’t in pain just restless and slightly uncomfortable , I found it hard to sleep at night and my GP gave me sleeping tablets which really made a big difference to my recovery and I only used them for 2wks. I slept in the spare room for 4wks, my best friend was a V pillow and my husband got me a body pillow. I was given a posthorax vest which I wore for 8wks this kept my sternum protected , not every hospital use them, but if you are given one use it. If you follow the guidance your given for recovery you will heal really quick, and being so young probably even quicker ( I’m 57 and healed quick)

I found the worst thing was the depression, you may be lucky and not suffer but please be prepared there is no point pretending this can’t happen, if you explain to your family and friends this is what’s happening it just makes it easy for everyone , let them read the advise booklets your given. Every week you will feel better, listen to your body and don’t push yourself it’s not worth it. If you can arrange family to help your wife with the children and day to day running of your house this will take take away any stress for you and your wife.

Speak to your GP mine helped my husband understand what was happening also The cardiac rehab team at your hospital are there to help with any issues you may have, mine asked if I would need any help when I returned home.I start cardio rehab on the 1st Nov for 8wks looking forward to that, you are given loads of advise as well as getting back to being fit. I go back to work on the 7th Nov. You are young, you will recover quicker, if you need help ask for it , it’s hard to ask for some people, but I’ve learnt it doesn’t make you weak, people want to help just let them, what’s important is your recovery and getting back to normal every day life. Your future is looking oh so bright, you will be able to run and play with your kids and live a long and fulfilling life. If you want to moan or have concerns share them on here there’s lots of support. Sorry for waffling on take care . Kaz

[mewg in reply to KazSumm]

thanks thats very reassureing about alot of things its the after process i worry about as 2 very small kids and im a hands on father and my daughter with down sydrome will only sleep 4 me she gives my partner hell lol.im not that worroed about the fixing my heart its the chest beeing popped open i dont like the idea of that.goodluck with ur recovery look 4ward 2 seeing how its goes thanks paul x

[KazSumm in reply to mewg]

Lol I didn’t like the idea of being popped open either, but I was very surprised how calm I was on the day, the pre meds’ are wonderful, I laughed and joked as they wheeled me down. My op took 7 hours I had an angioplasty done as well, when I woke the next morning I felt great, like I’d had the best sleep ever. Apart from the scar, the only time you realise you’ve been popped open is when you sneeze 🤧 boy it hurts lol 😂. Before you go into hospital why don’t you video yourself reading a bedtime story to your little girl, then she can not only hear you but see you, and if you give her a sweatshirt or jumper that you’ve worn, she’ll have your sent as well, it may bring her comfort, just a thought.

Keeps us updated, sending you the very best of wishes Kaz

[mewg in reply to KazSumm]

wish it was as easy as that with my daughter we have tried everything 2 get her 2 sleep but she just as so much energy and has sleep apnea so thats a worry everynight when she is asleep as i wake at any movement but dont really sleep much anyway.its bad sneezing when u have broken ribs lol so not looking 4ward 2 that im a very crazy man anyway always laughing and joking so ill be fine just want it done now so i can start again.

[Kazcoles64]

Hi Paul , I was also diagnosed with a bicuspid valve that I was born with which came as a great shock to me. As its hereditary my siblings and 4 children need a heart scan. Although iv complained for years of chest pain and breathlessness it's only past 2 years a doctor took me seriously. My valve is now not repairable so needs to be replaced. This has affected me greatly but being on this site really has helped me put things into perspective. I do not have a date for my op yet so anxiety is high. When I feel concerned about anything I ask on here and someone always makes me feel better. So use us on here whenever u need to. Good luck with everything and keep your chin up.

Best wishes

Caroline x

[mewg in reply to Kazcoles64]

thanks hun it is a scary 1 knowing ur heart is not working properly im so tired all the time and get out of breath walking up hills and stairs and like urself streesed 2 the max which im takeing amptriptyline but they help me sleep but im ratty then in the mornings i hope they can get you in soon as ur kids need their mother x

[Fredders]

Hi Paul, I've already been through the AVR op once six years ago but am having to have the tissue one replaced as it now has severe regurgitation, this time I'm having a mechanical one as I have the added complication of having my spleen removed last year. Hopefully having the op next week, but I've already had it cancelled twice on the day of admission so third time lucky.

I'm lucky cos I don't remember anything about the actual op. I don't remember going down to the theatre, vaguely remember being in ICU and my husband being there and next I was back on the ward! They had me out of bed and walking about that day and I was allowed home after 6 days.

Best advice is to make sure you take the painkillers, they really do help and allow you to move around without too much pain. I started weaning myself off the stronger ones after a few weeks. Keep a cushion to hand incase of coughing or sneezing, you hug it to your chest and does lessen the jolt.

You will probably find it hard getting comfortable at night to start with but like Kaz suggested, a v shaped pillow or even a rolled up duvet behind you will help.

Have you got any relatives or friends that could help you and your wife for a while. Some people don't like to offer incase it is taken the wrong way, but it can't hurt to ask.

As already posted by the others, do ask as many questions as you need, many of us have been through open heart surgery and I'm sure between us we can answer any questions you have about the op and recovery.

Wendy

[mewg in reply to Fredders]

thanks wendy hooefully you wont remember it second time around aswell hope it all goes ok.they showed me how servere the leak is and now i dont know my limits 2 wot i can do with the kids and stuff as worried of haveing a heart atack as there oroblems in the family.as far as help is concerned we dont really have any1 who can help as family do t live close so will have 2 just crack on and use you guys 4 advice lol.

[Fredders in reply to mewg]

Mine is classified as severe regurgitation but haven't given me any advice about what I can and can't do. My only symptom is getting out of breath easily, but I'm a bit of a couch potato and don't do anything too energetic. The most exercise I get is walking to and from the car park to work! If you're really worried, give your cardiologist a ring, they should be able to advise you.

Have they given you any idea on the likely wait for the op? First time round that was what I found stressful, the waiting for a date. Add to that the fear of the unknown, and it's hardly surprising we get so anxious!

Try to think positively and use us as your support network.

Wendy

[Mary_Janet]

Hi Paul,

Sounds like you have your hands very full. I only discovered I had a bicuspid valve when I became ill with endocarditis. I had my aortic valve replaced at the end of May. My recovery has been much longer than normal because of the endocarditis and subsequent lengthy treatment.

Building on the excellent advice already given and I won't repeat I would add that you need to set up as much help as possible. I think it would be worth speaking to both your GP and health visitor requesting a package of care. It is always thought that home helps/carers are for the elderly but that is not the case. You need help for not only yourself but for the whole family unit. And you need to accept the help which is hard . As well as requesting help for the initial period - I was told not lift anything heavier than a mug of tea for twelve weeks . Really hard in your situation.

You will be referred for cardiac rehab , my course of education and exercise was 9weeks in length and I found really very helpful. Especially meeting other people who had had a variety of cardiac events. The cardiac rehab team maybe able to help getting you some help and support.

I do hope that you are able to get some good support in place as will make you feel a wee bit better about going into hospital.

Best wishes to you and your wife.

Mary

[mewg in reply to Mary_Janet]

thankyou mary i will speak 2 my doctor about it as i dont think i can leave picking my kids up i know i have 2 but its really going 2be hard i dont sleep much now threw worrying over it all.i cant talk 2 my partner about it as her post natel depression she will loose her temper with me she thinks it will be ok and ill be uo and running very quick as im a fighter.but im a big softy inside and im scared 2 death.i really hope you carryon recovering well and thanks 4 ur advice i will def take any help i can get when ive had tbe operation xx

[Mary_Janet]

It will be so difficult not being able to hold your wee ones. When my niece visited with her six month old she popped him on my lap for a cuddle and her older one sat beside me for a cuddle. Not the same I know. Immediately after surgery you will not have the strength to lift your babes and be anxious of them causing you pain. My kids are teenagers so they are well passed that stage and have been remarkably helpful.

I am sure you are apprehensive and if you were not I would be very concerned for you. As we are all aware heart conditions and heart surgery by there very nature are serious and terrifying. Luckily we are having treatment in a first world country in the twenty first century. It is alright to both be scare and admit to being scared. If your wife , due to her own health needs is unable to hear and understand your concerns find somelse to talk to, professionals, family, friends or this forum here. Look after yourself.

Mary