Heart Surgery

Hi Everyone. Am new here so please bear with me while I get used to the Site. Waiting to have Aortic Valves either changed or repaired, not sure yet until I see my Consultant soon. Undergoing Tests at the moment. Have come here looking for some support. Anyone else who has had similar Surgery your comments would be really appreciated. Don't mind telling you, I am absolutely petrified!! Many Thanks.

[Nic25]

Hey Greenlady13, and welcome to the forum. Lots of us on here have been through valve replacement so ask away if you have any questions as we're all keen to help! I had an AVR in December at age 50 (tissue valve Edwards Inspiris) and aneurysm repair after years of gradually worsening aortic stenosis. For me the emotional and mental build-up - the terror of it essentially - was probably worse than the actual operation itself. So don't beat yourself up about being petrified, it's quite normal!

Yes it is a big operation - open-heart surgery and all that - but it is these days a very standard and straightforward one (though I know saying that probably doesn't help) - for the surgeons heart valve replacement is really bread and butter stuff, even if for us it's a massive deal!

I was in and out of hospital in a week (and luckily had no complications whatsoever) and, for me, my heart function feels so much better (and I hadn't realised before how many symptoms I did have, just put them down to the fact of being a relatively sedentary 50-year-old). Got my big scar to show off now but that's about it... whatever happens I'm sure you'll be in good hands. But yes do use this forum as that's what we're all here for....

Nic x

[alheart]

Hi Greenlady13

My Heart Story (or How I came to this site)

Oct 2015 (age 57) Underwent a pre-emptive double by-pass and AVR replacement. Prior to this had three angiograms to monitor BP symptoms. The AVR is a titanium ON-X valve

A tissue valve was not an option as it would present a risk in creating difficulty in replacing it over time. Interfering with the double by-pass etc. to replace it.

Warfarin took a while to get settled readings but is now okay, the ON-X requires lower Warfarin reading than other valves.

The initial recovery took about 16 weeks (scientific measure for me was getting back to driving, walking and swimming pool time!)

Experienced the usual problems that come with major surgery – lack of any confidence, worry, guilt of putting the NHS through the tasks of helping me, pain and overwhelming relief and happiness that I was still alive.

The By-Pass part was harvested from my left arm (right handed) and in my experience, talking to others, a lot better than oleg harvesting! (Quicker recovery etc.)

Scars still there but nothing horrendous!

Mya advice - relax, you are in great hands and everything is being done in time!

This is a great site and the support from everyone is amazing. (I wish i knew about it BEFORE my op!)

Any fears or stress, anxiety then ask and talk about it,

best pre-op strategy is to accept that it has to happen and that you are in great hands.

To be relaxed and rested is the best help you can give to YOUR surgery team (yes they are part of you).

Here for you, so relax

[Roamie]

I was also terrified, but the waiting is the worst part. I hope that it all goes well for you, everyone on this site is always very supportive, I found.

Take care,

[Hidden in reply to Roamie]

Thank you Roamie and, you're right, it's just the waiting that's the worse. Living in Limbo and all that. This Site is helping a lot and have also found People on here very supportive so far.😀

[Hidden]

Hi I'm the same waiting 18 weeks worst time I have had waiting your head just goes into worst case mode this forum realy keeps your spirits up this waiting is not good hope all this worry lifts once the op is done and you move forw

ard with the process off recovering

[Hidden in reply to Hidden]

It really does send your Mind into Overdrive Len. I just can't wait to get it over with now. Just hope it's not going to be that much longer and thank you. Best Wishes to you too

[Roamie]

I knew in late February last year that I would need the surgery. I waited until August before they were able to do it. The consolation with that was that it told me that I was not as urgent as other people!

I was given a tissue Edwards valve, as advised by my surgeon – I understand that you can have a choice, but who am I to go against surgeon's advice? I am a dog trainer!

Unfortunately it has not provided me with a "cure ", and further surgery will possibly be needed. Hopefully it may be able to be done without open-heart surgery.

I have now had my hip replacement done that had to put a put on hold last January. It is going to take a long time to get my muscles working again having been in a wheelchair for a year!

Do ask everyone if you have any questions, there is bound to be someone out here that can help,

Take care, be patient.

[Hidden]

God - I don't know how you have coped with all that. A Hip Replacement as well!!! I would be a complete wreck. I'm like that with the Consultants and Doctors. I ask very little and just leave it to them. They're the Experts and just leave them do what they've got to do. That puts my situation into perspective a little bit after reading what you've gone/going through. I wish you all the very best and look after yourself.

[Hidden]

The operation terrified me known it needs done and yes we are all the lucky one s that have got a chance to get repaired but your in limbo till your turn comes to get your surgery over with some info after the op I just want to get out the bed and start walking and starting the getting better routine so any information will be appreciated get the head out of the low mode thanks

[Nic25 in reply to Hidden]

Hi Len123. So are you still waiting or post-op? Just not quite clear? But happy to help or pass on any reassurance on either if I can? As I said to Greenlady13 yes the waiting - the worrying, terror, fearing the worst, black nights - really is almost worse than the operation itself. So my sympathies for you! But feel free to DM me if you have any questions? Nic x

[Hidden in reply to Nic25]

Nic25 been 16 weeks initially went for a stent and couldn't be done so triple bye pass I have no issues with waiting more urgent people need it quicker than me I have been on the medication witch has given me a opertunity to get walking and cycling every day geting fit to go in for the surgery but the head the anxiety takes over and starts to get you down it takes over and starts to affect your confidence and wellbeing

[Nic25 in reply to Hidden]

Gawd. Sorry to hear that Len. I was waiting approx 15 weeks from seeing the surgeon (end of Aug) to surgery (mid Dec). Can't advise much but to say I spent many nights thinking dark stuff and worrying about what was looming - they're going to bloody stop my heart??? etc etc - so it is normal to be terrified. But as I said Greenlady13 for the surgeons this type of operation is really routine these days. One doctor in the hospital even told me that they prefer it to, say, operating on tumours for cancer because it is, to them, so much more straightforward. So sure you'll be in good hands. But that I appreciate doesn't make the waiting or being in limbo or worrying any easier! I would perhaps suggest a gentle occasional nudge to remind them you exist and are still waiting - as 16 weeks is a long time given that it's supposed to be 12 from pre-op tests or they need to do them again (though mine didn't!) - but, as you say, if you're not urgent you may get bumped down the list. But I guess the main thing is knowing you're not alone. You're absolutely right too to be using the time to build up your strenth and stamina as that will really help after - practising too getting up from chairs or sofas without using your arms is a good one. If the waiting is affecting your sleep or making you feel anxious or stressed do tell the team too as that may help to add some urgency to things. And if need be have a word with your GP too? But good luck. Stay strong and patient (through gritted teeth). Sure it'll all work out. Nic x

[Hidden in reply to Nic25]

How are you Nic25 after your op did you get up pretty quick and get your walking done and how do you r lungs get going sorry don't want to seem intrusive but tip s to start recovery couldn't start quick enough for me I read different stories I stick to bhf site and yes I've read the bhf books but nothing better than speaking to people who have been through heart surgery as they say nic this realy shakes you up once again the wait for surgery is hard the unknown as they say did the medical team help put you

At ease as I say as much info as possible so as I know what to expect and fowollow the process off a good recovery thank you sincerely for your help

Reg

Regards

Len 123

[Nic25 in reply to Hidden]

I've messaged you sir!

[TMeditation]

Hi I’m now 9 weeks since having aortic valve replacement and I feel great! Like you I was terrified from the moment I heard open heart surgery was the only option for me. In fact I think those of us who face this challenge go through a period of shock, not unlike the kind people get counselling for - so don’t be too hard on yourself, what you’re feeling is entirely normal. I’d just advise talking through everything with your Consultant - they’ve heard it all before and are a great place to start. Good luck and keep coming back to this forum for support - there’s lots of it around.

[Hidden in reply to TMeditation]

Thank you for taking the time to reply as I am still to go for the surgery reading your post help with the worry yes I will be asking consultants nurses any body listen me the more information the better for pre and post operation again off people who have been through heart surgery be glad when it is over and done terrible wait old head takes over

Thanks for your reply and support

[Hidden in reply to TMeditation]

That is very good to hear TMeditation. I do feel as though I'm in Shock. Just wasn't expecting it. Had this problem for years through Scarlet Fever when I was a Child. Always had regular Check Ups and Tablets and I've been okish!! Like the Consultant said though, tablets don't work for ever and the Valves do need changing or repairing now. So, we have to listen to the Professionals and just trust them. Doesn't mean I'm not terrified mind because I am. Thanks for your reply.😀

[Ianc2]

Try and keep active to distract yourself and buy a few books to read after you get into recovery and take very gentle exercise as part of your recovery. I used to measure my progress in street lamps and driveways. It is a truly incredible experience that will give you a new perspective on life and activity. Live long and prosper.

[Hidden in reply to Ianc2]

I'll bear all that in mind. Thank you Ian 😀