Worried for the future

[Realworldresident]

Hi all I require Aortic Valve and Ascending Aorta replacement due to a stenotic bicuspid valve I am 50y old and utterly terrified. I am so scared for my three young girls and have convinced myself that the surgery will kill me. I know people do survive but realistically for how long I'm petrified of having a stroke, infection you name it. Help welcomed.

[Shar28]

Hello, sorry to hear that you’re still as anxious as in your previous post. I wish I could wave a magic wand for you and take it all away! It’s a horrible feeling and so hard to cope with. Have you been able to talk about it with your GP? There’s no shame in asking for help. Appropriate medication and counselling can work wonders.

All the best to you and your loved ones.

[080311]

Hello Realworldresident

So sorry to read your post, the place your looking into is very scary, I had Aortic valve replaced and bypass done 4 years ago. But here I am living my life and grateful every day to the medical team that gave me my life back.

The reality of open heart surgery is nothing like our imagination makes it. It’s a major op but something that is done daily, you talk about something happening to you during the surgery, yes it could happen but not very likely, any operation has its risks. My heart was struggling to pump hard enough to get rid of the fluid in my body and I was drowning. The last words my surgeon said were “ right shall we do this?” There was only one answer let’s go for it.

I can’t make your worries disappear I wish I could, but just tell you how I was, I live in Scotland and had my surgery at the Golden Jubilee, from my room window I could see the river Clyde and the night before my surgery my family had left and I was alone, looking out on that river I suddenly felt at peace, I knew I had to have the surgery to save my life so I just gave myself up and had this feeling that everything was going to be fine.

If you need any questions about the operation just post and someone will be along to help.

Take care Pauline

[Fredders]

Hi, I had aortic valve replacement and my ascending aorta wrapped when I was 52. Initially they were going to be removing part of my aorta but when they opened me up they decided they could wrap it instead. I actually had to have a second AVR at 59 because the tissue I one had started to leak. After discussions with my surgeon I went for a mechanical valve the second time as during the interim period I had had to have my spleen removed, so a mechanical valve reduced the risk of further surgery. So as you can see I’ve survived two heart surgeries and a splenectomy.

It’s easy to say try not to worry, but it’s a perfectly natural response to being told you need major surgery on such a vital organ. Try to remember that for your surgeon it’s an everyday operation, loads are done every week around the country (or were until covid arrived). You will be in very safe hands and although they tell you there are risks, they have to give you that information so that you can make an informed decision, there are risks with any surgery. If you haven’t already, the BHF booklets about the surgery were really helpful for me when I was told I needed surgery. Also there are loads of us on here who have been through the surgery and come out the other side, and we’re here to support you through this. If you have any questions or just need emotional support, ask away.

Take care

Wendy

[TooLate4Daughter]

RWR, Please don't let your fears of the surgery get the better of you. The massive majority of operations like these are successful and allow people to live on with their loved ones. There's ample evidence for that in these and other pages. Have you joined the Aortic Buddies group on Facebook? They're a great bunch of people. The key point is, if your Consultant and Surgeon are saying you need it now or soon, get the surgery done and do not delay it or allow it to be delayed. The surgery is scary but we tend not to realise not having it is even riskier - That 2%, 3% 4% per year risk without the operation per year they tell us about IS real - may be a small number but significant for those that don't get their surgery in time. So while waiting for your operation - understand your conditions, and how to look after yourself and monitor yourself. Talk to the BHF nurses. Involve your partner or daughters if old enough. Make sure somebody around you knows about your condition and can be there for you through the surgery or if needed beforehand. Don't hold them back from caring for you. Apart from all that - plan for the surgery and immediately afterwards to make yourself as comfortable as possible . And plan for things you'll do as you recover and beyond - especially with your girls! Look forward to those and do what you can to make those happen. And - Good luck,

[Celtic1956]

Hi Tony here read your post I was diagnosed with same as you last (Jan) 2020.i understand your fears it's natural but you will be in expert hands I fortanetly had no fear because I was unable to breath prior to the opp I asked the cardiologist chance's without the opp he said two years as I was . or (15) years with the opp so I took the (15) option you will feel no pain during the opp you will feel weak after for about a 10 days your breathing and fitness will improve greatly I am one year on with no probs I wish you luck and feel free to keep in touch Tony.

[Realworldresident in reply to Celtic1956]

Hi Tony why 15 years? I have spoken to the top 3 valve and vascular sugeons in the UK and they all said typically the repair will last for life I'm 50 and they expect 20-25ys at least, assuming something else doesn't get you first.

[Celtic1956 in reply to Realworldresident]

Hi R.w.R. Tony here I was opperated on by the top cardiologist at Kings collage hospital . The reason for (15) years is wear & tear on bovine or pig aortic valve replacement and as you say you could be hit with a bus at any time in your life thanks Tony.