Terrified

[Keeptrotting]

Terrified..Hi I’m a 48 year old woman & have just been told I need my aortic valve replaced!! I’m absolutely terrified and very anxious so any information would be so helpful! Currently I cannot stop thinking of all the worst outcomes but am desperate to be positive and have a greater understanding of the process!! Thanks so much & love to all x

[080311]

Hello and welcome, I know the place you have found yourself in is a very scary place. I had my aortic valve replaced and a bypass done 3 years ago. I was 20 years older than you, and you must be thinking this is so unfair, and yes it is, but once you have your heart fixed! You will be good to go.

There is lots of practical advice here on the forum, and any questions just ask.

What I will say is when you get home it’s baby steps, and please try and go to cardio rehab, it will help you get your stamina back but it’s great for your mental health, you will be with others who have had similar experiences to you and you can ask questions and laugh about what you have gone through!

As I said I am 20 years older than you but I am grateful to the surgeon and the nurses and all the staff for giving me my life back.

Best wishes Pauline

[Keeptrotting in reply to 080311]

Thankyou so much that’s very helpful and reassuring xx

[Pinkrobin]

Hi, I'm just a few years older than you. I had my AVR in oct 2019 and have just gone back to work. I too was scared, but found lots of advice and comments here within the forum that helped. The hospital also provided information at each stage of the process leading up to the op. Try and keep positive, I found the worst time was actually waiting to be told of the op date, at that stage, I really just wanted to get it over with. All the best R

[Keeptrotting in reply to Pinkrobin]

Thanks so much I really appreciate your reply and Will try and focus on the positive feed back xx

[chrisHillman]

Hi, I had heart surgery 3yrs ago and desperately wanted to talk to someone who had been on the journey and could be there for me on my journey.

I want to set up a Buddy system of people who have been on the journey professionally trained to help people like you who are about to undertake the journey.

Please get in touch as I would love to be your 'Buddy' on your journey.

Believe me although you are worried at the moment the euphoria and new life you have on recovery is well worth the journey.

Chris

[Tempest1970]

Oh I dont really know anything about this. But I could read the worry in your post and wanted to send a huge (((((hug))))

[Keeptrotting in reply to Tempest1970]

Thanks that’s lovely of you and much appreciated I need all the hugs I can get currently xx

[Yorkshirehead]

Hi Keeptrotting,

I had my aortic valve replaced in 1982 when I was 29. It is still going strong, as am I!! The technology and expertise has moved on considerably since I had my day, which I hope gives you some confidence in the team who will be taking care of you. You’ve thought of all the worst outcomes and have probably come to the realisation that you cannot do anything, at this stage, to influence what might happen. I found that when I resigned myself to this fact I was able to start thinking about the future. Yes, it may well be difficult in the first few weeks post op, but by following advice and planning ahead for the next enjoyable occasion in life, be it a long walk or a holiday, etc., you will get through it and, perhaps, even feel a stronger person because of the experience. I know that I did.

Very best wishes and keep your chin up. 🙃

[Keeptrotting in reply to Yorkshirehead]

Thanks so much so kind of you to take the time to reply and such reassuring information! I’m glad everything is going strong and I will try to be positive! I’m not so worried about recovery as getting through the operation!! But I really appreciate hearing from lots of people who do xx

[AyrshireK]

My Dad who is a very young fit and active 70 year old had an aortic valve replacement last Thursday (27th) - he had been waiting from around November time after a collapse in July (childhood heart murmur obviously developed with age and never monitored).

He was given loads of information pre op regarding exercises to keep himself fit up to the op and what he could do whilst in HDU to clear lungs etc.

His op lasted a bit longer than anticipated as they found some extra bits to do whilst they were in. He went into ITU about 4.30pm on Thursday and about the same time on Friday he downgraded to HDU.

They had a bit of bother waking him initially as he got a bit overactive, wanted a wee despite catheter in (a common male issue), he was finally brought round though groggy on the Friday, off the intubator, had his chest drain removed, a chest x-ray and moved to HDU.

Saturday and Sunday in HDU a little groggy but now eating & drinking. Monday back to his old self, chatting away, sitting in a chair from Sunday.

Tuesday off for a walk with physios, catheter removed, using a commode for both ends, central line out.

Wednesday and today off for a walk, up standing and exercising legs etc.

He needs a pacemaker fitted too as sadly his heart hasn't kicked into normal rhythm with external pacing so he is due to have that on Tuesday (10th).

His scar is clean and tidy and already uncovered, small wounds from drains etc. Just a cannula in now for meds. Blood tests daily, oxygen a bit for over night and regular monitoring. He is being looked after fantastically, never in much pain as he gets asked regularly "Are you ready for your pain killer?" - he's on Dyhydrocodeine plus paracetemol in between. They say he'll be back on the ward after his pacemaker goes in on Tuesday then moves made to get him home.

From what i've seen you will be in very good hands and very well looked after. My Dad is doing great, he's looking forward to rehab and getting his life back. Trust the docs and nurses they are superstars.

All the best, Katie

[Keeptrotting in reply to AyrshireK]

Hi Katie I cannot thank you enough for taking the time to write that to me and I take huge reassurance from m reading it! Just amazing of you to write such a detailed account of operation and recovery this has really helped! I pass on very best wishes to your father for the rest of his recovery and a huge hug and another Thankyou to you xx Pauline xx

[AyrshireK in reply to Keeptrotting]

Glad it helped, just thought it might help to hear a recent eye witness account.

All the best, Katie

[Lyndaloo494 in reply to AyrshireK]

Hi Katie, I saw update about your Dad as read your initial post from a few days ago. Sorry to hear about the additional worry about the pacemaker but sure he's in good hands. I'm at the Jubilee on Tuesday for pre op but they called me at teatime today to offer a cancellation for the surgery Tuesday!. This was a shock at the short notice so I declined and it's now in 2 weeks. X

[AyrshireK in reply to Lyndaloo494]

You will definitely be in great hands. Yeah the pacemaker thing is a bit of an additional worry. He has heart block so every time they take him of the external he goes all fainty so permanent pacing definitely now needed.

[Shar28]

Hi, I think your feelings are very natural and normal. It is a scary situation to be in. It’s the unknown and I dare say those close to you are worried too. My husband had his Aortic Valve replaced a couple of years ago. The very worst part of the whole process was the waiting for the operation! He was extremely anxious beforehand, lost quite a bit of weight due to the worry and needed some medication to help from his GP and on admission to hospital. But he was well looked after and he got through it. He wouldn’t want to do it again (and chose a mechanical valve to minimise the chances of needing to) but he’s very pleased he went through with it, as am I.

All the best to your and your loved ones.

[Keeptrotting in reply to Shar28]

Hi thanks for taking the time to reply and I totally understand you’re husband losing weight and being anxious I’m really struggling with it !! You’re message is both informative and reassuring sending you both love and thanks xx

[StevepH2012]

Hey

You've come to a great place. I am 56, was referredto surgeon 18mths ago after 3 years of echos and no symptoms.

That was a big moment! This group and the support from people going through or having gone through the same thing was a fantastic help then - and continues to be. You don't say if you, as I was, have just been told 'the awful truth' that surgery is inevitable at some point or if you are, as I am, now waiting for surgeon appointment at which journey to surgery begins.

The most important message is that although prospect of OHS is huge for each of us, for the cardio surgeons it's routine - it's what they do every day.

Steve

[Keeptrotting in reply to StevepH2012]

Thanks for your reply I’ve been told I will be given a date after my next MRI and echo scan which will probably in the surgeons words end of summer ! Got to have tests running up to that! Previously the condition was watched by regular MRI scans ! And I hoped that nothing would change but I’m told the risk of carrying on without the operation is to high !! So again in surgeons words it’s a no brainier x

[GeorgeAlexander]

My husband had his AVR replaced last July he is only 45. As others have said the waiting is the worst. It’s totally normal to go through all the outcomes. He lost so much weight worrying about it but you are in safe hands and they know what they are doing. Everyone’s recovery is different, my husbands was slow but he also had his Aortic Root replaced too so he was in surgery for much longer than I imagine you will be. He is doing amazing now and looks and feels so much better. You will be back on your feet before you know it 😃. Are you having a mechanical valve? Sending you lots of love at this difficult time xx

[Keeptrotting in reply to GeorgeAlexander]

Thankyou for taking the time to reply & yes I’m having a mechanical valve ! I’m just pretty terrified right now but reading the messages on here has helped enormously! Glad you’re husband is doing so well! Much love and thanks to both of you xx

[GeorgeAlexander in reply to Keeptrotting]

You are so welcome, if you have any questions please just ask xxx

[Supernanu]

I had my avr 21 days ago! So still in recovery (baby steps) phase. I was in ITU for one night then HDU for two nights then onto Ward and home in day 5.

I can now walk upstairs normally and only slightly more breathless than before op. Still get very tired - sleeping on my back is a problem - so I nap during the day. Pain is under control with paracetamol.

As others have said, the idea of ohs is frightening but it is routine for the doctors and nurses.

The hospital gave me a lot of info, and there are very good booklets from BHF too. Also their cardiac nurses are an invaluable resource.

I’m a 68 year old woman and looking forward to being active again soon.

Hope this helps 😊

[Keeptrotting in reply to Supernanu]

So glad to hear you’re in the recovery process and thanks for the encouraging message! I wish you a great recovery and thanks for sharing your experience it really is helpful xx