I'm a newbie to this site . I am 60yr old female awaiting AVR surgery and am absolutely TERRIFIED. I am so scared I am seriously considering not having the op even though I am aware of the consequences.
I have so many non-medical questions about the whole event and in particular the recovery process, which seems so daunting, that I don't even know where to begin. I am full of awe and admiration for anyone who has come through it and is on the road to recovery.
Is anyone willing to share their experience with me, warts and all, either publicly or on a one-to one basis (if that is allowed) and who is willing to answer my sometimes neurotic questions which will allow me to decide whether to go ahead with the op?
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Sammycat
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This is where we share fears, doubts, experience and knowledge. It's a supportive and informal group but no substitute for medical advice.
Firstly, your fear of the unknown is completely normal and common to us all, but by joining this forum you will, hopefully, be better able to cope with your journey.
I'm 66, male and fully functional after AVR surgery 5 months ago. My surgery and post op recovery was uneventful and the benefits enormous although not immediate; recovery requires time patience and your commitment.
My perspective was that, all other things being equal, for some degree of passing discomfort, this regular, routine operation would gift me near normal life expectancy. Doing nothing may at best have given me 5 years. Absolute no- brainer! Probably up there with my best life decisions.
I'll keep this post short but I'm more than happy to share any detail as no doubt other responders will. Don't worry - it's a change that's well worth embracing.
I think that being terrified is ok, it’s a normal and natural reaction to something like this. Our emotional brains and our logical brains don’t always agree so even when we know something is sensible we don’t feel like it is. In addition to everyone here the BHF nurses are fantastic so you may find it helpful to talk to them about how you’re feeling too. All the best. X
It’s normal to be scared, it’s a big thing to go through. I’ve been through it twice, first AVR when I was 52 and the second one last year at 59. Both ops were at Glenfields Hospital in Leicester.
Have you already discussed with your surgeon what sort of valve to have? There are pros and cons between tissue and mechanical valves. Tissue ones may result in another op, although they may be able to do it by keyhole surgery and there is also a new valve some hospitals are now using that has a longer life span. A mechanical valve means you shouldn’t need another op but you will have to take warfarin for the rest of your life. I had a mechanical valve this time as I had to have my spleen removed two years ago and didn’t want the risk of having to have a third heart surgery.
Most AVR patients are usually in hospital for about 5-10 days, depending on your recovery. You will feel like you’ve been run over by a truck, but it’s surprising how quickly you start to feel human again.
Please ask any questions you have, there are plenty of us on here who have had AVR surgery, or other open heart surgery, so between us we have a wealth of experience.
Sammycat, Wendy's advice is excellent, but it only seems quick when you look back on it!
I am now six weeks post op, and due to have my follow-up appointment on Thursday.
I do now feel a little more human, but for the first three weeks the best advice I would have is to drink, eat whatever you can and go to sleep as much as you can, and let time pass and healing progress!
hi sammy im 41 now and i had a shock 2 years ago telling me i had 2 have major heart surgery as any1 hearing this is scary i have 2 small children so was petrified but i joined this group and spoke 2 others and the advice helped me alot.i had the mechanical valve due 2 age.i wont lie after the surgery it did feel like a bus hit me but i was up walking around the nxt day very sore but i made it threw its nearly a year now and ive had a few issues with blood pressure and stuff and recently they stopped my bisopporol because i was haveing side effects but im back playing with my kids like a new man.advice i will give is after surgery keep the strap on ur chest at all times and a pillow in ur hands 2 put against ur chest when you cough and sneeze as it does feel like being shot lol.the group and the bhf nurses and rehab team are always there 4 u anymore questions u have just ask goodluck and you be fine.
I am 58 and in the same boat as you. I agree that’s it is all very frightening and I am now managing better by staying focused on the end goal and that is having more time on this Earth with my family and working down my bucket list. I found that if I focus on each stage and not think about the rest too much I can cope better.
I had my pre-op assessment a couple of days ago and the nurse who took me through it all was excellent. She gave me the whole picture, warts and all and gave me as much time as I needed to ask any questions. My husband was with me throughout and I am so glad because he has been a wee bit in denial and now we are both clear on what lies ahead.
This forum has been amazing in that all my questions were answered by reading others experiences to the point that I even know which bra to buy! I bought a treadmill for now and after, got the pillows and a cough cushion. I was so focused on getting prepared, I didn’t have time to worry about anything else.
I go in on the 4th for my AVR on the 5th and yes I had a bit of a meltdown when the letter arrived but a sense of calm has settled now. I am now writing epic lists for my husband and family, stocking the freezer and generally getting my house in order.
I will be very happy to answer your questions if I have the answers and confirm to you now that I have been exactly where you are now. You are not alone by far and I know that this forum will help you a great deal.
Please take care and I wish you well throughout your journey.
My aortic valve was replaced as an emergency on my 72nd birthday. Not the theatre visit I had envisaged.
I had a longer time than usual on the ventilator. Eight days in all and a fourteen day stay in hospital. You said you wanted warts and all.
I felt very weak and wobbly when I got home. I was on a strange soft diet with some weird jelly like additive added.
My husband had gone out and bought a chair for the shower.
I also discovered I couldn't get comfortable and kept changing seats.
I found sitting on a pillow with a couple behind me on an arm chair was the best position.
I slept reasonably well but couldn't sleep on my left side.
There was also lots of bruising and a strange lump just to the left of my sternum.
On the upside my only analgesia I needed when I got home was Paracetamol.
Cardiac nurses visited regularly and I did cardiac rehab after six weeks.
OK found bras uncomfortable and impossible to wear. My sister bought me some crop tops.
Later I was measured for soft t-shirt bras. Oddly I am a full size smaller.
After three months I was walking my dog up to five miles a day.
I can honestly say I feel better than I have for years.
I did lose quite a bit of weight and I was only very little overweight before.
I have now stabilised and bought loads of new clothes for my new life.
The operation was successful. I had a couple of setbacks. A fractured rib was discovered post op and I got pleurisy, but they were minor setbacks.
Have recently returned from holiday in Yorkshire where me and my little dog walked the moors for hours.
Do go ahead with the op.
My hero is my granddaughter who has had a lot of operations, three of them open heart and others through her back or ribs.
She is 23 now and truly is my inspiration.
At the time the recovery seems endless but looking back it was all worthwhile.
Please don't consider not having the surgery. Life is so worth living and 60 is not old these days.
While you are recovering get friends to take you out just for short trips while you can't drive. You can get a little stir crazy.
I had lots of my dog walking friends who took my dog out. One of the things you can't do is take the dog on a lead in case it pulls. Once I was able I walked with them. Only short walks to start with then I increasing.
Rehab is a bit daunting at first but great fun with other people in the same position.
You also cant use a vacuum cleaner or mop or even iron for three months.
Sorry it is a bit long but tried to tell you everything in one message.
Hi Sammycat. I'm due to be having an AVR in November (exact date tbc) and so, while I can't (yet) speak from experience, agree completely with what everyone has said here. Getting your head round the fact you're actively allowing this process full of pain to be done to you does take some getting used to, not least the whole thing of it being left up to you to choose which valve. Most of the preparation for this operation, in my experience, has been mental. But don't not do it just because you're scared - the doctors have referred you for this for a reason, and that reason is that the alternative in their view will be worse in the long run. Also, while it is a big and scary operation it is these days a pretty standard, mainstream one, with good outcomes and excellent recovery rates. But if you're struggling with it mentally please do speak to your GP or the hospital, as I'm sure they'll be able to reassure you. Can I also suggest you check out the posts by Pete healthunlocked.com/user/tic... who has been giving a blow-by-blow account of his experience of having had AVR and his recovery (and I warn you it is warts and all) which I've certainly found really useful in terms of getting a feel for what to expect. I hope this helps at least a little bit? Best of luck with it all. Nic
My name is Alec and in June I had a triple heart bypass surgery. Not the same as yours but with similar consequences.
I can tell you I'm hopeless getting up ladders, don't like spiders, am a little afraid of toads and the hairs on the back of my neck stand up if I ever need to walk past large and ferocious looking dogs. Oh, did I mention that I'm terrified of getting in aeroplanes as well?
In short I'm a practising devout coward with a lot of things.
You can imagine my feelings then when it dawned on me that I had to have major heart surgery. The word hasn't been invented for what I felt.
My son and daughter sat at my hospital bedside following me being rushed into hospital blue lights fashion.They both know what a scaredy cat I am. Strangely I felt a calm come over me. I told my kids that I realised there was no alternative. I knew there was no point in me declaring that I wasn't prepared to go through with the operation. Unbelievably I started to think along the lines of "Come on, let's do this. Let them make me feel better. Let them them get rid of this suspect, non-conforming ticker of mine".
Positively, you are curious already about the recovery process. I'm sure we all have our own tale to tell but there will be a lot of common ground too. It didn't take me long to realise that whatever happens it will take a LONG time to mend properly. Most people I've spoken to so far have underestimated how long. I've told myself to give it a year. Yes, a whole year! To begin with I cried when I had to ask my son to put my socks on in the morning. I was frustrated that I couldn't even make myself a cup of tea as I couldn't safely lift the kettle. I'd be like a little upturned beetle struggling even to get out of my bed or armchair in the first couple of weeks. I'm twelve (or is it thirteen?) weeks post-op now and I'm in rehab classes twice a week, can manage an hours shopping and can drive ok now.
It takes time girl and oddly I do feel a strange sense of pride. "I did it!" I tell myself. I went through with it, little old scaredy cat me".
I know exactly how you feel. I’m 58 and going in for AVR in 8th October so 2 weeks today. At times I feel like just running away and that this is all a bad dream but when that happens I focus on how lucky I am to have something that can be fixed. There is no alternative. I have a beautiful 15 year old daughter who I want to see growing up and who needs me. Now that I have chosen my surgeon, hospital and valve I just want to finish all my pre-op arrangements, get the op done and get on try to be a good patient then live my new life. This group is SO supportive - we all go through much the same thing mentally and emotionally I guess and everyone help each other. Someone gave me good advice - don’t focus on the operation as that’s beyond your control. Instead focus on your what you can control - your recovery which as everyone says will take a while.
If you need to chat feel free to message me! We’re all in this together - and yes, read Ticktock61’s blow by blow account!
Hi Alison, was just replying to Sammycat and saw your post. Just wanted to wish you all the best for your op. You can do this!! Take care and good luck xxx
Yes Alison, on May 24th this year. All a bit of a blur now but feeling great. Just keep remembering that this is huge for you, but an everyday thing for those involved in your op and aftercare. Stock up with good books, good food in freezer and take your recuperation day by day. Let people help when they want to and relax. All will be well. Keep me posted xx
Good luck, we're all thinking of you and wish you well for tomorrow. I am now eight weeks post op and I suppose that I should not be expecting to be perfect yet so, patience is a virtue!
I am 57 and had AVR in July. It is scary and my anxiety was bad for weeks before. After surgery it is difficult to move on the bed in hospital but you will manage. I was in for 8 days.
I had no appetite in hospital or for 2- 3 weeks at home.
I could not dress, undress, have a shower without help from my husband. I have thick wavy hair which wasn't washed tidy for weeks. I could not blow dry or straighten it 😫
It was difficult to sit comfortably on chairs or settee but I put a cushion underneath and behind me.
I slept upright in bed. I would advise you try different pillows, cushions etc in bed at home before you have surgery as this will be too uncomfortable to do after surgery. I had a fab cushion for bed it has been my godsend. I can send you a photo if it will help.
Also try bras before surgery not wait until you come home. I sent for loads from catalogues to try. You need non wired old fashioned type bras. But I bought them a size bigger e.g. if you normally a 34b try 36b. As you will be tender after surgery.
Going up and down stairs was not good.
If you do not have a toilet upstairs I would consider getting a cheap commode for the night's. Especially as you will probably be on water tablets for a couple of weeks.
I have recovered well still get tired and ache sometimes. My wound is very tender and itching and to be honest quite painful sometimes but that's normal apparently. I am waiting for a place on cardiac rehab which I'm desperate to start.
I am on Warfarin for life as I had a mechanical aortic valve.
But this was the best choice for me as I did not want to face surgery again.
If you got any questions etc feel free to ask. Good luck 😍 you will be fine.
The worst thing about an AVR op in my opinion is the waiting and worrying before it happens. I'm a 53 year old (young) lady and had a mechanical AVR and replacement of my ascending aorta (had a bicuspid valve and aneurysm on my aorta) on 24th May this year.
I have three kids aged between 11 and 16 and my biggest fear was leaving then without a mum. But at no point though did I consider NOT doing it. I knew that if I didn't have it, I'd keel over and die of an internal bleed sooner or later.
But it's HEART surgery, so you think its going to be the riskiest thing you'll ever do. But it's not (Well, it is big, and like any op, there can be complications). But these surgeons and nurses do this every day of their careers and it's no big deal to them.
I remember being semi-conscious coming round after the op and thinking 'thank God, it's over and I'm still alive!'. Pain relief is great so no worries there. I slept when I wanted to which helped I think. First 3 months I was a bit achy in the rib area but kept taking paracetamol, which helped. It soon passed and I'm back to to walking, gym and I've just taken my youngest go-karting with his friends for his birthday!
It really is amazing how this op can give you a greatly increased lifespan for a few months of recovery.
With the benefit of hindsight, I consider it a no-brainer. Organise beforehand. Stock the freezer, get someone to help with laundry a nd to run a Hoover round. Buy 2 good bras (a genius M&S lady suggested nursing bras which have no wires and are super comfy, and cheap).
I'm back working part time now and due to go on a short break to Barcelona next month, the first holiday since the op. Feeling great and so glad I had the op as it's a massive weight off my mind. Hope you feel you can go ahead with it, but arm yourself with knowledge. Talk to your surgeon, cardiologist or cardiac nurses on this forum.
Sorry for such a long message, but good luck and good health to you. Sending you a big hug xx
I must also say how brilliant NHS have been with supplying all my equipment needs on loan..wheeled frames (I need a hip replacement) stool for shower, loo frames, wheeled trolley, memory foam and air cushions and hospital electric bed - wonderful.
You will be fine, I was also really frightened and nervous, but all the theatre staff were superb, also all the ward staff, - and the stitching of all my wounds is unbelievably good, and I'm sure will be almost unnoticeable .
I hope you are feeling a little more reassured with all the brilliant posts on this site.
So many people have been through what you are facing and are now on the other side, as you will be.
It is very difficult facing hospital when you need such surgery. But everyone is there to help you and nothing ever seems too much for the staff.
I have been on both sides having worked as nurse and midwife for forty years.
I know I was a difficult patient partly because I had worked in that hospital and partly because I had seen cardiac surgery from the other side.
When you get home let people help you, be nurtured. Women are so used to doing the nurturing that they find it difficult to be on the other side.
If your husband can't do the housework a bit of dust won't hurt.
You will be advised not to lift a full kettle of water. Just put a cupful in it or use the microwave.
Order shopping on line.
Set yourself little goals. Mine first one was to walk down the garden. Then I advanced to walking to the end of the street. Five to ten minute walks to start with. Slowly increasing a week at a time.
I went to bed at midday for a nap. Sleeping on the sofa is not the same.
I didn't find the scar unbearably painful. A little tender and cotton next to the skin was best.
After six weeks I started with massaging with bio oil. It is nine months now and my scar is a white line between my breasts.
That is where we are better than men, because it is not so visible on women.
Look,forward, little goals.
I caused a riot after rehab when they told me I could do everything I did before. I asked If I could SCUBA dive, they were horrified. Then I asked if I could parachute jump. The response was why do you want to. My reply was I have done those things before.
So you can do a lot but not SCUBA dive or parachute apparently not advised
Hi There, please don't get worried. I've been through it and heart surgery is so good these day's you'll wonder what the fuss was all about. I've pasted a URL with my blog about my whole story and yes I had a few hiccups after surgery but I love running and was doing that 3 months after surgery! I'm nearly at my second birthday of surgery and my running keeps improving (I'm 58 now), I still socialise with a bit of alcohol (they do the units bit if you ask about having a drink and I was worried about Warfarin and Alcohol but my INR never drifts a lot!).
The only things that is different is living with the ticking of my mechanical valve especially at quiet times like going to bed lol! and keeping my phone alarm on to remember to take my Warfarin and Ramipril.
We are all nervous or scared before AVR surgery, it's normal as it's a big operation, you are far from alone.
Had mechanical fitted aged 51 so I know what you are going through. Amazingly the nerves disappear when you are there. You are out cold for the operation. Afterwards you get as many painkillers as you need, then paracetamol does the trick nicely, so it's mainly the discomfort that all scars have rather than any post op pain. You'll be up and around in no time.
Just use the time beforehand to prepare as much of life's heavier stuff as possible so it doesn't need done when you come out, eg I cut up enough of my dogs frozen food to last, allow for at least six weeks. As others have said don't worry about the small stuff (dust etc) that can wait. The time passes more quickly than you would think.
Remember that the surgeons are experts at AVR nowadays, with lots of practice. You are in good hands, and the nurses are wonderful.
Warts side: it's emotionally draining, uncomfortable at times, frustrating when you can't do things, and knackering.
However: this is short term, the results of not going ahead are worse and long term.
Thank you so much to everyone who has shared their experiences with me either on this forum or in a private message. The support is incredible and I actually found it very uplifting. As a result of your postings, I am now seeing the surgeon on Thursday with a view to having the op on 24th October. I am SOOOOOOOOO scared and feel physically ill every time I think about it but I have put it off for months and really need to stop messing around. Stupid thing is that I don't feel ill so there doesn't feel as if there is an urgent need to have it done but I know things can change in an instant . All my friends and family keep saying "you'll be alright" but they don't know that and its not them having it done. This is why it is so important to me to hear your experiences as I need to be prepared and to know what sort of things can happen and how you have dealt with them.......and most importantly to know I am not alone.
Good to see you are using the forum. Good to see all those people sharing with you, knowing that every word is well meant since we've all been in the same boat.
You have put your finger right on the biggest reason for your anxiety. Presently you don't feel ill and who can blame you for not feeling the need for the op!
It was exactly when I realised that I had to go ahead with mine that the calmness started to take over. I knew there was no alternative so I started to think positively about post op. I thought about all the good things, like feeling better, like not having that nagging worry all the time about my ticker which I knew deep down wasn't great.
Have a good meeting with your consultant. Hopefully you'll admit to yourself that its best to get yourself mended, and the sooner the better. Once you do, you'll start to cope more strongly with it all.
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