Aortic root replacement

[Janemags]

I'm due to have the above op which involves replacement of aortic valve with mechanical one, and replacement of a section of my aorta which has an aneurysm. I'm meeting the surgeon tomorrow to discuss it. I have a bicuspid aortic valve which is the cause of the problem. I'm very scared and wonder if there's anyone out there, especially a woman, who's come through this already? Scared of not surviving, of get complications, and of not being up to looking after the children after. All pep talks welcome!

[Sallys77]

Hi. Afraid I’m in the same position, but not advanced enough yet for surgery. I still have all of the same concerns. Children are teenagers now. I’m sending you lots of healthy and positive vibes. Will look for some similar questions/ useful replies. X

[Janemags in reply to Sallys77]

Thanks Sallys77! It's all a bit mind-blowing with all the associated risks of the op, but I mainly worry about how it will all affect my children, (they're 11, 13 and 15), especially if things go wrong. Just having a pre-appointment wobble I think! Thanks for the positive energy, nice to know there are others who really do know how I feel. All the best to you too and thanks for replying x

[Sallys77 in reply to Janemags]

I totally understand. Just wish I’d joined this chat before. Just spend time worrying about it in my own! Ridiculous! Loads of luck for your appointment. Make sure someone goes with you and write down everything you’d like to ask. X

[Janemags in reply to Sallys77]

Will do, thanks Sallys77 - got my list done. Take care x

[Fredders]

Hi, I had my first AVR in 2011 which also did ncluded having an aortic root wrap. I had a tissue valve that time but unfortunately that one started to fail, resulting in my second AVR last November. This time I have had a mechanical valve fitted. Thankfully I have managed to get my INR levels steady quite quickly and I also have a home testing machine so I don’t have to take time off work to go to the clinic.

I can appreciate how you are feeling, facing a major operation is scary enough anyway, but when it’s your heart it seems to be even worse. For my op I was admitted the day before and am lucky in that I can’t remember anything from having a shower in the morning to waking up in intensive care. After your op you normally stay in icu for a day before being transferred to the ward. I was out of bed the following day and walking the day after. The normal stay in hospital is 5-7 days.

The nurses will give you plenty of painkillers but don’t be afraid to ask for more if you need them. This is not the time for heroics, you need to control the pain to enable you to move about. You may find your tastebuds, memory and concentration are all a bit rubbish to start with - a side effect of the anaesthetic, but these will improve. Take some earplugs in with you - a ward is never quiet! Sleeping is difficult but I kept the top of the bed at an angle, which helped.

When you get home use a v-shape or bolster pillow (or a spare duvet) to give you support. Don’t overdo things, it’s very easy to think you can do more than you can and regret it the next day.

Very importantly, be kind to yourself. You will have good and bad days, that’s normal.

I went back to work 12 weeks after my op and feel fine apart from breathlessness when I’m walking outdoors in the cold.

Sorry for the lengthy reply, but hope this helps a bit.

Wendy

[Janemags in reply to Fredders]

Thanks so much for your encouraging reply. And the helpful tips! I'm sure that while this op is a terrifying prospect for us, it's what the surgeons perform regularly. All the same it's good to hear from someone who's been through it. Sorry to hear you had to go through a second valve replacement- hope you're keeping well now. And thanks for taking the time to reply x

[RAS53 in reply to Fredders]

Good Evening Fredders- I am due to have an aortic valve and aortic root replacement shortly and I am thinking about my post operative recovery. I normally sleep on my side but I have been advised that I will not be able to for up to 6 weeks to allow for the sternum to heal - you mentioned about using a bolster pillow can you recommend a particular type and where I can purchase one. Many thanks.

[Fredders in reply to RAS53]

I was told it was okay to sleep on my back as long as I wasn’t lying flat and wore a supportive bra to stop the wound from stretching. Whilst n hospital I only slept on my back but with the top f the bed raised. I have posted a reply about bolster pillows on your other post - amazon sell them. If you don’t want to go to the cost of buying one, after my first op I used a rolled up duvet, which worked just as well, I just decided to treat myself to a double bolster one this time to see if it would help my pre-existing back and shoulder problems.

[Mary_Janet]

Hi Jane and Sally,

I am a 56 yr old lady and I had a mechanical aortic valve replacement for bicuspid valve last May. I am unsure if I had the aorta operated on but don't remember that being mentioned.I also have teenagers then 14 & 17 and a wonderfully supportive husband.

I only discovered that I had a valve problem when I ended up in hospital with a nasty infection of the heart lining, endocarditis. When they were diagnosing the endocarditis they discovered a bicuspid valve that needed to be replaced urgently. With hindsight I realise that I was actually quite breathless going up smaller and smaller hills.

Everyone's story is different to your own, I was in hospital for three weeks before surgery and for a further six week after the op. I did not meet the surgeon until the day before the operation but got my information mainly from my cardiologist and his team. Because I saw a doctor everyday I asked questions as they came to me. The nurses on the cardiology ward also had experience and helped me.

The day before surgery was very busy, I met the surgeon and then his registrar followed by two anaesthetic doctors who were amazing. The nurses kept me going. Everyone was more than happy to take the time and answer questions and reassure you. I decided to have a mechanical valve as I don't want more surgery . Taking warfarin is ok. There is set of rules to keep But they are ok, for me a small price to pay. I have a new generation valve and now only hear the clicking as I go to sleep and sometimes if I am sitting quietly. My husband can hear it if he puts his head on my chest.

The night before the operation was busy, I reluctantly said farewell to my visitors, it's an emotional time whatever anyone says. But you are keep busy having a shower, washing hair and a shave with special soap. I also had to pack up my belongs for my transfer to ITU. I was given sleeping tablets and had a surprisingly good sleep.

In the morning it was another shower , finish packing and into bed for my premed. I was remember going down to theatre but nothing then until I was awake in ITU. ITU is all a bit of a blur and I just remember being thirsty more than anything. I was there for 48hrs then back to the ward. As Fedders said they will give you painkillers regularly and you should take them. The physio come into help you with deep breathing, then going for a walk and ultimately trying the stairs.

Most folk appear to get home in about a week. I was transferred back to my local hospital for further treatment.My recovery was much more protracted than most but I am getting there and finally returned to work in Jan this year.

My family have been amazing, we went from me being a busy wife and mum who worked part time and who helped others to me being in hospital for nine weeks. My husband would not describe himself as domesticated but they all coped really well. My husband continued to work more or less normally , the kids went to school and my eldest had his highers to sit. Everyone had to do more than normal. My son (17) had to cut the grass, do the washing and shop, my girl(14) cooked and tidied the house. My husband did everything, managed the house and kids, worked, projected managed a new kitchen being fitted numerous other things oh and visited and worried about me. My husband is outwardly a very calm person and that helped everyone. We were honest with the kids and told them everything , only one time we delayed telling them sometime was because of my son's final exam - the kids told us off for that. I am very proud how my family coped. My boy made some mouth dropping comments but it was just him processing everything. They were good too when I came home and helped me out with lifting , (no lifting anything for 12weeks) but after a while I was not allowed to use that as excuse ! We let school know what was happening and took up any offer of help ie friends did ironing for us, made meals and took the kids to places if needed. It is a tough time for teenagers,in our case I had no choice and we all just had to get on with it and we did.

Write down any questions and thoughts. Use this forum , someone will be able to answer your questions and give you support. Avoid Google . We have all be scared before our operations and those he say other wise don't believe them. I hope this ramble has been helpful. Once I start talking.....I don't stop

Best wishes to you both

Mary

[Janemags in reply to Mary_Janet]

Thanks for taking the time to reply Mary - it sounds like they got you into hospital just time! I'm lucky that by pure chance a very faint murmur was detected by a GP a few years back and so I was sent to a cardiologist who diagnosed my bicuspid valve. I had regular scans then, which detected the aneurysm and I was told once I'd reached the threshold for surgery. It must have been very frightening for you for everything to happen so quickly and urgently but sounds like you got terrific care, and your family sounds fab. I'm training my lot up just now! Thanks again for your kind message, take care x

[Mary_Janet in reply to Janemags]

Spoke to my kids and asked what they could pass on to your kids. My operation was on the Wednesday and my daughter saw me on the Friday even and said to warn your kids that "Mum you looked that your Mum," I was puffed up with fluid (temporary) and had some impressive bruises, wound dressing and a couple of lines. My son 18 , said , " be careful what you say to people, they might not be ready to see things the way you do!" Mum, no going on the bouncy hopper as your new valve might fall out !" Did make me laugh at the time and wonder where that came from ! NB have taken his advice and avoided all bouncy hoppers !

[Janemags in reply to Mary_Janet]

That's so nice of you to think of asking your children to pass on yours to mine! Thanks Mary. Was thinking of only having my children to visit after a few days after i have the drain lines etc taken out. Dont want to scare them with the Frankenstein look! Thank your children for their top tips. I can see in an odd sort of way why your son would worry about your valve dropping out! My youngest son would definitely say something similar! I will also be steering clear of bouncy hoppers, lol!x

[MKB38]

Hi Janemags, on the face if it I was fit as a fiddle this time last year, aged 65. Then they found my aorta was stenised and biscupit too. I had a straight forward tissue valve replacement in November. It all went well and I was out in 5 days. Obviously you are sore to begin with and barely able to move your arms, but keep taking the paracetamol and gradually movement improves. Do as you are instructed, don't try to do too much too soon. It isn't nearly as bad as you imagine, the surgeon and staff were marvellous. I'm part way through cardiac rehab which is well worth it and due back to work part time this week. I only have a 4 inch scar which has healed fine. My advice would be do some exercises to strengthen your core to help you get out of chairs and bed without leaning on your hands and arms. The team at the hospital will help you do this too. The sooner you are active the quicker you'll get home. Most of all, try not to worry. It is very common and the op is routine. Be positive. Best of luck. Margaret xx

[Janemags in reply to MKB38]

Thanks so much Margaret - I'm going to hang on to the words, 'it's not as bad as you imagine,' 'it's routine', and 'four inch scar'. My imagination tends to run riot so I had visions of my scar being like something out of Silent Witness! You seemed to bounce back very quickly which is very encouraging to hear. Hope all remains well with you, thanks and take care x

[MKB38 in reply to Janemags]

Oh I just thought of something else, quite important for ladies, a couple of decent bras that either can be pulled up over your hips like Sloggis or fasten at the front. You'll need to wear them all the time, especially in bed to give you support. Luckily for me I'm not well endowed, but I think it could be uncomfortable if you are, pulling on the wound. John Lewis are very helpful. Keep in touch. Margaret x

[Janemags in reply to MKB38]

Ah, that was another issue Margaret! I am rather large in that department, which I believe is problematic in terms of infection too. I will go to John Lewis, thanks! There also seems to be a special cardio surgery bra available which could be another option. Thanks!x

[MKB38 in reply to Janemags]

Yes, I was wrapped in a large elastic thing held by Velcro whilst in hospital, which was quite comfortable. I guess that is what you are referring to. It might even be best to shower in a bra for a week or so afterwards to support you. Showering really does wipe you out the first couple of times.x

[mewg]

hi jane i have 2 children under 3 and i had a mechanical valve fitted about 3 months and although i was told not 2 do stuff with the kids i did and now im clicking like a watch and everything is good its like any operation they have risks but the odds of survival are excellant.after surgery yes you will be sore 4 a while and alot of discomfort but it will get easier.i had minium evasive which is haveing a smaller scar and not all ur ribs popped.best advice after the op is hold a pillow against ur chest when you cough or sneeze.goodluck and if you need any other advice just ask paul

[Janemags in reply to mewg]

Thanks so much, very encouraging that you can go back to a busy family life post-op. I will keep that pillow handy, lol!xx

[gal4God]

I’ve had a replacement artery with valve about 6 months ago and I doubt at the no I’d be able to look after kids. I have little energy and breathing difficulties and pains. I’m struggling to look after my dog and he’s on a different routine than normal. Later breakfast and different times for going outside and my freind walks him. I definitely would struggle with school times so glad I don’t have kids. U are going to have to get family to helping look after ur kids.

[Janemags in reply to gal4God]

Thanks for your reply- I will get the family to muck in so should get by though it won't be easy, I know! Hope you start to feel a bit better soon, take care!

[KazSumm]

Hi Jane I had AVR 7 months ago

I had no symptoms, so immense shock to be told I was having open heart surgery and that I was being kept in hospital until Southampton could fit me in as my condition was chronic.

I know how you are feeling right now “this can’t be happening to me” but it is and there is no alternative but surgery and this will save your life that’s how I looked at it, very thankful that it had been discovered because the alternative is not worth thinking about.you can start preparing now ,learning to get up from chair and bed without using your arms, getting a V pillow and a body pillow for when your home ,for the first few weeks or more you will sleep slightly upright , moisturiser and massage your sternum this will make your skin supple and your scar will not be tight and heal quicker ,a few weeks post op use bio oil, my scar is hardly noticeable .

On the day of the op I was really calm I can remember being wheeled down laughing with the porters the pre med made you feel like you’d had a couple of G&Ts, next i was waking up it was 7.30am next day, I felt great and very thirsty yes I been given drugs but I didn’t feel out of it or thick head I just felt normal.i did so well I by passed High dependency

and by 10am was on a normal ward. The next day I walked to the bathroom and 3 days later I was home. I can’t say I had any real pain just uncomfortable but I took any medication that was offered, mostly paracetamol.i did get sleeping tablets when I got home found it hard to adjust after hospital routine of being woken up every few hours , and sleep is the greatest healer, only took them for 2weeks and not had a problem since.when your home let family , friends do everything for the 1st 2weeks, don’t make the mistake of having a go 😂 I thought I could hoover big mistake. please enjoy it because life gets back to normal quickly and before you know it your washing, cooking, and running after family again 😆

You will be offered 8 weeks rehab to help with fitness etc it’s good. I went back to work 12 weeks after my op. I still get days when I feel tired but I don’t feel guilty if I want a afternoon snooze. Life is a different normal, but it’s good.

So chin up, take big deep breaths, I’m not going to pretend it’s not frightening, but it’s no where near what you imagine. For the surgeons this is routine now a days, for us it’s life changing. NHS is amazing . Sorry for the long reply, if you ever want any more info on my AVR just ask. You will survive and lead a long and happy life just like me. Take care Kaz❤️💕💖

[Janemags in reply to KazSumm]

Thanks Kaz For your lovely and very kind reply. Very useful tips too! I'll buy the bio oil and the v cushion. Saw my surgeon yesterday and it's not root replacement as I thought but replacement of the ascending aorta and the valve. I'm so much more confident about it now from what he said and from all the lovely support from other kind people on this site. You do wonder how you could ever survive such a thing when you're first told you need it and it's really only by hearing of other people's experiences that you start to believe you'll get through it. So thanks again, very much, Jane xxx

[123m]

Hi Jane

I had the exact same operation, you are going to have, my op was done at papworth as an emergency because I fainted, and was so bad not allowed to return home until after the operation. I only stayed in hospital five days and then discharged. You will be able to look after children after a few weeks. Alas I couldn't drive for six weeks . Life soon returns to normal. I used bras from m&s they were called post surgery bras, and like you am a large busted lady, they have no wires and are very soft, just buy one size up in the cup and back as you are a little larger at first. You really need to wear them all the time to support the chest wound to help it knit together. I worn mine night and day for the first six months. I to find I need a little bit more sleep than before, but compared to what to what would have happened to me , that's nothing. Anything else you what to know just ask. Karen xx

[Janemags in reply to 123m]

Thanks Karen, that's great info - do the M&S bras fasten at the back or front? Did you find back fastening ones difficult? I usually fasten mine at the front around my waist then spin them around anyway so wondered if I'd still be able to do that. Did you need a clean one every day? I'm concerned about bacteria forming where breasts meet over the scar while wearing a bra 24/7 - did you find that an issue? Sorry about the detail but I want to manage this side of things well to avoid infection! Thanks for your help!x

[123m]

Hi Jane

I could not find any front fastening bras in larger cup sizes, so my daughters brought me back fastening ones. Even with the wound I managed to fasten them at the front and then turned them round. They told me to shower daily, I only changed the bras every few days. They didn't stop my wound healing up, even though my breasts met in the middle. The only problem I had with my wound was at the bottom, it hadn't quite knitted together, in the beginning I just put a small hanky in between my bra and wound, but in the end had to go to the practice nurse, and she dressed it for me until it healed, but this might not happen to you. When I left hospital my wound was dry and already healing and wearing the bra all the time was far more comfortable for me, the hospital told me to wear one at night for the first six weeks after surgery, they do not want the weight of your breasts to pull on the wound, and in the first few weeks I found it slightly uncomfortable having a shower as they do pull on the wound when you take your bra off. In papworth they provide you with a chest wrap after surgery, but encourage you to put a bra on as soon as possible, don't know if it is the same everywhere. Take care Karen. Xx

[Janemags in reply to 123m]

Thanks Karen, that's really helpful. It really is amazing how the body can bounce back so quickly from such a major event. I'll ask about the chest wrap at my pre-op assessment x

[Alan1966]

Hi, just to say that I had your exact operation in May last year, next Friday is my first anniversary, apart from I had tissue AVR rather than mechanical and I also had descending aorta replacement. I have 3 teenage children and a beautiful wife who were all fantastically supportive. Just thought I would say good luck for your upcoming operation. Some of the comments from other users are rather scary due to their complications but thought I would say mine was relatively straightforward, Hospital was OK, not too much pain (get out of bed as soon as you can and move around as much as possible) and recovery as well has been uneventful! You will have bad days, you will cry, you will wonder why me, but you will also be fixed and be able to enjoy your lovely family very soon. Easy to say but keep positive and you will be alright in the end! x

[Janemags in reply to Alan1966]

Thank you Alan, that really is encouraging. And congratulations on your op anniversary! The pain bit scares me a little, so good to know it was controlled well.

Your procedure sounded quite a biggy, having the descending aorta replaced too. It must have been a very daunting prospect at the time. But great to know that such straightforward outcomes are possible.

I plan to keep moving as much as my body allows, but apart from that I plan to use my recovery time to my full advantage (and get kids and other half to run the house and make cups of tea on demand! I can but dream...)

Hope you have a nice bank holiday celebrating one year in with the family.

Jane 😊