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aortic valve replacement

Jollymiller profile image
34 Replies

hi

I’ve had a congenital problem with my aortic valve and have been monitored for stenosis for last 10 years. I’m now at the stage where I require a valve replacement, this is due to happen next week. At the moment I have very few symptoms, a bit puffed out climbing hills but the scans show severe thickening so the advise was to have it done before I start getting worse and to reduce the s train on my heart.

I’m keen on walking in the lakes and wales so I am hoping that all goes well and in the new year I can start getting back to nearly normal.

Any advice on how to manage my recovery is welcome

Best wishes Brian (70 years old

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Jollymiller
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34 Replies
080311 profile image
080311

Hello Jollymiller,

Welcome to the forum, I had my Aortic valve replaced and bypass done 6 years ago. I was 68, quite unwell in hospital for 7 weeks before being transferred to the specialist heart hospital for open heart surgery.

So first things first, your surgery is major but it’s no way as scary as our imagination makes it, you are so well looked after, you will be given things that you shouldn’t do, no arms above your head, no lifting anything heavier than half a kettle of water, and no pulling or pushing movements. This is for 8-10 weeks after surgery so that your sternum has chance to heal it’s like any broken bone even though we are wired together you need to be careful. You will be given breathing and coughing exercises to do by the physios keep doing them when you get home, they really do help, remember our lungs collapse when we are on bypass so all those little pockets need to be filled out again. Listen to your body, when it says I am tired rest. You will get your stamina back but it takes time. Do you daily walking, it’s baby steps. I used to count lamp posts! Every day I would try and get to the next one I know it sounds silly but it worked!

Don’t be surprised if you are emotional we are given some very exotic drugs and they take a while to leave our symptoms, plus our brain is trying to work out what as happened to us!

Take up the offer of Cardio Rehab, it’s as much for our mental health as for our stamina, being around others that have been through what you have is great, they will say I have such and such you you think me too so that’s normal 😂

You are now a member of the Hearties family, if you have any questions just post and someone will be along to help. There are so many of us that have been where you are standing now.

Every day these last 6 years I have thanked the medical team that gave me my life back.

You will soon be on this mended heart road.

Best wishes Pauline

Jollymiller profile image
Jollymiller in reply to 080311

thank you very much Pauline , you have given me a real boost, hopefully I’ll be reporting good news soon.

Many thanks Brian

Cat04 profile image
Cat04 in reply to 080311

Thanks for this, just been referred to a surgeon as my echo now shows severe stenosis of my bicuspid aortic valve together with aorta dilation & also they will also do an endocardial/epicardial ablation for my afib/flutter at the same time.

I'll remember your advice.

Jollymiller profile image
Jollymiller in reply to 080311

I’m now into week 6 past operation and getting back to normal, just some slight pain in chest where they opened me up but very slight.

It’s taken me till now to get back into a normal sleep pattern but thankfully this seems to have sorted itself,

The care from the hospital was absolutely fantastic,, for anyone worried about the procedure I would say it’s more discomfort than anything else, I’m now looking forward to gradually getting back to my hobby of hillwalking but gradually!

Here’s to life !

Hello :-)

I have not had a valve replacement but Bypass Surgery but wanted to wish you all the best for your operation and I am sure in the New Year you will be taking your walks again you enjoy by the lakes :-)

Hope you will keep us updated how you are doing :-) x

Jollymiller profile image
Jollymiller in reply to

hi thank you so much, everyone has been so uplifting. I’ll keep you all updated

in reply to Jollymiller

:-) x

Shar28 profile image
Shar28

Hello. My husband found a shower stool was really useful for the first few weeks at home. And help washing his hair too. Other than that, just follow the discharge booklet the hospital will/should give you and try not to overdo it too much!

Best wishes to you and your loved ones.

Jollymiller profile image
Jollymiller in reply to Shar28

thank you shar

Blackcatsooty profile image
Blackcatsooty

I had a replacement aortic valve .age 72.

The time in hospital was amazing. So efficient. Staff all knew exactly what was going on. A truly wonderful operation.

I was careful to follow the rehab and steadily recover. I certainly needed to be cared for during the next eight weeks. After three months I was active and feeling on top of the world. Then it was gradual get fit.

The surgeons will give you your life back.

Pauline gives very good advice.

Sooty

Jollymiller profile image
Jollymiller in reply to Blackcatsooty

thank you for your positive story

Flowerfanatic profile image
Flowerfanatic

Hello Jollymiller - I was diagnosed with exactly the same (congenital bicuspid valve) and had mine replaced 18 months ago. All the advice given by Pauline is absolutely spot on.

When you get home, one of those V shaped nursing pillows might be useful (in fact I used 2) as for quite a while you can only sleep on your back and this helped keep me comfortable and semi upright too.

Wishing you all the very best and remember the surgeons do this daily- like falling off a log for them 😉!

Sarah

MickP1000 profile image
MickP1000

All good advice here I had AVR and aortic aneurysm repair 2 years ago and have never felt better. Once you get past 4 weeks post op things improve much more quickly. Follow all the advice and definitely do cardio rehab

Benbobs profile image
Benbobs

Hello my husband is 71. He had a bicuspid aortic valve with stenosis. With no symptoms. He had a stent fitted beginning of September then valve replacement through minimal invasive surgery on the 9th September. His recovery will be different to the full open heart surgery. He is doing really well. Part of the recovery is in his words 'going from fit to frail'. Set small goals/targets. Try not to be too eager or too hard on yourself. It is painful measure your recovery by how you were feeling a week ago not yesterday. It is a roller-coaster. You will get there. Sending you lots of positive and healing thoughts. Good luck. X

Livelovelife56 profile image
Livelovelife56

Hi Jollymiller

I have no heart problems. Im on this group as my son has HCM and aortic root dilatation. So i can not give any support in that way. But i wanted to say good luck with the surgery and listen to your body during your recovery 🙏🏾 when your able let us know how you are. There are some amazing people here who despite their own needs take time out to reassure or amswer any questions we have. Good luck

Hi Brian, I had my aortic valve replaced on Monday, I am hoping to be discharged today. The first 48 hours are the hardest but you quickly see improvements. Short term recovery I would say do your best to follow the physio's breathing instructions, they really help. Long term, I am yet to see how things go but I intend to do what has been suggested, go to the cardio rehab and build up my stamina again. Take your time and you will soon be back to doing what you love.

I wish you all the very best for your op and a speedy recovery xx

PCL023 profile image
PCL023

Hi there. Firstly get it done, your in good hands, if caught early enough this is the best time to replace, the folks know what they are doing 👍. As for recovery afterwards, do everything they say, make sure to join the rehab sessions when offered, and also to continue with this at home. The cardiac rehab folks will help to advise you what to do. Had my aortic valve replacement last September, other than a few wobbles due to some ectopic burdens and impairment of the Left ventricle caused by my old very leaky valve, I’m back up to pretty much normal operating “speed”. Other than that do everything Pauline and the folks below say 👍. This way you will be on a good road to recovery. Best wishes Paul.

Wellington19 profile image
Wellington19

Ihad mine done at st barts in December, you will feel a lot better after a couple of months, i am 73

Yumz199725 profile image
Yumz199725 in reply to Wellington19

Wow Wellington hope your op went well I'm with barts aswell have been for 8 years. How was the care on the ward? Haven't stayed in at St barts yet just have yearly Checkups I have congenital heart disease, bicuspid aortic valve, ventricular septal defect and moderate to severe aortic regurgitation so quite alot going on but stable at the minute and I'm on verapamil 40mg.Take care.

Wellington19 profile image
Wellington19 in reply to Yumz199725

Nearly a year on you will be well looked after, am fitter than i have been in years am 73

Yumz199725 profile image
Yumz199725 in reply to Wellington19

Aw that's amazing to hear so glad your doing so well. And when it's my turn I'm it's very reassuring to know I'll be well cared for I think that's where most of the anxiety comes from.

Cyprus12 profile image
Cyprus12

Hi Jollymiller

I had stenosis of the Aorta and my symptoms went down rapidly after diadnosis. I could only walk on the flat. I was a fit 52 year old, suffering from Asthma since 18 years old.

I had mechanical valve due to my age, as I did not want to be opened up again. My recover was slow and I did have issues with my muscle pain in the chest, as I was clamped open for 9 hours. To full recovery, without any pain when under strain, it took about 18 months, but I ski/swim and use my sternum faily strenuously. I am back, fitter and healthier, and NO asthma!! Never had it, it was all due to my valve! I consider myself lucky not to have dropped down dead at anytime.

I used vasaline to heal my scar in the early days. Looks lovely now 😉. I used my teddy (rolled up towel) for months after for support. Excellent advice about handles in showers, bathroom, baths for support. Drink loads of water. Start your fitness plan with walks, a little further each day. Listen to your body. Don't rush to get back to full fitness, it will come. I have my life back and I live it to the best with my family and friends. Very best wishes to you.

Digger0 profile image
Digger0

Hi and welcome. I can't advise on valve replacement, but I'm like a new woman after the repair of the congenital hole in my Atrial septum. I was stopping after 200m on a slope (and living in the Peak District everywhere is slopes!) but I can nor east do 7-8 km in the dales! I was treated at Liverpool, where are you being sorted? My repair was via my groins - in and out in 24 hours! Good luck, let us know how you get on.

Bookworm60 profile image
Bookworm60

I'm 10 months post same op. Its hard going for first month but nowadays I often forget I had it. Personally I found most of the problems post op were in my mind ...I was really anxious when I first went home and needed a lot of reassurance. This group and the BHF nurses were a godsend. Good luck with it all ❤️. Penny

Thonglor profile image
Thonglor

Best wishes with your operation, but as so many have said, the anticipation is worse than the reality. I don't know if my experience will be any comfort, but I had triple by-pass plus aortic valve replacement 10months ago at age 82. Within a couple of days the rehab people had me (reluctantly) walking around the hospital corridors, at first with supplementary oxygen, then quickly without but separately at hand in case needed (which it wasn't) then without at all. After about 3 weeks I was slowly and carefully stepping around outside on the flat, with my wife by my side, as she was convinced that I would fall flat, which I might well have done. This fairly quickly progressed to longer and more challenging walks, though still no hills of any significance, but by 6 or 7 months I was going about normal outdoor activities, including stiff and rather precarious hill climbing, without any concerns.

The best advice that I was given was that the speed and depth of your recovery depends largely on the effort that you put into it. So I tried to always do another round or two of the hospital corridors after the rehab asked me if I was ready to stop, and similarly after leaving the hospital. Nothing excessive--as others have said, you do need to be careful not to exceed your limits, but nonetheless trying to make sure that I steadily progressed without plateauing.

peterosgood profile image
peterosgood

I had aortic valve and aorta replacement surgery in December 2020. I was a fit and healthy 55 year old, having played sport all my life, I wasnt even aware I had a problem until November ifnthat year, turned out inhad a bicuspid valve.

I had a mechanical valve fitted as I didn't want to ggomtjrough surgery twice.

The recovery is slow to start with and for meme it was hard, I wanted to run but could hardly walk!

I to used a V shaped pilllow and still sleesleep with it. My wife works in adult mental health and encouraged me to keep a daily journal of my recovery, how I was feeling, how I coped, how far I ealked etc. I found this really useful on days when I didn't feel well to look back and see how far I had come.

So 22 months later I'm back at work and have been since June 2021. I work for a landscape gardening team so spend most days either mowing lawns or at this time of year, hedge trimming which as you can imagine is quite physical by nature.

If I'm honest, I'm not quite the same and I do find myself getting quite fatigued but overall my health is pretty much back to where it was.

Good luck with the operation, your team will look after you and then take part in your rehab sessions.

Before you know it you'll be walking miles 👍👍

billandpam01 profile image
billandpam01

Hi. My experience was very similar to yours - I'm 75 and my valve was being monitored for stenosis. Like you I had very few symptoms. A year ago it got significantly worse and I was told I would have to have a replacement. At the preop appointment I had an angiogram and it was clear I would need a bypass as well. I was kept in the Manchester Royal Infirmary for 3 weeks and almost exactly a year ago today I had a double bypass and an aortic valve replacement. So. The important thing is that in a way, this is almost routine surgery. Your surgeon probably does more open heart surgery than your dentist extracts teeth. They know what they are doing and they are very good at it. When you wake up you are going to be the very sore when the anaesthetic starts to wear off and coughing is very uncomfortable but it's no worse than that. For me the worst things were a) constipation and b) a couple of loud mouthed, demanding idiots on the ward (patients) who wouldn't shut up, complained all the time and kept the rest of awake for half the night ! So take your earphones in with you and leave your stiff upper lip at home. And don't be shy about asking for laxatives. You may well find that if all goes well as it almost certainly will, you'll be discharged home sooner than you expect (they need the beds) so get your bedroom ready. Turning over in bed can be very uncomfortable. My family got me an electric reclining chair which was great for the first few weeks but not essential. Take it easy, read the literature they give you and if it hurts, stop doing it. If you are offered cardiac rehab ( exercise classes and lectures) take them. What I would say is don't assume that follow ups , tests etc will be handled routinely. I've had to chase things up. The literature for example says that you will get a follow up review at the hospital after 6-7 weeks. I've just had mine, just short of a year later! and after chasing it up. You need to be polite but firm. And dogged. PS. if they put you on Ramipril and you develop a persistent cough - check with your GP. Ramipril cough is not uncommon and there are alternatives. PPS make sure that your dentist knows that you've had a valve replacement. You may need antibiotics if you have work done on your teeth/gums. Naughty streptococci or summat.

presely profile image
presely

Hello, i had a new aortic valve last year Aug 27/8/21 at the age of 63 i also had no symptoms. I decided to go for a Resilia tissue valve after the op the first couple of days was ok and I was soon up and about walking the ward, i just followed the doc advice to the letter and five days later I was home, now I feel great as if it never happened. Good luck a bit scary but the surgeon and nurses will but you at ease.

Regards John

Wizard_of_Oz profile image
Wizard_of_Oz in reply to presely

I have same valve and same recovery experience 😁

Wizard_of_Oz profile image
Wizard_of_Oz

Hi Jollymiller, all great advice given by others. I am 7 months post AVR and feel great! Biggest challenges in first few days / weeks are lung pain post op - use a small pillow clutched to your chest to relieve coughing / sneezing etc, and muscular pain from chat incision. These rapidly improve - 1 week post op you will feel so much better than in day 2, so remember this. One thing that no-one had talked to me about in advance, and is worth discussing, is the technique used to detach heart wires before hospital discharge - these are atta he’s to your heart during the op to allow an electric shock to be given if you go into AF post surgery. 2 options appear to be - pull the wires to detach them from the heart, or curt them at the skin and leav them inside you (which sounds scary but is less risky and is what my surgeon practices).

Remember Open Heart Surgery is a major op BUT is common, and the system of support and monitoring in hospitals is excellent. Try to go with the flow, sleep a lot, enjoy the hospital food 😂 and take your time.

4 months post op I was climbing mountains again! Best wishes.

Leonardo1 profile image
Leonardo1

hi - I had aortic valve replacement in December - and I am fitter and healthier nearly a year later that I have been in a long time . Listen to the staff do what they tell you !! get up - walk walk walk get moving ! It’s not as scary as your brain is telling you - it is stressful on your family but you will come through and be a much better version of you - but do what your told when in hospital because they are the experts !!

Good luck good health the beat goes on !!

Hi Jollymiller

I had my AVR OHS January 2021 under full lockdown. I was 66 then and was doing C25K. Yes, we do love our abbreviations!

It was a complete shock as the only symptoms I had was puffing up the hills and a dry cough. Long story short they got me into surgery in Leeds as I was deteriorating fast. If you have severe stenosis you must tell your cardiac team if you are feeling worse. Its important. Don’t sit there being brave.

You’ve had some great advice here. The practical one that helped me is arranging the house, kitchen in particular and bringing everything down to shoulder level or below. You MUST NOT lift your arms above shoulder level after surgery. You put stress on your sternum and you want it to heal quickly.

The shower stool as someone mentioned was a great thing to have. Sitting there with the shower head in my hands and letting the water cascade all over me with the stool for support was bliss. Hubby washed my hair. Those arms again!

When I was a few weeks away from surgery this place was my comfort. Good advice and plenty of it. If you’d like please look at my older posts. Too many to copy here, and you will get all the gen on how to survive AVR.

I’m now 69. Walking the Anglesey Coastal Path with my sister when time allows. I could start jogging again but don’t feel the need. Walking briskly on the hills of West Yorkshire is enough for me and you get to view great scenery and appreciate what a new replacement valve can do to your life.

Good Luck

Let us know how you get on. We DO really want to know.

Maisie

Love2me profile image
Love2me

Hello! I had a congenital defective septa muscle closing my aortic and mitral valves; these cardiac problems were discovered when I was forty-five. The cardiologist and I (experienced cardiac nurse) monitored it close for twenty years. Then, my septa muscle threaten to close my aortic valve. The cardiology appointment with my cardiologist was frightening as I was to have the septa muscle trimmed, aortic valve replacement, repair of the mitral valve, and insertion of the pacemaker due to the right side of my heart had blockage. The cardiology team gave excellent instructions during the preoperative, postoperative, and discharge to home. When you are home, please have someone be with you as you will be limited to lifting and driving for a particular moment for at least the first week home.) Following the directions for walking and going to the rehab center is essential. It is now three years ago tomorrow (October 10th) that I had my open heart surgery, aortic valve replacement, repair of mitral valve, trimmed the septra muscle, and insertion of pacemaker. I actually feel better at 65-year-old than I had as a forty year old. You will do well just follow the directions and live life to the fullest. Good luck. I am willing to listen if you want someone to listen as we can connect on Google Meet or Zoom. (Please do not be surprised if you get emotional - I was amazed how my emotions are more active than before surgery.)😇😪😘 I pray all will go well for you.

morpheo profile image
morpheo

Jollymiller, this is me 6 months after my AVR. I was on this horse as soon as I could safely drive again. Have the op, take the meds, do the cardiac re-hab, which I really enjoyed and get on with it.

Horse jumping a fence

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