I'm not sure what to expect joining this forum but recently been told my aortic valve replacement will have to be done soon. Born with aortic stenosis bicuspic value, and as many others, was told surgery is inevitable. However, I wasn't expecting this to occur at 34 years of age. My wife is also expecting with our first child, due in Jan2022. Condition has been deemed severe, moving from moderate. My consultant (NHS based) suggested to do another echogram in Feb 2022to confirm and be ready for surgery in March2022. Are the only symptoms to loook for breathlessness? I do get random pains in the chest but subside over time, a concern?
What could I expect going though valve replacement?
Any thoughts would be appreciated, super nervous!
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Dear ShelbycorpI too had a bicuspid valve and stenosis.
Many people are bicuspid.
I became a little breathless but then totally exhausted.
But I had been perfectly ok for 70 years before this exhaustion kicked in.
The good news is that, unlike many serious medical problems, you can have your valve replaced. The procedure is positive and recovery is wonderful because you can feel the improvement every few days.
It is major surgery so we do have to take it very easy for a while.
I have noted you are due to be a dad early in the new year. Congrats.
However, you need to have your op.
The op is preceded by three checks. Then about one week in hospital.
Then you will need someone to look after you for several weeks whilst you recover. And hopefully you will get rehab.
Looking after your child is not going to be possible. You must rest to allow your body to recover.
My resting was 20 weeks, but you are much younger and may recover much more quickly.
Lots of forum people will tell you more. They are a good bunch of people.
Thank you for your reply Colin, much appreciated! Also surprised how quickly others and yourself responded; really positive and helpful for easing the worries.Thank you the congratulations, hoping will still be able to bond with baby and not miss too much but yes, as others have mirrored similar, recovery is very important!
Given how many hours you will be sedentary, you should bond very well with your baby. It is however even more important than ever that you should do as the medics tell you so that you rest and slowly recover.My much adored cat liked snuggling up and keeping me company.
I'm also awaiting AVR and have so many ups and downs. I was unaware that I was Bicuspid until 2 months ago but was getting breathless when exercising..
Don't Google things but get advice from those who know what it's like, on here and also I've joined a Facebook group for Aortic conditions and they have been amazing. They have a Zoom chat every 2 weeks and they reassured me when I was at my lowest.
Let me know if you want the details of the group, but in the meantime look after yourself and good luck
Hi Joanne.Thank you very much for your reply! I am usually asymptomatic but feel dizziness on occasion. But without the breathlessness, the doctor's aren't linking it to the value.
How long have you been waiting for the replacement?
Yes, the FB group would be great too, thank you! If you could share the details, I'd be grateful
Speaking to others going through a similar journey is really useful and have found it has helped, albeit only beginning to post and read over the last few days.
Welcome to the forum, I am sorry you are having to face this at such a young age.
I was 68, that was 5 years ago and am grateful every day to the medical team that gave me my life back.
Firstly the surgery is nothing like your imagination is making it, you are so well taken care of yes it’s major surgery but remember you medical team do this as their day job!
You will spend a couple of days in ICU and then a couple in HDU then back to the cardio ward. I was in for 7 days then home, for the next 8-10 weeks, no lifting anything heavier than half a kettle of water no arms above your head and no pulling or pushing movements. You have to let the sternum heal we are wired but you need to be careful. You will be given breathing exercises to do by the physios in hospital keep doing them when you get home they really help, when we go on bypass our lungs collapse so they need a little help to fill all those little pockets out again.
You have something so beautiful to look forward to with the birth of your child, many congratulations.
Remember you are now a member of the Hearties family and we are here to listen or lend a shoulder to lean on if that’s what you need. Any questions just post and someone will be along to help.
Thank you so much for the reassurance Pauline! It's great hearing from someone who has gone though it and provide an insight of what can be expected without "medical goggles" on, so thank you!Thank you for your best wishes and congratulations.
I truly feel welcomed, and as stated above, really appreciate the prompt replies and communications, super helpful.
The breathing exercises seem to be very important for the recovery process, will keep that in mind
If you follow all the instructions you are given you will be fine. The breathing exercises are really important that and gentle walking gets our lungs working properly again.
I’m the same age as you and literally had my aortic valve replaced with a mechanical valve 3 weeks ago. It’s easy mate don’t worry about it. You’ll be up and walking about 3-4 days afterwards. You’ll have pains but they’re controlled, little bit useless to begin with as you can’t do much for yourself like shower etc. I was in for 12 days post surgery due to picking up a chest infection which I was given antibiotics for. The worst bit for me was how uncomfortable the hospital bed is and it’s given me a bad back so considering I was cut in half and the worst but being my back then I don’t think it’s too bad. Not sure which valve you’re going for but I chose the mechanical so I only have the procedure once but this also means I’m on warfarin the rest of my life and can’t get drunk anymore which I think is a small sacrifice. All will be fine and the bonus of having it young is we heal quicker and will reap a lot of the benefits. I’m looking forward to week 12 when everything is healed and I’m feeling like the new man they say I will.
Hi JamieThanks for the reply mate! Really helpful to hear from someone who's just gone through the journey and providing the reassurance, so thank you.
How did you manage not being able to shower etc?
Haha if only they had a lovely temper mattress. Sounds like your recovery has been really positive, great to hear!
I've been advised to go for the mechanical aortic replacement, due to young age, should prevent having surgery again but yes, the mention of life long Warfarin needs to be discussed. Overall research states the benefit outweighs the changes in life. Similar to you, I may miss having a few drinks but it is definitely worth the sacrifice. These discussions are yet to be had with the cardiology team.
Do keep us updated on your recovery mate, sounds great so far.
Hello mate. Bed baths are the way forward to begin with till you have more mobility. The nurses have seen everything before so they know what they’re doing. I’ve only now managed to get a t shirt on as you can’t lift your arms very high. All the stitches are dissolved from my incision and there’s still some pain but it’s manageable. Pack dressing gown, shorts, joggers, button up shirts and zip up hoody’s as that’s what you’ll wear for a few weeks.
I was more excited about mine than nervous as my condition was found when I was 2 years old so my bicuspid aortic valve lasted since birth and I’m glad to get it done. Your diet doesn’t change much I still eat the same but don’t drink or smoke anymore. Just try and be a bit healthier.
You’ll be fine either way. Where is the procedure going to be done?
Hi
First of all a huge congratulations for you and your wife. Such a joy lies ahead for you.
I’m going to say though, that you may need help around the house with a very young baby and you going through OHS. Your wife will need to look after herself too. Lifting etc is something she should be doing so early on from childbirth and you won’t be doing it either. Lack of sleep will impact you and her. Could someone move in for a couple of weeks to support you both?
I’m a bit older than you so your recovery will be different. The leveller is OHS. Not easy but you are young and strong.
It was a shock to find I needed surgery. I was severe when first diagnosed. I had no idea. My symptoms were, struggling with walking uphill; a dry persistent cough; feeling older and tired. I honestly thought it was my age. I started jogging doing C25K to get fitter 🤣 Bad move! Nearly collapsed on week 7.
I had my AVR in January mid pandemic and I have to say was terrified. Found this site while waiting for surgery and the support was unbelievable. I asked what I could do to help myself before and after. The answers were so practical and friendly.
Please look at my previous questions on here and read the comments. I can’t repeat them all on here as the list was endless. This site put my head in the right place beforehand and held my hand afterwards. Just the the ❤️Hearties!
Do let us know how you get on. Another thing mentioned to me on here at the time was, if your symptoms get worse between now and your date for surgery you must tell them. It happened to me and the advice given was spot on. They got me in for surgery earlier saying it has to be done now!!
11 months on and I’m a fit and well 68 yr old but I won’t be jogging again!! 😆
Good luck
❤️Maisie❤️
Hi, It's been a while since I had my first AVR. I was 33years old at the time, and have had OHS on two further occasions since. The first time was the best of my ops and the easiest to recover from. At your age, recovery should be straightforward and quicker than you may think. The main difference from my experience, is that my son was already two years old at the time, whereas you'll have a new born which will restrict you in some ways.
I had a Tissue AV originally and now have Mech AV/MVs. The tissue valve lasted 19 years, but, I knew I would be having further surgery at some point, which I was happy enough with. You should look at the pros and cons of each type, given the new gen of valves and surgery techniques. There is a fundamental difference between the two, but, that comes down to what you want in the coming years. I'm fine with the choices I made and have no regrets, although I do have a preference.
I've been on Warfarin for 8 years and never had any issues. I still drink, but, not overdoing it for the best part. You get to know what you can and can't do after a few months.
Just to add to a few posts above. I was 49 when I had my AVR, now 52. I had a mechanical AV and like you was born with a bicuspid valve. I didn't even know until I started suffering from chest pain, by then I was already at the severe stage as I was reasonably fit and my heart could cope with the reduced flow.
I was in Bristol, but the op and care, I am sure, is the same all over. I was only in ICU for about half a day and then moved to HDU for the remainder of my stay, about 7 days in all. I really don't recall being in much pain at all, but don't be brave the drugs are there. I was up and walking after two days, but I wanted out and was told that walking helps and they like to see you doing it. The worst part for me was the lack of sleep. Too many snorers and other noises. The beds also are that comfortable.
After I was discharged I suffered a bout of Atrial Fibrilation and was back in again two days later for a night. This is quite common and they will explain it to you, but I forgot. The day it came on I just felt crap and weak. My wife too my to A & E, where I was instantly in and then kept over night.
2 years on I am certainly better than I was and glad it had been picked up and fixed.
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