Hello, this is my first time posting. I'm so glad I've found this as I've been looking to connect with others going through the same or similar things. I was diagnosed with Aortic Stenosis several years ago (Bicuspid valve). It came as a bolt out of the blue as I'd always considered myself to be a fit and healthy person and was conscious of fitness, diet etc. I know from reading the posts, it was the same for a lot of people. So it takes a lot to get your head around it. At the minute I'm on the urgent waiting list for valve replacement surgery. As you know with Covid, all other surgery has virtually stopped. I'm living in Northern Ireland and even pre Covid we had worst waiting lists in UK. I know there's no alternative but replacement and it scares the life out of me - open heart surgery - even saying it causes anxiety levels to increase! It's good to read posts from people who have come through it and are doing well.
New to the Community: Hello, this is my... - British Heart Fou...
New to the Community
Hello Paws34
Welcome to the forum, it’s a great community but not somewhere we ever thought we would be joining! I had Aortic valve replaced and bypass 4 years ago, came completely out of the blue. How could my body be letting me down it never had before. But here I am 4 years on and living my life grateful every day to the medical team that gave me my life back.
As you say just the words open heart surgery gives us all pause for thought. But remember your medical team do this as their day job. You will be well looked after, no pain and if you follow all the instructions you are given after surgery you will be back to living your life before you know it.
If you have any questions just post and someone will be along to help, you are now a member of the Hearties family. We can lend an ear or even give you a shoulder to lean on.
Best wishes Pauline
Thanks Pauline for the encouraging words. It helps a lot and gives me hope.
Pat
Hi and welcome,
I had my aortic valve replaced by OHS at the beginning of January so just over 8 weeks ago and doing really well now.
It’s really scary I’m not gonna lie but I found the actual experience much easier than I expected and far far less painful than I thought it was going to be. In on the Monday, home Friday afternoon and only on paracetamol for pain by then (and didn’t take many of those either).
Everyone is different, but just take it in your stride and you will be fine. Just remember to not lift any more than they tell you to.
Hope it all goes well and stay safe
Sam
Wow that’s great Sam. Good to hear pain wasn’t that bad either and paracetamol was enough. I hope it’s the same for me! By the way what type of valve did you choose?
Dear Paws
I had biscupid aortic valve with advanced stenosis. Now its all done and finished.
The worst bit, by far, is the waiting. Then, once i walked in to hospital, everything was fine.
I had to travel in to London as every hospital near me had closed for covids. But once there, it made no difference because there were no visitors allowed.
My op was 2nd May and by mid August i was gardenning, walking and driving.
Staff were just fabulous. I guess they know exactly what patients require as the procedure is commonplace for them.
Ask anything and many of us are here for you
Colin
Hi Colin reassuring to hear what you said. Gardening within 3 months, that’s great. I agree with worst part being the wait and every twinge or discomfort is worrying. Were you experiencing any pain, discomfort before your operation? Also what valve did you choose?
Sorry for the delay, i am not too competent with the websites.
I was in a lot of distress, but no extreme pain. utterly exhausted 22 hours each day. Always tired. I could not function for a few weeks.
To be blunt i was close to death. Luckily i have a very strong heart and it kept going when my aortic valve was done for..
I chose the edwards resilia valve. Eg not mechanical. I also chose OHS and not TAVi. I had two of the very best surgeons advising me as to what to do. I was 72 years old. What came across from the experts was that everything is improving fast, but that there is no history to prove whats best.
I believe the valve is available on the NHS. I was quoted £24,000 for the valve alone, but it as less than half that.
Try not to worry about twinges and discomfort.
Unlike many medical procedures, AVR is either required or not required.
And dont use google, other than as a means to find the nhs.
Good luck.
Colin
Bicuspid valve is the most common of inherited heart valve conditions, so quite a few on here have had same.
Diagnosis in my case not entirely out of the blue as brother and sister had both had recent diagnoses and I was advised to get myself checked out. I was asymptomatic, or so I thought. My GP ran a stethoscope over my chest and said she heard a 'very loud murmur'. That murmur caused me some 'celebrity' btw as on an unscheduled stay in hospital (chest pain/breathlesness) and medical students almost queued to listen to it as it was very loud! Long story short - within 5 months I had had an AVR. As others say, its the waiting that causes the issues.
Whilst waiting I took my lifestyle by the scruff of the neck and shook - I was pretty healthy anyway but lost a few pounds, overhauled diet, walked frenetically to get fitter (recovery quicker the fitter you are) but it was a pretty jittery time. Try and avoid consultations with Dr Google - often out of date and inaccurate. Stay in touch with us instead!
The operation and stay in hospital was like clockwork and once you are there and the whole process gets underway you are entirely in their hands, and believe me they make you feel safe and comfortable. Its their job and they do it outstandingly well. Its not comfortable, but it was not painful. I was home 5 days later.
You will see from other posts that I have not had such a great time recently - but other issues are another story - the point here is that waiting is the problem time, once with the hospital teams you will be fine!
Stay in touch with us and let us know how you get on
Frances
Hi Frances thank you for your encouraging words and sound advice. I agree with the Dr Google thing and now that I’ve found this forum I’ll be fielding all my questions to you all. It’s a brilliant find and in the few days I’ve been using it I feel a bit more comfortable about the procedure. Mind you when I get the notification for admission I know my stomach will churn! Hope you get things sorted out. Take care
Hi Paws34
My story almost the same as yours except mine was aortic valve needed replaced. I was put on urgent list in August 2018 with an expected wait of 6 months but I got a call in November with a date and had the op on 15th November in R VH in Belfast as I too live in Northern Ireland. I could go into great detail, but all I will say is the dread was much worse than the reality. While the whole experience was (I found) quite difficult, emotionally as much as anything, it was survivable! I hope you will get your call soon. In the meantime take care and stay safe.
Eileen x
Hi Eileen I’ll be having mine at RVH also. I don’t expect to be called until the hospital admissions for COVID settle down although that’s starting to happen which is good for everyone waiting for operations. Thanks for getting in touch. Pat
Welcome Paws, this is a good site so many of us have done it...and some even have the tshirts! I will be having my first anniversary next Tuesday. I am much fitter than I ever was. I must admit my favourite group is on Facebook. UK aortic and heart defects pre and post surgery. Tonight we are doing a question and answer zoom for people who have yet to have surgery. Of course nothing beats medical advice ...but this one you have to have been through to understand.
...they thought I had a bicuspid valve but when they took it out it wasn't just badly stuck together. You will get there.
Hi
Welcome to the forum. You have had some lovely replies to which I cannot add very much other than to say that the wait is the worst.
I was very anxious myself and that’s when I found these lovely people who helped me so much during that time. Your head is full of questions but if you’re anything like I was, I couldn’t form them into a coherent sentence.
I am now just 5 weeks post OHS for AVR and doing very well. Today I went for a 45 minute walk and also pottered about in the garden. Doing nothing really but just being out there was such a joy. I saw my surgeon yesterday who is so pleased with my progress and recovery.
With the help of the Hearties on here what helped me most was planning what I needed before and after surgery. If you look at my posts you’ll see what I mean. It took my mind off the anxiety and put me into planning mode. It really helped. Lists of what I needed to get and how to help myself cope when I got back home again. Retail therapy !
You will be surprised how motivated you get when you start!
Good luck and let us know how you get on.
❤️Maisie❤️
Thanks Maisie for all the great information. Encouraging to hear that at 5 weeks you’re able to walk that far and potter in the garden. I agree finding this forum has been invaluable and everyone is so helpful. I looked at your posts as suggested and got some brilliant tips for pre op preparation. I’ve a long shopping list now! It helps me to feel prepared. Keep well and take it easy. Patx
Hi Pat
Yes. I was given some great advice here.
Don’t forget the bed wedge for sitting up to sleep. I’ve only just managed to lie flat a few days ago. It’s still hard to get up from that position. I roll out of bed to my knees on the floor and then stand up 😂 Gymnastics first thing in the morning!
My son is having a nose operation in a few days so I’ve bought one for him as well. Helps with breathing in all sorts of conditions.
Happy shopping 🛍
❤️Maisie ❤️
That sounds good. Where can you get them from? Didnt5hink about how hard it might be getting out of bed! Better start practicing x
😂
I got mine on a well known auction site 😜
If you check on their business addresses you’ll find that the best ones are vat registered with uk shops.
Mine were delivered within a few days and I’m very happy with them.
£7.99 V Pillow & case
£12.95 Wedge both with free P&P
Happy 🛍
❤️Maisie❤️
Not what you're looking for?
You may also like...
I'm new to this community and my first post.
Hello from a new member! :-)
New to this...
Recovery after new valve
All new and fairly young
A new path - 3 Months after Aortic Valve and Root Op
Aorta Valve Replacement within 2-3 weeks
New very worried member
Not prepared for the anxiety that follows heart surgery
