My AVR TALE

Hello all. I thought I'd share my surgery story as it helped me pre-surgery to read others.

I went in on Monday 20th November to St Barts and was operated on around 1:30. My last memory before being 'out' was going down to theatre (the premed must have knocked me out). According to hubby, surgery ended around 5 and when he came in at 8 I was fighting to get the breathing tube out and I do have a recollection of this; trying desperately to communicate - horrible 😔 . Struggled with morphine (was sick a lot), I was out of bed for a while and in a chair by Tuesday morning and by Wednesday pm was up on a main ward looking after myself although I did feel awful. I tried tramadol too but felt 'off my face' so by Thursday was only taking paracetamol.. The worst thing for me was not pain, it was feeling very wobbly, brain complete mush, zero appetite until Friday and the swelling. I put on 8kgs pre and post op and I literally felt like I was bursting! Getting comfy in bed was no fun either. Friday saw the emotions kick in and I was a sobbing mess - not helped by the fact that it was a 7 hours round trip for any visitors which would cost a few bob so I told people not to come (except hubby who stayed a lot and kids came up once). I wish I'd been more selfish as I felt very alone and down. I made hubby go home Saturday pm and not return until Monday lunch to get a break and my Sunday was very emotional.

Anyway, was discharged on Tuesday pm. Since being home I have felt 'ok'.

The surgeon told me that my valve was so severely stenosed that it would be one of his Pub stories! and when I asked what would have happened if not operated on he said I could have developed symptoms of heart failure which would have lead to emergency surgery or I may have dropped dead! I had very few symptoms and I probably wouldn't have even gone to GP. Thank goodness my over cautious GP made me go fo an echo when she noticed I had a heart murmur four years ago! Mind you I'm quite pleased I never knew I was born with a dodgy valve as it may have worried me over the years and to be very honest I have led a fun filled, active life with zero health worries.

So now, I'm on the good old rat poison and anaemic! Bp was always low in hospital and I do keep having wobbly spells at home. Appetite is back and last night I slept so much better. Pain is virtually zero but my chest shoulders and neck are sore - kind of like I've done lots of decorating! So that's me! 😊

Claire x

[Mirador19]

You are sounding very positive Claire, I can't imagine what you have been through but you sound as if you are coping with it brilliantly. I am sure your story will help lots of other people who are going through a similar thing.

Joan x

[Fredders]

Hi Claire

So pleased to hear your op went okay. I can empathise with the chest, neck and shoulder pain. I had my AVR on 7 November but had heart block so had to have a pacemaker implanted on 13th. Unfortunately that op resulted in me being in absolute agony across my shoulders making it very difficult to sleep, even with tramadol, paracetamol and oromorph! Now my chest/ribs are sore, which is hardly surprising considering what we go through during the op. I have good and bad nights, some nights I can't sleep and other nights I'm out like a light.

I haven't had the mood swings but the anaesthetic does play havoc with concentration, memory, taste buds etc. I'm just about back to normal now.

I'm also on warfarin for life. My clinic supports home testing so my husband has bought me a home testing machine. Clinic is going to check it against theirs next week to make sure they have the same readings, then they'll show me how to use it. Once I start using it I just need to do the test, ring them with my reading and they tell me the dose I need to take. Will make life much easier once I'm back at work.

The worst is over so onwards and upwards. 😸

Take care and hope your recovery continues to go well.

Wendy x

[Hidden in reply to Fredders]

Goodness! What happened to you sounds horrendous. Major surgery twice in a few days? I would have been so distressed. Hope your recovery continues well too. I've just walked round the the garage which is the nearest place to get a paper, it's about three minutes walk normally and just took me fifteen there and back. Poor dog isn't used to having me home all the time and she keeps looking at me very expectant for a walk!

[Fredders in reply to Hidden]

Thankfully the surgery for the pacemaker is done under local anaesthetic, the down side was that I was laid flat on my back, no pillow, which is what aggravated my upper back and shoulder problem.

Must be really hard not being able to take your dog out, I've got cats so don't have that problem, only thing I have to be careful of is them lying or jumping on to my chest at night!

Sounds like you're doing all the right things, you'll feel back to normal in no time.

Wendy

[Johnnyb10]

Hi Claire,

Hope you continue to recover well, I had AVR in August 2016 caused by Lupus which I suffer from, I am a regular runner and had no symptoms. A heart murmur was found at a routine rheumatologist appointment and an angiogram also discovered a blockage which meant a bypass also. I went down in early morning also in Bart's and was woke up at about 6 pm, I then discovered it was 6pm the next day. By the end of October 2016 I started light jogging and this year I was back running 3 times a week. On Saturday in the 5K Park Run I ran my fastest times in the 5 years I have been doing Park Runs. Clearly the operation must have worked and Bart's are an excellent hospital

Johnny B

[skid112 Heart Star]

You are doing really well, the chest shoulders and neck will continue for a while yet but eventually it will ease. Keep it up

Mark

[Hidden]

Hi, great to hear you are doing so well and sounding so positive about it, take care and keep us posted how things are going, hugs char xx

[KazSumm]

Hi Clairebear281

So glad you are on the road to recovery. I too was glad that I didn’t know I had a dodgy value from birth, although it was a shock to be told I had the biggest heart murmur they had heard and they didn’t know how I was still standing I was not allowed home . My op took 7 hrs bad case of chronic Stenosis and work done on descending Aorta. Sorry that you had such a bad time with medication, I was very lucky in having no reactions at all . The pain in your neck and in between your shoulder blades is the worst, after week 1 at home I got a home massage , she gave me a gentle massage on my back,neck and shoulders and also a Thai foot massage the relief was amazing, I did ache the next few days but never had a problem since, everyone was saying I shouldn’t do it but I’m so glad I did. I also took sleeping tablets for the first week and I had the best sleeps ever which really aided my recovery. I know I bang on about depression but please be aware you probably will encounter it and I thought from reading the information books that it would be a passing mild few days , I’m 17wks post op and still can’t shake it off, but help is out there and I’m getting some. The first 8weeks are important not to Over do things and let others help, I got severely told off because I hoovered week2 bad girl lol

So here’s to a bright and healthy future take care Kaz❤️💕❣️

[Sophielou1]

Hi clairebear glad to hear youre up and walking, what a terrible time youve had:-(. My name is Sophie and I've been diagnosed with bicuspid aortic valve, again had it from birth but found out two years ago (I'm 35 now) following echo as I was having chest pain. I was quite happy not knowing I have this as I'm now thinking about it lots! My valve is normal at the moment but getting checked every three years. I keep thinking I won't bother having surgery as the thought of it make me feel woozy and id be one of those that isn't straight forward knowing me. It's great you're now at home and getting through this next chapter surrounded by family. I guess none of us know what is going on inside and treasure each day. Wishing you a very speedy recovery x

[Hidden in reply to Sophielou1]

Thank you sweetie. 3 yearly checks is good as it means it's all good at the mo. Try not to think about it, I didn't let it enter my head at all until it got bad enough for the surgery. Please do message me if you want to. Millions of us are proof the the surgery isn't 'that bad' and now we are mended forever! X

[Sophielou1]

You're right. I need to remain optimistic, let's face it I didn't even know I had this! Why as humans do we worry about what hasn't happened?! Wish I knew... so glad for science and doctors that work tirelessly! My concerns are being unable to do what I love, exercise and be independent. It's not a weakness to need assistance now and again I need to remind myself of that :-)....hope you're having a good evening x

[Hidden in reply to Sophielou1]

Believe me, you won't be out of the exercise loop for long and when fully recovered I bet you'll have more stamina and have an improved performance. As for independence, after day 2 no one has done anything for me (personally). Obviously I'm not running around cleaning and cooking all day but I'm getting the washing done, emptying the dishwasher etc - all the easy jobs. I have grown up kids and they have loved to help their mum who has always been so strong. I reckon I'll be back to normal in no time ..... she says......

[Sophielou1]

Can I ask did you have any symptoms prior to surgery? I've been told I'll be 'out of breath' which I find hard to imagine. You seem a very positive and determined person, you'll be doing your usual soon I bet. My son is only 8 and wanted to have another but not sure it's a great idea as id have a young one to care for depending on age I need surgery. I'm pleased to hear you've got support from your children

[Hidden in reply to Sophielou1]

No symptoms really. I walked from Victoria to St Barts for my pre-op appointments which is a 6 mile round trip! Back in the summer we had a couple of very warm days on the south coast and I do remember feeling faint during that period but that's the only thing I can think of other than an occasional feeling of 'pressure' on my chest which passed quickly and again I know I wouldn't have questioned it.

I had my 3rd child at 33 (way before I knew about this) and it was all straightforward. I imagine if you were to have another, you would have a closer eye kept on you.