Hi, I'm 22 years old and was born with severe aortic stenosis. After 2 operations to balloon the valve I still have moderate to servere stenosis and aortic regurtitation. I am due to have open heart surgery early next year to replace the valve.
I was just wondering if anyone could share their experiences with such a predure? As I am a bit nervous about what is to come.
Thanks in advance!
Hi I had my aortic valve, replaced in July, mine was done at Papworth hospital. I was only there for six days, and you recover very quickly, you are out of bed on the second day. I found it is taking longer to recover from the incision, than actually having your valve replaced. Doing Cardiac rehab really helps you recover after the operation.
Thank you for the advice!
I was just wondering what cardiac rehab is? I havent heard of it before.
Thank you
Hi i had mine done 2 and a half years agobut i also had a quad bypass at the same time.I think it took over 6 mths for the chest bone to heal for the first few weeks you need a cushion handy in case you sneeze,give it a hug.Also i had to choose between a mechanical valve or animal.I am older so went for mechanical.It all takes time,but be possitive.You will have ups and downs.I,m still working at 67.Happy new year.
Thank you for your advice! I will definitely remember the cushion!
Glad you are doing so well
Happy new year to you too!
My mum had an aortic valve replacement at 77 it is a big op but within a week she was still sore but able to get around the house slowly. It gave her another 13 years of good health so I am sure with your young age that will help you recover quickly. Good luck
Thank you so much!
Hearing about others experiences is really helping a lot!
I had Stenosis 11 years ago at the age of 62, had the valve replaced with a mechanical one, which I would recommend, especially at your age, as it should save any further replacements further on, the only bugbear is having to take warfarin for life, but thats no real hassle. Definitely do the Cardiac rehab that will be offered, worth it's weight in gold!
Thank you!
I am just wondering what the cardiac rehab is?
I am thinking of having the tissue valve first, as they have told me due to warfarin with the mechanical valve, I will be unable to have children 
Thank you for getting back to me!
The Cardiac rehab I had consisted of a series of talks about you, your op, medication and it's effects, what to expect etc, and then up to 6 months of exercise classes to gradually get your fitness and confidence back, well worth it.
Thank you for that information! I greatly appreciate it
Hi there,
I had a mechanical mitral valve replacement 30th august.it is true about the wafarin and having children so make the right choice for you.i am 45 so had a mechanical valve..warfarin is fine to take i find.
Its an anxious time but you will be looked after very well as surgeons/nurses are amazing at what they do.
I was in hospital 9 days as i was in ICU for 3 but normally you are moved to HDU or to the ward.
It does hurt afterward..just keep on top of your meds,listen to the nurses and physios as they get you home.if you need any questions answering i can help answer i will
Best of luck
Jenny x
Thank you so much for your information! I greatly appreciate it.
Hope you are doing okay xx
I had a valve replacement in August and still on pain meds. Even though it hurts it’s worth it.
Oh wow really??
How are you finding the recovery as a whole?
I get pains as the valve opens up as I’ve been told that’s causeing the pains. I finding my I’m usually tiered. I can’t sleep till after midnight and can’t wake till midday. Reminds me of being a teenager in that way onli. I’m finding I’m getting more out of breath. I’m 4 months into a 6 months recovery period.
I had my second aortic valve replacement in November but this time I had a mechanical valve so that I don't have to go through another op, but your surgeon will discuss the different valve options with you. I was in for 10days, but that was because I had to have a pacemaker fitted a week after my op, but most only stay in for about five days. They'll have you out of bed and walking about within a day or two of your op. It's your ribs/sternum that give the most pain as you recover, but they'll give you painkillers to help with that. I still get out of breath when I go out in cold weather and get the occasional twinge in my chest, but apart from that am doing well.
You should get some information when you go to hospital for your pre-op check, but the BHF have some very good booklets on what to expect etc, well worth downloading them.
Try not to worry, easier said than done I know, but if you have anything specific you are worried about then ask away, as you can see, there are lots of us who have had open heart surgery 😸
Wendy
Thank you so much! You have no idea how much you have helped!
I have opted to go for a tissue valve, they have told me with a mechanical one I will not be able to have children, so i think I would like to give myself the best chance to do that!
You have comforted me so much, you have no idea! Xx
so pleased it helped. If you think of anything else you want to know about, ask away.
One suggestion, take earplugs into hospital with you, but tell the nurses on the night shift you are wearing them! Can be a very noisy environment. At Glenfields they offered foam earplugs to patients, but I took my own wax ones in as I find them more comfortable- I've used them for years as other half snores!
Take care.
Wendy
Don't worry you will be find, mine was done as an emergency, it was replaced after I fainted twice, the second time, I had a emergency echo done and the stenosis was so bad, they wouldn't let me leave my local hospital and waited ten days for a bed at papworth. I knew I had a heart murmur but had no idea this was the cause of it. Mine was a result of a biscuip valve. I decided to have a tissue valve as didn't want to take warfarin. My surgeon suggested by the time my valve is worn out they will have perfected the Tavi way of replacing valves, so no need for the chest insision anymore. I did eight weeks of cardio rehab and it was very good. I started mine eight weeks post surgery. I am five months post surgery, don't take any painkillers, only took paracetamol when I left the hospital. The only thing I have now is sometimes my muscles in my chest still hurt if I lift very heavy things. The rehab nurses said it was normal for the muscles and nerves in the chest to take up to a year to fully recover from the insision. I was up and using the bathroom the day after I returned to the ward, wanted to get rid of the Cather as quickly as possible. I am 57 so I imagine you will recover even quicker. I also had my Aorta replaced below and above the aortic valve. Good luck.
Wow that must have been terrifying! So glad you are doing better now!
Thank you so much for telling me your story, all the information i'm getting is helping so much with settling my nerves!
Hi I didn’t know I had a heart problem, turned out to be a genetic birth defect. I was at work in the morning and being told at 4pm that I had chronic Stenosis and would be kept in hospital, this was mind blowing
I needed open heart surgery. I had all the tests done and 2weeks later transferred to Southampton . I also had a biological value ( Peppa pig)which I was glad of didn’t want to be on warfarin for the rest of my life, it should last 10/15 yrs and won’t require surgery to replace it will be done by angiogram, and like the surgeons said technology is advancing so quickly some other procedures could be in place. There is a new Value they are giving young people now that should last for life and doesn’t require being on warfarin it’s call Edward something can’t remember the full name, there has been a few people on here that have had it.
Now I’m 57yrs old I breezed through the operation,was only in intensive care for 12hrs ,went straight on to normal ward , can honestly say I was in no pain more uncomfortable and only took paracetamol, within 36hrs was up and walking to the bathroom, went home on the 5th day. That was 20weeks ago my scar is almost invisible and I’ve been back to work since 7th November. Yes I do feel more tired some days, yes the emotional side I found harder than the physical side and I have depression which has improved these last few weeks and I start counselling on The 9th . You are much younger and should also recover quickly. It’s a scary thing to face, but it’s not half as bad as you imagine and you will be surprised how brave you really are. Anytime you want to know of our experiences just ask everyone on here are friendly and very supportive. Kaz ❤️💕💗
Thank you so much, honestly you have no idea how helpful your insight has been! Its just fear of the unknown really.
I have had this condition my whole life so knew it was coming eventually, but it was a bit of a surprise when they told me it would be soon!
I really appreciate you replying to me
Your more than welcome.
As you can imagine I felt like I’d been hit by an express train, and it was so surreal. Although I had lots of Doctors and Nurses talking me through the mechanic of what was going to happen I just wanted to talk to someone who had been there and get there personal experience , fortunately I was but in contact with a lady the same age as me who had AVR just 4month earlier, talking to her put a lot of the fears aside and even now I can’t believe how calm I was on the day of the operation. I didn’t know about this site till a few weeks after my operation and it’s been so helpful and supportive so it’s nice to be able to give back and give reassurance to others.
Always here Kaz💖❤️💕
Don't know if this will help you, as mine was an emergency operation, I didn't have any special bras, after surgery they put a tight band around your chest to help your sternum Close up. They suggest you bring bras that are soft and non wired. If you are a large busted lady these bras really help to support your chest. You will need them one size bigger because of the slight swelling after surgery. I only went back to under wired bras 3 months post surgery as the wires irritated my scar. If you are small chested this will not be so important.
Any information is of great help so thank you!
Aortic stenosis moderate to severe
aortic leaky heart valve
Help or advice please?
AVR Surgery - Advice 
