New to the group - trying to “get ready” for AVR!

[Alison1960]

Hi Everyone. I’m 57, live in SE England and need a new aortic valve sometime fairly soon due to BAV and aortic stenosis which is now severe. I want to get fit, lose weight , find a great hospital/surgeon and generally do all I can to make sure I’m still here for the next 30 years. (I have a 14 yr old daughter.) Any advice gratefully received! Or maybe someone in same position as me?

[KazSumm]

Hi Alison

I’m also 57 and 6 months ago today I had my AVR. Total shock didn’t even know I had a heart defect, I had chronic Stenosis and was kept in hospital till I could have the operation . I live in the southwest had my op at Southampton and they were fabulous, it’s one of the best Hospitals for anything cardio. I’ve got too go to work now , but if you want to know anything just ask. You can read my other posts . Take care and honestly don’t worry to much . Would love to chat later Kaz 💖❤️💕

[Alison1960 in reply to KazSumm]

Thanks Kaz! That’d be great! X

[Alison1960 in reply to Alison1960]

Hi Kaz

Sorry to bother you again but I’m looking at Southampton and it’s consultants for my AVR - and trying to choose! I know we can’t mention names here but was wondering if you coukd maybe message me with any info?

Hope you’re well on the mend by now!!

Xx

[Hidden]

Hi Alison

I’m a little younger but was in the same position. Had my valve replaced 8 weeks ago and now back at work and feel ‘normal’ apart from the noise! Feel free to ask any questions. I’m near you (Worthing area) and saw a consultant at Worthing Hospital but had my surgery at St Barts.

Take care

Claire x

[Alison1960 in reply to Hidden]

Hi Claire

Glad to hear you’re feeling well! I see cardiologist in Brighton but want to be sure as I can of which hospital,/surgeon,/valve.....such important decisions but I don’t want to over think things! Are you happy with St Barts and the surgeon? Sounds like it if you’re already at work!

Keep well!!! Alison x

[Hidden in reply to Alison1960]

St Barts was great and the surgeon did a fabulous job. I think they can do the surgery at Brighton?

[123m]

Hi

I have had the exact same surgery, also had aorta replaced below and above the valve, like another lady mine was done as an emergency, as I collapsed twice because the valve was so narrow, so not allowed out of hospital and transferred to Papworth Cambridge as soon as they had a bed, only in six days and then home. I was the same age as you, you will recover quickly, mine operation was six months ago and have completely recovered l had no symptoms before this only a heart murmur, but had no idea what it was. I had a tissue valve fitted as did not want to take warfarin, and the doctor I spoke to the night before suggested this was a good choice. I only went to Papworth the afternoon before my surgery, which was at 8am the next morning, so had to make an instant decision, only saw my surgeon for a few minutes, before having the surgery. Anything else you want to know, just ask.

Take care

Karen xx

[MKB38]

I can only reiterate what has already been said. It's not as bad as you think. I had a tissue valve to replace my Aortic valve at Papworth. I was home after 5 days and now, just 9 weeks later, I feel pretty normal. I'm no longer taking any painkillers for the sternum. The scar has healed beautifully. I still have a nap during the afternoon. My advice is be positive, take it very easy during your recovery and do as you are told! I'm looking forward to starting cardiac rehab soon. Best of luck Margaret x

[Numberone1]

Hi

I’m in the same position as you! You have just replied to one of my posts. I too want to be all the things you said and to find someone the same as me. It’s all such a shock because I had no idea.

Please reply and tell me what stage you’re at, wher in SE you are and who you’re seeing.

Susan

[Alison1960 in reply to Numberone1]

Hi Susan - I’m so sorry but Ivejust seen your reply to my post!! Have you had your AVR yet???? If not have you got a date? I’m seeing surgeon on Thursday at St Thomas’s In the end. Hope you’re ok!xx p.s I haven’t lost weight or got fit yet and am mad at myself!

[Numberone1 in reply to Alison1960]

Hi Alison

I’m almost in the same position as you ....still.

It doesn’t seem to have progressed in as much as I’m still waiting for things to happen.

I’m trying to be really brave about this but I also easily forget about it because I dont have many symptoms and that scares me.

I do get a bit short of breath and I also get mammothly hot, evenbwhen it’s cold which I’m told is nothing to do with it.!

I had a TOE done a month ago and the results are that I’m teetering on the edge of severe at 1cm.

Do you have any figures?

I’m about to go on a waiting list which I believe is about 4 months long.

Is your appt this coming Thursday??

I want to lose weight and get fit for surgery but nobody seems to tell me what is ok to do.

Keep in touch as we sound like we’re at similar stages.

Hope you see this.