Newly diagnosed, AVS, any advice

Hi All,I am 51 and have been diagnosed with severe Aortic Valve Stenosis! My valve has been monitored since my 20's, I always knew that some day it would need to be replaced, however I a was not expecting the gradient of the valve to change so quickly...Diagnosis was over the phone and to be honest I did not absorb much of what my Cardiologist was saying. My understanding is it will probably be open heart surgery. Next step is a angiogram then dicuss options. Also been told to lose weight...difficult as I am a comfort eater... 😉

[Blackcatsooty]

welcome on board the forum. Lots of good people on here.

My stenosis stayed low for years, then moderate for a few months, then severe and action was essential. I was impressed how fast the system worked, once it became deadly serious.

You are currently at the worst stage…..waiting !…….

But as soon as I walked across the hospital threshold all the angst and stress melted away. I entered a world of dedicated and brilliant staff. Nothing like other hospital stays.

Unusually I had the three pre op tests as an inpatient, but that was when Covid was raging. The preop tests are a doddle.

I was 72 years and so a synthetic valve was a good option, maybe you are too young, but the surgeons or consultant will discuss that with you. I would not want a TAVi because OHS is certain, TAVi might need re doing immediately.

You can look forward to a good 2023. You need perhaps three months to recover, but the recovery is certain and I noticed improvement every two days.

If you can exercise and diet before the op, it will make life easier for you and the medics.

Best wishes

Sooty

[Rhinos67]

Good Morning Indigotree

I was in a similar situation last year, although until then I'd been totally unaware of any issue with my heart.

I went into total freefall for a month befire finding this forum and then a Facebook group dedicated to Aortic Conditions.

So, if I have any advice to give I would say ask questions to those who have been through it as well as the medical team. Don't Google as I did!

And try and get your body into the best state possible in preparation for surgery.

The Facebook group is UK Aortic and Heart Defects Pre and Post surgery

Joanne

😊

[Hidden in reply to Rhinos67]

Thank you so much. I will look at the Facebook page

[devonian186 in reply to Hidden]

Are you able to share what sort of BMI and waist size (real waist, not trouser waist) size you are as weight especially visceral fat around the stomach and organs could have a very big bearing on the success of the operation and your overall health both before and after it takes place. A few pounds here and there is one thing, a few stone quite another.

[Hidden in reply to devonian186]

My BMI is 32, so do need to lose some weight

[devonian186 in reply to Hidden]

Sorry, I didn't mean to appear rude but guessed if you had been told to lose weight then it was likely more than a few pounds. You will be aware that you are well over the category where you are merely a bit overweight. I don't know why you comfort eat but if you can tackle those issues your general health will be much better, and the surgery will be even more successful

If your diagnosis was over the phone presumably there should be a follow up letter to your GP copied to you. I would suggest you ask the Cardiologist nurse if it has been sent out and either ask for an interpretation or get your GP to provide one.

You need to know what you have been diagnosed with, the route ahead and the time scales involved. Together with losing weight you might ask what sort of exercise programme you could follow, bearing in mind your circumstances.

[Cat04]

My bicuspid AV has also deteriorated rapidly this year after years of monitoring and I'm now awaiting AVR (plus other aspects too) My cardiologist gave me the news by telephone too following his discussion with a cardiac surgeon after he had received my echo results. I saw the surgeon last week & have been scheduled for OHS in Jan/Feb.As Joanne says the Facebook group is really great, giving real advice, support & friendship from members who are or have been through the same

[JHeartValve]

Hi Indigotree

I’m five years older than you and was diagnosed with severe aortic stenosis in early February, which although I’d not been well for a few months was a shock (I am an appalling ostrich). I regard myself as fortunate that my brother had valve surgery about 11 years so had asked a lot if questions at the time because I’m very nosy!

This has certainly made my year relatively easy as very little has been a shock.

My brother and I have had lots of discussions about the difference between our experiences and the following sums up some of our suggestions (fully accepting that your last conversation must have been a completely shock):

1 write questions down before conversations, things that are of concern or interest to you and people important to you, put your important ones first in case you don’t get a lot of time

2 have someone with you. If it’s a phone conversation put your phone on speaker phone, explain to the doctor what you’re doing and agree with the other person that their role is to listen and take notes, not really to talk. It’s still your consultation. Consider asking if the consultation can be recorded or done by Teams, being able to see the body language etc of the doctor can help

3 your cardiac specialist nurse is great for things that come to you in between appointments. As are the BHF helpdesk

4 try not to panic! Easy to say, hard to do I know but we’re really lucky to live in an age where there are lots of solutions

good luck

Jennie