Severe Aortic Stenosis: Not sure where... - British Heart Fou...

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Severe Aortic Stenosis

slimbridge profile image
14 Replies

Not sure where to start with this, I am 69, always been fit and healthy, never taken any kind of medication, good diet, ex football, cycling, golf, and walking, was a ‘social smoker’ but never heavy, in addition I have had one and only one lifetime phobia - anything medical! To the extent of total meltdown for a simple blood test!

My breathing over the past two years has got increasingly laboured on gradients, following all sorts of tests an Echocardiogram has located Aortic Stenosis, and it’s severe.

Just waiting for specialist to confirm, but it looks like major surgery, my worst nightmare. To be honest I am looking for any advice on publications/articles which could help me deal with the inevitable psychological trauma in the lead up to major surgery.

Appreciate any advice, Thankyou

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slimbridge
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14 Replies
10gingercats profile image
10gingercats

In your position I would want to know all the options.....different types of surgery plus best person for the job and specialist hospitals for this type of surgery. There may not be too many choices but you should avail yourself of the knowledge to give yourself the best chance of a good outcome.You need to know the risks as well and do you have a real choice as to whether to have surgery or not. When faced with something like this I took my son with me .He is not a medic but is pretty bright and asked questions i may have forgotten.

You are likely to receive the best or certainly nearly the best treatment for your condition that health professionals can provide, based on best practice. There are likely to be many others who have gone that route, although there will be risks associated with whatever treatment you are offered, but that is the case for all procedures, and indeed everything in life. So at the end of the day your choice is likely to involve proceeding with what you are offered, or perhaps do nothing. My advice is to embrace what procedure is offered to you, with its risks, in the knowledge that it is likely to be the best solution for you. And finally investigating 'publications/articles' regarding possible treatments is, in my view, only likely to increase your unease about your destiny, not help you comes to terms with it.

leach234 profile image
leach234

Have you considered the TAVR procedure?

tapfoot profile image
tapfoot

I found myself in the exact same situation two years ago. Much empathy with the shock and thousand questions this brings. It was difficult to get answers to my questions as surgeons were redeployed to coronavirus stations, but I did some very basic homework and decided I could live with the wait and made the best of the early lockdown.

Some of the very best support, I found here. I called the nurses. I posted questions. I then accepted this as a normal situation for many people and entered the world of the 'hearties'.

Almost 2 years since my new aortic valve and I'm back at work, albeit no longer on the road but working from home, and feeling relieved and happy that it was discovered in time. I wish you luck in your journey back to full health.

KTM1290SAS profile image
KTM1290SAS

I was diagnosed with a heart murmur 25 years ago and this developed into a severe aortic stenosis over the years. Up until last year this had no impact on my lifestyle. I was still able to walk and cycle no problem. I often did 60-70 mile rides at the weekend. However at the end of last year it started to affect my ability to be active. Tight chest and breathless when walking up any moderate gradient. As I have had echo cardiographs every year since the murmur was detected and these showed a progressive narrowing of the valve, I’ve known I’d need surgery some time. So I had the valve replaced (along with 10cm of the aorta) in January. Rehab has been hard, especially the first few weeks, but now I realise how much the stenosis had been affecting me. I’m now back to full fitness, walking and cycling more than ever. Your surgeon will explain the risks and benefits, and it is your decision in the end, but personally I have no regrets whatsoever in going forward with the surgery. Good luck!

Caledonia1944 profile image
Caledonia1944

Best to wait until you get final results. I have had this diagnosis too. I have two aortic “dilations”. The largest one is 3.9cm at the root. Now on medication and wait and watch. It is stressful but I am hoping the grow very slowly. Finding out about your condition is a bonus though it might not seem that way to you at the moment. Left untreated aortic stenosis is more problematic. Good luck and do let us know how you go after meeting with your specialist.

Blackcatsooty profile image
Blackcatsooty

Dear Slimbridge

I had severe stenosis on bicuspid aortic valve, when I was 72 years old.

By far the worst bit of this was waiting.

You may well need a new valve. It is a major op, but nothing like other medical procedures. Top class professionals. They do this work every day and are supremely capable. I was very concerned, but as soon as I entered the hospital all was pretty wonderful. My anxiety melted away. The care was just fabulous.

The home recovery after op is lengthy and not without pain and discomfort, however recovery is good. Felt a bit better every day.

And you are the optimum age for this treatment. these replacement tissue valves last a few decades so you can have a tissue valve and it should outlive you. Mechanical valve is an option.

I had little choice as all heart hospitals were closed and I had just a few months to live. So I went private. Well talk about rolls Royce treatment. And a much reduced waiting time.

Honestly, this is not like other medical procedures.

Best wishes

Cliff_G profile image
Cliff_G

Hi,

I'm sure I remember seeing something specfically on anxiety pre open chest surgery, but can't call it to mind right now.

There are a lot of useful pages on the web. Although this is for an unrelated condition, it looks very solid to me: njnbi.com/scared-of-surgery...

080311 profile image
080311

Hello slimbridge

Welcome to the forum, I had my Aortic valve replaced and bypass done nearly 6 years ago at the age of 68. Being told we have a heart problem for me felt like the ground had opened up under my feet, but as you will see from the amount of members who have stood where you are now it’s such a common problem.

The road you are travelling comes with lots of questions you will want answers to, but please don’t use Dr Google the information is sometimes out of date or just plain wrong. Speak with your cardiologist/surgeon or ask the BHF nurses here on the forum. You can certainly ask us we have a lot of experience of having open heart surgery.

The worse part of this is the waiting, are imagination goes into overdrive, but believe me it’s nothing like we think. You are so well looked after you feel safe and protected.

You will have some decisions to make but again speak to your surgeon. After surgery you will be given some rules to follow, no lifting arms above your head no lifting anything heavier than half a kettle of water, and no pulling or pushing movements. This is for the 8-10 weeks so your sternum can heal, there are other things to but when you get to know how things are proceeding just post and someone will be along to try and help.

As I said I am nearly 6 years on and every day I am grateful to the medical team that gave me my life back.

Remember you are now part of the Hearties family, and we are here to help, give you a shoulder to lean on just listen to your fears we have had those fears too.

Best wishes Pauline

TMeditation profile image
TMeditation

I’m so sorry you’re experiencing some anxiety at the moment about your upcoming surgery. It always seems so unjust when you’ve done everything you can to lead a healthy life and then this happens! Unfortunately I could show you a list as long as your arm of members on this forum, including myself, who will have the same complaint! It seems no matter what you do life will dish out it’s challenges, regardless. I had my AVR 3 years ago at 67 when all I noticed was some slight breathlessness on walking uphill. However from the moment I met my surgeon I discovered this was a two-person job. Him and me. He will discuss everything with you and help you make the big decisions, guide you through the difficult choices, because they’ve heard it all before and after surgery will be there to help you recover. You’re about to experience world class medical care and meet a number of other heart patients, both in hospital and online here, that will make you feel confident and part of a very selective group. Try not to listen to what’s going on in your head, it doesn’t have to be like this, just take each day as it comes and I’m sure there is a range of information available if you feel the need - personally I read nothing about my upcoming op, I just wrote down all my questions and put them in front of my medical people - cardiologist, surgeon, doctor and refuses to leave my seat until I was happy with the answers You’ll be fine, don’t listen to what your mind is telling you, it’s working on your historic experiences, this is a new chapter and I wish you the very best of luck. Sue 🙏

Eva58 profile image
Eva58 in reply to TMeditation

Great advice thank you Sue. I too am awaiting AV replacement. Thank you

Hi Slimbridge

I had OHS for AVR in January 2021

Personally I didn’t get into all that .

I couldn’t get my head around it as I was in complete shock.

I was a fit 66 yr old walker and jogger who had , over the last few months become breathless.

Shocking diagnosis and imminent surgery. We were in lockdown so no medical professional to talk to such as a GP. He disappeared. No face to face appointments and no family to cuddle and cry with.

I talked to my surgeon when my turn came 5 months later who advised me on how he thought the procedure should go and what was best for me aged 66. I accepted his recommendations of tissue valve.

I’m now back to my walking. 12 miles the other day. I garden more vigorously and have planted a tree! I’m not going back to jogging. I feel some things have changed but it’s mainly my outlook on life I think.

It is a traumatic surgery but you don’t have to do anything . They do it all. They are the professional team that saves your life.

Instead, take control of your recovery process. Engage in how you will cope when you get home. Arrange for help or rearrange your own living space to cope with your limited mobility immediately after surgery. Put your energy into doing the practical things while you can. It makes for a more comfortable space for recovery ❤️‍🩹 and also helps your mindset. Taking control always does!

If it’s any help then please see my past posts and the very helpful responses I had from this forum pre surgery.

It’s too long to put on here . It helped me so much with my mental health.

Good luck and keep us all informed on how you get on.

Kind Regards

Maisie

PD25 profile image
PD25

10 years after my CABG at age 50 and with my exercise tolerance levels rapidly decreasing and generally not feeling too good, like you, I found out I had severe aortic stenosis. I had my aortic valve replaced last year with the mechanical device. I'd looked up the pros and cons and I spoke with the consultant about it and he agreed with me, that the mechanical was the best option for me as I was only 59. I'm on Warfarin for the rest of my life but its a small price to pay.I knew what was coming as I'd already had a CABG and he did say to me, I was the calmest patient he had ever come across. My recovery was slow as I ended up with COVID post op and anaemia.

16 months on I'm nowhere near as fit as I used to be (COVID?) but I am working on it.

I know we are all different but I really wouldn't try to worry too much.

So good luck with whatever option you choose.

JessicaRed profile image
JessicaRed

Hi I have also had a recent diagnosis and will soon be attending consultants clinic to discuss options, its scary to say the least

This site has lots of articles videos etc I'm finding it very useful and nice to have found this community chat

wishing you the best

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