Waiting for surgery

[geeman7]

Hi all, I'm new here. I had AF about 5 years ago which was a one off and required no intervention. Luckily this revealed that I have a bicuspid aortic valve which I have had from birth. They have scanned me on an annual basis and the last 3 years they have been concerned about an aortic aneurysm developing. It started at 46mm 3 years ago last February it had grown to 51mm. I was told I will need an aortic root replacement surgery. Since February last year I have been on the waiting list for this surgery. This has been extremely difficult to deal with. I am a physical training instructor in the RAF and so this has put my professional life on hold, along with family worries. I still have no date for surgery and am really struggling mentally

[Hidden]

Dear geeman7

Hello and welcome to the forum a place that I believe you lest expected to be, I hope that you find all you need to know here and especially realise that we are here for you and that you are certainly not alone.

It looks like nature has dealt you a bad hand, but to be able to reach the physical fitness that you have to enable you to have your job, it has not held you back until now.

Its been the sword of Damascus hanging over you for years and now its time to get it fixed and onward with your life.

It must be a huge worry to you and rightly so but your cardiology team will be able to help with the more difficult of your questions regarding the operation etc.

There are many on here with your problem and it may help {before they arrive to answer your questions} to use the search button.

I wish you well and you are in my thoughts, your journey has just begun { the fixing part } we are with you every step of the way.

Take care and try if you can to move some of your worries over to the professionals and not your family.

[Hidden]

Hello

One of the worst things is the waiting and it can affect your life in so many ways and so many do not realise the mental side of how it can affect you but it does and you are not on your own with this

I think the pandemic has slowed operations up and without that happening you could have had it done maybe by now but they are starting to catch up which is a positive

Been in the Raf do they have any counselling they can offer or could or would you think about getting some I know this is easier said than done as there seems to be a shortage of counsellors to but different areas are better than others so always worth trying

Where you are having this op or your Consultants Secretary could you give them a ring and ask if they can give you any idea where you are on the waiting list ?

Could your Doctor try and ask for you ?

I suffer with anxiety and get low but I try everything I can , I don't seem to get very far I admit but I always think well I have tried to get the support I need

I hope you get the support you need and a date soon and will let us know how you are and how you get on x

[Cliff_G]

Hi Geeman,

Welcome to a club none of us wanted to be in.

I believe some practical things to do may be of use - things I didn't know in your position. You are already worrying, understandably, but perhaps the following can ease the path of 'what if'. At present it probably just feels like a big unknown fear. The other posters have given you good advice on that, which I won't repeat.

Firstly, get your blood pressure well under control, by that I mean 120/80 max. The NHS standard is not to treat until 140/90 but that doesn't take account of the aortic risk. And if it isn't 120/80, talk to your doctor urgently about this. Again, the normal BP control regime is slowly slowly, i.e. not fast enough.

You may have been prescribed a beta blocker, ACE inhib or ARB. These can slow the aortic growth rate in Marfan's syndrome and there is weak evidence that they can also slow aortic growth in non-Marfan. If not, ask your consultant.

Avoid strenuous things including heavy lifting, weights, competitive games, these push your BP up too much. Moderate cardio exercise is ok provided you warm up properly.

If things were to deteriorate suddenly you need to know that it's not all bad.

You'll feel further deterioration of the valve as you'll be short of breath as it leaks backwards and you'll hence get a warning. The tricky one is if the ascending aorta deteriorates first. The risk here is of aortic dissection (AD) (a risk I was unaware of - until it happened - and BAV increases that risk a little).

Now, hopefully things will go ok, but as they say, hope for the best, plan for the worst. AD is a difficult diagnosis at an A&E, as it's too often thought to be a heart attack. So help your doctors to help you by making your aortic risk unmissable. I always say to people now, wear a medical alert bracelet or tag with BAV and Aortic Aneurysm listed - when my AD happened, I was too distracted to remember to tell them about my dilated aorta, which delayed my CT scan. The only clear diagnosis for AD is a CT of your whole aorta - echo and ECG can't rule it out and only waste time. If they don't CT you straight away you should tell them.

Good luck, and I hope your op comes soon, but remember, you can influence your luck

[Kristin1812 Heart Star]

Have you tried to find out if you are on the ‘urgent’ list? If you call the Sec of the Surgeon you are under, they might give you some idea of how long the wait is. You could also mention how it’s effecting your work.

[elephantsaregreat]

Hi there. Dont worry as it will be ok. Thats what i keep saying to myself. Im awaiting a replacement aortic valve and repair to mitral valve. Discovered after tests when i had pneumonia back in February. I had a heart murmur and bicuspid aortic valve discovered to be severly narrowed stenosis. Im waiting for ct scan. They said in 6 weeks. Then await op. Its a waiting game and sleepless nights listening to my irrigular heart beat grr. Im on meds to reduce BP which was 150 over 90. Amlodipine, furosemide and Ramiprill is bringing it down which is good but feel like a zombie so now taking ramiprill at night which seems to be better. I know how you feel being fit before now get tired out of breath but slowly slowly. No heavy lifting take things slower. Try to eat healtheie

[Hidden]

it is a shock to find you have something wrong with you from birth. Especially as you have been so fit. My issue possibly explains why i never like PE at school but it did not stop me doing things however the battle i have is the mental side of exceptance. My problem is congenital. And this was found in February fortunatly have had lots of test and iam on medication for blood pressure lisiniprol and spironolactone. But i may be in a similar situation of having to have an operation. The mental torture is i have to admit horrendous. However iam trying various things. I dont really know if the blood pressure medication is making me feel worse? Someone did say that they where like a zombie. So iam going to try all my medications in the evening. What i dont know is because your body may have been working on higher blood pressure to then go down to lower levels can then effect it in different ways. They have said that iam on the right medication to help my issue. But i can feel everything you are going through. Take care.