Pre op exercise

[Numberone1]

After reading lots of posts on here about heart situations and gaining back confidence with cardiac rehab, advice and counselling for the future, I realise that someone in my situation doesn’t appear to be catered for.

It was discovered in the latter part of last year that I have moderate/severe aortic stenosis possibly as a result of a bicuspid valve which I would have been born with.

I’m under Kings and have waited 4 months to be discussed by a MD team. So, 4 months of inaction by me also. Too scared to know exactly what I can and cannot do and lack of confidence in doing anything anyway. No one to really turn to, fear that nobody can resolve because I just don’t know where the support should come from.

So while I know I will get lots of support after a valve replacement, what am I meant to do before any op? While this drags on, I am trying my best to be positive but it’s sll from within me and with no support from the people who know.

There will come a point where I just shut down I’m afraid. I’m still booking holidays, holding baby showers, going away for weekends, socialising sensibly with friends etc but I’m trying to keep the diagnosis in a little box in the back of my brain which is going to escape soon I think. I need to keep healthy and I belong to a fab health spa that I’m just not using even though I know it’s important to keep healthy cardio vascular wise etc.

Plus who is there to help me when I wake in the night with fear of the unknown.

Advice please.

[Fredders]

Hi

I was originally diagnosed with a heart murmur when I was 16 and it slowly got worse until finally in 2011 it became bad enough to require surgery - in my case it was aortic regurgitation. Like you, they thought I was probably born with it.

Even once they decided to operate, I was told to just carry on as normal, moderate exercise but nothing that puts too much stress on the heart eg no marathons (as if!!!!), lifting heavy weights etc. Walking is good exercise.

Worth chasing up the hospital too, with the pressures the nhs is under its not unknown for people to slip through the net. I had to ring up and chase up my yearly check ups a few times over the years.

As far as fear of the unknown is concerned, that is normal. Even though I’d known I would eventually have to have open heart surgery for years, didn’t stop me being terrified when the time actually came. Do you have someone you can talk to? Sometimes just verbalising your fears can help. If not, use us. Plenty of us on here who’ve been through the surgery so I’m sure between us we can answer your questions.

Take care

Wendy

[Numberone1 in reply to Fredders]

Thank you Wendy. Mine came as a total shock to me so you can imagine how adrift I feel. I’m right though aren’t I, there’s no support for before surgery, in the lead up etc.

I’m currently chasing Kings up but they admitted a couple of months ago that I’d slipped through the net.

Interestingly I’ve never fancied running a marathon haha. I’ve always known I had a heart murmur from birth but always told it’s benign. Looking back I now think I should have had some kind of review. My Mum is 87 and she also has a heart murmur since birth which is why I’m so confused.

Susan

[Fredders in reply to Numberone1]

Hi Susan, no I haven’t heard of any support, apart from BHF, who do some very good, clear booklets which I found very helpful.

When I was diagnosed with the heart murmur I was told that as many as half the population could have heart murmurs and never know about it and that never develop any further. In my case I was told that if I had children they would need to be monitored carefully, but I didn’t have any. I was also told that they didn’t think that I would need to have anything done until well into my 40s, if ever. As it was mine deteriorated very gradually as I got older. I think it’s very much pot luck whether your murmur gets worse or is benign.

Keep the pressure on the hospital, I think being in limbo is so stressful, at least once you know what is happening you can start getting your head round it rather than your imagination going wild.

Keep us posted.

Wendy

[skid112 Heart Star]

Hi there, sorry to hear about your issues, fully understand your worries and fears but now its time to start moving onwards and try and find out what happens next.

You should contact your GP and your cardiologist and find out what the next steps are for you, it may well be that you are not an urgent case, it may well be you have dropped off the radar, either way a gentle prod is needed. Make a list of your questions, no question is a stupid question!

Try calling the BHF heartline, 0300 330 3311, you will get some good advice on there too, ask them about exercising, though as Fredders has pointed out your options are likely to be limited, do you suffer any pain or other symptoms at rest or at other times?

Take care

Mark

[Sparklecake]

Hi...really sorry you're feeling isolated and confused. I have myocarditis and discovered I was born with a pesky bicuspid valve! Easy to make light of it all but worrying, nonetheless. There does seem to be very little pre-op support from the hospitals/GP's. I'm new to all this as well, and seems that we all need to lean on each other for support. I felt awful yesterday with the "Why me?!" whine - never smoked, rarely drink, a fairly acceptable weight. More positive upon waking today I hope you can find some answers and feel better soon - take care x

[mewg]

hi there i was in a simalar situatiuation found out i was born with a biscupsid aortic valve.i was training hard and then when i found out i just stopped although i was told 2 just do light weights and stuff i was 2 worried 2 do anything.now ive had my surgery im still holding back going back 2 the gym although the help after surgery has been fantastic im not confident yet 2 going back 2 the gym but im doing plenty of walking.goodluck with everything

[gal4God]

I was told to listen to wat my body could handle