I’m sitting here, early morning after seemingly dealing with my diagnosis of aortic valve problems 6 months ago ie mentally.. I had initial shock, then dealt with it and now it’s hit me quite hard.
I think I’d been keeping very busy and now not so much so. I recently had a TOE which has shown further deterioration and that I will need to go on the waiting list for surgery. But as I have found with my hospital, admin is poor and I have heard nothing since.so far I’d been able to keep all of this in a box but now I feel I’m having to deal with the practicalities of it all.
I’m basically very scared. As we all are/have been I guess but I’m feeling angry now. How can my whole family live to such lengths of time, live quite unhealthy lives etc and not have this problem which is usually hereditary? I feel that I’m on such a long journey and there is no one to tell me what direction I should be going on.
I need to lose some weight and it just isn’t happening due to a thyroid problem. I believe I need to get dental clearance and I am so phobic of the dentist so will need work I’m sure.
My biggest fear is that they will find something unrelated medically and that they won’t be able to do the heart valve surgery. It has been found quite late with no symptoms so who is to say there aren’t other things. Delay in dealing with the heart valve could be fatal I’m sure. What normally happens if they have to delay it for other surgery?
I know I’m lucky it’s been found but I almost wish it hadn’t because I’m using the last part of my life with this hanging over me. I’m only 59. Too much to do and live for.
Sorry this is a bit depressing.
This isn’t the half of my worries really. I can’t keep worrying my husband. He’s started to get a bit depressed now. We live to travel, have a property abroad too. I’m being told to live normally but I’m now scared about what I can actually do. Am I likely to suddenely have a heart attack? Is the stress of this going to suddenely strike me down? I’m on a low dose anti depressant but we can’t get away from the fact - I need heart surgery and everything that goes with it, the recovery etc. Is it normal that I can now be left like this
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Numberone1
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Good morning. I to have been diagnosed with aortic stenosis . I have biscupid valve. I am 58. I had Mri scan on aorta Saturday and echo stress test couple of weeks ago. So now it's just a waiting game! And I to am very anxious. I paint my smile on daily and get through the day. I to have put weight on and have i underactive thyroid . Both parents had bypasses and strokes ...So family history! My cardiologist said I can't go abroad at moment which was a double whammy as I to love travelling.
We will get through this ...with the support of our loved ones and support on this fabulous site we have found.
Hi Numberone, I'm in a similar position to you. I was told 7 months ago that I will need mitral valve surgery. However, this was 6 weeks after my husband had a triple coronary bypass, so I knew all about cardiac surgery!
Living with the knowledge that you need serious surgery is extremely tough and is with you every day.
However, I constantly remind myself that:
1. We have fantastic Cardiothoracic surgeons in this country and this is perfectly routine for them.
2. As a little distraction I had a left hip replacement in February. The pre surgery anxiety was infinitely worse than the reality afterwards. I think that's true for most surgeries. (I did get clearance from cardiology first).
3. My husband worked hard and made an amazing recovery and says he'd go through the surgery again (and he's no masochist)
4. There are lots of people on here who've had the same surgery and can offer useful advice and support.
Personally, I think anger is a waste of energy which could be better used in getting your legs and core strong to help with rehab. Losing weight will help enormously as well. You could ask your GP about safe levels of exercise. I did loads of pre-hab before my hip surgery and it really helped.
Have you thought about hypnotherapy for the dentist? It's a common problem.
Do keep chasing up the hospital admin - the NHS is fab but admin is a weakness. I will be chasing mine for my latest echo results next week - I think 4 weeks is about the right timeframe.
Hi Mary.. wonderful advice... and all the best to numberone. I joined this forum tonight through the bhf website as I too At 47 and with no real symptoms am now waiting for a open heart valve replacement and my anxiety levels are through the roof. Your advice to a fellow sufferer hit home for me . Thank you
I’m sorry if I sounded sorry for myself but I think I have reason to ... a bit anyway.
I’ve gone through a lot of pain over the last few years ie I was in a serious car accident and had to stop working for 2 years due to injuries. I became very anxious, could hardly go outside my door for some time. I refused to give up, could hardly take my children to school even. Over several years I have rebuilt my confidence, rebuilt my working life and my social life. I can’t bear to go through all that again. I need to be an example to my daughters and I can’t bear all of this now.
Nobody in my far reaching family have anything like this and even have heart murmurs living to@7, 93 and 87. All my cousins in Canada and Cornwall are all fit and healthy and like me until now, belie their ages.
I feel so alone in all of this and have no support. My Parents who are fit and healthy 87 year olds are doubting all of this which makes me feel even worst, like I’ve let the family down by being ill.
Plus we are a very fit and healthy family, I’m the only one who seems to have a problem with weight, have arthritic repercussions from the car accident.
When I was first diagnosed I was convinced I could beat it, put it in a box and forget it.
But I’m too intelligent t to really think that. I have no symptoms as such so really hard to understand it.
I really want to get fit for surgery and am starting meditation. I asked the registrar can I travel and he said yes plus I have travel insurance on but somehow I don’t believe it. I also asked if I can do one of the very low calorie diets and he said yes to that . I’m not sure that’s correct.
So in the air with it all. I’m also scared about how ill i could get as a result of either the worry or the op itself. When I said I get angry I mean that I look around me all the time at people who over drink, overeat, dont exercise, take drugs etc and I’m afraid I’m with the why me camp. One of my cousins eats only chips, fish and creme eggs. Boasts about how a vegetable hasn’t passed her lips, and yet is nearly the same age as me, has no health issues and looks about 20.
You see I’m getting angry and bitter and don’t want to become that person.
You don't need to apologise for being anxious and emotional in the run up to heart surgery. I think it's perfectly normal. Like you I don't have many symptoms and I thought up a hundred reasons why I didn't need and didn't want surgery. At the end of the day, the NHS wouldn't spend thousands on us if we didn't need it. You haven't let anyone down by being ill - most illnesses are due to combinations of genes, environment and bad luck. I know I feel envious of friends who've never spent more than a night in hospital, when I've had 10 surgeries plus other admissions. But the 'why me' and 'it's not fair' thinking doesn't help - life is just random.
You got through your car accident so therefore you've proved you're a tough lady - so you can get through this.
Stress is more danger to you than the valve problem I suspect. I have had a leaky valve for seven years and they are keeping an eye on it. My surgeon said one of his patients has just run a half marathon with a leaky valve.
Easy to say but there is no point in worrying. Just look forward to getting it sorted.
Thank you. This is all so new to me and is severe so I’m due to have surgery soon. I had hoped it would stay at watch and wait for a while. You are right, one of my main worries is that the stress will get me instead.
My closest friend had the same problem as you, she eventually had a new valve at the Northern General Sheffield, she was in hospital for five days and after the initial postoperative time she has been well ever since, it's now fourteen years, like you she had to lose some weight, she went for a longish walk everyday, it did the trick.
I have an Aortic Anuerism which will need surgery fairly soon so I understand your anxiety.
Hi there, I can appreciate your problem. I had an AVR in early Jan this year. Had I waited for our local hospital to help me I don’t believe I would be here. It was the winter crisis. I was told there was a 6 month waiting list. My case was classified as severe. I managed to raise £20,000 and paid for it privately. The OP was done at my convenience. It is wrong, but what price life. I will be paying off the debt until I’m 82 but like you I love travelling and I’m off to France on Sunday. Some people on here may not approve of my actions but we only have one life. I wish you all the best for you future. Phil
Do you mean me? If so, I have no symptoms and feel incredibly well. Yet I have severe aortic stenosis of the aortic valve caused by either a bicuspid valve or rheumatic fever.
You just got to live each day as it comes, look after yourself by eating a reasonably good diet, go for a walk every day. Put on some music and dance. Enjoy your family. I am having a Aortic valve reconstruction next Thursday and my anxiety during the night's has been bad but I just want the surgery done now and hope to have a good recovery. Planning a holiday abroad as soon as I am able to travel 😎. If you feel so stressed maybe you need to see your GO or speak to a counsellor. I was offered services from the hospital of one. Good luck ❤
I had a triple bypass three months ago and was a complete shock. I see by one of your posts that you say 'I refused to give up', that is what you should focus on. Don't ever give up, you are too precious not to, we all are. Concentrate on what makes you happy, every day. Take as much support and advice from all and see a counsellor if you can. Take care and good luck xxx
The outcomes from surgery are very good usually, it is important to prepare well emotionally and physically. If you drink, give up alcohol and put the effort into getting to your correct weight (mid bmi). These alone will make you feel so much better and you will also be in the best situation for the op.
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