British Heart Foundation

All new and fairly young

Hi all. I had an aortic aneurysm on 22nd December, massive chest pain and thunderclap headache. Critical by Boxing Day, emergency op on 27th...as it was 7.5 cm... now have a mechanical valve and warfarin for life. I am 36 and very fit... swim, cycle lots of walking... so this was rather a shock... no family history so currently inexplicable. When I was in hospital no one had had what happened to me and most guys were much older. It would be nice to find if there are people my own age going through this too, but I am happy to hear from anyone who can offer advice as it’s a lot to get my head around. Thanks, Mark

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i am 21 and had a heart valve replacement last summer

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Thanks Midgeymoo... can you tell me how long it took you to recover? Did you have a mech valve too?

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No I have bovine valve as it was the pulmonary position so tissue normally lasts ten years and mech valves are not easily compatible with pregnancy should I wish to do this later.

Realistically 8 weeks to return to University 3 months to get up to feeling completely normal an d able to work and attend extra circulars/ before pain in shoulders had completely resolved.

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Hi Mark, sorry to hear about your emergency op, can understand what a shock that must have been. I am somewhat older than you, but had a mechanical aortic valve fitted two more this ago. I am going back to work in two weeks, but depending on how you are and what work you do you may be able to go back sooner than that, especially taking into account your age and your prior fitness level. Bear in mind that you need to be careful about lifting things at least until your breastbone has completely fused, which takes about 12 weeks.

Does your coagulation clinic support home testing? Mine does so I have bought my own machine. I now do my own blood test, ring my INR level to the clinic and the nurses let me know what dose of warfarin I need take. Will make life a lot easier once I am back at work.

Hope your recovery goes well.

Wendy

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Thanks Wendy... I have looked into self testing, but only been out of hospital a week so they need to get me stable as a mistake in my documents led to taking 4mg extra overall last week... I am also a bit of a worrier, so need to settle myself first... it would be good if they did eventually allow self testing as I don’t drive and the clinic is not easy to get to unless you do. My partner is taking me at the moment, but it would be easier to be able to self test and send results through longer term... it’s a bit weird trying to get used to all the rules and nosebleeds, which I never had before too. I am hoping I can start to do normal activities like cycling/ swimming again in 3 months... feels like every day is getting better, but still a mountain to climb... sometimes I feel like I can walk normal pace, other days it’s a real struggle... I feel more and more like me again everyday. I know I am so very lucky to be alive too... I just would never have thought something like this would happen to me... I ve tried to stay really fit generally. I wondered if it was caused by stress, as I tend to get worked up a lot at work, which means I am slightly worried about going back too.

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It's early days Mark. I still have times when I still get out of breath walking up the stairs yet other times I'm fine. After a couple of weeks it is very easy to overdo things and you'll feel it the next day, so take it gently.

If you're worried about work, speak to your surgeon when you go for your check up. He should be able to tell you whether it is likely to have been caused by stress or not.

Thankfully my INR levels have been within range since I left hospital but sounds like yours aren't playing ball. The biggest downside for me is not being able to have liquorice any more - I love the stuff, but high in vit K.

Wendy

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Thanks for the tip on liquorice... luckily don’t like it. Looks like something other than vit k there though. I was told it’s important not to cut vit k out and have read this also. I love spinach and broccoli so making sure it starts to be part of my regular diet again along with parsley I guess. Effectively it’s still good for you in moderation. No more than 3 x in a week. Def no to cranberry juice though. I read and dr’s also said best to totally give up alcohol. Think i’d Feel safer doing that too... the dr’s sent my tissue off for analysis but never came back with results as we cannot explain it. I have mentioned my concerns about stress to my manager already though so I guess we will look at that when I go back too

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Have you considered asking your GP for a mental health referral such as a CBT class or counselling to prepare you to deal with stress better? I did both when I was diagnosed with a serious and rare autoimmune disease which is accelerated by stress. Really helped me out x

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That s a good idea... there are so many things I need to note down to ask the GP/ nurses etc... will try to make a list today I think as I will have a call tomorrow with the GP. Thanks

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Hi Mark I am on warfarin and have been told by my anti coag nurse not to avoid anything in particular apart from cranberries. She has said the best way to get your INR steady is to avoid sudden changes to your diet but we still need some Vit K. Hope your recovery goes well.

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Thanks... I am slightly worried that my diet will change a bit as usually I m the one doing the cooking... keeping vit k on though as i’d Eat spinach, broccoli, cauliflower normally

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I wish you all the very best for a speedy recovery. You are my daughter's age.....Good luck. Clare

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Mark, exactly the same thing happened to me at 42. No family history at all. Just happened out of the blue. Mechanical valve and lifelong warfarin. Unbelievable. Never been near a hospital before !

Physically recovery was quite smooth but it did unsettle me psychologically for quite a while. Always felt almost resentment (wrongly) towards the other patients at the coag clinic. In my mind they were in the age group that this sort of thing happened to. I wasn't. Although on one hand I knew how very lucky I was to be alive, I also had a bad case of the "poor poor me" syndrome. Still do sometimes lol.

Now 20 years later I can tell you that you will get back to normal. The scars fade away and the warfarin just becomes a minor inconvenience.

Just don't rush things and don't let this situation dominate or dictate your future.

Martin

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Thank you so much for your reply Martin. It s really helpful to hear that... Although they said the valve would outlast me I also still worrried about life expectancy... so to hear this is 20 years ago for you is really encouraging. The only thing I had before this was a broken arm a few years ago from falling off my bike on my way to work from the gym... I was so impressed with the nurses and staff though... I am trying to be positive, but still early days and the occasional bit of blood here and there and nosebleeds get me worried at the moment.

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Mark you in the very early stages of taking warfarin. It might take a few weeks to settle into the range that they want you in. Unfortunately you will have a few bleeds which can be alarming. Obviously anything major needs to be dealt with in A&È. That's only happened once to me in all this time. My own fault too!

It's a hell of a shock to go through what you are going through and if you need any support or advice from someone who's has been in a similar situation then feel free to contact me anytime.

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Mark, sorry to hear this happen to you. I also had an AVR operation last March after an enlarged aorta was picked up. Warfarin levels soon got to normal. Local nurse came out to me to take INR bloods because I couldn't drive (after having a minor stroke and epilepsy after the op), so that may be an option if your finding it hard to get to the surgery! It must worry all of us that's been through this and I find myself googling everything mechanical valve all the time. To have seen that Martin had one still going strong after twenty years gives me great comfort. He must be about the same age as I am now (63). Stress at work still gets my heart racing, it probably did before, but the difference is I can hear it now pounding in my ears, but I am even getting used to that now. I wish you well and in a years time things will feel a lot better and warfarin will be a very minor inconvenience. Regards - Bob

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Unfortunately not everyone’s INR stabilises - I’m still having to have mine tested every week or so after nine years. Mine can shoot from 2.5 to 4.00 plus in little over a week. I hope yours stabilises soon.

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Hi Mark. I was diagnosed with heart failure at 31, totally unexpectedly, so I can sympathise with the shock you are obviously feeling. There are a lot of us "young" (har!) folks round here, so you are definitely not alone in that regard.

The early stages of diagnosis/treatment are definitely the hardest, feeling like the rug has been pulled from under you and so many questions and worries. I'm six years in to living with my diagnosis and can tell you that it does get easier, much easier. It sounds to me like you are making a very good start in dealing with everything, reaching out to people here and getting together a list of questions for your doctor.

I was only on warfarin for six months, but even within that time I had begun getting used to it. As others have said, it is very early days for you, hopefully your INR will stabilise soon and stop being such a major factor in your day-to-day life.

You must be frustrated to be hit with something like this when you have led such a fit and healthy lifestyle, but I'm sure your pre-existing fitness will help you during your recovery and beyond. Good luck with everything going forwards and keep us all up-to-date with your progress :)

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hello - im 17 and will have to be having open heart surgery i a few months due to a rare conditon . while different to your situation i understand what you mean by shock - i'm young , fit , healthy , and was always told i would never need surgery. until this changed around 5 months ago. drop me a message if you would like to chat more about this or just a chat as a distraction . we are all here to support you x

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