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British Heart Foundation
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looking for advice and support x

Hi everyone,

I'm new to the site. I'm 33 years old and have just been told I need to have my second open heart surgery to have a mechanical valve fitted. I have had a previous heart valve repair but now need to have a replacement. I've had a relatively complicated last few years with 15 ablation procedures, a pacemaker fitted, a pacemaker removed and most recently diagnosed with 3 pulmonary embolisms in my lungs at Christmas. I'm now on Warfarin to try and help with the dispersing of the clots but my INR is proving very difficult to manage. I'm feeling anxious about having yet another surgery and hoped that by joining this group I could find some support from people who have been through the same experiences as me. Thank you in advance for your support. Xx

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Hello Sarah

welcome to the forum, I am sorry to hear of all your issues, can't offer anything in the way of similarity as I have had just one surgery but fully appreciate your anxiety over another. Have you tried speaking with the BHF nurses on 0300 330 3311.

good luck

Mark

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Thank you so much. I hope all is okay with your surgery?

I will give them a call. Thank you x

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Hi Sarah, Welcome to the site. Sorry to hear you have been through so much. I am in the same position as you. I had surgery in 2007 to repair my mitral valve, that repair has now failed and I am on the waiting list for a mechanical valve, should be about March.

My first thought was that I didn't want to go through surgery again but after a while I began to realise it was the only way that I might begin to feel better. It is a very difficult decision and it is great to hear from people on this site who have been through the same thing, I am sure you will get more replies once people see your post.

How long have you been taking Warfarin? I only started in October and yesterday I went for a training session for self testing . Hope your INR settles down soon, people on here tell me it can take quite a while.

Hope this has helped.

Best wishes

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Hi

Thank you so much for your reply. I'm sorry to hear that your valve repair hasn't lasted and that you now need surgery.

I totally agree with you about having it so we can feel better etc as it's been a long time since I didn't feel breathless and tired etc. It's just hard to think about tackling the recovery process again. They also told me last week that I won't be able to have any children as I will be on Warfarin for life after the valve replacement which is obviously a devastating blow but I will just have to pick myself up and carry on.

When will you hear about your surgery date? I'm sending lots of strength to you. I know waiting can be really hard xx

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Hi Sarah, so sorry to hear about the warfarin affecting your life in that way, I am sure I have seen a post somewhere about the same thing I will try to find it later.

I should hear in the next few weeks, do you have any idea when your surgery might be?

Take care

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I hope you hear very soon about yours? I have to wait until these 3 blood clots have dispersed a bit more. I see the team next month and then we decide from there. I would imagine within the next 3/4 months xx

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Yes welcome to the lovely forum Sarah.

My heart and lung issues are different areas to yours. So unfortunately I can not give acurate advice in that area I am afraid.

I am so, so sorry to read that you have had such a tuff time.

But through all your suffering, you can only give the rest of us hope with your bright, possitive attitude.

You sound like a lovely woman with a lot to give the world.

So I hope the cardiac team help you very soon, to have a speedy recovery.

You sound very strong mentally & that is half the battle you know.

You girl, you are going to do just fine.

Lots of cuddles of strength are sent to you. Please keep us updated on your progress. Jo 😊👍💛

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Thank you so much Jo. This is such a lovely message 😊

I hope that you are okay and that your heart and lung issues aren't not causing you too much trouble at the moment?

I do try really hard to be positive everyday because I can't change my situation I just need to make the best of it.

I feel so lucky to have found this forum with all you lovely people on it ❤️

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You are very welcome & I thank you for your lovely words.

Yes we still have to make our best efforts to live life to the full, don't we.

Keep smiling girl 😊😊

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Hi Sarah

Sorry you’ve got to go through another op. I had my first AVR in 2011 and had a tissue valve. Unfortunately that didn’t last as long as hoped and I ended up having my second AVR last November. This time I’ve had a mechanical valve fitted partly due to the fact that I also had my spleen removed in 2016 and there would be higher risk if I had to have more ops in the future. I am also now on warfarin but thankfully seem to be keeping my INR levels level. I also ended up have no a pacemaker fitted due to getting complete heart block after my op.

Apart from an extra few days in hospital, recovery went pretty much like last time. They made the incision directly down the previous scar and is really tidy, unlike the splenectomy scar which goes from the bottom of my heart scar to just below my belly button and is a right mess! Guess they thought that at 58 and overweight I wasn’t likely to want to wear a bikini or clingy clothes - which admittedly they’re right, but would still have liked a bit more care than just grabbing the incision and stapling it!

I hope everything goes okay for you.

Best wishes.

Wendy

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Hi Wendy

Thank you so much for your reply I am so glad to hear that you are feeling better after your second op. How long did your Warfarin take to settle down? Ive been on mine since December for my pulmonary embolisms and we still haven't got my INR right xx

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Hi Sarah

It took about a month for my INR levels to settle but I know some on here took several months. I'm sure you've already had all the info about what you can and can't eat, or can in moderation. Might be worthwhile keeping a diary of what you eat and drink as it might give the nurse some clues. Unfortunately for some people it does seem to take a while, mine probably settled quickly cos I eat such a crap diet!!!!! 😀

Wendy

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Hi Sarah

Sorry to hear of your complications. Can you talk over your understandable concerns with your heart nurse ? I am not on Warfarin but Apaxiban (since September) after an extended DVT from my left knee to my stomach and this has left me with post thrombotic syndrome. I had my Aortic valve and artery bypass in August last year at 70 years old and have been told hopefully it will last 5 to 10 years. I wish you the very best of luck, and hope your op is free of any complications x

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Hi

All great advice and but at this stage the apixiban group of blood thinners are not licenced to be used by those of us with a mechanical valve. I was told that research is on going and hopefully will be available to us in the future. In the meantime it's warfarin for us.

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I haven't yet had my mechanical valve but they tried the apixiban group of blood thinners first for me with these clots and unfortunately I had an allergic reaction so it's Warfarin for me.

I hope you both are doing okay? Xx

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What a shame Sarah, I'm very drug sensitive so feel for you. Luckily I was ok with Apaxiban except my hair is thinning! We are all so different, you have had such an awful time. X

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Thank you Sarah, I am doing well and have started a slow phased return to work after a difficult time last year.

It sounds like you are having a really tough time. This site is great for sharing with people who have some idea of what you are going through. You can ask any question and someone will give you advice or tell you where to try.

Have a good Sunday

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I had a keyhole valve replacement but possibly looking for the next one to be open heart surgery I’m feeling scared even though it’s years away. I’ve been told if I don’t change my lifestyle it’s got to be open heart surgery.

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Try not to let the future open heart surgery worry you and spoil the years you have before then. Things have improved so much and it's not as awful as people imagine. Mine went well and I was well looked after as far as pain relief was needed and out walking very quickly once I got home. Good luck ith your healthy lifestyle changes x

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Hi Sarah, I can't add anything to all the good advice already given, but it's true that a positive attitude will help you recover more quickly. Don't overdo things, and stick to the advice of the professionals. They know best and are dealing with problems such as yours regularly. All the very best to you. I hope you don't have to wait too long. Love Margaret xxx

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Thank you so much Margaret. It is so lovely to have support from all you lovely people. I will continue to stay positive and at work for as long as I can. Hopefully this year will be the year everything works. I hope you are well? Love Sarah xxx

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Hope you are still improving Margaret xx

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Yes thanks Joan. Luckily I've had no complications. I start my 8 weeks cardiac rehab next week and have my follow up appointment with the surgeon too. I get the occasional twinge when I take a deep breath and a pain in my neck. So I've not been able to rejoin my singing group full time as yet, though I do go to keep in touch. They have a big competition in May which I'm hoping to be fit for. We've not looked after the little people yet, but we are having the two youngest for half a day in half term. We'll take it from there. I hope you are getting there. I can't wait for the warmer weather!!

I was a bit concerned to read that your valve and bypass would only probably last 5 to 10 years. I was hoping mine would last 10 to 15, but who knows. Take care of yourself. Love Margaret xxx

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I think the surgeon was just covering all possibilities Margaret. Reading on here some don't last long. I'd not be worrying so much about another heart op more the DVT that followed 😬

Pleased you are doing well and hope your grandchildren can enjoy a longer visit in a few months.

Take care

Joan xx

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My view is that, if and when we do need a further op, it would be a TAVI, as the technology is improving all the time. As you say, there is no point worrying. We have been seeing the grandchildren regularly, we just haven't looked after them on our own, as we used to.

Have you felt well enough to book any holidays?

Love Margaret

xx

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Hi Sarah, l had emergency heart valve repairs on 01/01/17 due to sepsis then severe sepsis shock, also infective endocarditis eating them. l then had a pacemaker fitted which became infected. 5 weeks later my condition rapidly deteriorated and once again l was close to death so they drained my heart of infection and l had another open heart operation where they fitted a mechanical aortic valve and repositioned a new pacemaker under my ribs. l will not lie it is a long hard S**T recovery with drips and tubes everywhere but there are no choices it has to be done. Tomorrow is the one year anniversary of my last operation which took 11 hours. l am so grateful to be alive physically l am fine but l still suffer from flashbacks from the whole trauma of two open heart operations but they are not so frequent. Try and focus on something to look forward to when it is all over (mine was a new kitchen promised by my Husband, it looks lovely!) l am on warfarin for life and it is a pain to get the levels right but that is quite common. l had wonderful support from the lovely caring people on this site, we are always here for you. You can do this, l have so can you!!! Take care and keep in touch, Sue x

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