New very worried member

Hi i am 53 years old and have suffered for years with chest pain on exertion, I have seen many doctors over the years and had many tests, even been told its all in my head! After an ongoing cough 2 years ago i was sent for a chest x ray & a shadow was found on my lungs which lead to a heart scan & i was then diagnosed with a Bicuspid aortic valve with moderate to severe stenosis. Although in shock i was relieved to finally know why i had suffered for so many years. I am now under Papworth hospital & recently had a TOE which revealed the stenosis is now so severe i need a valve replacement! Im actually so terrified that i have started my anxiety off & keep thinking im going to have a heart attack at any moment. I would appreciate any advice on the surgery etc or just support to help calm my nerves.

15 Replies

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  • Hello Kazcoles, welcome to the forum. Sorry to hear of your diagnosis, its great its been found and now treatment can start. We have some fabulous members here some of whom have had the same as you and who will be along to give their experiences. In the meantime there are some threads that you may find useful.

    healthunlocked.com/bhf/post...

    healthunlocked.com/bhf/post...

    healthunlocked.com/bhf/post...

    healthunlocked.com/bhf/post...

    Its perfectly natural to be scared and anxious, but you are in good, well practiced hands. You are unsure about what it involves, how you will cope post op and various other things rushing through your mind. Take some time to think of questions you want answered, make a list of these, we have all been to see the doctor and forgotten to ask something. This may alleviate some of your worries, read the threads above, personal experiences, ask the contributors for advice, either open on the forum or via the message facility. Call the BHF and speak to their wonderful volunteer nurses, heart helpline 0300 330 3311, 9-5 Monday to Friday. they also have a very informative website bhf.org.uk/.

    Give google a miss, really do, most of the opening links are worthless and you really do have to search for a lot of information that is freely available by the BHF and on here.

    Most of us don't bite, we like a chuckle, we love a good recovery story and we urge each other on, we give sympathy, candid assessments of various GPs and cardiologists and the treatment including medication and side effects.

    Take care I hope we can be of some help to you

    Mark

  • Welcome, Kazcoles. As Mark said, there are lots of people on this site who have been through similar treatments and even those of us who haven't know how terrifying all things heart related can feel. I'm not surprised you are a little thrown by your diagnosis, but it is fantastic that you now have a cause for your years of symptoms and a plan of action going forwards. Do keep us all posted on how everything is going and how you are feeling. All the best x

  • Hi, no need to panic, I underwent a similar process to yourself, I was told I needed an urgent valve replacement but had to wait a week, told to go home and do nothing! A week later I had the valve replaced with a mechanic one, go to the rehab course you’ll be offered and you’ll be fine.

  • By joining this forum you've already made a positive step. You are bound to be anxious, it's only natural. You are in excellent hands now. Follow the hospital's advice and take it easy. I'm in the same boat as you, waiting for an AVR. On the outside I'm very positive, but inside I'm terrified! Have faith in the marvellous surgeons at Papworth and trust that they will do their absolute best to make you well again. Keep me posted on your progress. Best wishes. Margaret

  • Hi, I am recovering after having a replacement aortic valve just over 6 weeks ago. I was also terrified beforehand as it was a complete shock - originally diagnosed in March and operated on in August so plenty of time for anxiety etc. I was late at discovering this site and hopefully you will gain some comfort and relief from anxiety from hearing of the many successful outcomes - as well as some of the discomforts along the way!

  • Hi, when i was in Hospital waiting for a decision from my consultant and team I was really worried about what they would say. I found music to be very helpful to relax. Pop some headphones on to block out any distractions and relax. Plan some time away for yourself if you can. My tastes in music are extremely varied but i'd favour Sam Smith, or 'chilled out lounge' music. Hope this helps.

  • I was diagnosed with a heart murmur when I was 16 so had plenty of time to get used to the fact that I would eventually have to have heart surgery. Mine was aortic regurgitation and at 53 I eventually had the valve replaced. The prospect was terrifying but I found the BHF booklets extremely useful and informative. Unfortunately I had a tissue valve which is failing and am due in Glenfields next week to have it done again, but this time I'm having a mechanical valve. I know it's a scary prospect, but I found the hospital staff very supportive. The first day after the op I felt like hell, but the following day they had me out of bed and moving around and was allowed home after a week. There are plenty of us on here who have been through the same or similar ops and between us I'm sure we can answer most of your questions, so ask away.

  • Hello thank you for your reply i am so concerned about spending time in icu after the op, i see my mum in there 4 years ago after she reacted to anesthetic after a small op and we were told to say our goodbyes. thankfully she made a full recovery but seeing her with all those tubes etc has terrified me. I am particularly worried about the breathing tube as iv heard its very uncomfortable? I have had few operations over the years but this one is a different level. I have decided i want a tissue valve but am also concerned as they do not have a very long life span and this seems to be the case with you.

  • Hi Kaz, I can understand why you are so worried after going through that with your mum. I can only speak from experience and say that I don't remember have no the breathing tube in at all, I just had the little oxygen tube under my nose when I woke up. My throats was slightly sore for a couple of days I opted for the tissue valve the first time cos they said it would last about 15 years, unfortunately in my case it has only lasted 6. I also didn't want to be on warfarin for the rest of my life. This time is different because I have the added complication of having had my spleen removed last year so now have a compromised immune system, which means the risks are increased if I opt for another tissue valve and have to have a third op. I didn't think it was worth the risk so I've opted for the mechanical valve, although still concerned about being on warfarin.

    Wendy

  • Hi Wendy oh so your valve only lasted 6 years that's not long, I really don't want to be on warfarin so definatly don't want a mechanical valve although because of my age I reckon they will suggest it. Im relieved you say you dont remember the breathing tube as that is a big fear of mine.

  • Like you I don't like the idea of being on warfarin, but having spoken to several people on here who are on warfarin they have soothed some of my concerns. I think I would rather take that and have a mechanical valve than having to go through any more major heart operations. I suggest you have a good chat with your consultant, if he's like mine he won't force you to have something you don't want.

    I can't remember anything about my actual operation. I vaguely remember being given my pre-med and the next thing I was waking up in the ICU with my husband there, I must have gone back to sleep cos the next thing I was back on the ward! Hoping for the same this time.

    Wendy

  • Thank you so much Wendy you have helped a lot with my fears I wish you all the luck with your next op x

  • Hi

    I also have a bicuspid valve but mine has a severe leak (and a moderate leak on mitral valve). I'm in my late forties and also don't want to be taking warfarin. I also couldn't put up with the clicking sound of a mechanical valve.

    I researched and found this new anti calcification tissue valve that should last >20years but no guarantee.

    Mentioned it to my surgeon and as a result I will have this valve fitted.

    Here's the product link:

    edwards.com/devices/heart-v...

    Also link with newspaper article:

    dailymail.co.uk/health/arti...

    All the best

    Marco

  • Thank you so much Marco you have made me feel so much better about the valve replacement, i will definitely be asking for this valve at my next appointment.

    Kind regards

    Caroline

  • Thank you to you all for your kind replies just knowing other people have been through similar experiences and can answer my questions really does help x

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