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Diagnosed with 5cm Aneurysm near heart

Posted , 21 users are following.

kristi18883
kristi18883

Hello everyone, I'm new here and just want some advice.

Two day before Christmas, I was diagnosed with a 5cm aneursym near my heart and told, "If it's not repaired, it will burst and you will die". The NHS cardiologist had only just seen my file and met me, 5 minute before that.  He also stated that if my valve is bicuspid, they need to replace it and repair the aneursysm now. So I've been waiting for either a tube down my throat, or an MRI to get a clearer picture. So far, I've only received a phone call, from that Cardilogist, on New Years eve, saying the Tube test should be end of Jan, beginng of March, but the MRI will be sceduled in the interum. 

I'm originally from America, where my possible bicuspid valve was monitored yearly with echos. I've been here in the UK just over 4 years and only ONCE did a Dr. so much as listen to my heart, until they thought I had a TIA. 

Is this typical of the NHS? Give you bad news, then make you wait?? Some say I need to go to my GP and see if they can refer me to another place to get the tests done...others say, play up your symptoms. I am somewhat symptomatc, but so far, I still walk a mile to the bus every morning, and work a 40 hour work week. 

Any advise, words of wisdom, words of caution...any thing...I just don't want to feel alone in this anymore. 

1 like, 105 replies

105 Replies

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  • kristi18883
    kristi18883

    Posted

    UPDATE: Things are moving along quickly now. I have an appointment for a CT angio Sunday, and MRI a week today, and 2nd of March is an X-ray and meet with the Surgery team.

    I have quit drinking, quit smoking (apart from e-cig, and working on it) and I still walk my 1 mile a day to the bus. I get a bit winded if it's a blustery day (pun intended) or if I walk my usual quick pace, and I'm getting the occasional pain in my right arm, but it goes away.  Other than that, I feel OK.

    • kristi18883
      kristi18883

      Posted

      Didn't mean to end that right then....

      What concerns me is the stories of the people who's anuersym just popped...and they nearly died, and the trama of that all.

       I  nearly lost my best friend to a blown aorta, and his life was miracously saved (thank the goddess  we lived within life flight distance to Stanford, CA). He never fully recovered. Then he lost his job, and his insurance, and stopped going to the doctor, and kept drinking and doing drugs...and he died in his sleep. Two years ago, 1st March. 

         I am thankful to have had him in my life, espically now, when I realize that the final chapter of his life, so mirrors mine,  But I still have time to edit my final chapter. Starting right now. 

         Wish me luck, and all the best to you all as well. 

    • mary-rose15619
      mary-rose15619 kristi18883

      Posted

      Hi Kristi. Glad to hear that things are moving along and that you are getting the medical support you need. Well done on making the lifestyle changes which will help you both in the short and long term. I have just started reading a book which I came across and which you may appreciate. It is called The Human Aorta: Your Super Highway of Life by Robert F Epps. It is informative and facinating as you read what Robert has gone through himself. Good luck with all your appointments and stay positve.
    • mary-rose15619
      mary-rose15619 kristi18883

      Posted

      Kristi, if you read the book I recommended, you will appreciate that miracles do happen and that for every sad ending (as in your friend's case) there is eqally an amazing survival story. it is one year since my sister had her surgery and when I see how normal she looks and acts, it truly inspires me. Within 6 months of surgery she went on a lovely holiday to Sicilly and for Easter this year she is planning to visit her daughter in Singapore. She feels blessed that the diagnosis was made which probably saved her life and my other affected sister and I are both grateful to know that we are now being moniored and are in good hands if things should progress. All the best.
    • kristi18883
      kristi18883 mary-rose15619

      Posted

      Mary-rose, thank you for the suggestion of that book. I have just downloaded it to my Kindle, and it just so happens that it's a "free" one, on kindle unlimited. Cool!

      So glad to hear your sister is doing well, and you're looking after yourself. Have a good day. 

  • Grimspite
    Grimspite kristi18883

    Posted

    The trouble with forums is that you rarely hear from people for whom it all went well. I was disgnosed with an abdominal aortic aneurism 12 years ago at the age of 53. It was 3.5cms then, and I had to wait for over three years until it reached the 5cm mark. The only symptom I ever had was backache, for which I was sent to an arthritis clinic by my GP. Never mentioned it to my surgeon, which in retrospect was silly. I had regular scans, which increased in frequency as the diameter got closer to operation size. I had the open surgery at Charing Cross Hospital, and was back home on day 6 without even a dressing, although I had to cover the scar for showers. I was driving again in a month. 10 days post-op the backache disappeared, never to return. I don't even need check-ups, the scar is barely visible, and I know people far older than myself who have had similar experiences. All on the NHS. Can't praise them highly enough for this. But I know how worrying it is waiting for the op. Once it's over you're born again.
    • derek76
      derek76 Grimspite

      Posted

      South East News on Monday or Tuesday featured a new surgery for AAA at Conquest hospital in St Leonards. Done under a spinal with the patient in her 80's cut wide open, awake and responding to the surgeon and discharged the next day. I have not found any reference to it yet on the Web.
    • Grimspite
      Grimspite derek76

      Posted

      The spinal open surgery is just credible, but discharged the next day? I have my doubts.
    • Grimspite
      Grimspite derek76

      Posted

      I think these are stents, as opposed to open surgery, which has always been a less invasive procedure with a much faster recovery time. However, this does look like a revolutionary new way of doing them. Stents are usually offered to older patients, and they need to be monitored. What I had needs no further action.
    • derek76
      derek76 Grimspite

      Posted

      She was well opened up.

      My one is quite low down and I hope my one stays small it has only grown from 3.1 to 3.6 over about eleven years.

    • Grimspite
      Grimspite derek76

      Posted

      That's a very small increase; you must be living a very healthy life!
    • derek76
      derek76 Grimspite

      Posted

      I don't really know why some grow more quickly than others. When I go for a scan I get welcomed with "Here comes the man with the little one"

      Does not matter how small it is when you tell a travel insurance company. 

    • Grimspite
      Grimspite derek76

      Posted

      True. But when I told my travel company I'd had the operation they gave me a refund of £76!
    • kristi18883
      kristi18883 Grimspite

      Posted

      Hi Grimspite. It's good to hear of another good outcome, however, your scenario is a bit different to mine. I must have my aortic valve replaced as well, and my aneurism is above my heart. 

      But yes, the waiting is stressfull at times. I work in a small village post office, and when word got round what is up with me, the pensioners are all no telling me that I don't look ill, and are more anxious for my appointments/surgery to be over with than me. lol

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