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Date for surgery.....àm twitchy now

Posted , 5 users are following.

roy72611
roy72611

I have an ascending aorta diagnosed in Dec last year and a furthe CT scan done on the 3rd Jan this year. I had an appointment with the consultant today. He advised that the root of the ascending aorta was borderline at 5cm the rest of the aorta was normal with slight leakage on the Aortic Valve which he considered would be best left alone. He offered surgery on the 4th May. I am unsure if I should wait or should I grab the offer with both hands. I am a 70 year old male quite fit and lead an active life. Would welcome peoples comments/Advice. Thanks Roy

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  • Barbe
    Barbe roy72611

    Posted

    I was just diagnosed as well I haven't been to the heart Dr. Yet found mine on a lung ct. I am scared and don't know what I should do either.

    Praying for you to have the best outcome.

    • roy72611
      roy72611 Barbe

      Posted

      Sometimes we just have to be brave. Trust that you will be looked after and hold your breath and jump in. Are you in the UK? Roy
    • derek76
      derek76 roy72611

      Posted

      When I had my aortic valve replaced the porter wheeling me down to the theatre said that I was the calmest patient he had ever seen. It is just like getting in a plane and you trust the surgeon as you do the pilot.  
  • xtine
    xtine roy72611

    Posted

    Hi Roy

    Yes I think you should take it with both hands as it were. Be very interested to know where you are in the UK.

    Though I totally understand your trepidation! but its a life saver. The stats for elective surgery are excellent. It's good that you are being so well looked after. Do you happen to be under the Liverpool Chest and Heart Hospital?

    Christine

    • roy72611
      roy72611 xtine

      Posted

      Hi Christine. Thanks for your reply and you're spot on live in Lytham and am being looked after by LHCH. Its a bit of a journey(about an hour) but i think its worth that. The care at LHCH as been up to now absolutely first class. Do you have experience of LHCH. Nice to hear from you. Regards Roy

    • xtine
      xtine roy72611

      Posted

      Thanks Roy, you have really helped me! You see I am being treated at Leeds and I am not impressed and seeing your treatment it seemed so informed and prompt I guessed it must be Liverpool as they are the best. (I have done extensive research) I am going to ask to be transferred though I don’t know when! 

      It’s a rotten thing to have (mine is ascending 4.9) and you want to feel you are with the experts.  So good for you. Neither of us want heart surgery. But at Leeds they prefer to call mine a swelling and when I asked why they said they preferred the euphemism. Aaaaa The disinterest has been palpable though they are doing all the tests. Leeds has a big cardiology department but I just don’t think aneurysms are their forte but I bet they won’t suggest I go to Liverpool. I think after my next scan in April (I requested a CT with dye this time) I will ask to be transferred. And I think I have to do this via GP?  How did it happen with you?

      My daughter isn’t so pleased as it is much further to go for appointments and you know how weird it is not even having symptoms, very tempting to forget about it....but I think we are quite lucky, to be relatively near. (Trans pennine public transport is awful, be easier for me to go to London) if necessary I will get a taxi just to feel I am being looked after by the experts in thoracic aneurysms. 

      Thanks Christine 

    • roy72611
      roy72611 xtine

      Posted

      Hi Christine. I have AF and during a routine scan they picked up the aneurysm at 4.9cm that was july last year. In November I met with the consultant who organised a ct scan with contrast. He said lets look at everything while we're at it and if there are blocked arteries we will sort that too. Anyway, all was clear apart from the ascending root which is the bit between the Aortic valve and the Arch. His reasoning to do it at this stage was to save my own Aortic valve which was only leaking very slightly. Leave it much longer and he would have to replace the valve too ....so all is set for the forth of May. We can only make with advice what we consider is the right decision for us personally. I have been very happy with LHCH. When i was leaving the consultants office is last words to me was " Don't worry Roy I will look after you" words like that help to give you confidence. Roy

  • xtine
    xtine roy72611

    Posted

    but how did you get to the LH&CH was it always your nearest hospital?

    You know I have just logged onto to my patient records at my gpsurgery and they dont even have my ascending aortic aneurysm mentioned - am so shocked. And that is what I wanted a cheery note like 'I will look after you'. Instead don't even get much eye contact welcome or even a smile. It makes so much difference. So my struggle continues to even get my condition properly recognised.

    • roy72611
      roy72611 xtine

      Posted

      Thats sad Christine.. There are at least four hospitals closer to me than LHCH but i chose that hospital. Perhaps a visit to your GP and ask to be refered to a hospital of your choice.....it makes all the difference feeling safe and looked after. Fight your corner Christine. Roy
    • xtine
      xtine roy72611

      Posted

      Well i’ve Just written to Lhch! Asking for their advice. And I went online to my gp surgery and they don’t even have it listed as a current concern! Have to look into that. I have printed off the letters for referrals by gps and will try and book an appointment. Can you tell me the name of your surgeon? You can email me at, at any time. If there are any bits that you prefer not to be public.

      Thanks Roy

      Christine 

      Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

    • roy72611
      roy72611 xtine

      Posted

      Hi chistine . The moderator as removed your email address for reasons of security. I am more than happy to give you has much info as possible. I will gather names, tele nos etc. I am not sure how we private message but will look into it later today. Roy
    • roy72611
      roy72611 xtine

      Posted

      Hi Christine. Good morning. I was thinking of you and wondered did you make any progress with LHCH. Kind regards. Roy
    • xtine
      xtine roy72611

      Posted

      Hi Roy, I haven't one so yet but have made allthepreparations. Little things stop it - like not being able too make an appointment with my doctor - only a drop in emergency appointment - not being able to email him - but I can email the surgery with the instructions to GP referrers to the hospital...wishing it would all go away - waiting for an appointment for my April MRI which I haven't got yet...should I wait till after that? I must pluck up courage. It is also so very difficult forme to ge to and I don't feel my daughter is keen - it takes 2 and half hours on train to Liverpool then I would get a taxi to the hospital which is a long way out. It is much easier to go by car...but I am no longer up to doing the M62 alone. So it is these practical things stopping me...but my decision that it is the place has not wavered. Thanks for asking when I have made the next step I will have someone to tell! And you can tell me how it all goes....Also I only have to pop on a bus 2 minutes away for a ten minute ride to get to the LGI....  but I think I have got mypriorities twisted. However when you don't have any symptoms (except fear and anxiety) it is hard to take the step to surgery. As you know. The geneticist rang me from the LGI after they had done their full testing and found nothing on the 25 genes usually resposible and she had many patietswho had gone to Liverpool and understood my decision and implied she woulddo the same - without saying that there was anything wrong with LGI but Liverpool are the specialist hospital. Its a matter of confidence and faith isn't it. She said 'if anything happened' (I suppose she meanst a rupture) that I should go to LGI as time was of essence....oh gawd.

    • roy72611
      roy72611 xtine

      Posted

      Hi Christine, Thanks for your update...keep the faith and fight your corner. It is difficult to grasp the idea of major surgery when you don't have any symptoms. Sadly, most people don't know they have a dilated aorta until they wake up on the wrong side of the grass. Don't let it happen Christine, push push push for what YOU want. My surgery is now scheduled for Friday the 8th June. The consultant surgeon actually give me his email and telephone number in case I need to ask questions or just for re-assurance. How lucky am I that they even found the dilation before it became a major issue. Keep going Christine don't give up and certainly don't accept second best just for the convienance of others.

      Kind regards

      Roy

  • xtine
    xtine roy72611

    Posted

    Thanks Roy - that's just what I need. Sometimes you have to be in the same boat to really understand! What impresses me most is they way you are being treated emotionally and that is what most appals me about the treatment I am getting because how we feel about our healers and they manage to convey that to us is very important. It is an important part of healing. So that will make me go to Liverpool. Thanks. So they switched from May to June for your op? any reason?

    • roy72611
      roy72611 xtine

      Posted

      Hello again Christine. It would appear that the surgeon assigned to my case will be away unexpectantly and all his case load as slipped back. AYHO thats life. Take care.. Roy
    • xtine
      xtine roy72611

      Posted

      o that's OK then.(after your mail this morning I got a bit assertive with the hospital about my next MRI scan which is supposed to be in April but I have no appointment. They had no record of it... now they are going to chase and ring me. )

    • roy72611
      roy72611 xtine

      Posted

      Well done Christine....if you don't take control no one will. Go girl!!! Its your life, your wellbeing and your health. Well done!!! Keep pushing and don't wait too long for the phone back. Roy

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