Susan's Guestbook

Hi Susan I live in Suffolk and my story is quite similar to yours. For a number of years I had been having 6 monthly echo's to monitor and assess my "leaking aortic valve" .I was initially told that I would need a replacement aortic valve operation in my mid to late sixties ( i was 55 at the time) but for now I would continue to have six monthly scans. I went for an echo in March 2017 and with no real change to my condition was told to that I would receive another appointment in 6 months. How things change!! In September 2017 I had my scan just before our summer holiday and on my return I attended the pre arranged consultation with the cardiologist in early October. I told my wife that there was no need for her to come along with me as they'll be telling me to come back in 6 months!! Despite there being no change to my health or fitness and following my holiday, I was feeling really refreshed, the cardiologist advised me that the valve had degenerated significantly during the last 6 months and my aortic stenosis was now sever and therefore i would need to have a AVR within 12 months !! By good fortune I have private health care and given this news I made the decision to take ownership of the situation and manage the next phase myself. I'm happy take you through the journey if it's of interest but the result was that I had a aortic valve replacement operation at Papworth Hospital on 29 January 2018 (just after my 59th birthday) It's now some 9 weeks post op and I'm really well. Ive been discharged by my surgeon and am waiting to see my cardiologist. I still have to take care when lifting heavy items, but I'm on my cardiac rehabilitation course now and I will be returning to work in the next few weeks. If I can be of any help in any way by sharing any experiences or answering any questions please do not hesitate to post me a note. Take care John

Hi Susan I read your latest update with interest & concern Year after my triple bypass surgery in 2013 I was diagnosed with mild Aortic @ Mitral Stenosis and one of my bypass graft was occluded ! My original team @ Kings advised me to re-do open heart surgery. ! was not happy with their advice, hence I obtained independent second opinion and also my case was discussed by MDT (consists of app 15 specialists) They confirmed that there no need to do any surgery but monitor my conditions six-monthly with Echo and consultation. Over next 3 years my Aortic Stenosis progressed from mild to medium to severe. So I was consulted by Surgeon/ Cardiologist etc and was advised to do TAVR (less invasive procedure) TAVR procedure was successfully performed in December 2016. Since then, I feel ok and still go for 6 monthly review (Echo+consultation) My mitral stenosis is mild and so far not progressed any more From my personal experience and advise of team of Professionals, I suggest: - attend valve specialist appointment - prepare and ask relevant questions - seek second opinion - and then make informed decision Hope my suggestions are helpful to you Kind regards