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

Thinking of you. Hope all is well. I am originally from England transplanted to Ontario, Canada but lots of family still in England. We are at a similar stage with our "heart" stories so fell free to contact me if you want to vent or share info. Take care. Thinking of you.

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

Hi Susan Congratulations on the birth of your 'First Grandchild" I understand you had an appointment with The Cardiologist and he has put in touch with The Valve Specialist @ Kings College, London I will be very interested to know the name of the cardiologist & also valve specialist Since 2010, I have had various heart conditions (Aneurysm, triple bypass surgery, valve replacement etc) and have dealt with Cardiologist, Surgeon etc @ Kings College I had to seek second opinion after my initial triple bypass surgery as I was not at all happy with my team @ Kings. Prior to I update you with my experiences, I will be very interested to know names of Cardiologist and Valve Specialist you are dealing with @ Kings College, Denmark Hill, London Kind regards

Yes, I had retinal migraines prior to heart surgery as well. As a teenager, I had awful full blown migraines with nausea and headache. They changed as I aged to just retinal migraines. I found the stress of the whole aneurysm/open heart news increased the number of auras for me. I had dozens in the first few weeks following heart surgery as well. I am guessing the stress of the whole situation triggered them.

Hello there, your story sounds very similar to mine. I was actually born in England but moved to Canada as a child. Diagnosed with bicuspid aortic valve many years ago. Maintained a mild to moderate status my whole life, then suddenly moved to moderate/severe. I was really upset when I was told surgery was imminent. I am now still watchful waiting as I also have no symptoms. I see the Cardiologist every two months. I was having low blood pressure but meds were changed and I feel fine again. Being in "limbo" knowing you have this is not fun so I can definitely relate. Telling my kids was tough but they handled it much better than I thought they would. Keep in touch and we can share our "heart" adventure.

Susan, hello from the other side of the pond! I understand well your concerns. I am 60 and just had my AVR. They found a heart murmur 5 years ago and did a work up and found nothing, then this October I started having chest pains when I walked up steps. Went in for a check up to my cardiologist and she did not like what she heard...long story short. SEVERE aortic stenosis and surgery was October 27. Like you I eat healthy, been off and on vegetarian most (40 years) of my life, I bike and kayak and hike. This hit me out of the blue. They told me that I have no heart disease - arteries are all clear and there was nothing I could do to prevent this. Doctor said he wished his patients were this healthy. Go figure, how did this happen? Well, I am 5 weeks post op and I feel great, sore but good. I moved home yesterday and have been puttering around the house and getting settled back in. I hope and pray that all goes well for you. Oh, I had minimally invasive surgery - 3-4 inch incision. God bless!

Sorry to hear about your diagnosis. It is a shock to hear, especially living a healthy lifestyle.. Please don't feel ashamed of your diagnosis! There was nothing you could have done differently to change this.. I had the same unwelcome shock last fall when I was told I had an aneurysm on my ascending aorta due to my bicuspid valve. I had surgery 7 months ago and am fine now. Just take your journey , whatever it may entail, one day at a time. You will get through this!! All the best to you.. Marie