Sophia's Posts

Hello. Just returning from my annual check up.... had MV repair Nov 2015 I was hoping to get all the way to 52wks without a heart event but Just after Christmas I had upper chest pains and funny beats so as it was getting more pronounced thought best to get checked out. I was ok but had multiple ectopics. They reckon that the usual stress of Xmas coupled with drinking far too much caffeinated tea (us Brits do like a cuppa!) that I had set off a chain reaction - adrenaline increased, set off cortisone leading to palpitations and feeling of anxiousness for no reason, which then fed itself as I got more anxious! After a rather bouncy ecg which was somehow in sinus, I was sent home reassured. I saw the cardiologist the following week with, by then, my right leg was swelling so I was packed off for an echo and an ultrasound on my leg. Ultrasound is ok, have a vein at the rear of my leg which has swelled to 1cm width, need to take preventative measures and hopefully will recover. (Don’t cross your legs!) The echo was fine, the valve doesn’t leak but is calcified (not much I can do about that), I was a little worried to read the valve detail but I discovered that one approach to MV repair is to fix a leaflet in place and then the other works like a trapdoor. Remarkable!!! He’s v pleased with the repair, so that’s good. I also had a 24hr tape. I have 2.5% ectopics of various flavours (single, couple etc) which is slightly lower reading than last year and was v pleasing considering it was still getting over the caffeine anxiety. 2.5% is pretty normal. So pleased too that there was no sign of any AF. The ectopics were 7% 18mths ago, so shows as the heart gets over surgery it does settle down. 😊 I’m to continue with betablockers and aspirin and see him again in a year. A byproduct of my echo is probably a good thing... we don’t have scales at home so I had a bit of a shock to find I was 10kg heavier than 2 years ago. All my rehab fitness had gone so all this has prompted me into watching what I eat and getting back into walking and doing some exercise. No marathon for me, but also no chocolate croissants, but I do feel better after two weeks. Think it’s easy to get complacent one you feel “fixed”! 😆 Best wishes everyone, pre / about to / post surgery. What a wonderful site this is!!

Hello!! My second re-birthday was on Saturday. When I think of the journey to get to say that, I marvel at medical science! I have Cardiac EDS, and had a severely regurgitating mitral valve. I was diagnosed with EDS just months before the sharp chest pain which sent me to A&E... first I knew that my murmur was leaky. I was petrified. I was in denial for weeks until TOE when I was told surgery was only option... I’m so so glad I found this site, got me through! On the 18 Nov 2015 at Royal Brompton, London I had a mitral valve repair, atrium hole repaired, goretex strings fitted for future proofing and atriclip fitted. Following surgery I had AFib which hung around like a bad smell for weeks - each time cardiologist thought I was in the clear with “just” multiple ectopics, I stopped taking Rivaroxaban and it came back! I think I took Rx for a year just in case; I’m still on betablockers today and take soluble baby aspirin, as well as Omega 3 which I swear by (thins blood so check with GP) My heart goes a little wobbly if I’m exhausted - I get silent beats as if beating half time and that’s tiring, but - touch wood - no AF since and haven’t seen/contacted my Cardiologist since the start of the year. Aura migraines are my post op nemesis... I get them due to low blood pressure, bright lights especially reflecting of stripes and being in hot, confined places such as the London underground. I try to drink a pint of water quickly, which sometimes reduces the effect. Usually have 20-30 mins of dancing crystals, with numbness of my left arm and loss of peripheral vision a new (scary) addition... GP sent me for ITA tests (all ok). If you have an atriclip, they need to change MRI settings. Top tips... here’s a few... * keep well hydrated before surgery and drink 2 litres of water daily. It will get you up to go to the loo, if nothing else, after surgery... and post catheter you’ll move quicker than you thought possible! * Walk, walk, walk and do cardiac rehab * measure your recovery in weeks not day by day * Set achievable goals and celebrate the smallest of wins * Eye mask and ear plugs for hospital, you need to sleep; and bed wedge and shower chair for when home * you will get stronger, but there will be dark days. Seek help before you really need it. I spoke to a Cardiac psychologist before surgery, during my hospital stay and afterwards - Highly recommended. Well, I wish I could report that I had run a sub 4hr marathon, or climbed a mountain but, no, I’m just getting on with every day life as a working mum of two, each day forgetting a little bit more that I’m a heart patient but wearing my scar with great pride! Best wishes to all waiting for surgery, or recovering. You can do it! 💕