Sophia's Journal

Hello!

Back in June 2015, I learnt that the murmur that I had diagnosed as a child, and never checked as it “would not have any consequence to my future health”, was severely regurgitating and required urgent surgery.

In Nov 2015, I had my mitral valve and a hole in the heart (that I knew nothing about) repaired.

I have to confess that it was heck of a journey - thankfully guided by this wonderful website - through post-op AF and recovery but after 6 months I felt stronger and could look forward… In the years after, if I ignored the daily beta blockers and aspirin, aura migraines and the great big scar, then I could even forget I was a heart patient!! Incredible, I know!!

And so we fast forward to last year. My annual echo resulted in a decline in my EF%, a number I hadn’t focused on until then. I was still marvelling at the reduction in ectopics, but alas, getting 50% wasn’t really a great mark in the eyes of my cardiologist… and after some wish-I-hadn’t googling, I agreed to yet more medication to counter prospective heart failure. The joy in that term!! And so my bubble burst and I returned to being ultra cautious once more.

Well, there is a moral to my tale… if you do as your doctor tells you and don’t get scared off with armchair experts, you can be surprised! My latest echo shows that I’m back to 56% and as he put it, I have a “fully recovered heart”. Music to my ears! (I still rattle with all the meds, just in case)

So, please have faith, there will be dark days but look in weeks not day to day to see progress - Some bounce back and for others of us, our heart just take their time.

And yes, I remember reading these sort of posts, and no I didn’t suddenly find I could run 5k let alone a marathon, but they did give me a glimpse of hope. So I hope I’ve given a glimpse! Good luck to everyone waiting and recovering!

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! 💕

Hello, best wishes to all approaching surgery and those in recovery 💕 I have a question which is probably just nerves... I would like to go on summer holiday abroad this year, but I'm quite nervous at being away from comprehensive medical cover (i.e. Good old NHS!) - it more my allergy to hospital detergent than my MV that troubles me! I have been fine for months, no AF, take Bisoprolol and Rivaroxaban still. I know some have taken holiday within 18mth -2years of OHS. What considerations did you have when planning? How long did you fly for? I would really like to go again with a UK travel company with great activities for the girls, but that's to Greek islands. Maybe I should stick to a mainland resort? Any advice very welcome. I'm all a dither! Maybe even Florida would be a better option, as I know if I go into bother, I'll be set on the right path by my heart friends! Next year I would love to take them on safari in South Africa so I've got to muster up the courage!!

You may have seen about this, but sounds so fantastic I wanted to post it just in case... http://www.rbht.nhs.uk/about/news-events/first-uk-patient-has-pioneering-procedure-to-fix-leaking-heart-valve/

Hello all, sorry for the radio silence over the last few months. It's nearly 14 months since my mitral valve repair at the Royal Brompton, London. Been an emotionally bumpy ride as my father was taken into hospital at the beginning of October following a fall. He had battled GPA (Wegener's granulomatosis) and various related complaints including kidney failure and COPD for far longer than the medics expected, but unfortunately he lost the battle at the end of October. His funeral was the day before my OHS anniversary, it was personally hard to reconcile his death with my essential "re-birth". Made me face what could have been for my young girls without the miracle of OHS. It's also a time to reflect on the gift OHS has given. I am more/less back to full strength. I'm still taking bisprolol and rivaroxaban, but hope to reduce these shortly. My ectopics are lower (1500pd) which I can only attribute to taking Omega 3! If I'm not religious about eating regularly and drinking enough water, I get dizzy / feeling faint spells and occasional ocular migraines which seem to be related to low blood pressure ( I've read the prior post about balance with great interest) but, on the whole, I actually forget I'm a heart patient!! I've slipped into some bad habits (working late, little exercise) as I injured my knee but once ok from Physio, I need to get back out there as I felt much better generally when felt fitter. Continue to eat well, although chocolate seems to have creeped back into my diet!! So, no great sporting achievements to report from me! When I look back over the last 18mths with the build up to surgery, the op, post surgery AF and recovery, I have to pinch myself. I still remain in awe of the medical profession. I couldn't have got through it without the support of my family and this website - you are all fantastic, don't forget that! For those awaiting surgery, preparation (mental, physical and practical eg batch cook to freeze, recliner/bed wedge, shower chair) is key and faith in your surgeon - you can do this! I advise you to keep well hydrated in the build up to surgery, I didn't and needed transfusion due to low BP. For recovery, the first few days will knock the stuffing out of you, I've never known such exhaustion but you will see small improvement as tubes are removed and after that first shower - Heaven! The breathing tube is not scary just uncomfortable, you'll be in a daze anyway. Take earplugs / mask with you if noise / light stops you sleeping. Coming home might be bumpy, but look at your recovery week on week, not day by day. You will encounter set backs, but celebrate your wins however small. Cardiac rehab is wonderful for building confidence and strength, highly recommend this. My return to work was staggered over the first month as it's quite a shock returning to commuting and a full day in the office, you will know what's right but listen to your body and take it gentle. The scar does fade, the nobbly bits of stitches do dissolve as does the fatty lump of tissue at the top of the wound, and with Physio the shoulder and neck pain goes. I am still conscious of my heartbeat and pressure but you'll stop checking it so often and just learn to read the signs ahead of time. I read my pre surgery echo report only the other day. It put it all into perspective as my leaflets were described as redundant. I can not thank everyone enough for this second chance! All in all, you can do this! The new normal is pretty good!! ❤️

I'm in A&E with IV magnesium coursing into my vein. Praying that it will bounce me back into sinus. I stopped my Rivaroxaban on Friday as had no trouble for months. Looks like it was helping. Fingers crossed this works! Best wishes to all facing surgery and those recovering. Sometimes there are hiccups but the quality of life is far better post op.

Few weeks/months ago I said that I was having a brain, eye and blood vessels MRI due to migraines and eye blacking out. Apart from some age related things, the results are "unremarkable" so all's fine, which is good news. I have to assume that it's medication related, and I'm not sure when that will change to find out. I'll discuss more when I see the neurologist. Best wishes to all facing surgery and those in recovery.

Had my follow up echo today, nearly 8 months post mitral valve repair. Cardiologist said that apart from the obvious signs of the operation, it was all pretty normal 😊 Music to my eyes, and believe me, there have been times when I thought these words would never be said. Not sure on which stats are important but the left atrium is now in the upper range of normal so shrinking (got to step up the exercise!), my EF is 58%. The mean gradient of MV is 4mmHg @ 70bpm. I'm wearing a 24hr holter monitor to check how many ectopics I have (post op was 3,200 daily with many bi and tri ones and atrium ones which slow me down) so I'll get those results in a fortnight when I hope I can come off my blood thinner. I have noticed that I feel more ectopics after I've taken my meds so be interesting to see if this is the case. I've had my neurology MRI and await the results to see if anything is causing my migraines, I'll let you know when I've seen the neurologist. Feel like today was closing another chapter of my OHS book, oddly I felt very exhausted when I got home! Best wishes to all X

During my mitral valve repair the surgeon installed an atriclip as a preventive measure. I haven't really thought much of it until now, as I prepare for an MRI (need to follow specific conditions). The atriclip is a device used for left atrial appendage closure (LAAC). The appendage is where 90% of clots form during AFib. http://www.atricure.com/atrial-occlusion It was co-invented by Dr Gillinov (Cleveland) and so I'm expecting (hoping) he would use his invention. If not, I'll be more concerned! I've never heard of anyone else mention it, so I'm curious if anyone else has one.

Due to my continuing aura migraines and more so my left eye blacking out (I stood up quickly and couldn't see through left eye for a few moments, then lower half of my sight returns for a further few moments and then fully restored, no headache) I'm due to have an MRI on my brain and neck blood vessels tomorrow. The neurologist doesn't expect to find anything troublesome, but wants to be sure. As a year ago I went to GP with odd chest pain and which resulted in OHS, I'm doing fairly well keeping a lid on my worries but it's more my new metalwork that's worrying me... I've got a valve ring, atriclip and sternum wires. The heart surgeon said it was fine to have MRI. Has anyone else had MRI post OHS? Any advice?

In short, I have seen considerable benefit since attending cardiac rehab and I urge anyone doubting to attend. I did private 1-2-1 classes and also NHS group sessions. It's given me the confidence to do more exercise now than ever before. And getting my atrium back to normal size has been a great motivator. The exercise, camaradarie and been able to discuss niggling issues with a cardiac nurse without bothering the cardiologist was collectively very beneficial. Thank you those ahead of me for inspiring posts of what post op looks like!

Wow, time is now flying by! Can't believe I'm 4 months already. Looking back, it seems quite surreal what I've been through. Thankyou everyone for holding my hand through this!! Returned to work on short days. Being in the office is good as feel like I'm getting back to normal, but the commute is exhausting. It's not the speed I walk, it's the rush of everyone else... And that time is meant to be before rush hour! Still on beta blockers to suppress rate and Rivaroxaban just in case of A-Fib. Happy to be as concerned the stress of returning to work might set it off. I am still getting these aura migraines, no headache just crystally eye disturbances. They are now nearly daily, which it beginning to distress me, so off to GP next week. They started post surgery usually when BP low, which was actually handy to know(!) They restarted after I raised and then lowered my Beta Blockers, now there's no trigger - I've checked BP and blood sugar. I suspect it's to do with bright light.,They last 20-30mins. Need to go back to optician too as new glasses are useless too :( Had recently a few occasions of breathlessness when walking and my fitbit has shown spikes in my pulse. I get twinges and aches, which I'm told are muscular... Wish that they weren't on my left as anything these days can worry me! Anyway, cardiologist suggested an exercise echo, which is how I'm celebrating my 4 months tomorrow. It was my birthday earlier this week, found it rather mixed emotionally. When I met the surgeon he said that I needed my OHS within 6mths... He didn't say the "because if you don't" part but I could join the dots. That 6mth point coincided with my birthday, it's good to be passing it with a fixed valve! Now I'm looking forward to the warmer weather to get out walking more and strengthen this heart!! Best wishes to all. It's an incredible journey and so glad to be a member of this wonderful site! X

Survived my second day in the office! Gosh, it was quite a shock to the system to dress smartly and be all made up, rather than pulling on jeans and multiple tee-shirts! Occupational Health have been very good at setting realistic timings as I have an hour commute into Central London and onwards, so I'm doing shorter days and also working from home. It's more the commute that will exhaust me than being at my desk, especially the hustle when it's busy. Being in was wonderful - the warmth of colleagues and the familiarity of the surroundings. I've been blessed with a highly dedicated lady covering my role, which will hopefully make settling back in easier. Just got to pace myself.... One thing I'm very conscious now as my cardiac rehab is coming to an end is that I need to keep up my exercises. There's a Phase 4 club locally which I hope to join, but as I didn't go to the gym beforehand this is going to require discipline especially as I'll be working.

Hello all, I'm now 12wks post mitral valve repair. It seems like a lifetime away. I had an echo today which was all positive, I'm to remain on medication for the time being whilst the ectopics settle. I'm to see the cardiologist again in 6 months and will be returning to work shortly (yikes!) What I'm concerned with is that I have a hard lump about an inch from the bottom of my sternum, right side. I've noticed it over the last few days and it's uncomfortable. Has anyone else had / got this?

Hello, Thought I'ld warn all post ops about overdoing it... I'm no gym bunny so all this exercise we need to do is quite new to me! After an epic walk on Wednesday, I did far too much yesterday and finished it off with an hour of intense rehab. I went to bed feeling really odd and didn't want to sleep. When my husband came in I was still awake but couldn't string a sentence together and felt that I would faint if I put my head on the pillow. All my stats were fine but when we rang 111 (NHS non emergency advice) they insisted, because of my history, to send a paramedic. He was lovely, went through everything and couldn't find anything until I went through what I had done and eaten. Basically, I hadn't taken in enough carbs to cope with all the exercise I am doing so I was exhausted. The fainting feeling was probably my body craving rest! A bowl of cereal seemed to help and I slept from 1am to 8am, ate porridge and then went back to bed and woke at noon!! Do ensure you pace yourself :o)

Very best wishes to everyone on the board and to those waiting in the wings. It feels like a lifetime away now, not just 9 weeks. May your surgery be straightforward and recovery smooth. Thinking of you all.

Went to see my surgeon this morning and he checked my heart... "You've got a good repair there" he said :) I told him that I don't intend to be on the op table again, and he said I won't be. Let's hope that's fact! I did discussed a few niggles... The discomfort at the top and bottom of my sternum isn't the sternum wires as I feared, it's where the dissolvable thread for the internal stitches has been knotted. It takes a little longer for the knots to dissolve. The protrusion I feel below the middle of my collarbone, above my incision is swollen tissue which will recover. I'm rather thin (unfortunately only in that area!) so why it's more pronounced. And my back pain is muscular, nothing skeletal. As I have a connective tissue disorder all the ligaments are taking a time to settle down following surgery. But, again, with time should improve. Feeling very much better following this meeting, and despite the cold, I got my husband to drop me off in the gorgeous Wimbledon Village to walk home. Took me an hour (few detours into shops) but kept a steady pace without stopping, first long walk on my own.... Rather pleased with myself, so much so I went out again! :) Conversation with OH doctor went well. I'm signed off for another month (3mths in total), and will return with staggered start and shorter days.

Hello! Went to see my cardiologist today. The 24hr monitor showed 3,200 ectopic beats which sounded a huge number until I worked out that's about 5%. I was 0.08% pre surgery. He's increased my Bisoprolol to reduce the pulse and therefore the ectopics and suggested I take it in the evening as it can make you lethargic. I'm not sure if this will fix it or just masks it. I'm quite concerned that this will lower my blood pressure as that's when I feel dreadful. I've got to take Rivaroxaban for a further 6 months in case I go back into AF. The wires may get better. There's some healing to go but if still painful then they can be removed (this will be last resort as I don't want more surgery incase it upsets the rhythm). Day to day they are ok, but it's like a sharp stab if I catch it. I still can't sleep flat and I'm getting rather fed up with my bed wedge. I tried last night and on my side the incision hurts and then on my back I got immense pain on my upper left back. I was assured that it's muscular... Maybe the need of a massage is closer than I thought!! Unfortunately pain meds have no effect. Love to hear if anyone else has this, and if they've found relief? I've got a conversation next week with the work doctor about returning to work. I have an hour commute both ways and it's a stressful 10hrs. I'm concerned that the AF will start again :( Want to have completed rehab before returning so I'm the fittest I can be. Any advice? I read the 6 month posts with great hope I'll be posting something upbeat and as if I can conquer the world!!!!

Hello, I'm 6 wks post mitral valve repair tomorrow (yippee!) Just wondering if others at this stage began to feel their incision more? It's feeling tight, bit red in places (top and bottom mostly) and on the rare occasion, I swear that I can feel the wires catch if my clothes rest on it or I move, makes me catch my breathe (I have no idea what wires/clips they used)... can anyone put my mind to rest that this is normal and hopefully disappears? I preferred it when it was numb!! I am still taking pain meds at night due to this with the hope of getting a decent night sleep (which it self appears to be the holy grail quest post OHS!)

Very excited to have my first cardiac rehab session tomorrow. It's 2 hours and I've been warned that I'll be expected to do "gentle exercise"... Apart from the treadmill for my exercise echo, I haven't been near a gym in years! Been doing much more walking over the last few days in readiness. Read so many great things about rehab that I was determined to do it. Thank you for enthusing me!

Hello! Has anyone received any (dietary or otherwise) advice about preventing calcification of their valve? My surgeon was surprised how calcified mine was when he did my MV repair (I'm 42) so now with a ring in place and a cleaned valve I want to do all I can to keep it from furring up as I'm now fearing stenosis following a prior post! Thankyou.

I'm back in sinus again at resting of 71bpm :) I'm taking it slowly and not stopping any medication. I stopped the thinners previously and went into AF, so only can assume that they played a vital role in keeping me stable... Thank you all for the continued prayers and well wishes, which are just as vital as the medication.

Very pleased to report that my ECG today confirmed that I'm back in normal sinus rhythm. My post surgical arial fibrillation has gone through heart rate management and I do not have to face TEE CardioVersion on Monday. So so relieved! It was the first time ever I've had an ECG without any guidance to the doctor written on it :) Now to concentrate on recovery!!!

3 and half weeks out... Changed from Lovenox injections to Rivaroxaban 20mg tablets three days ago to protect against clots as still in AF (I've never prayed so hard in all my life to come out of this). Since then I'm utterly exhausted, I walked a small amount yesterday and then came home for lunch, and when having a slice of cake I had this almighty hot headache above my left eye and my version blurred so I went to bed. Maybe it's just getting over the operation but I was doing really well a few days ago an not needed naps but I've been lethargic ever since I switched medication. It's got colder here, last night I slept in pjs, socks, dressing gown, ski hat (!) with a duvet and blanket as I was so cold. Needless to say, I was hot when I woke. BP is a nice 115/75 and pulse it's usual erratic 80-100. Think I need a big dose of fresh air! Still shock how exhausting going up a tiny slope is! Hope everyone else is having a better weekend than me !! V fed up of this AF :(

Visited surgeon today, sounds like all going in the right direction and healing well although my AF remains a constant companion. Discovered that during surgery he helped to minimise the chance of clotting within the heart (a cul-de-sac in atrium) which is a blessing. My beta blockers were not increased but my thinners injections have been changed to Rivaroxaban 20mg tablets so thankfully no more self-injections of Lovenox (I loath needles!) He will consider cardio-version if I haven't reverted to normal sinus rhythm within a fortnight. He doesn't want to leave it much later. I'm walking about better than I expected and managed a little slope today on the way to my elder daughter's school. It was her Nativity play this afternoon so very pleased to make it. Was rather shattered afterwards although I'm trying not to sleep too much during the day as I find I can't sleep at night. My parents have been here three weeks, going home on Saturday so I think I'll really notice it next week as my husband will be in work. Think it's time to take up those offers of visitors! Praying that this AF disappears on it's own accord. It's less scary than it was, worst time is at night when I can feel it more hence why I need a good night's sleep. Least now I won't be taking 40mins and bucket of tears to do an injection each night! Still very pleased I've had this surgery. Has anyone had cardio-version for post op AF? Was it successful? Also, has anyone tried acupuncture for AF?

Hello, was I naive thinking that I wouldn't need any long term medication post my MV repair? I still have AF and been re-hospitalised so I don't know if it's that, or that I have a ring and gore-tex strings as part of my repair but I'm getting the distinct impression I'm going to be on thinners for life which I have thought not the case as it was my own tissue being repaired. What is the situation for other valve repair patients?

Best wishes to all having surgery this week, and in recovery. Even though I've had a few testing moments over the last two weeks, this is the best thing I've done (apart from obviously give birth to my girls!). There's a relief when you're through - not only that op is over, but the great joy that you're fixed!