M's Heart Valve Journal

My experience before, during and after Aortic Valve replalvement.

I had my bicuspid aortic valve replaced on 1 august 2014. One year on I thought I would share the experiences of my road to recovery. I had a final meeting with my cardiologist last week and one of the things he said was; we tell you before your surgery that you will be back to normal around three months post surgery but, in reality, it can be one to two years. I found this very reassuring as I went into surgery believing I should be back to my old fit self in a relatively short time. I had read post surgery blogs of people taking part in marathons or back to work in a matter of weeks !

If you are used to being fit and had no symptoms prior to surgery, the experience can be a bit of a shock and you could think, why on earth did I go through with it. Well the simple fact is that those who need this surgery, are going to die without it.

Approaching surgery, I was absolutely scared stiff. I would wake in the night thinking why me. I sit on the fence when it comes to religion but there were times when I prayed. I would wake up frightened at my situation, all those years of hard work, raising the family, now life is good we are retired and wham this happens. I felt really sorry for myself. I read everything I could find and thankfully found Adam Pick web site and joined his web blog devouring everyones steps before, during and post surgery. I cant emphasise the importance of the support I found from his web site. Complete strangers from around the world were there to reach out. I cant express how important that was to me. Someone on the blog mentioned meditation helped with the stress and I pursued this downloading the Cleveland Hospital relaxation audio. That helped me during those sleepless nights when I was in anxiety overload.

I had my surgery under the NHS system in UK. My obvious symptoms began a year a year before when I had a permanent cough, got very breathless on climbing stairs or hills and the my GP hear a very noisy murmur. The process was slow but thorough under the NHS and I think I was in denial as to the seriousness of my position. I had always been fit, even going to the gym and lifting weights into my sixties.

I felt philosophical about the idea of having my heart stopped and a machine taking over as I figured I wouldn't know anything about it if it didn't work. However I was nervous of having the anaesthetic for the operation and post surgery drugs as I know there is evidence that the older you are, these can affect your likelihood of dementia. Well from the pre med I had to waking up in the high dependency wing, I recall absolutely nothing. I was determined to get out of hospital soon as possible and my target was five days. I remember asking the nurse for paracetamol and was asked why I wasn't using the morphine pump. I naively thought they wouldn't know ! Let me say at this stage that the surgery isn't painful, its uncomfortable and the wound is sore and prickly. One thing I will say is whatever the anaesthetic was or perhaps it was the morphine, I had the most incredible visions every time I closed my eyes. One of these were brightly coloured penguins dancing in row. This an blurry eyesight lasted for a few weeks post surgery. The advice is not to have an eye test until at least six months after surgery. I waited nearly a year and my eyes had deteriorated slightly.

I left hospital on the fifth day clutching my pillow to my chest as every bump in the road hurt. But I was in that post surgery elation that it was all over and I was alive. It was lovely to be in my own home but sleep for the first few weeks were in short blocks. Firstly because for first couple of weeks I had to sleep in a recliner chair in the sitting room then when I did move into my own bed, had to sleep propped up. This is to do with the wound healing. It itches like mad and also prickles inside. My first shower at home was complete bliss even though scary. Gradually day by day I got stronger. However all the books, puzzles and sewing I was going to do during my recovery period never happened. My concentration level was very low and also I would have these instant nanny naps. My eyesight was blurry although gradually improving and I just exhausted all the time. Around this time I got depressed, I wasn't feeling how I thought I would feel and the ten minute walk I was supposed to be doing every day either didn't happen and was such an effort. Two months after surgery, I got a place on the NHS rehab program. Oh how I wish I had had that contact earlier. I was with others going through the same thing, experiencing the same emotions and twinges. I learned how to exercise my heart by walking at a pace when you can still talk or sing but if you feel you are gasping you are going too fast. I was given a workout program I can do in my own home using no equipment but a chair and a step (bottom rung of stairs). Sounded pretty tame after the gym workouts I used to do however this 'simple' workout really does make you sweat.

So gradually I was feeling better but was experiencing increasing leg cramps and then pains in my joints to the extent I had to stop my walks and didn't want to do any exercise because I knew it would cause me pain. I hit a bit of a wall and realised perhaps it was one of the medications I was taking. My symptoms were getting worse and I was starting to get tingling in my thumb and fingers. On checking the information leaflet that came with each of my medications I discovered one particular medication highlighted my symptoms as a side effect. Both a doctor and the cardiologist said I shouldn't still be taking a beta blocker as it was something given to me for a couple of months post surgery and I personally had no reason to be on it long term. I am now into the second week without this particularly medicine and feeling better already. Still have some pain in the joints but the tingling is wearing off and mentally I feel so much better. My cardiologist says that should I get high blood pressure in the future, I wouldn't be prescribed those types of beta blocker as there are alternatives. I am passing on this experience to the blog because I think we should ask why we are taking certain drugs and of course if you do experience symptoms, check the leaflet and tell your doctor ! Seems quite logical but after going through such traumatic surgery I just did as I was told without question.

Finally, just want to say I am so grateful for the skill and knowledge of the surgeons and doctors who have saved my life. I am excited about the future; this year we travelled to Australia to visit family and stopped in Hong Kong for a few days. I thought to myself, don't worry or be anxious about travelling or taking up new hobbies or responsibilities because all of this is a bonus. Write, paint, travel, cycle – do it now and remember to stop and smell the roses.

Havent contributed to the blog for a while. But I do pass on this web site all the time as it was the support I received which I am sure saved my sanity before surgery. I am writing today because we have a friend (male) who is a diabetic and has high blood pressure and he has been told he will need aortic valve replacement. Wondered if there is anyone on the blog who has had this surgery in Wales which is where he lived Unfortunately the NHS in Wales has had bad press lately so it dosnt give a lot of confience. And wondered if there were any blokey blokes (thinking of Popeye here) who approached the surgery and are now well on way to recovery. As for me, well off on a long haul trip in couple of weeks and of course worrying about how i will get on as i still do get tired if overdo things. Also bought a self monitoring warfarin kit so I can check my INR as expecting change of diet. And finally, just major major thank you to all of you on this blog. The support and prayers given by complete strangers is almost overwhelming. Thank you all.

Wanted to say a huge thank you and hugs to the suppprt I got from this blog. I live in the UK and post surgery there has been a lot of support and information available to me however the year leading up to my surgery I felt very alone and frightened and apart from my doctor and cardiologist didnt have the emotional support I desperately needed. Until I found this web site and this blog. Have had problems posting since the updates but think it works now ! I am now eight weeks post surgery and feel great. I am on warfarin for life but its a small price to pay for getting my life back on track again. Attended my first NHS rehab session yesterday and was thrilled to be back in a gym although sad I had to leave the weights and rowing machine for the future. But managed to work up a sweat and it was great to find out what I actually can do. My post surgery visit to my surgeon was good apart from a ticking off and warning that I should still be careful of upsetting my sternum. He could feel a click which meant it is still healing and patience now to let it fully heal will prevent problems later. So took his advice on board. I am so grateful that this surgery is available and fully aware that twenty years ago my life would have been cut short. One serious piece of advice I would like to pass on is, this major surgery requires a positive mental attitude and as long as you have that, any bumps along the way can be overcome. Good luck to all those approaching surgery and like others before me, trust me, the worse part is the weeks before surgery. once you are on the way to recovery, its a piece of cake. love to my global heart friends from a beautiful day in Cornwall UK

I think this is where i put an updated journal but not sure so folks anything could happen now six weeks plus post surgery and feeling back to normal. went to the hairdressers this week - oh how good did that make me feel and able to walk into town and shop. however definately reminded occasionally that carrying anything heavy is a no go area and i do still get tired which hits you all of a sudden. had to have antibiotics for an infection from a soluble suture which wouldnt go away but now over that. only discomfort from itchy prickly scar. dont see the surgeon for post op visit until another couple of weeks and until then wont get the ok to start the rehab. now wondering what exercise other than walking can i do. nothing too strenuous but thinking of squats or steps. i like the list of upcoming surgeries now appearing on the site because i take a moment to think of anyone as the day of their surgery comes up. so although i may not make a comment, please know i and i am sure many others are thinking of you. One thing i think most people would agree is the most distressful time for this whole situationis the pre surgery time. once you are into post surgery, you can look forward and take charge of your life again. arent we lucky that their are the skilled surgeons and know how to give us long healthy life. love to all

Still trying to get hang of this site. Firstly wanted to respond to messsage bout migraine and aura headaches post surgery. i had ocular migraines every day post surgery and also bouts of double and blurred vision generally in the afternoons when i was tired. good news is 4 weeks post surgery they have diminished considerably. i read somewhere that all that added oxygen to your brain when your heart has been runnning on half tank, results in headaches until it sorts itself out (definately non medical jargon there). Have to agree we desperately want to know how Popeye is getting on. Followed his fears and worries and now want to know he is doing ok. wherefor art thou Popeye ? have tried to comment to others but must be doing something wrong. its wonerful to follow those through post surgery and recovery after chatting all our fears and stressors before surgery. look where we are now guys a long and healthy life ahead of us. hi to Terrie, Ginger, Mia Mary .

i seem to have ht the fourth week blues a few days early. lucky to have a doctor two doors up from where i live and took his advice to up the exercise, get out and about. seems to have worked as finally got my 'sea' fix with trip to porthleven and a cornish tea. that is scones with strawberry jam and clotted cream with pot of tea. the sea was bracing and we rugged up so we could sit outside and watch the waves. better than any pills. also met with girlfriends one morning for coffee and it was sooooo good to chat and laugh about normal things. yes there is a life out there and cant wait to get back into the stream of things. already planning girlie shopping trip to london before christmas. life is good and feel so privileged that there are those surgeons out there with the skills and talent to give me an extended life. to all those approaching surgery, the waiting is the worse bit.

I suppose i thought once my surgery for replacement aortic valve and aorta repair, i would be back to how i had been a couple of years ago. well i aint ! its very very slow progress. i no longer have restricted breathing when i get to the top of the stairs in the cottage however i dont run up them. the theory of walking every day with improvements - gosh noted people on this blog walking kilometers - I am still doing a slow pace around the block. it is only five minutes walk into town however havent ventured into town because its a very steep uphill walk back. where i live its all hills nothing on the flat. the community nurse visited yesterday and said i was doing very well so am not sure when all this athletic prowess is supposed to take place because i think i will be a while yet. dont get as tired and managing on one nanny nap a day. i dont prepare for it i just find about mid afternoon i have dropped off to sleep. sleeping bouts of 3/4 hour blocks at night but thats because i am experiencing some prickly nerve recovery stuff going on in my chest. i also get headaches and think thats due to the medicatons. community nurse didnt seem concerned. am trying to buy couple of night bras which dont aggravate my surgery scar but proving quite difficult as i cant do the usual trip around shopping centre. my husband ron is an absolute brick, cooking cleaning, washing and ironing none of which would be his favourite tasks but he never complains. i have been disappointed but everyone i express this too keep reminding me that i have undergone major surgery let alone major heart surgery and that takes recovering time. yes need to stop ad walk before i can run. have a future now and there will be plenty of time to run in a few months time. thinking of Terrie as she does the approach to her surgery and as i think that was the most stressful time am supporting her in thought and wishes across the pond. love and many thanks to all on this blog without it this whole process would have been much more difficult. have been letting as many UK health professionals know that i believe there is a lack of support over here pre surgery and that adam pick's blog saves our sanity at times like this.

Its one week since my surgery for new aortic valve and aneurysm repair. even writing that statement i realise i have been too optimistic in how i thought i would feel. at the moment everything feels such an effort. even making myself to online to reply to emails or look at this blog. i wanted to record a couple of odd post op symptoms to help those of you who still have to have your surgery. firstly after surgery whenever i closed my eyes i got a kaleidoscope appear with bright colours pinks, purples oranges and reds in geographic patterns dancing around. sometimes cartoon characters like dancing penguins - no i am not crazy i really did see this stuff. it got where i didnt want to close my eyes but was desperately tired. they have stopped but now i am at home, my vision is very blurred as thought i forgot to put my glasses on. also i certainly have pump head things fly out of my memory i forget which room i am in or why i went there ! very hard for someone who is a bit of a control freak. i recovered very quickly post surgery however another patient in the same ward was quite dillusional even when i left and there was some concern it would be long term for her. i am going to try and wash my hair today which should be interesting because it goes into a fluffy mass unless i spend ages - perhaps i should take a photo to give everyone a giggle. anyway love you all heart brothers and sisters and thinking of you.

Still sore but getting better every day. Could not have gone through the stressful waiting without my heart bros n sisters. When my inr levels reach 3 I can go home. One thing noticed my eyesight blurry understand this is normal. Lost 6 kilos already all fluid I think.love you all chin up. Writing very slow on my tablet so won't write again till I get home.

Well wasnt going to write a journal until day before going to hospital however there are a few of us having surgery this week and i wanted to write to say this blog really is something specia and I am sure many others are finding support in the blog even if they dont write their own journals. The real experiences before during and after surgery is so important and the friends i have made in this blog very special. Love to all the heart brothers and sisters and especially to those undergoing surgery this week.

Been told I am first on the list for 31 July but havent received letter confirming yet. one thing i noticed is it appears in the US time in hospital is shorter than the NHS. I will go into hospital the day before surgery the spend two days in the ICU followed by a day in the high dependancy ward then three to four days in the general thoracic ward assuming everything is ok. Am no longer scared about the procedure as feel i already had a dress rehearsal without the actual surgery LOL. love to everyone heading for their surgery and what a wonderful site this is where we can share our innermost fears and the relief of coming out the other end with a rebooted heart. love to al the heart brothers and sisters.

Actually got to being on trolley waiting for pre med when told operation cancelled because the cardiac ICU place had been taken by urgent case. Am now back home waiting for another date. I made a joke about perhaps this is the NHS way of reducing numbers ! but the stress is just too much. The system is such that if some has a heart attack and subsequent tests shows if they dont have urgent surgery they will die, they take precedence so unfortunately this means those waiting for elective surgery get bumped each time. I know and if it were me those people rightly have precedence however the stress is just unbelievable now. My surgeon is one of the best in the UK and even if we paid i couldnt get my surgery done by that surgeon so i just have to be patient. On a positive note, actually lost a kilo in weight over the 48 hours including fasting.

Am now spending night in lodge next to the hospital. Met surgeon today bloods done and consent forms signed. no food now last hot chocolate drunk and biscuit consumed. Mary's adventure has begun. feel so much support from family neighbours friends and all the heart brothers and sisters. out of comms for few days. Love and peace m

Thank you to all those wonderful people who posted support to my guestbook. I was really upset and stressed yesterday when i was told my surgery was being postponed by a day however in local media discovered there has been an outbreak of a stomach virus at the hospital and they have stopped all admissions until the end of the week unless its urgent. Now I am thinking perhaps I would prefer my surgery to be next week when the virus is no more. How much stress can a body take. Going to the gardening centre this morning which is always my favourite thing to do when feeling anxious. Will keep you posted but at this stage being admitted to hospital on the 17th with surgery the following day 18th.

Thought i would take a walk and see how many times i had to stop as a guage for when i get my new valve. got home to fine letter advising due to emergency, my surgery had been postponed and not to go to hospital until the 17th. I know its only one day but when you set yourself up its psychologically undermining. I took Rebeccas advice and bought myself dry shampoo spray and pair of flip flops. So my bag is packed and last minute items bought, friends,family and neighbours visited/phoned and everyone waiting. I guess postponement was unforseen but am aware someone else needed that surgery more than I did.

Hi everyone - firstly i apologise for the typos in my writing just put it down to enthusiasm and fat fingers. I wanted to pass on to everyone couple of tips which my old schoolfriend gave me. We met up for girly weekend in London around eighteen months ago and she was not well. in fact she spent most of the time in the hotel room feeling dizzy and in pain. well subsequently a week after she went home she collapsed and ended up having open heart surgery and a new valve. Very traumatic time for her and her family. But being the lovely friend she is, she is supporting me with some very funny emails about what to expect in hospital. So i dont know if this would apply to hospitals outside of the UK. Firstly she said its very noisy in the ward with bleeps and buzzers going on all night so she suggested eye mask and headphones (of course thats once you have moved out of ICU). also small pocket radio because when you are wakened first thing in morning to be jabbed and prodded, there is then a very long wait until the first cup of tea so listening to music or news passes the time. Then for the ladies, especially, buy several soft sports bras to keep our body away from the incision scar. Also wear pyjamas with buttons in the jacket so all those tubes and lines can be more discreet rather than lifting up your nightclothes bearing all ! final tip she told me was, as long as you feel you are able, get walking as soon as possible as here in the UK they wont let you leave hospital until you can walk a flight of stairs. And just to let you know, yes it has taken my friend around twelve months to feel really fit. She recently took her first flight to Germany and even climbed a small mountain without getting breathless. For me, I cant wait to climb a mountain any size will do big or small. love to all the heart brothers and sisters out there.

I am finding social get togethers exhausting. Had a very late night yesterday and paying for it today despite sleeping soundly. My weight continues to go up so have decided it must be fluid. I am now 4 kg more than my best weight despite cutting my calorie intake however cant exercise the way i used to and wondering if the weight increase could also be due to my sluggish heart. After all we do cardio exercise to get our pulse rate up. I am really looking forward to being able to swim and do cardio exercise again. Trust Terrie (ps terrie have at last managed to upload photo of the cottage) and Ginger are counting the days til their reboot too and wish everyone on the blog health and positive thoughts. love m

Our cottage in Cornwall.

12 days and counting - I seem to be having more migraine episodes and I am not sure whether this is as a result of changes with my heart or caused by stress pre surgery. Does anyone experience or has experienced migraines relating to their BAV ? I have always had migraine but in later years i just had the aura without a headache but now seems to have gone back to aura and headache. I am meditating every and feel less fearful than i was previously so its definately helping.

Now organised new smart phone so i can download meditation app and be online in hospital. now to buy small pocket radio so i can put headphones in and blot out all those hospital noises in the early hours. Went to first meditation class today and must say i think there is definitately a benefit to be had in meditating prior to surgery. i have been very stressed and i find meditation helps me to turn off the fear button - at least for a short while. hairdresser organised for week before surgery, teeth check ok. love hearing those post surgery stories it certainly heps especially when we have followed other heart brothers and sisters through pre and then post surgery. love going out across this blog and positive thoughts for us and the medical teams that give us this opportunity to continue to an old age.

bad day today. for no reason couldnt stop crying. poor me ! i know i know so many people worse off than me but indulging in a serious poor me day. will be fine tomorrow i know. i would put it all down to hormones however am too old for that! i am just plain scared, i worked so hard for my retirement and there are so many places to go, people to see and things to do and i have hardly started. my one piece of advice for everyone is do it now whatever it is you have put on the back burner life is far too short. tomorrow new day and will no doubt bounce back but please excuse my day of indulgence of feeling sorry for myself. dont you just love this blog. noone knows me out there in internet land and i can feel sorry for myself. love to all the heart brothers and sisters.

At last managed to upload photos. Had to tweak them to make them smaller so i could upload. We love out little cottage it has two foot thick walls and is over 200 years old. The apple tree in the garden has a conservation order placed on it because of its age. This means it cant be cut down or damaged in any way without planning permission. The has a special feel and it makes it a very safe place to be. We had intended spending our retirement split between two continents but my health means no long haul for a while but i dont mind because there couldnt be a nicer place to be. Feel optimistic today but wish i could lose just a couple of kilos. I am going to confess i had an ice cream binge yesterday then felt terrible. Positive thing about being in hospital is i wont be able to do that ! love to all on this site and of course my heart buddies Ginger and Terrie

Our cottage garden

I am now booked into dentist for pre op check. Have been researching valve options and being the sad person i am ! have set up spreadsheet to log pros and cons. still going with mechanical at moment as one opinion says scarring means not able to use the TAVI option later when bovine valve needs replacing. I dont understand the reference to lifestyle when choosing bovine or mechanical. I assume this refers to the blood thinners but not sure. Also if i had a bovine valve and eventually returned to my gym activities, would this mean i will wear out the valve sooner than if i had a sedentary lifestyle. Very hard to find straight facts regards the lifestyle reference. Have also madea commitment to my meditation and set myself up little seat in the garden so no excuses. I was impressed with the Cleveland hospital meditation downloads however as i dont have an ipod or iphone was unable to load them anywhere. Any suggestions as to how i could do this much appreciated. Love and positive thoughts going out across to all the heart brothers and sisters and thinking specially of Mary in Texas and hoping all went well. m

Have got my date for my operation at last. 17 July 2014. sent email to my children in oz and brother in uk. i have been dismissal about my situation but thought it time to reveal all. seems to be a deafening silence since apart from one daughter who has had a leaky valve fixed. Does this mean they think i am kidding ! or is it a case of mum dosnt get sick. well now trying to lose a couple of kilos before the op but this is very hard as my exercising is curtailed (take it easy have swollen aorta) and dont eat a lot anyway - when i counted up calories, i am eating less than recommended amount to lose weight. why does your stomach swell ? any tips for getting fit without overdoing it. This site is an absolute godsend as nowhere else can i vent my feelings anonymous.ly. have decided i want a mechanical valve after watching one of the videos linked to the site. i never want to go through this again and intend to live an energetic and very long live. love to all the heart brothers and sisters m

I have so much warmth and support from the messages in my guestbook. I was doing the poor me thing and dwelling on worse case scenario (comes with checking online with doctor google!)but this morning decided i will not succomb to this bicuspid thing but will treat the whole thing as an invaluable experience. Thankfully this site exists so i can ramble on and then at some future time be able to look back and say yeh well it wasnt that bad. So what happend this morning. Well in bed and stretched when got dreadful cramp in my leg. I jumped out of bed and went to stand up when my left leg gave way and I ended up on the floor. I sat there looking up at the ceiling and thought 'ok is this it'. After couple of minutes husband called out from his deep sleep - are you ok. That was the epiphany - have i got so paranoid that now a cramp in the leg becomes 'it'. Off to walk to Malpas today as its lovely and sunny and Cornwall at its best. Postive and happy thoughts going out to everyone. m

Yesterday l went to the hospital where my surgery will take place. Had the usual ECG then chat with member of surgical team. tried to show i was pretty up to date with information and research but was floored when he mentioned my aorta was swollen because of the faulty valve. so now could look like more invasive surgery than first thought. apparently they wont know until they actually go in and see the valve in situ. this blog is invaluable because i can voice my feelings without holding back. my children and husband are used to me being fit and i dont feel i can express to them that this is really a life and death situation. i am sure everyone will say i told you so when it all goes well but i am terrified. i feel totally unfit and vulnerable at the moment then i tell myself there are people out there far more sicker than i but i have become rather self indulgent in my fear. i am not ready to die i have only just finished working, taking care of elderly parents and sorting out my future and then this. will write again hopefully once this is all over when i can reassure others - yes piece of cake, you will be fine.