I'm sorry to say i,m in need of your help and support again.
As some of you are aware i had an angio in march and i got a great deal of comfort from peoples replies which helped me through the procedure .
A couple of days ago i had a call from my surgeon to talk about my mitral valve replacement op , which he is hoping to do in july or august ,we had a lengthy talk and he suggested i take a couple of weeks to process and research my options , which are a mechanical valve or a tissue one . As i am only 48 he recommends the metal one . the plus side is it lasts forever on the downside warfarin. tissue valve only lasts 7 to 10 yrs . Now my fear of been knocked out and having heart surgery are beyond fear , even petrified does not seem a strong enough way of expressing how scared i am . so to put myself through another op in 7 /10 years seems silly .but having to take my bloods every 2 to 3 weeks is scary ,the what ifs are endless. i would very much appreciate other peoples experience of heart valve surgery ?warfarin ? also they have found out when doing angio that i have sever pulmonary hypertension , now he has made it clear if i do not have this life saving surgery then my condition is going to end in heart failure and death. so obviously i have to have op , he said there is only a 2 or 3 % chance of death or major stroke, so 97 /98 %chance of success is great right? How do i get myself through this? as ever i need direct to the point advice and would love to hear peoples individual stories and tips .is it a bit much to ask? please help! Safe to say my head is mush . Do i just need to get a grip?
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buster2k10
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Hi, I went through exactly the same thing a couple of years ago age 56 and opted for a biological valve. From one month being fine 3 months later being told I needed heart valve replacement in the next 6 weeks or I would probably die. Operation or death, there is no choice.
I was petrified but there is a lot of good stuff on the web. I found out several people I knew had valve replacements and very useful to talk. One lady had a metal mitral valve and she had no problem with the warfarin, what put be off was the valve 'clicking', it used to bother her but now doesn't notice it. Warfarin can cause issues but there are alternative drugs
I understand below the age of about 60 (because one is getting less active) they would recommend a metal valve so hence your recommendation - they both work well , you will be alive with either.
Its perfectly normal to be afraid but the surgeons and their teams (you will probably only speak to the actual surgeon once or twice) have done thousands of operations. 3% death rate seems high, figures I have seen are typically 1% or less and bear in mind these are overall figures and include emergencies and elderly patients who have other complications if you are younger and fitter your risk goes down.
My valve decision was based on:
1) The surgical team - they have done this before and should know what they are talking about - they gave me a choice, either biological or metal - I then researched both valves (there are many types) and as many real life stories as possible.
2) I did not want to be bothered about constant blood tests and what foods I eat.
3) TAVI operations should be approved within the next 5 years, this may be a less serious but perfectly viable operation for me next time. (I knew someone in the states she has had 2 biological (aortic) valves 1st aged 18, 2nd aged 38 there was an issue with the second valve and then had a TAVI aged 44, in 2016 (this was the only alternative because a 3rd open heart surgery was deemed too risky than a TAVI).
4) Fewer drugs to take. This could have varied on the outcome of the operation but I now only have 3 drugs a beta blocker, aspirin and something to counter the side effect of the aspirin. (had to take 7 different drugs for about 6 weeks after the operation).
I went for the biological valve as I believed overall my quality of life would be better, even though it might, possibly be shorter also because I got the impression from my research that you might get some warning that a biological valve is failing but a metal valve could have/cause an immediate issue.
It was daunting as it happened so quickly but I tried to be as positive as possible and trying to get thoughts out of my head such as was this my fault, is it what I have been eating, have I been drinking too much milk! - everyone told be its one of those things you would have had it from birth - I still have those thoughts.
My operation was not straightforward. Towards the end I went into anaphylactic shock and had about 5 hours in surgery then sedated on a ventilator for 24 hours woke up totally loosing a day - to which my wife still jokes how confused I was.
Recovery was hard, they kept paying attention to my scar which I had no problems with but also kept asking be get up and walk around the ward, which I just could not do as I was so weak even with the the aid of a bottle of oxygen and two people trying to help me.
Hospital high points
Getting the tubes out on leaving the recovery ward after ICU
The joy of the 8th day going home!
The nurse who insisted the doctors came to see me when I was having trouble even they were really too busy.
Hospital low points
Being all bloated after the operation and feeling rotten and confused - even though I insisted I was not confused.
People who had their operations after me were going home before me.
I could not pick up fork! and eat virtually nothing for a week.
Slept downstairs for 6 weeks as I was told climbing stairs may be a problem, it wasn't for me but gave peace to everyone else as I was awake all night most nights.
Went back to work after 6 months with no real problems but I have to say did not really feel myself for over 2 years, this could be psychological? I still have concerns how much exercise should I do, should I eat this or that....
Rehab/exercise group was very useful but unfortunately local GP was useless. have since moved and new GP is brilliant and have annual checkup with consultant.
4 years on life & lifestyle is pretty much back as it was, (I've always watched what I eat) no cigarettes, minimal alcohol and nearly vegetation. The only thing I have to watch is cheese.
I wonder sometimes should have had a metal valve and won't have to face another operation but on balance I think I made the right decision.
Without rambling on too long - there is a lot of good information out there, BHF are a brilliant source. You may be able to see how successful your surgeon is and number of operations performed from the Royal College of Surgeons.
I am not the ideal person to advise you on handling your fears and hopefully others with more relevant experience will be along later or tomorrow. My father, his brother and their father all died prematurely of heart attacks. I was assured my numbers (BP and cholesterol) were fine but was not surprised when I developed angina at the start of 2017. Four arteries were between 70% and 85% blocked. This resulted on a quadruple in June 2018. I had a long face-to-face discussion with my surgeon where we discussed my diabetes (he assured me he would handle that), donor blood vessels (PAD - peripheral arterial disease - precluded harvesting from a leg), on/off pump options. He did remark that I seemed very calm and my response was that I was getting a second chance my father never had. A few more items and we shook hands.
When I was admitted (some lengthy delays and a cancellation) the sheer professionalism should calm most people although sedatives are available if you are climbing the walls. Things then move fast and before you know it you wake up in ICU - job done. Then begins your road to recovery.
As regards the valve I would suggest the mechanical one as the thought of further surgery down the line holds little appeal. Managing the Warfarin can be done by home monitoring once things are stabilised and subject to approval of your team. I am sure others will suggest a tissue valve and others mechanical. In the end it is your decision. Good luck! Any questions just ask...
Sorry you have to face open heart surgery, it’s a very scary place you have found yourself in, but I am here to tell you it will ok. I had my AVR and a bypass done nearly 4 years ago, and the thoughts before are far worse than the actual op. You don’t have a lot of pain they certainly make sure you are comfortable, I spent 2 days in icu the extra day as there wasn’t a bed in hd 2 days there and back onto the ward. What I would say make sure you do the exercises you are given I called them the huffing and puffing exercises. Helps get your lungs working well again, and walking round the corridors!
I was in for 7 days remember when you get home no arms above your head and don’t lift anything heavier than half a kettle of water, for the first 6-8 weeks. The last thing I did before I was discharged was climb the stairs with the physio watching.
When the time is right do the cardio rehab, it will help build your stamina, it also helps with your mental health, being with others who have been through the same experiences is a huge bonus. I found it invaluable, those little aches and pains you have you find they have them too, so you think ok that’s normal.
I have a tissue valve, I was 68, when I had it done had a conversation with my surgeon and on his advice went with that.
I am grateful every day for the medical team that gave me my life back, I realise you are very worried but it really will be ok, the last words my surgeon said before my op was “shall we do this?” There was only one answer,” let’s go for it.”
If you have any questions please ask there are lots here on the forum who have been where you are, and they will be along to help you. You will soon be travelling on the mended heart road we are all travelling on.
At your age if you do not want to go through the op later in life perhaps another twice go for the metal valve I had mine done46 years ago at the age of 26.warfarin is the only antiquagulent that is suitable and if your inr is stable you can go 8 weeks between tests. I have my own machine and self test it cost 300 pounds you pay no vat and get the strips on prescription. When you think about it that is only the price of a washing machine. The wife is still using the scrubbing board
Hi, just to add if you know your surgeons name you can look them up on scts.org/ and somewhere on the NHS site to find out a little bit more about them (it may help). Remember a huge number of people have this surgery and the care I had (and others) was astounding. It may help to look at the positive of your situation, a problem has been found with a known solution, you can have intervention and survive this, without it your survivial would be questionable! It is traumatic physically and mentaly but you have lots of support in hospital in the community and of course on here! I found it better to just accept I had "no option" and take one day at a time...
Hello buster2k10. You’re in our thoughts. Look how many of us here have come through it, hope that gives you hope.
No valve experience from me, I’m sorry, but hope it helps if I tell you my other experiences, incl on emotional & practical stuff. It’s long, hope ok!
I had open heart surgery to close a hole in my heart, that I’d had since birth but diagnosed at 51. I officially had some choice, it maybe wouldn’t kill me too soon, but tbh, I think that made it harder, as it wasn’t black-and-white.
I too was terrified, but I got through it - the way our brains work, with subconscious risk avoidance, we humans have a way of finding more strength than we thought we had, when we’ve no choice.
The mental journey is huge but you can do it. Counselling really helped me. I had to slowly learn to accept reality, so I didn’t waste my limited energy wishing things away or panicking. I learned to drop worry on things I couldn’t control (what if the surgeon has a bad day? Well so be it, nothing I can do to stop that, & worrying makes my heart worse, so replace it with something I can influence). In a strange way, acceptance & letting go can be a great relief, the hardest, but best, thing I’m (still) learning about health issues.
I could sleep better once I tried to give a brief time to deliberately letting the fear be “felt”, as after doing that, it would at gradually melt away & lose its grip. Also, whilst OHS is in no way routine for us, it is routine for the medics, they’re well practised & skilled.
Recovery was a long road, tbh. Keep hopeful, it does get better, you may feel & experience lots of things but they’ll likely turn out to be normal. Recovery tips: sleep whenever you can, lots of naps, get lots of pillows to doze upright (or use a recliner). Move gently too, it helps clear the lungs & slowly readjusts the heart. But if you feel tired for 1-2 days after doing something, then you did too much, so back off. If it works for you, choose a goal or event for later on, that you can spend time planning, hoping & focusing on the future, giving yourself positive vibes. I planned a charity trek somewhere amazing, with plenty time to recuperate & get fit again beforehand. You may not be able to do as much at first, creating small things to hope for, experiencing success and building up is often useful.
It wasn’t expected, but I needed to be on warfarin after the surgery. Initially unclear if short or long term. It wasn’t as bad as I thought. Testing was initially hard due to car journey. Then I was able to tweak things, to a surgery I could walk to, and it was only a pin prick.
Make sure you get experienced advice on diet. It’s not true that you have to avoid certain foods. It’s more that it’s important for certain foods to be eaten (or not) consistently in your diet. I learned I was allowed to eat spinach, which I love, so long as I didn’t binge, & it was regular. So I ensured I had leafy stuff every day or two, and my warfarin dose just got slowly adjusted around it. I could go on holiday, so long as I planned for some dietary consistency. I got frequent bruises but didn’t get any major bleeding. Bought a day-by-day pill box to help me keep track.
It’s so normal for your head to be mush, it’d be abnormal if you felt fine about it! But you will get through it, and look back on it with pride, serenity & hope, I’m sure.
Happy to help. I’m a psychologist & professional coach, and to ‘repay’ those who helped me, I do some free coaching & mentoring for others with health worries. I’d be delighted to help you free of charge if useful. I’m not touting for business, this is unpaid, I just want to help if useful. Feel free to message me if you’d like to ask Q’s or see if phone or web talk/listen sessions could be helpful.
Wishing you the very best. Courage is not being unafraid, it is doing what we are afraid of. You’ll get there, brave soldier!
your kindness is a great comfort , your advice on the emotional side of things is very much appreciated . I myself have a counselling background i have experience counselling and mentoring people and actually thought if i get through this i would like to help people who have suffered anxiety around health, 10 years ago when i first fell ill with cancer and then a stroke and now my heart ,i think somewhere along the journey i started to pull away from the positive calm up beat person i always was. AS my surgeon said the last 10 years of ill health have been a challenge and my knew challenge is this surgery,which put me in a place that was very unfamiliar to me, never have i ever felt anxiety and fear or dread the way i feel about this surgery .The emotional pain i feel is something i never thought i was capable of . i have always been a positive caring person who loves helping people ,even now i worry about my family if something was to happen to me .i am putting my fears on them and worry that i am pulling them down and worrying them too much. I do feel i am a crap mother and wife and do feel a burden . I am however extremely lucky to have a very loving and understanding husband and children. Anxiety and panic is something that i am so looking forward to getting rid off after this op, I do need to focus on the positives and" feel the fear and do it anyway" Thank you again Teal and i might actually take you up on the offer of free therapy ...lol.. seriously though i feel blessed to know i have people i can talk to who have experienced open heart surgery , best wishes to you and all , X
PS
me and my husband are gonna plan a trip for next year a super relaxing break away for us both to heal and hopefully look back on 2020 in a positive way .I read somewhere on here someone say they have never felt so well ,so after 10 years of ill health maybe i may feel the best i have felt in years? do you think heart surgery could make me feel 20 yrs younger ? i wouldn't that be great?
I knew it! i knew that u great people who have been through pretty much what i will be going through, would help .Thank you all all your advice has been read and re read (will probably be read again and again) I find great comfort in what you are all advising/saying and your invaluable experience ....take care and stay safe , im sure i will be back for more comfort from you lovely people. X
I have no experience of heart surgery but I have had major surgery. I would let the staff know how frightened you are. In my experience they are more than willing to discuss things with you several times. I would also ask for a sedative the night before surgery. You'll soon get used to having blood taken. 97/98% success rate is fantastic. Good luck.
sorry I am a bit late to the party, but just found this thread.
Myself and at least one other contributor 'robinangel' I think, have made diaries about our time both in and out of the hospital. Mine went on for a few months and you can find it in my profile. I was glad of reading previous posters information as it kept me calm. There are tough times, no one is going to lie about it, but there are good times too. The hospital staff couldn't have been more helpful and supporting. The pain was nowhere near as bad as I thought it would be. My time in hospital, although it didn't fly by, but didn't seem too long (7 days for me). I remember nothing about ICU (the bit I was dreading the most). The operation day, probably the most stressful, was calm, the staff lovely and they didn't delay, I came in filled my forms out and was on my way to surgery quickly, no time to dwell on it.
With regards to the valve choice, I went for a mechanical one, I was 49 similar to you. It has only been 8 months for me so far, 29th Oct 2019, but I am pretty used to it already and the drugs and testing are no big deal. I too will be investing in a home testing kit soon like a previous poster, more for peace of mind than anything else.
I was at the BRI. I went back to visit a couple of months after, while having my post op discharge meeting. It was the best thing I did. The staff were thrilled to see me, commenting on how well I looked, and I am not ashamed to say it, we all shed a tear....oh joy.
Good luck and don't be afraid to ask questions here...we look forward to helping our fellows....
thanks for your reply road 2 ruin ,i appreciate u taking the time to reply , i have this page open on my laptop all the time ,so when my anxiety is at its worst i will read and re read every ones replies, it make a massive difference to my mental health to hear other ppls experiences .
Really funny how you replied today as yesterday my husband and i had read your diary.
How are you doing now? I must admit because of my medical history and lack of fitness i worry that im not gonna be ok , i read a post on here about someone saying they had never felt better i am hoping this is the case for me , i am expecting a call any day now ,due to covid they cant give me a date so they said they would call with a weeks notice ,they have also sent me the wash and ointment.
I forgot to click reply so its now sat lol
quick question how fit and active were u all b4 ur op compared to after? i manage 1500 steps a day some days a little more some a little less, will i be able to dance jump run eventually ? not been able to these for 10yrs due to other health problems.
I, like you, use this site to help my mental health as well as others. I found posting my thoughts and reading other peoples experiences really help.
With regards to my abilities before my op, I was not too bad. I cycled a few times a week, but not very hard. I only noticed I was unwell because of this, otherwise I might not have known for a while after. I used to get chest pains and couldn't catch my breath my cycling hard.
Now though, nearly 8 months on, I am a lot better, not 100% though. I still suffer from chest pain where my scar is, but not too bad, and my mental health is still affected, but getting better. I found the first weeks out of hospital the hardest, but by Christmas I was a lot better, that was only 2 months.
Talking about things and typing on here really help. There is always someone who can offer advice or support, but it is just nice to put down your thoughts.
Fear of the unknown is always the worst and that is tricky to help people with. Just be rest assured that the surgeons, doctors and nurses have done this a lot. They know all the problems, how to deal with them, if there are any, and how to make you feel at ease. Once you are in hospital you will feel really looked after. I have a friend who is a cardiac nurse at Papworth and she treats her patients like family....
Please feel free to message any time, only to happy to help.
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Scary Open Heart Surgery with difficult decisions
bleeding internally with warfarin and having a mechanical heart valve 
Post Op meeting with Surgeon 
Why is it called heart failure?
Aortic Valve Replacement- meet the surgeon 👩⚕️ 
