I underwent Open Heart surgery in August 2021 at the Brompton Hospital in west London, my surgeon was Mario Petrou part of the cardiac department headed by Professor Pepper.
I was due for a P.E.A.R.S procedure for my ascending aorta but the surgical plan was changed when I was in surgery. Mr Petrou decided to remove my aorta and replace it with a synthetic implant. I am in my 12thweek of recovery. Physically I am recovering well and I am looking forward to reducing my medication to pre surgery levels.
I am having trouble dealing wiht the mental health side of recovery, I panic at the thought of waht has been done to me and am deeply anxious about the possibiity of a degraded surgical seam between the synthetic and organic parts of my ascending aorta. I believe my surgery will fail catastrophically after a few years. It is becoming a type of obsesion for me mentally and I would like to speak to others who have been through major surgery and are wrestling with anxiety.
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I had 3 heart attacks and a triple Bypass about 13 weeks ago
The thoughts of has it worked will it last me , every twinge or ache , slightly getting out of puff , am I recovering ok the list goes on and the thoughts never shut up or leave me alone it is very bad
I have always suffered with anxiety but having this go wrong has took it to another level
I cannot give advice on how to control it but I can tell you that you are not alone in how you are feeling x
It's absolutely mind blowing what they can do nowadays with the heart!
I had a 'Davids Procedure' last year - similar to yours, except the process involved keeping the valve and using that as the starting point to remodule, replace the ascending aorta. Also had a CABG with 3 grafts.
I fully understand your fears that a seam may become undone - but I've given up worrying about it, because in truth, if it happens - the outcome will happen so quickly that I will never be aware of it.
I do have to say that I have survived Lymphoma some 10+ years ago, and a lot of my mental worrying about such issues happened then. I think it tends to come under the terms of 're-appraising your life and what you consider most important'. So for me, when I was advised about heart failure and the solution to remedy the situation - I just took it as read.
That said, I did have a good cry the night before the op, I think because I suddenly realised that within 24 hours my life might've ended and the pain it would cause family.
Do not think about your operation as if it might fail - think about your operation in terms of without it you would almost certainly be dead! On that basis, you can then set about making the absolute most of the life you have.
I'm not saying it will be all a bed of roses, because the sheer scale and nature of OHS causes the brain to do a double take. You will have bad days - but you will have OK and good days, just as you do in normal life. The difference now is: you have a community of people to speak to and ask for help, or give a shoulder to cry on.
Also, do not be afraid to speak to your GP, your surgeon or the ITU staff at Brompton. This week, I have another telephone call from a member of the ITU at Basildon (where I had my op) to see how I am getting on. They have offered counselling and even offered to arrange it with some one who understands where you're coming from.
I'm glad all is well thus far, and hope things continue to improve - just remember, you're not alone, your feelings and thoughts are natural, and there are people willing and able to help 👍
I’m sorry to hear your procedure went so horribly wrong. Mr Birdi was an assisting/ partnering surgeon to Mr Singh who was my main surgeon.
Mine was an 11 hour operation, and apparently the operation was successful, as is evident by me contributing to this forum. Sadly I suffered some fairly complex post operative complications that still have not been understood or fully remedied as yet - 16 months later.
I spent 6 weeks post op in a coma or being brought out of a coma, and it appears that without the extensive efforts of all involved, I would not have woken up ever again.
I hope things go better for you at Harefield, I’m not sure how I would’ve handled your scenario, I thought mine was bad enough 😳 But feel free to drop me a line, I’m happy to chat and help anyway I can
3 grafts was pre-panned, I was told I needed that 2 months before the op. I was supposed to be having an AVR with CABG, it was only when I arrived at Basildon did they suggest I would benefit more from a Davids Procedure.
We agreed plans A, B & C according to what they found (as opposed to what they expected to find) once they got access to my heart.
3 years ago my brother had what is described as an exploding aorta which in most cases is fatal. Prior to the operation he was told to say goodbye to his wife.This was done in the Bristol Heart Institute and my brother was a very lucky man as they told him that a few months prior he had a silent heart attack that left scar tissue which they used to stitch up the aorta.
My brother needed counselling following this treatment as they said he was suffering with PTSD. Unfortunately the waiting list for NHS counselling was very long so he and his wife had to find the money to get some private counselling.
It must be very hard to come to terms with this and totally understandable why you should find this hard to deal with.
Welcome to the forum, when we have our OHS we are not told of the mental side of things, we are told how we need to get our stamina back and how to look after our body scar. We have been through a traumatic event, our brain as to catching up with what as happened to us.
After my surgery I couldn’t get my head round the thought of someone had been holding my heart in their hands. It really freaked me out, but after a while I suddenly realised I had been given a wonderful gift. I had been given a second chance to live my life to see my granddaughters grow, it’s been 5 years now and every day I am grateful to the medical team that gave me my life back.
We are the lucky ones we have come out the other side, we are survivors. Life is good.
Hi Pauline, I kept thinking about my heart being lifted aloft in the surgeon's hand but when I mentioned it to him, he said they actually work on the heart in situ!
Yes I know was given the BHF video to watch before my op, but that vision stayed with me for quite a while it might be in situ, but someone was still handling it.
I was in hospital for 7 weeks before being transferred to the specialist heart hospital. My cardio nurse brought the video to my bedside with a little video player I found it not to bad she said my husband should watch it when he came for afternoon visiting he went a bit white but managed to the end. He told our sons the youngest (42) ! down loaded it and freaked out 😂 he was more convinced I wouldn’t make it. The eldest thought it was fascinating, I suppose it just shows we are all different.
Though in most cases they do, Mr Birdi my surgeon did actually lift it out he told me! As one of my arteries was in a difficult and unusual position ❤️
Hi, I've consistently made the point that they fix the heart problems but the mental health issues are ignored. As well as cardiac rehab there has to be an associated mental health rehab. But when I repeatedly asked, I was ignored. My GP advised a 9 month waiting list for counselling so I didn't bother. Now, 2 years plus on, I'm still suffering from ptsd. I get days when I can't function properly and the issues I have seem more entrenched. It's sadly a broken system that isn't focused on fixing broken people.
I'm with St Thomas's Hospital, diagnosed three years ago with a slowly enlarging ascending aorta, hoping for a PEARS operation with one of the excellent surgeons there if or when my threshold for action is reached, but also looking very hard at the alternatives. I might be in exactly your own situation a few years down the line, so I certainly feel for you.
Terumo Aortic, the company which makes most of the implants used in the replacement operations, sponsored a great guide to aortic surgery from the Hanover Medical School which is available on the web, in English, if you look for it.
I struggle with the unavailability of outcome data for non-PEARS thoracic aortic operations; it's something I want to see change and next year, I'm looking to do some (careful) lobbying/campaigning around it. Aortic Dissection Awareness UK and Ireland is planning a meeting in September at UCL on 'the future of aortic surgery' and I'm very much looking forwards to meeting some of the researchers in this field.
The international guidelines on managing thoracic aortic aneurysms and dissections are due to be updated next year by the American College of Cardiology. The 2010 version (Hiratzka et al) recommended that planned aortic surgery should only be done in major centres [like the Royal Brompton] by experienced specialist surgeons [such as Mr Petrou]. All the data that has been published since then supports that recommendation, which is why I find it frustrating that the centres don't publish their data and are not well signposted. All the evidence which IS available tells me you went to a great place and probably had the best outcome you could have done,
My understanding is that most leaks from sutures with aortic replacement operations happen soon after the operation, and that scar tissue which forms at the joint is highly protective and more so as time goes on. Also, as the chest heals, the ascending aorta is in the best protected part of the body. However, I strongly suspect that statistics - even if there were decent ones available - aren't the real answer to what you are going through.
Have you considered asking for a referral to a clinical psychologist? I know there are specialists at GSTT (to which the Royal Brompton is now linked) because I was offered a referral myself, while discussing my own issues with a (very helpful) cardiac genetics counsellor. It can be a great relief to talk things over with an independent professional who understands this territory and might, for example, help you to frame the questions you really want your medical team to answer. You should not be suffering this anxiety and you do not have to deal with it on your own!
Thnaks Julian, I did as much research as I could before during and after my surgery. I just can't get it out of my mind that what happened was everything I was trying to avoid.... I didn't know that sugical procedure can be changed when the aorta is exposed. I believed it was predicatble because I believed MRI scans would show all that was needed to see. However I understand you can't always predict. I have recurring anxiety about my implant seam failing over time. I am tryign to access a bit of counselling..
I’m sorry to hear about your experience. Have you been offered cardiac rehab? I had my mitral valve replaced in June and am on the cardiac rehab programme. The nurse there referred me to their cardiac psychologist and I have so far had 6 sessions with her by video call, and while I don’t yet feel it has addressed my pre existing health anxiety, it has helped enormously to talk through the traumatic parts of my surgery experience with someone who really knows and understands cardiac issues. It’s a good place to start. I would push for a referral. I hope that helps. Best wishes.
Morning. You're certainly not alone. I have been struggling since my OHS 3 years ago. I don't believe I dealt with the enormity of the whole thing and as a result am constantly reliving the moments I last remember and slowly being aware of coming round again. I keep searching for memories of the 'lost' parts. I know I'm not helping myself but it feels so lonely with your thoughts. I can often almost hear people saying its time you pulled yourself together (I don't mean people on here) but if it were that simple we'd all be fine! I'm struggling getting someone to listen to my ongoing symptoms and believe that as they say 'mechanically' the job is done, then I should be fine. Sadly I'm not. I hope you find a way through.
Thanks debbiB28, I am 12 weeks post surgery now, I understand how you feel. I think there's an element of grief or loss involved in this mentally, you know the feeling that things will never be the same and you will always have to deal wiht the upheaval of being invaded like that, I suppose peace of mind will come slowly..... interrupted by times when we are overwhelmed by the reality of being taken apart by a stranger and that for the time I was in surgery I was more like and object than a person.
Hi, don't be silly, this type of surgery should last you a lifetime. The materials used have been used for decades and is compatible to human organs. I also worried having had the same type of operation in May, but they wouldn't use it if it degraded in a short number of years! Mr Petrou should be able to tell you this. Try to meditate, as this operation wasn't even an option not many years ago and the alternative aortic dissection or aortic rupture is the alternative to the medical graded dacron!
Hello, you are not alone in these feelings. I had unexpected OHS at 20 weeks pregnant back in May, the surgeon removed a benign tumour from my left atrium and repaired a mitral valve. My baby boy was delivered safely in September. After the relief of getting him here safely, the enormity of the operation set in and I started getting days where I felt very anxious and panicky (not too often luckily) but I have asked my GP to refer me for counselling I found that I was constantly playing the situation out in my mind, over and over again. I wrote everything down one day and I feel it has really helped with the playing over in my mind! I’m still waiting for the counselling but hoping it will help when the time comes! X
Thanks CBH192, I'm still getting some discomfort now, I have mental visions of a plastic pipe inside me where my aortashould be... I feel vulnerable. Thna I forget it and feel normal again until the next wave of anxiety. I so knwo tht this had ot be the way... I have an 8 year old boy who was as good as gold when I firt came home. Unconditional love is a great antidote to my anxiety.
This forum frequently sees posts from those having difficulty coping with the anxiety of heart surgery - both pre and post op. However saying - we’ve all felt like you’re feeling now - isn’t necessarily going to help. So what I will say is, for me, once I realised that what was distressing me was what my mind was saying about my condition and not the condition itself, I was able to move on. You say you’re in the 12th week of recovery and physically recovering well - isn’t that just fantastic news!! Keep mentally active with things that give you pleasure, not scare you and make you worry about what’s happening inside of you. Another responder on here did also say that any reaction to the fixing of your heart would have been seen almost immediately and not in a patient 12 weeks into his recovery and feeling well physically. I have heard the same from my surgeon. So, take each moment as it comes and spend your time doing what gives you pleasure, not focusing on things that simply aren’t happening right now. Take care. Sue 🙏 X
Thank you TMeditation, I have enjoyed my recovery in parts, after the first days when i was coughing and clearing fluid from my lungs I slowly started to heal. Now I am coming off a lot of the heavy medication too... so physically not so bad, I feel a sense of loss ...in fact i have lost a pretty important part of my anatomy! it's like grief, I get overwhelmed a bit like when my brother died. I have an 8 year old son too ... he was as good as gold in my early days of recovery and his love helped me so much and stil does. I have my follow up next week I hope I can get a bit more reassurance and take it on board. The thing is everything was turned upside down when I had the surgery, the plan was radically changed from a PEARS to an implant .... very different. I have difficulty believing anything is predicatable... Tim
Hello, Mario Petrou did a quadruple bypass on me at the Brompton in February 2004, I did suffer with mental health issues but here I am almost 18 years later still going about my daily business. It is traumatic when you have major surgery but Mr. Petrou is very experienced and I would just enjoy life. I have had 10 stents also, 3 before Surgery and after heart attack, and 7 since surgery. I am just pleased to be able to be here. As time goes on you will find things will settle down and you will not think about it so much. Take care.
I’m really sorry you’re struggling. I’m under the Brompton. You need to make sure they realise the impact it’s having on your mental health. Ask to be referred to Dr Anne-Marie Doyle - she’s the Brompton’s lead clinical psychologist x
Hi Mr Petrou is a very good surgeon with a high success rate. So good choice. I think the dacron tube use to replace the aorta is a hard material tube and last life long. So, in my opinion, you shouldn't worry about that.
I have gone through similar surgery -David's procedure but my valve prolapsed and now due to have one more surgery to replace the valve. I have completed 2 years now.
Just carry on with life. Feeling anxious/ self petty is normal. As times go you will go stronger and stronger and accept things, live and forget. So just live in the moment and be in peace with yourself.
I am 35 years old who just started a family, I have a one year old child and a wife that’s expecting.
Honestly I used to suffer from severe anxiety ever since I was diagnosed with HOCM and having two failed ablations and now currently In permanent Afib and flutter. I used to be scared of going to sleep thinking I won’t wake up. I understand my issue is probably peanuts compared to some of the procedure some people in this forum have went through. I can only imagine the anxiety that they suffer. My advice is this :
Non of us are in control of our body and no one knows what their destiny looks like. Or when we will return to our lord. I am firm believer of surrendering to the all mighty he is in control and what he chooses for us is the best path written for us. Because we don’t know. But we let evil thoughts take over our minds and drag us down and that’s a vicious cycle your going up against. Try to replace those negative thoughts by replacing them with thoughts like god truely loves me and I will not surrender. The mercy of the almighty is far more greater than the mercy of a mother has to her baby. You just have to put your trust in god and move forward but at the same time consult with doctors and try to take care of your body physically and mentally to the best of your ability and leave the rest to god.
Sorry for preaching too much but that is my coping mechanism
I was told that severe anxiety and its consequences are a common, normal and natural after effect following a cardiac incident. Its your bodies sub conscious way of keeping you safe. I had anxiety quite badly following a STEMI LAD where I had never suffered from it before so following advice I made a self referral (Skipping the GP) to a wellbeing section of my regions mental health services. At first I thought it was completely inappropriate and totally ridiculous proposition but after going through several CBT sessions following a short wait I understood, managed and was able to eliminate all of my cardio related anxiety to the extent that I am less anxious now than BEFORE my incident. I would strongly recommend CBT to any fellow hearties here. For me it was like a miracle cure in terms of boosting my recovery and the things I was able to do.
I can fully understand your concern. I had an emergency type A aortic dissection and a total repair of my ascending and arch, and the mental side of things I tended to push down. When I finally had a follow-up CT scan at 18 months and the results were excellent I was so relieved and realised I had been worrying, but not realised it.
A couple of comments. Firstly, yours was a planned operation, though the plan was changed. The key thing is it was not a emergency and that is a whole lot better than an emergency. This allowed good management of your surgery.
Secondly, whilst there is a small risk of there being a poor outcome, it IS a very small risk, and again, the planned operation reduces that risk. The success and long-term results of these surgeries have been improving a lot over the last 20+ years. The techniques of grafting natural aorta to the dacron are well established.
Thirdly, the theoretical risk of the events you refer to are usually slow to develop.
Fourthly, you should undergo regular follow up CT (or MRI) scans. For an emergency, a typical schedule is 6 months and 12 months and then every year. These intervals depend on what is found at each one. These reviews are a key part of your follow-up to ensure that nothing untoward occurs.
Hopefully those things will give you some aspects to think over.
The mental aspects still remain, regardless of the above, and mental issues after surgery are indeed common. It is estimated, for example, that for an emergency dissection, around 30%+ of patients will suffer PTSD. A further percentage will suffer a lesser, but meaningful, anxiety. You can talk to your GP about this and depending on what your local NHS can provide you may be able to get referred. CBT is a common treatment mode for anxiety and PTSD. It is best in conjunction with a professional, but you can look at some self-help resources.
The Psychology Tools site offers a self-test and review of CBT for PTSD, though I personally think it's unlikely you have PTSD for a planned op. psychologytools.com/self-he... or search that site for PTSD.
Thank you Cliff_G I am lucky I didn't have a dissection and also lucky to undergo surgery at the Brompton. It's good for me to hear what others have said on this forum it makes me feel that I am understood adn others share the same difficulties. I've lost my precious aorta... It's a type of grief I'm feeling.
Me too Cliff... I wasn't at top fitness before surgery...I was a bit stiff and a little "heavy' I still feel I have got quite a way to go, I get completely exhausted after any sort of exertion. I feel vulnerable too... hopefully this will subside over time. T
I feel so sorry for you. I can only add that during my whole triple bypass procedure I refused to read anything negative . I really put my head in the sand. There are lots of very positive accounts of people out there who feel terrific . One thing positive I noticed is that my usual old osteoarthritis has disappeared and I don’t get the amount of migraines I used to have. I feel recycled in that respect. Your alive and try and enjoy focusing on living
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