13 months ago they said my aorta was bulging in a place..should be 2.5 cm but about 5.5 and might possibly pop at any time..or might not.If it popped then practically instant death...anyway they rang me three weeks ago to say they were ready for me...I did wonder whether to go in as I had been fine for the last 12 months..able to do anything...no pain at all..in fact no symptoms.Anyway I had it done two weeks ago...hospital for a week and then home.Weak as a kitten...recovery could take months....it has also damaged my hearing in my left ear...can't drive..asking myself if I should have just carried on without op? I'm 65,new on here and feeling very sorry for myself!
Was it worth it?: 13 months ago they... - British Heart Fou...
Was it worth it?
Written by
Khartoum7
To view profiles and participate in discussions please or .
46 Replies
•
It's a fair question, but this is the wrong time to ask it.
Two weeks after open heart surgery and of course you're feeling battered and bruised, so right now it's all down side.
But in a few months you'll be feeling much better (provided of course you rigorously stick to your breathing/coughing exercises, shoulder rolls, and your daily walk) and that's when you should ask "was it worth it?".
Then the operation will be a distant memory and you'll be enjoying waking up every morning without that nagging doubt that today might be your last.
I hope so!Thanks for taking the trouble to reply! I appreciate it 
So true. It was 6 weeks post bypass before I felt "normal" again.
Dear Khartoum7
Do I ? Don’t I? Do I? Don’t I ? I feel your pain and at the end of it you did, and that was extremely brave of you {medallion award later}
So now your in your recovery stage with time on your hands to try and work out all the ifs and buts.
I don’t know you from Adam but I for one are pleased that you decided to side with the science of the disease and get the operation, why? Because once you had been diagnosed it would have played on your mind { the instant death thing, if not for yourself then your loved ones}
SMALL STEPS !!!!!!!!!!!!!! And soon you will be back to your new old self. Keep strong, it will happen for you, follow all the guide lines and be a good boy for once and listen to the people that are more knowledgeable about this than you.
Fight your corner, get rid of negativity as it appears, do what ever you need to do to get your mind and battered body through this.
We may never meet in person, but now you will always be in my thoughts.
Feeling sorry for yourself ? Well wear it as a badge and be proud that you can reach out for help, you are not alone, you never have been, nor will you be in the future, to many of us already know a little about you.
Take care { if you don’t ill send one of the ward sisters that I had around your house, and believe me you just don’t wanna go there}
Hope my reply to you does not seem to flippant, I know what your going through, we know what your going through, the NHS knows, your family/loved ones know, now its time for you to know.
We are here to help { me included }
Khartoum7 in reply to
Hey Blue...not flippant but cheery! 
That's what I need! Yes I will just bite the bullet,take small steps and try to be realistic.The trouble is I'm a very impatient patient! Thanks again..much appreciated!
As someone who survived a sudden cardiac arrest, I am 100% certain that if i'd had a choice (surgery) that would have prevented it, I would not of hesitated.
How did you even discover you had this condition? Did you have any symptoms?
I think you've done the right thing, though of course I'm very sorry that you have had the hearing issue; I hope this gets better and that you get support in managing it.
I have an ascending aortic aneurysm found three and a half years ago, when I volunteered for a sports cardiology study. It came completely out of the blue - no family history, no symptoms - in fact, I was as fit and healthy as I've ever been. It came as a total shock, was a steep learning curve, and meant I had to cancel and pull out of a series of planned sports events including European and World championships and radically re-think my priorities.
I didn't really have a choice: after a cardiologist advises you not to do competitive sports, travel health insurance (a team rule) is problematic. Sudden death while doing something you enjoy may be a good way to go (though dissections are extremely painful), but having witnessed the effects of a death during a race on surviving family, other competitors, race organisers, it's not something I'd want to inflict on anyone.
Would I rather not have known? Well, I don't advocate screening for everyone. I was working as a fitness instructor and pool lifeguard; not everyone has physical jobs. I might have got away with competing, but then again, I might not. I'm glad to be alive and well.
My annual check up is at the end of this month, I'm with a world-class NHS adult congenital heart disease team, including great surgeons, one of whom I've talked to in clinic, and have a specialist cardiologist with whom I'm discussing medication and have reviewed my scans. The aorta was 4.5 or 4.6 when first found, 4.7 or 4.8 last year, I'll be offered an operation if it goes over 5.0 cm. It's almost certainly genetic though tests have all come back negative. There are risks attached to all surgical options, but doing them at a time of choice greatly reduces them.
I've met - and had generous support from - people who didn't have our choice and went through emergency operations for aortic dissections, spent weeks or sometimes months in hospital, had repeat operations.
It's common for people who have open operations on the descending aorta to lose speech for months, as the nerves to the vocal chords get damaged and take a long time to re-grow.
One of the survivors I've met is now a wheelchair user having dissected on a training ride for a long distance charity bike event.
I'm about to start on low level blood pressure medication, I think, as a precaution: dissection survivors often have to keep their blood pressure tightly controlled with drug regimes that are really tough to cope with.
Hang on in there! You're not alone, things will get better, Keep talking to your medical team and don't discount the help available from the BHF helpline, if you need someone else to talk to.
Hi Julian...what a terrible shock for you...I'm guessing you're quite young? I believe the recovery rate is quicker the younger you are so I'd imagine you will have the op if they offer it to you? have you thought about a new direction for your career? Could you get a coaching qualification perhaps? I do appreciate you sending me this and wish you all the best. Thanks....
59 when diagnosed, 63 now, retired from full time work two weeks ago. But to cardiothoracic surgeons, that's still young ...
You're quite right, there's more than one way to be involved in sport. I'd booked travel to Ibiza a couple of weeks after my diagnosis to take part in European multisport championships, which obviously I had to withdraw from. However, I still went there and spent the week volunteering in multiple events all over the island as a helper, and had a great time.
In fact, one of the reasons I volunteered for the sports cardiology study was because one of the people I was coaching had a dissection during one of my sessions - though it was a coronary artery, not the aorta, which was affected. He was younger than me, had emergency surgery - and has since been back swimming in my sessions.
There really have been some positives from my changed priorities, and I'm also trying to repay some of the support I've had along the way, volunteering with a BHF project and also with and for the Aortic Dissection Awareness (UK and Ireland) group, which has just recently registered as a charity. Lots more to be done.
Hello, you are in the early stages if recovery and probably feel that you will never be 'normal' again. I think this is almost the toughest time! I discovered out of the blue that I had an aortic aneurysm measuring 5.8cm - I'd had no symptoms. I have 2 young children and to be told if nothing was done it may suddenly rupture, was very scary. I have since found out that a family member did die in his 20s from the same condition. So I had the op but it was a huge thing to have, when I hadn't been affected by any symptoms. The initial weeks of recovery are challenging when there are so many restrictions on what you can do and my emotions were all over the place. I used this time to really focus on me, did my daily walking and bit by bit see progress. I didn't feel ready to drive again until about week 10 but when I could get about under my own steam, I felt better. Bit by bit, I realised that I felt able to do more things. When you have been in the position of being unable to do many things, as the weeks pass it becomes easier to see how far you've come. That time will come for you. Be kind to yourself, don't put any pressure on yourself, accept there will be rough days and others when you will feel more positive. Recovery will seem slow but steady and in a few months time, hopefully your life will feel much more normal. My op was a year ago, and the difference now to those first few weeks is huge. Thinking of you and wishing you all the very best 🙂
Hi Coper....thanks for the very positive message...I do appreciate it.It s only 19 days since I had the op so I am realising that I have to be patient. The trouble is my mind says..'well you've had the op so why aren't you immediately better?' I think when I am able to drive again that that will be a huge turning point in my recovery.Thanks again for taking the trouble to reply.
Hi Julian m
We have discussed before I know and glad you are still being monitored closely. Interested in you saying surgery at 5.0 cm . Can I ask how you have been enabled to have the operation at 5.0 cm rather than the 5.5 cm guideline? I appreciate ( as we discussed before ) the lower USA guide line of 5cm. I also appreciate the need for a patient centred approach which I would prefer but recognise there have to be guidelines. I can’t recall Julian if you have BAV which is what I also have along with a 4.9 cm ascending aortic aneurysm. Also interested in competitive sports angle although my cricket is not that competitive in terms of very heavy endurance but does mean batting and running sometimes for 1-2 hrs if not out early! Any advice appreciated on all the above.
Rob
Hi Rob - my cardiologist, who specialises in aortic disorders, is convinced that my condition is genetic rather than degenerative and this is the basis for going with 5.0 rather than 5.5cm.
My valve is I think definitely tricuspid - several experienced echo operators have taken a lot of trouble to check this. So it's not a bicuspid valve thing, unless a new test shows it is ...
There are a few signs pointing towards connective tissue disorders. My hands meet the criteria for arachnodactyly, there is arterial tortuosity in my neck, my arm span is significantly greater than my height (which comes in handy when reaching things on supermarket shelves but has no other impact on my general health).
She said that her view would not change if genetic tests came back negative (as they have done, including careful sequencing of the FBN1 gene most strongly linked to Marfan). Though I am not particularly tall and don't meet the Ghent criteria for Marfan (the US Marfan Foundation has a great guide to these on their website) I still 'look like a Marfan patient' to her.
Effectively, I'm being treated almost as if I had Marfan.
The big international guidelines last revised in 2010 are due for an update this year: it seems to have been put back from this quarter to the third quarter of the year. This may clarify guidance on 5.0 versus 5.5 cm and be influential here, too.
I expect the revised guidelines to confirm the idea that it depends on how good your surgeons are: if they're first rate and do a lot of operations with great results, then 5.0 cm makes sense. If not, then it makes more sense to wait - or find a better centre. Unless, arguably, it's an emergency, in which case you go with whoever is available right where you are, right now. Though even there, there's a good case for emergency transfer to specialists who really know what they're doing.
Dear K,Life is short. Enjoy each day and do your very best. Don’t allow negative thoughts to affect you. You were lucky!
All the very best
B
My brother (58 yrs) actually was one of the lucky ones whose 'bulge' popped, and yes in over 90% of cases it is instant death. He was so lucky that there was a surgeon already at the Bristol heart institute who had the skills to deal with this but prior to the operation my brother was asked to say goodbye to his wife as there was a 50/50 chance of survival. The surgeon sowed up the aorta using tissue from the heart.
He was in an induced comma for about 4 days when they slowly brought him around although at that stage they had no idea what damage had been done.
4 years later my brother and his wife have moved from Bristol to Devon where he is enjoying a full and healthy life. Warfarin is likely to be a regular part of his life but apart from that he has made a full recovery.
I know you probably don't feel like it now but it sounds like you made the right decision, you were walking around with a ticking time bomb inside you and fortunately it was deactivated before it exploded.
Recovery is hard, most of us have been there, done that, but looking at the long term benefits it is worth it.
Try and stay positive, as hard as that can be!!
Thank you so much Heather for your reply. It does help hearing these stories from other people and that there is hope of a decent recovery.
I wrote a 'diary' on here after my bypass in 2017 and I often read through it as a reminder of my recovery.
I say in there I question my decision to have the bypass and wish I hadn't had it, but I probably would be dead by now.
I am not a depressive kind of person, but I had terrible bouts of depression and there were days it would be 1 step forward and 2 steps back.
Just take it one day at a time, you are not alone!!
It's the helplessness that gets me...the not being able to drive at a whim...I live alone and am relying on two good neighbours to get me stuff. But hey.....Spring and Summer are coming..I can sit in my garden for periods.....thank you again...
I live alone and although a friend stayed for a week after my op, I was glad to be alone, I relied on help from family members but did spend a lot of time on my own.I think if you are like me you are very independent so when you cannot do things for yourself it is very frustrating.
It isn't easy but you'll get there, good luck!!
Khatoum someone once told me to focus on the things you CAN do not the things you can't. You obviously have the Internet so get your shopping delivered. I use Tesco and Ocado who both have slots for vulnerable people as do the other supermarkets. Both companies will bring their produce into my home as per instructions given on the day you ordered. There is a minimum spend so if you are on your own you will need to plan ahead with your menu. We have all had that should I, shouldn't I question but what was the alternative?
Summer is on its way. The bluebells are out. Life is good!
Hi Becks...yes I have looked at Tesco and Asda shopping online and might go that way.Obviously I can't drive for a while but I've looked at bus timetables (bus stop opposite my house)and might go to the local shopping centre later in the week just for some small stuff and to get out! My tulips are out so the garden is looking good! Thanks very much for the reply!
Remember you can't carry very much!! I bought a one cup to make tea and coffee.
Somewhat different, but my husband had a ruptured abdominal aortic aneurysm and just about survived. He's also had a triple bypass. He walked Hadrian's Wall last Autumn and regularly plays golf.Hang on in there and things will get better X
If I 'd known I had a balloon inside me ready to pop at any moment I wouldn't even have hesitated no matter how hard the recovery. The anxiety of living, waiting for that to go bang would have made life unbearable. I lost a dog from the same thing. It was instant and incredibly shocking. It had been leaking ( unknown to us) for weeks. Abdomen full of blood and a very unhappy dog.
I supposed as I had gone thirteen months since they told me and had no symptoms,no pain and could do whatever I wanted(and did not let it worry me after the first week or so) I had become used to it.I never dwelt upon it ,wasn't scared and just got on with it.I also think the practically instantaneous death (not long drawn out illness) had a bearing on my thinking! So sorry to hear about your dog and thanks for mailing me.
I can promise you Khartoum7 , if you hadn't had the op, you'd be dead by now ! I had the same operation as you plus an aortic valve replaced 11 months ago. Yes the first few weeks were hard work, but I was driving after 6 weeks. Have you got anyone to help you round the house or with your shopping ?
All I can say is I wake up every morning now, so glad I'm still alive and have got a second chance. The alternative doesn't bear thinking about ! I'm afraid you'll just have to be patient for the mean time, good luck xx
Hi Isobel....I'm going to pay to get some domestic help this week as I can't clean anything or hoover!And I have a couple of neighbours who help with shopping so I should count my blessings really! Thanks for the message...much appreciated.
Good Idea to get a cleaner Khartoum, that's what I did. Glad your neighbours will do your shopping .Just remember you must'nt lift anything heavier than half a kettle of water for another 4 weeks!
I paid a relative to do my cleaning for a couple of weeks although when you live alone there isn't much to clean.
The kettle issue is the reason I bought a 'One Cup' ideal when you can't pick up anything heavy.
Not being particularly houseproud(!) there is a fair bit to do so it will be money well spent! And getting the sheets changed ,washed and the bed remade every week is utterly beyond me at the moment. Thank heavens for frozen meals and the microwave too!
I know what you mean about making the bed, even now I find my mattress heavy to lift when making the bed.I am far from house proud, but when I can write my name in the dust it is time to shake the duster about!! LOL.
I could write War and Peace in my dust I think! Thank you for your messages of support...I think I'm going to have a lie down now
in reply to Khartoum7
Hello again, I just wanted to say….Told you so ! You are important and 40 odd replies to your first post proves it.
We are pleased that you had the operation done and if that amount of complete strangers are pleased , then it is time you was.
Good luck with everything { hope I didn’t disturb your rest }
Khartoum7 in reply to
haha...you are right Blue...and yes it does make a big difference when people do comment! Thanks again....I feel better than when I put my first post on that's for sure!
Please try and remember OHS is major surgery and it is still all early days for you! It is understandably especially hard for you as you went into hospital actually feeling fit and well and then after the operation you feel as if you have taken major steps backwards in your fitness levels. My husband had a similair experience to you I feel. He was fit and well and felt completely fine and normal when he went in for OHS for his widening aorta and then also had to have his aortic valve replaced. He found it difficult afterwards to come to terms with his new mechanical valve which thumped and bothered him and also felt very frustrated that he could not even walk a few steps and was so out of breath. I think we just had not either of us realised the huge impact of OHS. I think what you have to try and remember is that recovery is a marathon not a sprint! My husband was often disillusioned about his lack of fitness and what he could not do. Hard as it is I think you have to try to focus on what you can do each day and look back to how you felt on day 1 after the operation and realise the progress you have made, bearing in mind that you have ups and downs. In short yes it is worth it! Imagine if you had not had the operation, living in constant dread of what mightbe ... My husband returned to his previous fitness levels within a couple of months. He does still have problems coming to terms with his mechanical valve which he is very overly aware of due to the thumping sensation he experiences but I do believe he is in the minority with his experience. He is fit and well and is now in the process of recovering from knee surgery where once again he needs reminding that recovery is a marathon not a sprint and one has to try to be patient! I wish you all the best and would add do speak to the medical staff. We found them to be very reassuring and sometimes just that confirmation that all is as it should be ( even if you feel awful!) helps you feel more positive and helps you believe that life will return to normal in due course.
Morning...thanks very much for your comments....yes I think you're totally right about the fact that I went in fully fit and have come out of the operation(three weeks today!) and plummeted totally in my ability to do things for myself without a lot of effort involved.I can make myself cups of tea and toast and microwaveable meals and get upstairs and downstairs so I'm sure that I'm better off than some.Like you say it will take time and positive thinking.Posts like yours and the others I have had on here are a great help so thank you very much!
Hey, I'm rather late to the party, but I, too, have been facing all of this recently... Feel compelled to share as I hadn't seen a post sharing the same op/experience before I had mine and really wish I had ! Story follows...Had various tests as part of an investigation into high BP and an allergic reaction to one of the BP drugs. That precipitated more tests over more time. After 6months the confirmation came that I had an aorta at 4.9-5.0 and a high likelihood of a genetic link (mother and grandmother went 'pop' unexpectedly and had no interventions available). I'm 57 and around the same age as they were.
I also had no awareness of symptoms, although looking back I was 'running out of steam' more and more quickly. (I put that down to general age/fitness)
Over that 6-8 months my mental health spiralled, coupled with the isolation of WFH in my job and fear of going 'pop' myself. I also live alone and the thought of my own mortality was overwhelming. I ceased to 'feel like me' months ago.
Earlier this year the medics urged me to have surgery asap and I was fortunate to wait only 3 weeks, but all that time I was terrified. Now I am 2-3 months post surgery - I had the ascending aorta, hemiarch and hemi-root replaced, but I kept my own valve. I consider myself ridiculously fortunate to have had the opportunity others have not.
Despite talking to someone who had the op (amazed to find someone), nothing could have prepared me for the experience, especially as this was my first stay in a hospital. I really believed I hadn't pulled through for the first few days, it was all so alien and debilitating. The road to recovery has been uphill, although I struggled to accept how it had impacted me. (the only bone I'd ever broken was a little toe !)
I can so concur with all the advice above 100% - but wish I'd known much of that beforehand. The medics are clearly highly skilled as this is their day job, but I felt like I'd been beaten up and woken up in another reality !! When I noticed things that are new or unusual (or just plain scary in the first few weeks !) they'd say things like 'oh, that's totally normal', which I found frustrating, but have learnt to swallow it. Cardiac rehab was a surprise as I had no idea it existed as a service more than exercise classes until recently.
All that said, I'm still in recovery, now pretty much self-sufficient but I believe I will still be coming to terms with all of this for some long while to come.
So I can understand how you feel and don't be hard on yourself. My own expectations of myself and my life are changing every day. And as each day passes, I can see how very fortunate I have been (indeed reading everyone's comments here has been enlightening, too).
I wish you every positive step on your road to recovery - and remember, we are not alone in this !!
hello! Well I'm 9 weeks post op and to answer my own question I do now feel it WAS worth it! The first six weeks were the worst(no aftercare,weakness,pain ...the usual stuff....plus trying to cope with the realisation that the op had badly damaged the hearing in my left ear!)At six weeks I got miffed and starting being proactive in my dealings with the NHS and things started to get done! Much stronger now...started driving again this week so that has given me much more freedom...can lie on my sides without too much discomfort...so if people can get over the first few weeks it does get better.It is harder, like you say, when you are alone but if you are fairly self-reliant that helps enormously!
I'm glad that you're getting through it now and thanks for mailing me.
Not what you're looking for?
You may also like...
Bio-oil - is it worth using?
Hi, I had a CABGx4 five months ago at the Bristol Heart Institute. Wounds seem to be healing nicely.
FitBit - worth it or not?
I had a HA 15 weeks ago, just had a review with my GP and had to change some of my meds because of...
Microvascular angina? Is it worth getting a second opinion?
they are gradually getting worse.
I've diagnosed myself with microvascular angina, which neither my...
Myo cardial Perfusion
again after a month they put me in for a Nuclear Myo cardial perfusion scan. It might have something
Atrial Fibrillation. Help.
Thanks for letting me know!
Post Bypass Discomfort
When can I get back to my normal level of exercising?
