Hi lovely hearties, hope you're all having a good betwixtmass and have managed to catch up with loved ones and indulge in small pleasures.
I had my meeting with the ACHD consultant yesterday and he showed me the Echo of my heart. Yes, I have a hole in my atrial septum. And it's big; 20-30mm, he reckons. Very unlikely that it can be closed non-invasively and I should expect to be referred to Guy's & St Thomas' for OHS, timeframe vague of course but maybe a year wait for surgery. Sooner if we invoke the mighty BUPA policy. Right now, I'm in no rush!
I've never had so much as a filling before so am finding this a pretty terrifying prospect; both the surgery and the recovery. I started to read a bit about others' experience of ASD repair via OHS and scared myself even more! I'm swinging between tears and fears. My immediate family are also reeling - we'd all hoped for a non-invasive option, we've had one major loss in the family not too long ago and I don't want anyone dealing with more stress now, but that's what we have coming up in 2023.
Waiting for surgery is the worst part, right? The recovery is 3 months minimum and I wouldn't be able to work during that time, and as I've just parted company with my last job I won't be anywhere long enough to be entitled to any sick pay; but I'd survive financially working or not for a few months. Counting my blessings (and supportive spouse) there!
So, I enter a new betwix time - the wait for something pretty big.
What's my question? I guess any tips or advice for:
1. Bearing The Wait
2. Things to think about or prepare in the run up to surgery.
3. Advice for taking care of your loved ones when you're the patient! I want them all to be OK and I know they're freaking out too. I suspect they're playing it down in front of me, as you would.
4. Advice for jobhunting, if anyone has experience of starting somewhere new and then having to declare 'oh, by the way, I need to be off for 3 months for heart surgery...' once appointed. Feels very hard and a little deceitful, but several friends have sought jobs when pregnant and you don't have to declare it, and I feel like this is a shorter (if less joyful) absence...?
Sending warmth and positive energy from my whole (/ holey) heart!
Zoë
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LadyZ13
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Wow you have a big year ahead of you. I don’t know which is worse waiting for something to be done or being whisked into a city hospital and operated on two days later, that was my experience. Either way it is major surgery and a slow process of recovery.
I am a 66 year old living on my own with chronic arthritis, which flared up as a result of being somewhat immobile and not being able to sleep on my side for first six weeks. When you sleep on your side it crushes your heart and it hurts.
Prior to my surgery l had lost 10 kilos so l would look good at my nieces wedding . My blood pressure had come down so much my doc said l didn’t need the pills anymore, bonus. So apart from blockages l was in pretty good shape. It really helped my recovery being a little bit fit. Mentally l was shell shocked but that passed l kept telling myself “ this will take as long as it takes “.
Get yourself a little pillow to place over your chest when you get up, cough, sneeze ect. It really helps. Work on your core tummy muscles cuz you will be using them a lot. Hope this helps you. Please keep me posted if you want of course no pressure.
Hi Jedx, thank you for your reply, hearing your experience is helpful. The tip about a pillow is a good one - I have a long sausage sleep pillow already to support me on my side and I can see it being useful for sleeping once I'm more mobile. Strengthening the core is also a brilliant shout. I'm at Legs Bums and Tums regularly now as an alternative to my old high intensity classes and I'll make sure to give the core a good blast each time.
Waiting for your op is the worst bit, by far, so please be assured that the trip to London for your op is much much better.
I went to central London and as soon as I went across the hospital threshold my fears and concerns melted away.
The cardiac teams are so efficient, understanding and kind. And they are very very good at their jobs.
Your recovery could be well under three months. Three months is a fair guess, but you are so young that recovery could be much quicker. And during recovery you will notice improvements every day or two.
You can get yourself fit whilst waiting. Regular sleep, sensible diet and consistent gentle exercise will make your surgeons tasks easier.
Please try to look forward to your op. I was nervous to the extreme, but it was passport to a vastly improved life.
Thanks you so much Blackcatsooty, I can't tell you how much this reassures me. I know I'm going to be in very good hands, it's just bearing the waiting that's so tough. I'm scared about the surgery and about being incapacitated for so long, but I know that you're right and that it's an investment in a longer and healthier life. I'm fortunate to be pretty fit already so that's a bonus; and hopefully that fitness will return even after the surgery.Thanks again, your reply has been a little light on a bleak morning! Xx
Firstly about recovery times. The NHS talk about six weeks post op before returning to an office type job, and eight weeks before returning to a more manual job. They come at this from different directions, but it all amounts to the same thing. For example they say you can carry a baby after discharge, but you can't carry a sack of cement until at least eight weeks after discharge. Or we were told it's okay to exercise with 5kg dumbells during Cardio Rehab, but press-ups have to wait until after Cardio Rehab finished, which was just over eight weeks post surgery.
These are minimum times by the way, some people need longer. Also, let's distinguish between being "good enough" and being "fully recovered". Many people aren't fully recovered until up to a year after surgery. However. most people are in good enough shape to tackle virtually everything they were doing before in much less time.
However you need to bear in mind that the average open heart surgery patient is in their late 60's, as a much younger person you'll be far more resilient with much better prospects of a fast and problem free recovery. So don't listen to all the moans from us oldies, you should really only be taking recovery advice from people of a similar age to yourself.
Secondly, thinking about the risks of open heart surgery. You'll be asked to sign a consent form before the operation which will state there's a 2% risk of a bad outcome, such a heart attack, stroke or death. 2% is not trivial. Unless you've lived an exceptionally exciting life 2% is by far the riskiest thing most of us will ever do,. We'd have to climb Everest three times to have a similar level of risk. I re-wrote my will before my open heart surgery and I'm not given to dramatic gestures.
However, there's a very big exception in all of this. Age. These risk figures are very age dependant. And, as I said before, the average open heart surgery patient is in their late 60's, so at 38 you're three decades younger than the average, and your personal risks are correspondingly much, much lower. Maybe even by as much as a factor of ten.
Bottom line, age is your biggest ally. Your relative youth means you'll be exposed to far fewer risks during surgery and that you'll bounce back much faster.
I feel for you I go from good days to bad. I have an asd but it is not clear and to explain it, it is a leaky one. Bit like a sieve. Trouble is mine can be closed but it is not a very clear from all the tests. Also if it is closed then it can cause pressure issues to my right ventrical. The right ventrical is impaired due to the epsteins anomoly which is an ACHD. I did get a report which I saw on my nhs records from Barts. Wish I had not seen it. Because at present I will be looked after with medication. As I have no heart failure. But the cardiologist has a task of looking into a heart transplant. But she said I will be looked after with medication. But iam in absolute turmoil as to where my mind is going. The only thing I keep doing is looking at last letter which says I will be looked after with medication. But I feel for you and I have not cried so much in my entire life.
Oh Felly, I'm so sorry, that is such a difficult situation to be in - it sounds quite complicated and does make me realise that I'm quite fortunate to have one issue only. I entirely relate to it being discovered out of the blue mid-way through life! It's a huge thing to carry with you.
However, if you have no heart failure and your condition is being managed medically, then I would keep looking at that letter and hold on to the intent to manage it that way. As your case is more complex, perhaps they're considering the options to manage what may (or may not!) happen as you get older. And that could many many years off. We none of us know what's around the corner. It's much easier to say than do, but we can only live in the present. My consultant packed me off with a cheery 'go and have some fun! [before heart surgery]' and while I thought 'well, that's easy for you to say' he is, of course, right...
I do hope you have support from loved ones and from your medical community. And we're all here for you too, of course x
Yes everyone says that go off and enjoy life. God it is hard. I have to admit I don't help myself but what do I say to myself? I have had counselling and have increased my fluoxetine to try to compensate the anxiety. I suppose I have to look at it as something that has to be looked at for a later time. But the cardiologist was happy to maintain me with medication and I have gone to gym and I am doing some cardio work. But it does turn your life up side down. But she does not want to see me until February so I will have to think what to say. It is horrible. This time last year I knew nothing. Now I know far too much. I still work and and try to keep everything normal. But being a negative person does cause me my problems. Thank you for replying as it does help to write these things down and get them off your chest. Take care.
Hello. I thought I would up date you. As we have achd. Any way your words did help and was clarified by cardiac nurse who I do trust, lovely lady. Any way my epsteins carnt easily be fixed without causing more possible issues however as she said I have had it all my life and it is currently stable. So to manage it with medication, which will assist it and keep it stable. I said I had gone back to gym doing light cardio work which she said was good. And I just need keep on top of weight. I have lost a few kilos but another couple would be nice. Just need to sort my mental side out as it has taken a knocked like we have all found. I will have to have a transplant if and this is big if, if it gets worse. And like we said I will have to quite ill and have heart failure which I currently don't have. So now I have got to put faith back into myself and go out and enjoy life. I don't suppose I will be doing any bungee jumping. But we have got to find ways to move forward. I hope you find your answers And asd's are very do able. They would have done mine but as I said it would cause pressure changes, so I suppose mine is like a pressure relief valve. It is incredible how your body finds away of coping and living with birth defect. Take care.
Hello Felly12, good to hear from you, my fellow ACHD... Discover-er? Isn't it weird, having something your whole life and then learning that it's not been right all this time?
How's your mental side? And how long have you known about your condition? I'm wondering how long until I claw a bit of sanity and enjoyment of life back as the news has rather hit me for six. Not so much the hole in the heart but the prospect of open heart surgery, I think.
The body is indeed an incredible thing! It is so very clever. I hope yours also continues to outsmart the challenges you've been born with and that all continues to be well x
Yes fellow achd sufferer. I did tell my mum she carnt get the money back on broken goods, warranty ran out. Any way hows my mental health. Wish I had an answer. Trouble is I may have always had anxiety due to lack of oxygen. Never really thought of it like that. But I started to suffer in 2008 with I thought it was depression. But it is anxiety. And this Achd just put the icing on the cake. However truth be known now, I should have realised when I could not do cross country running or even 1500 meters at school. But I could sprint and do other activities so I never really bothered me. I suppose having had a stressful job didn't help, shifts, being an engineer. But that's the way I was made so you plodded on. Done lots of stuff and been to various places in the world. I first knew of my achd February 2022. That's a day I will never forget. Interesting because I started the ball rolling. I had a dizzy spell at work, collapsed but did not pass out. Nurse at work put my legs up and 10 minutes later I was in canteen having toast and cup of tea. She took my blood pressure and it was very high. Both on triple figures. She sent me home. Any way I had had enough of my anxiety and I was trying to come off my tablets. So I went to the doctor and said I want to know if I have a mechanical issue or electrical issue. So he said we'll we can do an ecg. As I had never had one in my entire life. That's when the fun started. One piece of advice. Make sure you come under your local adult congenital heart team they have been brilliant. Regarding open heart surgery as many people on here say it is not as bad as you think, but I will do my best to make sure my epsteins is kept stable. Because what ever you think, that is the elephant in the room.
Thanks Felly12. Yes, I am under my local ACHD team at Papworth and they called me twice today to get me booked in for a Right Heart Cat (sounds like fun!) at the end of the month before they refer me to Guy's and St Thomas'. They're a good lot, I have phone numbers and emails for them and I'm not afraid to use them!
I didn't understand your comment about the elephant in the room, sorry. What am I missing?
Its an old saying the elephant in the room is the surgery. The trouble that this still causes me issue and that is the fact of surgery. Considering last time I had surgery was for tonsils back in 1971. But the technology and skill has moved on and they are very good at what they do. So put your faith in their skill and knowledge.
Hi there ChappyChap, and thanks for this insight. I'm not even sure I want to find another job while all of this is going on! But money doesn't grow on trees and any work I can get paid for will help give me a buffer for what I suspect will be unpaid sick leave. If by then I'm doing a job I love and I'd rather be working than sitting around doing nothing, then maybe I will return earlier - but the consultant also said the effects of anesthesia and weakness may make you less inclined to rush back - your brain has taken a hit too and might be a bit mushy for a while.
The risk thing does scare me. The consultant said that the risk of ASD OHS is 1% and it's the least risky congenital operation they do - 'all' they have to do is sew a patch over the big gap in the atrial septum. He said 1% was all comers of all ages and health, so I don't know if this is skewed to older patients or not, but I guess so? I don't know what other things I do will give me a 1% risk of serious outcomes / death - probably none?? I've flown in a light aircraft with a mate, and after I said something about feeling safe, would never have gotten on a motorbike with someone else etc, he commented 'oh, this thing is way more risky than being on a motorbike!'. So I don't know. I will use it as a prompt to make a Will. It's A Lot, isn't it? I know everyone on here has come out of the other side of this - but those that didn't can hardly let me know, can they?!
Thanks for the reassurance about age, though. It echos what the consultant said - with relative youth, fitness, health and organ function on my side, it does help.
Hello Zoe and Happy New year to you and yours.There has been much good advice provided already, but thought I'd share my experience. When first diagnosed with leaking Mitral valve I had minor symptoms and seeing the risk percentages of surgery I actually turned down the first offer of going on the waiting list. As time went on and my condition deteriorated I had to come to the realisation the surgery had to happen. A big part of this for me was getting my head around, and also my friends and families heads around, that without it I would die within a few years. But with successful surgery I could be back on a normal life expectancy. At the time at 59 that was another 20-25 years. So whilst it is scary, try and consider how much better it will be having been fixed.
As others have said, there is a big skew in the numbers on age and condition, as my consultant said these numbers include some very elderly and very ill people. You are neither of these. Once your family understand it is the only way to a healthy and happy future, they will start to understand. As my wait went on I was actually looking forward to it.
One last point on jobs. Before this happened to me, I was in a position I needed a job for around 6 months before invoking an early retirement plan. I had left my existing job and didn't want to deceive a new employer. So I went through an agency and explained my position and got a cover job for 6 months with a local marketing company. Nothing like I had been doing before, but I really enjoyed it and had no problems when it came to an end?
Hope everything works out for you, keep positive and looking forward.
Hi there LadyZ13. I had different heart surgery to you, I had an aortic valve replacement and an aortic aneeurysm repair at the age of 73, neary 2 years ago, and got through it just fine. I was in hospotal for 13 days because of my age.
Please try not to worry, xx the waiting really is the worst part, The Doctors, nurses & the whole team will be fantatic , & will get you through it all. Please don't look things up on Google, It's muxh better to talk to your cardiologist & surgical team.
Also, don't feel you've got to carry your family's anxieties on your shoulders . You'll get stressed. Just read all the sensible advice on here. Honestly, you'll do very well. Good luck xx
Hi Isobel, thanks for your reply. This has come so completely out of the blue - I did a 5km run yesterday and I feel OK (other than completely terrified!). This time last year I was interviewing for the job of my dreams - which turned into a bit of a nightmare by the end of 2022. I've gone from a very busy high earning professional to an unemployed heart patient in the space of a few weeks, waking up every morning feeling sick with worry and really struggling to think about finding another job.
I know the waiting is the worst, and that it could be a very long wait. Does how you feel about it change? I'm aware I'm only 4 days in to this unwelcome new situation. Does the anxiety reduce over time? Or does the misery persistent until you arrive at hospital for the surgery?? The consultant told me to go out and enjoy life for now, but that's extremely difficult carrying this information!
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