I don't know if anyone remembers me. I had a triple bypass on 16th September followed by internal bleeding, severe AF, a collapsed lung and fluid on the lung. Two days after discharge I was rushed back in to my local hospital with a saddle PE, PEs in both lungs and a clot in my heart. These had clearly been missed by the hospital even though I collapsed twice on the ward.
3.5 months later brings us uptodate. Although I'm recovering well in some ways I am getting Angina on excercise WORSE than before my surgery. Im also getting sharp pains in my sternum still. I've seen the Cardiologist and I'm waiting the results of a stress/contrast MRI I had just before Christmas. The Echo showed the clot in my heart has damaged the muscle and its very enlarged. I think i still have fluid on tje lung. I have been told to take Isosorbide Mononitrate and not to start Cardio rehab yet.
I feel I'm worse off than I was before the surgery and i feel upset and angry. It's been one thing after another. I turn to food when I'm stressed and have put a stone of weight on since surgery which I know is a big mistake.
I feel I need to vent how I'm feeling. Has this happened to anyone else I wonder? Feeling very low (I'm having counselling)
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Sljp0000
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You sound really fed up and I can understand why. Is what has happened due to an unforseen set of circumstances or due to surgical/hospital neglect?Have you any idea?If you think it may be due to the latter you must try and get to the bottom of how this has come about.This would probably lead to an investigation and perhaps some high level further medical investigations to try and remedy at least some of what has occured.
I hope you get some answers/advice from this group who have lot of info. and experience to draw upon.
Hi, thank you for replying. I don't really know if I was neglected or not but for the time being I just want to get better. Lessons definitely need to be learnt from what happened to me. I don't want anyone else to go through what I am unessasarily.
Hello
Of course I remember you and have thought of you often but as you had not been on or messaged I took it as you must be doing well ( which is wrong of me to think that way when someone goes quite so sorry ) and I am even more sorry to hear how down you are feeling but know the feeling only to well and I am 16 months on and did not have all the complications you had to go through and still dealing with
It is so sad this happened to such a lovely person like you , it is very rare it does and you must be feeling sorry for yourself I would to and can totally understand you comfort eating that can be something you can start to deal with maybe looking for things that are not so high in sugar and fats but as well even if that is not an option for now you can and will address it when you get the rest sorted out which I know you will
There is some positives in your post you say you are doing well to some degree take that thought and hold on to it
I know at the moment you must be so angry with every emotion going round and I am so glad you are getting some Counselling to help with this
Things have not gone straight forward but know that whatever needs to be done or treatment they will do it and get this better for you
We talk about Blips this must feel like a great big hole you are in never mind a blip but you will come out of it and I have known so many that the op had not gone straight forward for them and now they are doing better than me and you will be one of those to
Please come and talk with us do not sit suffering on your own we are here to listen and want to help you through the bad times as well as the good times which I know will come along in the future for you x
Thank you for your lovely reply as always. I actually had a call from the Cardiologist consultant yesterday with good news and bad new. My lungs are recovering well and there are no signs of the clots now. But....there is either a blockage in the LAD artery (which I had bypassed so it might have failed) or my heart is significantly damaged by the clot. 💔. 20% isn't getting any blood supply. No wonder I am getting Angina again. I have to go for an urgent Angiogram in the next few weeks. (Which i hated cos it really hurt my arm) . I asked if they would stent if it was a blockage and he said it wasn't that simple. They would have to have a multi disciplinary meeting about me to discuss the way forward. Feeling in a mess, can't plan anything and really don't know what the future holds. I feel like I'm in no man's land. Xx
I know when you are going through things it can be so hard to see the positives but good news is your lungs are looking good now and that is a positive
I am sorry you have to go through an angiogram again and the last experience you had was not great but this time it may not hurt as much , tell them when you go how you found it last time , I am not sure if you had sedation but have it , helps a little
I can see why the Consultant would not be able to answer your questions till after the angiogram but whatever they find they will come up with one thing or another to sort this and improve things
It is the unknown , the waiting that can sometimes be the worse and I totally get you feeling like you are in no mans land but you won't be forever
Keep talking you will get through this and we are here for you to help and will always listen to how you feel
Hi Sljp0000, I'm sorry to hear of the things that have gone wrong. In your post you mention that you are getting angina on exercise and later on you say you have been told not to start rehab yet. These two statements contradict one another. Given the issues with blood clots and a damaged heart muscle, I would suggest (as a non qualified individual) that you do not do any exercise. If you can walk any distance without any symptoms, stick to that.
Comfort eating is a different thing altogether and I can't help with that - sorry. People do however, say they have put on weight since having heart issues, myself included, don't beat yourself up too much. But if you can walk, this may help to counteract the weight gain. Once you have your results, hopefully they will give you some advice on cardio rehab. If not, there is plenty online, and on this site, to get you going slowly at first.
Hi Steve, when I say excecise I mean a short 20 min stroll . Never used to get Angina before surgery unless I pushed myself hard ie. Marching up a hill or swimming in cold water.
Had a call from my cardiologist consultant last night. Following from my stress MRI there are no signs of the clots now and the lungs are improving. But....there is either a blockage in the LAD artery (which I had bypassed so it might have failed) or my heart is significantly damaged by the clot. 💔. 20% isn't getting any blood supply. No wonder I am getting Angina again. I have to go for an urgent Angiogram in the next few weeks. (Which i hated cos it really hurt my arm) . I asked if they would stent if it was a blockage and he said it wasn't that simple. They would have to have a multi disciplinary meeting about me to discuss the way forward. Feeling in a mess, can't plan anything and really don't know what the future holds. I know no-one can say anything to make me feel better, it all just sucks 😪
Thanks for the reply Susie. Life certainly does suck for you at the mo. Its good to hear they are going to have a multi-disciplinary team meeting, they do those regularly, so you will be on the agenda 😊. It does uber suck that the 'urgent' angiagram is in the next few weeks, our NHS is buggered I'm afraid. Not long ago you would have been in in the next couple of days 😡. In the meantime, if you can, try not to put any more weight on, and maybe if you can, lose a bit. If they ask, tell them you are losing weight, but slowly due to lack of exercise. They don't like people who don't help themselves (I think).
They haven't given up on you, take heart (excuse the pun), and let everyone know how things are progressing. Steve.
I noticed that you should have had a quad and not a triple so in effect you need to be made aware as how to cope without the operation being carried out as fully as intended.
i am no expert but presumably that means that in some circumstances you may still get angina. the likelihood of this increases if your weight has gone up and your recovery exercises are limited.
what sort of exercise are you currently doing and how is your walking? The sternum pain can continue for a long time after the operation so the 14 weeks in your case is not unusual
Hi DevonianThe Consultant phoned me last night. It looks like the LAD artery graft has failed or the damage from my clot is causing the pain. 20% of my heart muscle isn't getting adequate blood supply. I've got to have another Angiogram 'urgently' (who knows when). I can't even stroll for 20 mins now without pain so certainly can't do any proper excercise.
From today no more Christmas rubbish food. Back to protein, veggies and salads for me.
I hope you will keep in touch. It seems you won't be able to get a clear picture until after the angiogram is completed so lets hope that is soon. Mind you, the fact that the consultant phoned you shows they are very much on the case
Good morning. I had open heart surgery in August and was in hospital for a month with a hospital infection after which made me quite poorly and I have been hospitalised since with related problems. I can't give advice on anything that is happening to you but one thing I can talk about is recovery after having problems. I was told that guidelines for recovery are just that....everyone is different but if you have had problems with surgery or anything else that has halted your recovery, it will take the body even longer to get back to any sort of normality. An infection on my wound has only just cleared up, my sternum and chest are still not right even with given exercises and i am quite debilitated with general weakness. I had an appointment with my surgeons registrar last week where it was confirmed again that my recovery will take much longer because of other things that happened to hinder original recovery. I have managed to stay very positive but can completely understand how things can make you feel angry, frustrated and upset. I think you should definitely ask for explanations or ask if there is anyone you can speak to with regard to how you are feeling. I think comfort eating is fairly normal but again, if you think it is a problem, try and speak with someone. I really hope you get some help with how you are feeling x
Thank you for your reply. I'm sorry you've been through such a rough time. It sounds like your recovery issues were quite different from mine with infections and healing issues. Not nice at all.
My cardiologist phoned me last night with the results of the MRI stress test and Echo. There are no signs of the clots now and lung probem now which is good news but....there is either a blockage in the LAD artery (which I had bypassed so it might have failed) or my heart is significantly damaged by the clot. 💔. 20% of it isn't getting any blood supply. No wonder I am getting Angina again. I have to go for an urgent Angiogram in the next few weeks. (Which i hated cos it really hurt my arm) . I asked if they would stent if it was a blockage and he said it wasn't that simple. They would have to have a multi disciplinary meeting about me to discuss the way forward. Feeling in a mess, can't plan anything and really don't know what the future holds.
I am having general counselling but of course that's just for me to vent. I just have to see what happens and be patient. There are no answers at the moment.
Hi.....glad to hear cardiologist has at least phoned you with some results. I replied to your message , not because I've had anything like yourself, I was just saying generally about recovery and how that can add to everything else. I initially had all the infection after surgery but was hospitalised a few weeks ago for other heart issues. All the ongoing problems do have an effect on you and personally I've had to really focus myself to stay positive. I really feel for you and hope you get some answers about how to move forward. Multi disciplinary meetings are usually quite productive because it's more than one person's opinion so I hope that comes up with something more positive for you. I have found generally that people on this forum are very caring and offer all sorts of advice so please let us know how you go. I wish you all the best. Take care x
Thank you so much. Yes I know we're going through/went through different issues but nevertheless still hard to deal with. Any post operative issues mess with your head a bit. I feel quite isolated even though I'm talking about it to everybody! I guess it's still our problem which no-one will ever quite understand how it makes us feel .
Thank you for caring, I really do appreciate your reply.
Post operative issues fo mess with your head and make you just feel like it's all gone wrong. I have had those thoughts many times, especially after being in hospital a few weeks ago....scared the life out of me but I still remain positive....it's good for my mindset. Nobody, apart from people who have been through it, really understand what you go through. The surgery in itself is massive and hard to get your head around. I will always remember what the physio said to me and I've said it to a few people on the forum....she said that after open heart surgery it's not just your heart that has to adjust....your whole body has to get used to a new normal ....and it really does. You are doing the right thing in keeping talking about it rather than bottling it up. I think it's still not long since your op. Don't expect too much yet physically or mentally. Nice to chat. Take care x
Boy you sure have been through the mill. I had my heart bypass sept 19the day her majesty was buried. I had an episode of AF after surgery which was scary enough.
My recovery has gone well, slowly though. The feelings l still have in my sternum are like someone pinching me l think they are nerve related. I came down with covid three weeks ago and all the coughing has made my chest sore. Thank God l’m getting over it now.
What l kept saying to myself over and over “ this will take as long as it takes”. I think l just wanted to be better already and that can be sooo frustrating. You will get better it’s just taking longer than you expected. Be kind to yourself and to your heart.
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