Hello, I had my ablation 1 week ago - at Barts under a trial; long day with 1 hour MRI followed by 6.30hr under full anasthetic.
The next day was discharged at about 11am and came back home where I had a sandwich and went to bed to watch catch up TV. 5 hours later I started having great difficulties breathing and realised this was serious; as I live on my own I phoned 999, opened the front door for the paramedic. Was put on oxygen or whatever that stuff is. It took 2 hours to get to A&E Whipps.
Whipps discharged me at 2.30am with a couple of paracetamols and an asthma inhaler (never had asthma in my life). They said I was OK now that that it was a mystery why this had happened. No beds were available anyway.
3 hours after coming home the same thing happened again - if anything worse - this time the Paramedic who was here in 5 minutes gave the ambulance a higher priority and I was back in Whipps in 40 minutes or so.
I spent the whole day in an emergency cubicle until there was a bed at 9pm and stayed there for 3 days. The treatment consisted of lots of diuretics and oxygen for the whole period. I had all the tests under the sun and the doctors said I was OK now but had no idea whatsoever why this had happened. They said the ablation was successful with a constant rhythm. The discharge paper said I had acute heart failure - apart from persistent AF for last 11 months I am fit and healthy and never had any heart problems - I am an active 69 years old woman.
I tried to speak to the people running the trials but they also said they could not understand it.
Since coming home feel fairly weak with some chest pain (under right breast but it was checked out at Whipps and told muscular - it is not but obviously not major as it would show up in scan). Fairly anxious and walking up worried middle of night.
Since no one in the medical profession is able to give me an insight (and no appointment due until 3 months post ablation check up) I wonder if anyone has had the same problems and can shine a light on what may have happened.
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michou
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Ring Barts arrhythmia team or your EP secretary first thing on Monday and ask your EP to ring you. Barts ep's are meant to be excellent surely they can give you an insight to what happened and why. You won't be the first person to have this I imagine.
Did they do the ablation at Barts or Whipps Cross. You need an explanation and a plan moving forward. You can't wait three months in this situation it's not acceptable.
I rang Barts and they did not seem particularly interested - made sympathetic noises, said they would get the person running the trial to speak to me when she is back and to either go to my doctor or to A&E if further problems. All very poor really hence why I contacted this forum.
So sorry this has happened you must be so upset. Can you see your GP Monday. Heaven forbid you need another trip to a and e but could you go to another hospital in that case. Is there an a and e closer to where you live.
Persist in your inquiries and search for some adequate explanation and how to navigate your recovery. I hope you have a good general doctor and a responsive cardiologist and electrophysiologist. Make sure they discuss your condition with you. Ring parts again and if you do not get an adequate answer ask to speak to the person's supervisor. Good luck.
This is not acceptable at all!! Can you attend Barts A and E/ This would be better as you are being treated there.- they can get whoever is on call to see you I would ring the arrhythmia nurse again and say that you plan to come to A and E if it happens again as the hospital you went to listed you with acute heart failure!!
So sorry to hear this. It is worrying and certainly completely unacceptable. I would keep on at Barts until you get to speak to the person in charge of the trials. All this is added stress though.
I had acute heart failure after being left in AF too long but that was before my ablations . It was a very bad time.
Sorry but we are not medically trained and MUST NOT make guesses about this sort of thing. There are a number of possible reason associated with the ablation and I am fairly sure that the chest pain is associated with it. There is a lot of healing to do inside even if you don't have a big zip up your front.
I do think that you should contact the EP team who did the ablation and speak to the arrhythmia nurse, I assume you were given her hot line number. and explain how you feel.
Nor should we give advice on how we assess the persons condition to be none urgent. They could then have a false sense that the way they feel is normal, when in fact it's not.
Just catching up on some posts and just a personal question to you. Seems everyone on here is from the UK. I am from KY in the US. Not familiar with a lot of terms and places mentioned and the medical system. Is there a forum u talk to that is UNITED STATES abased?
Atrial Fibrillation Association is a UK based organisation with world wide centres including one in USA. Many of our members here are from US and even some from the antipodes. Other than some drug names being different and ECG translating to EKG in US there is little difference in terminology .
Sorry to hear about the problems you've had. Some good advice from others here, just want to say I feel for you and hope all will be well soon. Have you relatives nearby?
Thank you everyone for your kind words and I will try and answer what I can in one response.
Barts does not have an A&E department so I was sent to Whipps X being the nearest to me - no other nearer and one has to go where the ambulance takes you. I phoned up the Arrythmia nurse today at Barts but she did not seem very interested, immediately said it can't have been anything to do with procedure (obviously worried about being sued) and just said to call 999 if I had further problem or to go to my doctor. I told her that the discharging doctor had ignored my flagging up that I was very flushed and hot in the face and that I could not get my shoes on as my feet were so swollen and that I thought he was more interested in me vacating the room for the next intake.
My doctor is very sympathetic usually but has admitted that she knows little about this and usually refers to Whipps Cardiac unit where it can take months to get an appointment - or she refers directly to A&E. it is like going round and round.
I had an MRI for 1 hour before the ablation so I presume they know the inside outs of my heart - I was not told the outcome but no reason to think anything wrong as previous scans had shown no defects. In A&E they did Echos? scans/blood tests till I have almost no veins and much listening of my chest - and monitored fluid levels. I did not have any fitness tests as was in bed on oxygen.
I suppose I should be grateful it did not happen today with the cyber attack - although Barts, being Saturday when I was discharged did not load up any records of my procedure until Monday - the team at Whipps could not therefore access any info save that I got a friend to bring in the discharge papers from my home. When I left Whipps and they gave me my discharge papers they had me listed at an address I had not lived in since 1973!!! I laughed and at least was grateful that my records go back that far.
All of this to me is symptomatic of what is happening in the NHS - some great nurses with excellent procedure on the wards and some excellent junior doctors (and some terrible ones with little training it seems) but it feels that they would rather you went away when things go wrong.
We are all here to support you and send cyber hugs. Take care and I hope things settle for you now. If not call emergency services and get medical assistance. It's your right to have good care. X
Michou, your experience on discharge is appalling. The fact that the swelling in your feet was disregarded beggars belief.
I had a potentially life threatening complication during my second ablation as a result of which it was abandoned uncompleted in fact they hadnt even started ablating when they had to pull out quickly. I then had fantastic care on the c.c.u. and eventually was discharged when all was well. However now that I am unable to have any more ablations I do feel as if I have been abandoned by my E.P. and to some extent arrhythmia nurse almost as if I am of no interest anymore. Like you I am having to fight for everything.
Your treatment though has been dreadful and we have all come to expect better of such a well thought of hospital. Unfortunately you are probably going to have to keep fighting to get answers which is not what you feel like doing when not feeling 100%.
We will all be rooting for you. Keep us updated. X
My son had an awful experience with Whipps cross following ablation. I bought him home the same day and in the evening he began coughing up blood. Worried of pulmonary embolism so took him to local A&E who tried to find out what may have happened in his ablation. No response from Whipps or Barts. I left messages for two days-no response. After a day in A&E where locally they had no idea or experience relevant to his procedure, and still bleeding, decided anticoagulant may be problem but no contact from anyone at Whipps. Dreadful experience leaving son with ptsd like symptoms. I have every sympathy for your experience of Whipps aftercare.
So sorry for your horrible experience. It is very worrying that Barts do not appear to be taking your situation seriously, especially as they are supposed to be the centre of excellence for all things AF related. I'm no expert, being fairly new to AFIB, but you would presume that as you were part of a trial, they would be taking far more interest in your situation. I hope you manage to get some information from your EP team soon.
Please let us know how you get on.
What a time you have had and how confusing AF is. Everything that you have said does appear to be 'how it is' With AF they just seem to focus on what electrical problem you have and if they think they can fix it. There does not appear to be any focus on the symptoms we have or how we cope with them or even if our bodies can cope with AF. To have a 1 hour MRI and then a 6 hour operation on a 69 year old body is a lot of stress on your body. I can tell you that after my ablations I was was breathless and that does ease. I also have a LOT of pain and flicks and kicks and all sorts of aches and pains. The same happens after each AF event and there have been 2 since the last ablation. It takes me weeks to recover from ablation procedures I've had. We are all have different bodies and some people do get over it quickly. In the past I had several return trips to A&E and I would say its always best to check it out if you are concerned but as you have discovered they run all the tests and when there is nothing clearly wrong that they can deal with you are sent back home again to cope with it all. Believe me I know its tough. Finding that balance between knowing you need help and the times when all you can do is 'ride through' the mayhem its tricky. With my symptoms I have learnt to ride through it but if you are breathless and in need of oxygen and have swelling then I think you should check it out. Good luck with your recovery its hard work having AF and recovering from ablations.
I'm glad my friend who has AF isn't on this forum, it would make her even more determined not to have an ablation! She's already refused an ablation because the consultant told her about the risks of problems with the oesophagus, following the procedure and there being a 1 in 1000 chance of someone dying from it! I keep telling her that the chance of her having a successful procedure are high and that the possibility of a stroke and dying, or being permanently disabled if she doesn't have, wouldn't stop me having it done if I needed it.
I really hope that you get some help with your issues Michou, it must be very scary. Sending hugs
Thanks everyone for the advice and support. Am feeling better today and went for a very slow 2 miles walk with dog - I am a tough old boot and believe in pushing oneself.
The nurse at Whipps A&E said they get lots of people coming in with problems post ablation so there are things they are not telling us (or recording). I am grateful for the advice on this forum about eating post ablation - small meals and restricted bread to avoid indigestion - again you would think they would tell you this when they discharge you; it makes sense and could avoid unpleasant symptoms.
Now that I am feeling better I will leave it a couple of days for Barts to recover from the IT issues and then contact them again and see if I can get a more satisfactory response. I always say that things happen, mistakes are made that is just normal but it how they deal with it once it is pointed out that matters - this is why John Lewis is so popular because of their after sale service (mind you even that has deteriorated somewhat)
I had a similar experience . I live in the US and had my first ablation in March. AFter an overnight stay in the hospital and back in normal rhythm, I was released from hospital. I did tell the Dr. I was feeling some slight chest pain but he did not seem concerned. I went home and tried to relax but the pain worsened and I was having trouble breathing. My husband called 911 and was rushed to ER. I was in congestive heart failure: lungs filled with fluid and my potassium was at 2.8 which could be fatal.I was given morphine for pain and a diuretic IV. My body weight showed a 7 lb gain because of the fluid!
Apparently this is referred to as FLUID OVERLOAD and can happen after ablation. There was no definitive answer why my potassium level was so low.
IT has been two months since ablation and I feel better but I still am having heart rhythm abnormal flutters but last minutes not hours! I have breathlessness as well.
I return to Dr in a couple weeks for a three month checkup and will discuss the symptoms I am having.
Very similar and interesting although I had no chest pains at the time - my potassium levels were very low and I was given potassium tablets but they said that was because I was put on Diuretics for 3 days to drain the fluid.
Subsequent to this episode I think I have lost weight but I think it must be to do with diuretics and loss of appetite - every cloud has a silver lining as they say!
just found this article which talks about heart failure after ablation - can't say I really understand all of it but it seems relevant (and known about)
Feel sorry for your horrible experience Michou. Drs, nurses and other medical personal handling your situation should be ashamed as well as representatives of both hospital. Your and Clschoiz experience is saying something very bad about level of medical care at two large hospitals at UK. Hope that it is not the same in whole UK. Let the responsible representant of each place know that their low level of competence is now world known. Greetings and wishes of the best from Sweden. I am both sorry and mad when I am reading how is your situation handled.
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