I went to the Brompton on 30th May for a routine heart ablation which sadly went wrong, I was not told I could have a bleed in the heart and this happened thankfully 36 hours after the procedure I was unwell and due to drug allergies I was still in hospital trailing Ivabradine therefore thankfully here to tell my tale. Had a cardiac arrest and then due to the tamponade had open heart surgery on the ward , 10 days in hospital and still getting over the trauma, I found the hospital not very helpful, did not get an OT discharge and prognosis and still waiting for the follow up. It was a massive shock to myself and the family what happened and rather scary too. I have had an echo and halter and waiting to hear if the operation was successful to stop the arrhythmia but think the original ablation worked. The consultant I am under is not very forthcoming with information
Mental health tips please: I went to... - British Heart Fou...
Mental health tips please
How absolutely awful for you. I've not heard of anything on this scale. At the Brompton as well.
You should have been warned of this happening and signed a document to say you understood the risks involved .
In your situation I would consider making a formal complaint.
I have made a complaint as was not told that was risk but they said as it is so rare they dont. They have said it has not happened for years but that sadly did not help me but then again as I had stayed in hospital I survived
I've had 5 ablations and as far as I can remember this risk was always brought to my attention. Similarly the risk of Death (😱) was brought to my attention before my very many cardioversions even though the risk was very rare indeed.
The brompton have not been happy as the cardiologist did not see or speak to me in 2 years before the procedure ad they assumed I had been advised before I went, I did sign a consent form but not been able to get hold of a copy as yet as the local hospital I was aware of the bad groin bleed I had but not the risk of arrest. I am pleased yours have gone well I assume I must have just bee really unlucky sadly. I find dealing with 2 hospital trusts really hard work as not speaking with eachother. Hoping to hear that the Echo and Holter are OK and then will relax and recuperate
That is outrageous, no matter how little the risk, you should have been made aware. You need to write a formal complaint.
For any future use, screen shot the form with phone
I had an ablation end of February, Private as I’m still waiting Andy information of an appointment since before Christmas on NHS. I was made aware of possible problems
Thanks, it was suggested to me to complain by the ablation lead doctor as they were shocked, I waited 2.5 years and no follow up in between so they assumed I had had the pros and cons explained to me before I arrived. I am waiting for a copy of the consent form but was told I was not warned that I may need to be resuscitated as it is such a rare complication. I actually wish I had not had it done now but thats because i am mentally low and was not prepared for what could happen but then I am still here thanks to the surgeons at the Brompton. I made a complaint but dont expect much back from it.
What a hard time you have had , but you should feel proud of yourself for getting through it , and feeling strong enough to begin with a complaint.It's really understandable that you are feeling anxious and mentally fragile , especially as you are still waiting for the all clear.
One thing I would suggest as the most rapid support you can get is to be honest with your family and friends about how this experience is making you feel at the moment. Speak face to face with them or phone rather than texting.
Ask if people could spend a bit of time with you and keep you company, or just have a chat with you about anything you enjoy together rather than just talking about the heart issue to help you feel a bit more positive and keep your mind off things.
You should also ring the cardiac unit or local psychiatric services to explain the situation and ask for some therapy or counselling suitable for someone whom has had this sort of medical trauma to help you get your confidence back. There should be something. The BHF helpline should also be able to advise you on this.
Be patient with yourself and kind to yourself. You need time to heal physically and when you know what is going on there it will also help you to feel more calm and build up your confidence again. When you do start to do more things or try some exercise , really celebrate every little step . On bad days remind yourself of the good days and what you've already achieved so far. Take things slow and steady and you will feel more confident with each step.
If you feel bad , post here , we will always be here to talk and understand that you can feel like this, take care , Bee
Thank your for your comment, I am trying all the things you mentioned and did ring NHF and they said about this chat group. The Brompton have now offered mental health assistance, have my 2nd one on the 9th via video. This has been done from a follow up from the stay in ICU and hopefully it will help. They said 6-9 months recovery which I thought would be less but can understand now why it is a long process. Will be going to my 5th cardio rehab today, taking it slowly but sure it will help. My mum and Son have been amazing and friends too. Your post has been very uplifting thank you.
On the positive side the matron I have dealt with at the Brompton has assured me they will tighten up discharge polices and that will help others.
I think it has been more of a shock as you know things can go wrong but you do not think it will happy to you.
I had a similar experience two years ago at the Brompton. Six hours after the ablation, when I was recovering back on the ward, my heart stopped twice before a drain was inserted in my chest to relieve the pressure. I had been made aware before the op that there was a 1/1000 chance of complications and I had signed to accept that risk. It took me several months to physically recover from the total experience and mentally I still suffer from occasional flashbacks. After the event, I was also told that complications for that particular procedure are extremely rare. Thankfully the results of the ablation have been positive and honestly, utterly life changing for me. I feel so grateful for what the Brompton have achieved for me that I personally don't have the inclination to complain. If I needed to have another ablation, I would happily put myself back in the Brompton's hands, as I can't imagine that I would receive better treatment or better odds elsewhere.
Alot depends on the operator as well as the institution.
Oh I am so sorry ,what a dreadful shock!I recently had an ablation at the Brompton .I dont know yet if it was successful. The whole procedure was done so well and positively , I did get all the risks spelt out before the procedure which was terrifying , I would rather have not known , but reading your experience , it was necessary and it sounds like you were not properly informed the risks, even though ,to the Medics, its a routine procedure.
All advice I got whilst there was actually so contradictory from nurses as to recovery. and once I left ,no contact. I actually feel stressed to have had no communication as to how to proceed,recovery etc.How are we meant to feel ? I do not want to damage what they did.
Anyway ..GOOD LUCK in your recovery !! Maybe it was something waiting to happen ? In which case ,thank goodness you were there.
All this doesn't put the Brompton in a very good light.
I hate to be critical of the medics themselves. I do think they are amazing and did an incredible job , the risk of what they do is extraordinary , they are so very skilled. It's really just the follow up care. Possibly they have to go straight to next patient , their work is endless. Maybe after care important to give us confidence? It is an ordeal for us.
After care & awareness is vitally important.
To those of us having an ablation, it IS a big deal even though it may not come across as such to some ward staff. I've had 5 ablations , all performed by same excellent EP. For the first 3 an overnight stay was the norm but now they are done mainly as day cases. I'm not sure that this is a good idea but saves alot of money......
I am sorry to see your situation, very similar, the reason I complained was the post surgery issues in particular as discharged on a Sunday without an OT or Physio discharge and was very much left in the dark, in a good way they left a couple of stiches in the first drain. The Brompton have now offered mental health assistance, have my 2nd one on the 9th via video.
In the Brompton's defence the hospital I was not given any preparation prior to the procedure from the local hospital and the team were not happy. I thankfully had a bad groin bleed so stayed in Thursday night and Friday night was due to stay anyway as trailing a heart medication. Then had the arrest and they realised what had happened, therefore the big surgery. as another comment it was such a slim chance of a problem and thankfully I was still there as would not have been so lucky if had been at home.
My mental health after 4 months is the issue as well as discomfort but I did survive.
I am hoping to hear from my consultant as to the echo and Holter results and then I will be able to relax I hope.
Good luck with your results and wish you all the best
I’m sorry you have had such a traumatic experience. I am just recovering from an ablation at Hammersmith Hospital. I’ve suffered with health anxiety around my SVT for many years and self referred online to NHS Talking Therapies who signed me up for a CBT based mindfulness course. It has helped me cope so might be something you could look into. Wishing you all the best.
Thank you, I did an assement with them a couple of weeks ago and have offered a course but said upto 26 weeks waiting list, the Brompton ICU team are giving me 4, one every 4 weeks so that may help tide me over until then, hope your procedure was a great success.
I’m glad you are getting some support. Unfortunately my ablation wasn’t successful as they could still trigger the arrhythmia afterwards and then found another area too near the AV node to ablate without risk of a pacemaker. I did respond well to Flecainide so going to have a CT scan to see if I can take it.
Oh my word what a dreadful experience for you and your family. I had open heart surgery at the Brompton 5 years ago and was pleased with all the medical help I received. I am horrified to read your story. I do wish there was some sort of mental help line patients could access post op through the hospital. Not all the problems ex patients struggle with are medical. I think of my feelings afterwards as coping with PTSD - and it is a bit. We may not have left the country but in some ways we too have been to war and now we’re home we have to learn to adapt. I’m so sorry you had to go through this and truly hope things get much better for you now. Best wishes. Sue 🙏
Thanks Sue, after 3 months of no assistance the ICU team have been really help and have said that the PTSD is an issue and offered an assessment and start therapy on the 9th. They have said that as it was not an elective surgery and the trauma around the whole thing that it will take 6-9 months physically and upto 2 years mentally but this was ot said while I was at the Brompton. It s a shame all this mess happened but if I had not stayed there it would have been a different story due to the clotted blood that had to be removed. S am thankful that it was when still in hospital. I do feel the aftercare service has not been what i had expected but I assume its like a conveyer belt
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