Thank you to all who responded regarding sleep apnea.very helpful. Next query. Hubby had a failed ablation in May. Six hours in the lab. Sedation did not work at all. Waited 12 weeks for next attempt under general anaesthetic. Procedure did not go ahead due to a clot in his "appendage". Looked this up. Seems a normal occurrence. Worrying that the TOE (camera down throat) was not carried out on 1st ablation as this is clearly a huge risk. Risky enough not to proceed this 2nd time. At this point sleep apnea has been raised by the anesthetist (extremely) nice man who explained this. So 8 weeks on another blood thinner (pradaxa)and new arrythmia drug (digoxin) then another app for TOE to check if clot has gone. If it has another wait for 3rd attempted ablation. Meanwhile Urology are pushing for removal of kidney but now saying won't perform while on blood thinners. Really fed up. Can't seem to have an actual sit down together to discuss this it's all done over the phone or just before procedure. Given that everything takes sooooooo long to organise we feel very frustrated. Urology say removal can't wait but his heart needs to have better EF than 36% but EP says he can't guarantee that! We have asked about pacemaker so many times and always rebuffed as not yet/not at the moment/too soon/too young. What are people's experiences with this?
blood clot in appendage.: Thank you... - Atrial Fibrillati...
blood clot in appendage.
How long was he on anticoagulants prior to the ablation? It is normal to be anticoagulated for sometime prior to the procedure for just that reason.
2 years. They only told him to not take it on the morning of ablation!
That would be normal advice. I think Bob was advising that if someone has just started anticoagulants you may have to wait a couple of weeks but that obviously doesn’t apply to you.
Hi - having to manage several conditions myself I can empathise with your frustrations. Cardiac and renal are probably the worst two combination of conditions to manage.
May I suggest that you ask your cardiologist/EP (in writing) to talk to your urologist to decide what to prioritise what is most important and ask them to come up with a care plan - urgently? Contact your GP and ask them to also chase both specialities. Heart normally trumps anything else.
With a low EF fraction I would imagine (not medically trained so shooting in the dark here) the anaethetist would have concerns about a GA for both procedures so maybe see if you could talk to the anaethetist as sounds as though they were very helpful and both specialities would need to anaesthesia to be ok to go ahead with their procedure, they may be able to advise you as to next step?
Pacemaker - I had a pacemaker inserted in preparation for a AV node ablation and found huge improvement and therefore did not need or go ahead with the AV node ablation. My QOL has been improved but my EF fraction was normal to begin with and that may be the deciding factor as to what treatment would have most benefit. Mine was given to prevent heart failure aged 67 but my understanding is that Pacemaker and AV node ablation is normally advised for uncontrolled, symptomatic AF when other treatments are not effective. It could be that age maybe a factor as they don’t like giving pacemakers to younger people ie: less than 65 because you would need multiple replacement batteries. Maybe a seek a second opinion?
Best wishes and hope you are able to move forward with something soon.
Thank you that's very helpful. I feel that cardiology are now saying that he had GA without any concerns. Ok that's great but having a clot in your heart is very concerning. Urology won't operate if on thinners, but say removal can't wait long term. Stuck between a rock and a hard place. He is only 57 and 4 years diagnosed with AF. But now afib aflutter and Tachycardia. We just want to sell up and go travelling and enjoy what time we have left and get out of the ratrace tbh. He has been in heart failure for 4 years but feel we are passed from pillar to post. His father has a pacemaker fitted 7 years ago but he is almost 80. All this time and money on drugs and failed procedures surely a pacemaker would be more economical in the end?
Re Pacemaker - I would have thought so but I think I only got the RST - which is the PM that is recommended for HF and is about x6 the cost of a 2 lead PM which is given for bradycardia et because all drug options were contraindicated for me due to my other condition. But I would push for that. My EF was around 50%.
Also, he has been in constant AF for 3 months since 1st ablation failed. Amiadarone didn't work. Is that uncontrolled symptomatic AF? Psoriasis on hands and feet caused by the stress of it all. Very unhappy man.
My symptoms were complex - very high HR, long episodes (6hrs +) that mostly self converted but were heading toward persistent AF 3-4 times a week, very low BP with syncope and it worsened my other condition to such an extent that I couldn’t get out of bed a lot of the time. I was on a downward spiral. My EP was certain I was heading toward Heart Failure but was of the opinion why wait?
I still have very occasional AF but I hardly know about it now because my pulse is controlled. BP is steady at about 110-120 which is the highest it’s ever been in my lifetime and no syncope or pre-syncope so it really was the magic bullet for me but my EP was on my side and had to fight for the funding to get it passed for which I will be forever very grateful.
Is there a possibility of getting a private consultation?
I have thought of private but don't know who to go to.
Depends where in the UK you live. You are best going to one of the regional centres of excellence which are in or near major cities - London, Bristol, Liverpool, Manchester etc. put up a post asking for suggestions on this forum near to where you live. Have to say outside of England it’s much harder to find someone and options are fewer.
I raised this with GP was told he would have to start the process from scratch if we went private or changed hospital. I've now contacted PALS about his treatment and our concerns. See what comes of that!
My experience is that an EF below 35 triggers the pacemaker option. It may be that the medics will wait and see if his EF improves a bit. Following heart failure, my EF was 9 at one point but improved over time, last measured at 46. Around 60 is 'normal' as the heart isn't the most efficient piece of engineering.
I don't know if this is of use but... I didn't know what the EF measure was, so googled it and came across some helpful info on the American Heart Association about ways to improve your EF. Obviously might not be suitable yet, but perhaps worth knowing for the future.
Oh my. What an ordeal you are going through. These Drs should have to be made to switch places with all of us. Maybe then they would get things done. Prayers being sent your way that you get everything resolved. 🙏🙏
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