Had persistent fast AFib since Nov 23, decided to go private route as my health was deteriorating. Echocardiogram Jan 24 showers severe mitral regurgitation, and ejection fraction 28%. Lots more drugs added to the cocktail and now under the care of both a cardiologist and an Electrophysiologist. Drugs worked well to stabilise me in the meantime.Ablation was booked for 16 March. it went well but I did have a lot of bleeding. Home same day.
5 days later, Friday, some painful swelling on my thigh, both a little bit near the entry point and a fist sized soft lump lower down on inside thigh. Phoned Arrhythmia nurse who said to come is so that she could listen to my blood vessels in the thigh.
Noisy thigh so sent to ultrasound, 3 Dr's turn up so alarm bells start to ring in my head. They could see a pseudoaneurysm and the vascular Dr was talking about admitting me. Eventually decision was made to send me to Interventional Radiology for a ultrasound sound guided thrombin infusion to attempt to clot the balloon like swelling of blood from my femoral artery.
Eventually sent home with instructions to rest for the weekend and come back Monday morning.
My heart felt neglected over the weekend, quick spikes of rapid HR Saturday and Sunday, then Sunday evening into fast AFib and stayed there. I phoned the arrhythmia nurse and asked to come to see her whilst I was at the hospital again.
Had another painful ultrasound guided thrombin infusion and told to come back Tuesday. Went down to cardiology where an ECG agreed with my Fitbit, told to up the Bisoprolol and Amiodarone added. Monday evening heart got to 190, then I went to bed, as I settled down some huge thumps as I fell asleep exhausted.
Tuesday woke in NSR (yippee), Arrhythmia advice was not to start the Amiodarone, back off to hospital for another ultrasound, pseudoaneurysm still active, vascular team came to do another ultrasound,put flat on back, nil by mouth for immediate admission and probable surgery. Sent for a CT scan which showed an arteriovenous fistula (where the vein and artery heal together bypassing the capillaries in the lower leg) hiding behind the pseudoaneurysm. It seems that my femoral artery was punctured during the catheter insertion and that the insertion point was below the branch where the artery was too narrow. This was done by a EP consultant. Private care in NHS hospital at weekend.
Sent to ward still on back and nil by mouth. Vascular Dr came to see me 8pm said not operating Tues night so could get up and eat. Had missed all the food so husband and I headed down to the cafe. But would be nil by mouth from midnight for surgery Wednesday. eventually settled down to rest, had been dozing for 15 mins when a porter arrived to take me to a different ward. Had to gather up my belongings, it was like Michael MacIntyre's midnight game show, woke the whole ward as they turned the lights on and made quite a bit of noise. Off to a vascular ward.
I got lucky and had a side room. Eventually went to theatre Wednesday afternoon. Having spent the morning on IV drip as I was dehydrated after an unnecessary day nil by mouth. Cut right up in groin, artery and vein repaired and patched with bovine vein, all stitched up and horrible pain on recovery. Lots of fentanyl needed. Back on ward after 2.5 hrs surgery and 2 hrs recovery.
Unable to eat due to dry mouth but managed lots of drinks and eventually yoghurt and banana. Still flat on back on a pulsating air mattress. My head was raised through the morning and a lovely HCA got me to my feet lunchtime Thursday. Catheter and wound drain in place. Consultant was pleased with my progress and said to remove all the plumbing!
Discharge was brought forward to Fri, I had to vacate my lovely room but staff understood my need to reduce stress due to the ablation and found a space in a storage room for my bed, no window and full of cupboards of stuff but relatively quiet. Ep consultant came to visit with apologies, spent quite a while with me. He's pretty amazed that my heart was still doing well, my resting HR is low 50's and my BP had returned to low end of normal.bim seeing him for follow up late April. No follow up for the vascular stuff at the moment but may get an appointment through the post. My discharge notes are missing all the outpatient stuff of the first 3 days so hopefully that will catch up too.
A gold star and Easter eggs to anyone who has got to the end of this! Has anyone ever experienced such bad. Luckily?
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AmandaLouise77
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Oh Amanda what a dreadful time you've had, my heart goes out to you. You don't do anything by half do you? It's very unusual to have all the problems that you've had to put up with after your ablation.
Is anything going to be done about your mitral regurgitation and low ejection fraction.
They're hoping that everything will settle down if the AFib is controlled. The mitral valve is stretched and floppy but no damage luckily. It 'should' tighten up given time and the EF should improve. I certainly feel better heart wise that I did. The leg is sore battered and bruised though. prior to AFib I was 62, a bit curvy but not hugely so and fit and well working on our farm walking over 5 miles a day. I'm not very good at resting!
I found that in the second week after my ablations (3) I could feel full of life and walk somewhere then suddenly become overly tired and unable to walk another step. I know you don't like to sit still but please don't try to do too much and allow the inside of your heart to heal.
I'm just starting week 3 post ablation, have been very good all morning, just changed the dressing on the groin incision. All clean, dry and neat. No wonder it's sore! 15/20 cm long! Have just persuaded the OH to take me out for a drive later. We live near the coast and I'm missing the sea. Just to sit in a car park for 10 mins possibly with an ice cream, will help.
Sounds as though you were unlucky with the original mistake but fortunate that your arrythmia nurse was on their game and got you back in.
The rest sounds like normal NHS to & froing fire fighting.
Thankfully you are now home and begin with day 1 of recovery so hope all remains quiet for you now so you have a peaceful recovery.
Best wishes for long lasting NSR.
PS - I awoke from my first ablation by nurse bouncing on my chest doing CPR so sometimes things do go wrong but the important thing to hold onto is that when things went wrong it was dealt with.
Yes, that's what I'm doing. The Arrhythmia nurse had already spoken to the consultant EP before I arrived and plan was ultrasound sound if bruit/noise at puncture point. The EP gave a quick apology on Friday when it looked like outpatient appointments may deal with the problem but I have a lengthy visit on Thurs evening and a good long chat where he apologised repeatedly. I like him, he's actually a really nice man. I don't want to fall out with him, I need him for future care. I'm pretty sure that going forward I'll have the best of everything. Statistically I've had problems that are 1 in 1000 or similar. Someone old and frail with these problems would be hugely compromised. I've done my bit for humanity now and am being assertive about my care. I'm celebrating being free by sitting outside a National Trust cafe looking at a beautiful view out to sea. Just 10 mins from my house. Yes I'd rather be on the beach with my dogs but I'll get to do that again soon.
Sounds like an absolute nightmare and really serious complications. I have had one failed ablation and refused further. I wish you a quick return to health..........and I would love an Easter egg!!!
Horrendous story - so sorry. I did laugh at your response above though - done your bit for humanity! Take it really easy and get the OH doing his bit. Hopefully you'll soon be up for walking on the beach, but no lifting pushing or hauling for around 12 weeks.
And to think that soon enough, you will be looking back on this from a position of good health, AF and pain free, with no more swellings, bruising, lumps and bumps here and there, and telling of this as one of life's little adventures!
Such an ordeal, makes my ablation seem like a trip to the supermarket! My heart goes out to you. May your positive mind and appreciation of what went well, and the beauty of the sea landscape, speed your healing and keep you in NSR for years to come.
Oh what a dreadful time you’ve had. Hopefully now your ongoing recovery will go well for you. Trust you enjoyed that ice cream - you certainly deserved a double one!
I shared carrot cake and brownie with my husband. Fancied a sandwich too but they sold the last one to the person in front in the very long queue. (I was sitting at a table outside, waiting, waiting with my bad leg up) Lovely unhealthy late lunch, crisps, cake and coffee (decaff of course)
To add insult to injury, the back of my hand, where the operation cannula was, started to swell and turn blue yesterday evening. I applied pressure and had a quick WhatsApp consultation with my Dr daughter. Applied a pressure pad and bandage, which she assured me is all they'd do in A&E initially, and controlled the bleed under the skin. After all what's another bruise between blood thinners friends?
My blood pressure is normal/ low, my resting heart rate has gone down to 48bpm. Bisoprolol has been dropped from 5 to 2.5, 2 weeks ago. Maybe it needs to drop again. I'll monitor everything and call Arrhythmia nurse if I'm worried. I'm very lucky to have a medic on call 24/7, even though she's 4 hrs away and I haven't seen her since Xmas thanks to the AFib.
Well I suppose all one can say is thank goodness for modern medicine but you’ve certainly been through it and you’ve survived to tell the tale! Keep on improving.
Goodness me! I am amazed your heart is still doing well after all that stress. Hopefully that augurs well for the continued recovery of your poor heart. Let's hope that the rest of your recovery is simple and easy.
My heart is being good apart from one crazy AFib episode that was hospital related a week ago, over 24hrs went up to 190 BPM, then as I went to bed, a couple of huge thumps, fell asleep exhausted (didn't actually care. If I died at that point) woke in normal rhythm, feeling great, to find that the leg bleed hadn't clotted and it was all pretty scary and serious.
Aww Bless you. I don't know what I would have done in your situation - probably asked for the priest! You have really had more than your fair share of problems with this. Take it easy and I hope you have a complete and full recovery.
Thank you for sharing your story. To say you've been through a lot is an understatement. I hope it smooth sailing for you now.
Good luck.
PS I know stories like this are the exception but they continue to make medication my preferred option. Obviously that will change if/when medications no longer provide me with a reasonable quality of life - or if a better option comes along.
The medication was really affecting me, I'm 62 so hopefully a few years left on the clock. I also live a very active lifestyle and the meds were preventing that. The AFib was rapidly causing heart failure, so stuck between a rock and a hard place really.
oh dear I’m very sorry to hear of your experience. So frightening for you. Onwards and upwards as it all sounds good now 🤞
I’m sitting here in fast afib despite having a pacemaker inserted last September when all was fine until I had covid then it settled down. I had a tickle in my throat and kept coughing again over Easter and now back in fast afib. Impossible to get hold of anyone so until I read your experience I was feeling sorry for myself!!!!!
Can I ask what they said about your ejection fraction of 28% as my husband’s is that snd his consultant said he was in heart failure because of that figure. He seems very frail and quite weak. They just upped his tablets!
They think that the AFib really upset my heart, the mitral valve stretched and went floppy, but doesn't appear to be otherwise damaged or diseased. Controlling the AFib first with drugs and now with ablation will allow the heart to calm down and because it's a muscle it should repair itself without surgical help. Fingers crossed for some good luck. I think that I'm due some.Sorry to o hear that you're not feeling great. I hope that things improve soon.
Not to throw a spanner in the works but they thought that with mine and the atrium didn't shrink back. I'm now on the list for valve repair surgery. Make sure they keep a close eye on you as it was almost 12 months before they decided there was a problem with my floppy valve.
Thanks, it's the first question that I keep asking, I haven't gone through all this to just accept the heart failure. I have both an electrophysiologist(for the electrical stuff) and a cardiologist for the plumbing. Luckily they are colleagues and work very closely together. They both get copied in to all communication. Your experience shows me that keeping everyone on board is the way forward.
My team have been great, in the main, but an issue with the valve was picked up during the ablation but it appears that it worsened quicker than they may have thought and that was discovered 8 months later when they offered me a Hybrid Convergent Ablation and did a scan.Sounds like they will be keeping a close eye on you but doesn't hurt to remind them. 😊
My EP was so apologetic (remember, the ablation was private care, he made an error, vascular team were very definite about that) that I'm sure that I'll be getting gold standard, diamond encrusted care from now on. He's also one of my NHS team.
I had to have a vascular ultrasound a week after my ablation as the bruising was from groin to toes but fortunately, whatever vessel had leaked, had sorted itself out. Arnica cream was my new best friend for the bruising.So sorry you had all that to contend with but fingers crossed, you're on your way to recovery now. 😊
Id been using arnica in all its forms both preloading before the ablation and since, I'm also applying ice. Been told to watch out for oedema now and keep my feet up.
Hi Amanda what a nightmare I do hope you feel better soon. I had an ablation 2 years ago (didn't work) but none of the trauma you obviously had. I'm still having afib issues and waiting to see what to do next. I'm on dronedarone which also doesn't help.I cant believe what you've had to contend with and send best wishes for everything to ease.
Oh my goodness what awful experiences. You are a warrior! Hope you get much better soon. ♥️♥️Here's me whining about every little pain/problem following my ablation on the 26th March which pales into insignificance
It's different for everyone, we've all had different life experiences which lead us to react differently to things, you're dealing with lots of stuff that's been dragging you down but you're strong and looking after yourself now. Please keep posting and looking for help xx
I'm getting better slowly, we live near the sea, just been out for a lovely pub lunch, a very short walk down to the beach to throw some stones in and a trip to the GP on the way back to collect a prescription! I will get back to my normal!
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