I am here to update my life with Afib and my 3rd ablation,,,,,
I have had 3 ablations in 2 month and dont i know it am wiped out last one
5 days ago. Where my heart was pearced and i needed a drain worse few days of my life after the 2nd ablation i swaped Afib for Aflutter never had Aflutter before. so i ended up in A&E I cant ever remember how many times ive been to hospital.. the last ablation failed yet again and yesterday laying in bed to rest my heart went back into Arial Flutter and i am so heart broken mentally and physically. I am grown Man of 46 and ive been in tears most of the day I just dont know what to do anymore feeling my life ended. I am now on more drugs then before blood thiners i am on Amiodarone that scares the life out of me i am on iron tablets because of the blood i lost. I cant do hospitals anymore, i wish i had never had an ablation but people who are waiting for ablations and read this please please dont go off my story xx people of this forums i am lost trully lost :-(
My heart was aching for you as I read your story. I know just how you feel. I have had 4 ablations and remain in paroxsysmal Aflutter still. Believe me, I feel your frustration.
My last ablation was over a year ago and I'd like to share my story with you to perhaps give you a little encouragement. First of all, you're only 46 so you are still young (I am 60). Please Google Afib and Aflutter and you will see that Aflutter is better than AFib, so the ablations accomplished that much. Now you have to start being proactive and optimistic regarding your health. Otherwise your choice is to continue to sink into depression and that's never a good idea! I have been a life long athlete, right up until my Afib started. I too felt like my life had ended. One loses so much stamina and muscle mass after a long period of illness and inactivity. With the encouragement of my doctor, I started very, very slowly walking a few minutes, 3 days a week. Gradually, I increased my exercise routine....and I mean really, really gradually. It was a period of over a year. I'm finally up to a brisk 30 walk a day, back to teaching and practicing yoga, and I've even gotten back into rock climbing. Nowhere near the level where I was when this started but, I can see that I have been getting more adept with practice. The key is to set small goals and go after them, one small step at a time.
As a result of this, I feel a million times better. I hope I can encourage you to try this path because you CAN get your life back!
After AFib in 2013 I have had 4 ablations. After each ablation I was completely wiped out for weeks. I had my 4th ablation in July. I don't know yet what the long term outcome will be but I must tell you that I am feeling better than I've felt since all this started.
Thinking of you and hoping you'll start to improve very soon. Sheila
Sorry doesn't even come near to express how I feel for you.Having waited for your ablations and now to feel even worse than when you started out on this dreadful AF journey is soul destroying. I think most on this site share the feeling that this dreadful condition receives very little attention in the media and we get little sympathy from the doctors who just don't realise both the physical and psychological effects it has on you. I had to go for a blood test last week and I too am building up a phobia about just going there.
Do please, please, persevere and once you feel up to it (which you will) find out what next.
Ensure that what you're offered is the recommended treatment regardless of the waiting list or 'cost to the NHS' and keep your doctor in the picture.
My friend had 2 ablations and in the end resorted to a pacemaker - it does all depend on the patient.
I can't have an ablation because the root cause didn't highlight exactly where my problem was during the EP study. Unfortunately I'm starting to have symptoms again this week but am not sure whether it is because of the extremely hot weather we've been having in the south or what.
But do take care, take it easy and then get sorted.
I am so sorry for what you are going through. You are not alone. It is such a blow to have the ablation fail and the perforation on top of that. I am 50 and have had flutter for a year with 2 failed ablations and a 3rd scheduled in 2 more weeks. Your experience is in my mind and I will hope for your rapid recovery. Your physical and mental health are very important. Please care for youself and try to keep depression at bey. Keep reaching out. This community is here and will listen.
I am sure that at THIS time you are at your loswest ebb BUT PLEASE do not give up your positive attitude. I beat stage 4 Cancer 16 years ago ALONE with prayer, and treatment and SHEER "It is NOT going to gat me" determinayion...and Viloila here I am at age 75 ( WITH this awful but survivable Afib...WE CAN DO IT . You are only 46 so your immune system will heal but WITH a positive oitlook Hon...Thats the secret.
Read all the suppsrtive remarks from us fellow duffers and gain strength from yjeir vines THAT is why w are here .
I send you HYGS LOTS of prayers and Hoping that your next post is a better one ..Yes you are in a better state than before althogh you may not think so right now.Do you have friends and family to dupport you ? I did not but I did have the man upstairs with the help of my guardian angels I will ask them to pay you a visit ..when you feel a warm flutter on your Shoulder as well as maybe your heart..they are ,just "fixing it : and guiding you
I am so sorry, you truly are having a nightmare time. I have af, I take amiodarone, one day, since January.Why are you so worried about this drug ? Yes I have water retention but I have very few rattles episodes now and potter about happily with a blank mind as I NEVER READ THE LEAFLETS (my partner does and will notice anything odd) I was too cowardly to have the ablation. Cheer up, you are still here and have all your limbs ! I thought you could get counciling (?) in UK ? should think you will qualify. DONT forget the magnesium, I think maybe this is why I am doing better . GOOD LUCK STEVEN.
Hi Steven, very sorry to hear of your predicament. I had my first Ablation for PAF at the end of May. I was certainly washed out afterwards, but that is normal. What is also common is for the AF to take some time to improve. My Specialist advised that I stayed on the medication and was not prepared to consider the procedure had worked for at least 3 months! I am still improving after 4 and I am on significantly reduced medication. So, the message is be positive and hang in there. I would suggest you try to change your specialist, my lay opinion is that 3 Ablations in 2 months has not got any recovery time built in. As patients we can now elect to go anywhere we like. Ask your GP to write to your Clinical Commissioning Group, or you could do it yourself, to get an independent second opinion. Above all give yourself time to recover and improve. Tha advice from one of the other replies, to expand what you can do in small steps is really worth following. Wishing you all the best. (Malex 57)
Sorry to see you're feeling so low at the moment. Hang in there, things will get better.
Afib is a journey, admittedly you're on a bit of a bumpy road at the moment.
I've just come Amioderone after being on it for six months. Yes it has potentially nasty side effects associated with long term use but it is a strong antiarrythmia and should help keep you in rhythm .
Afib begets afib, and being in rhythm helps you to stay in rhythm. Low dose, short term Amioderone is not so scary if you do the research. Chances of complications are small in low dose usage.
being on Amioderone after my second cardioversion (only stayed in for a few days after my first) dug me out of the hole that I was in and increased my ejection fraction from 25 to 58% in 4 months.
I've been put on Sotolol now , so am hoping things continue as they have.
I also found out that I had severe sleep apnea and addressed this after finding out how it can impact on one's heart.
I hope Amioderone does for you what it has done for me. I feel it has been well worth risking those potentially nasty side effects.
I would like to thank every last one of you for the support and stories about your life it mean so much to me that i am not alone. I feel a little better today am trying to be strong its very hard i know ive been through alot i just hope they can help mei think they are referring me to a cardiologist in liverpool who knows this sort of condition !
HEYYYY Steven I am FROM Liverpool and THEY are the most fun folk (Most of us including my brother are professional comedians ) Those who are not professional are STILL Comedians ....I spent 6 months there in Clatterbridge hospital (a Cancer Hospital adn the sense of Humor is what kept us ALL alive ..so I wish yuo HEALTH and FUN and they have the "BESEST" doctors and Nurses AND GodBless the McMillian nurses ..
Stay strong... we will be thinking about you in MUCH better hands ,,YES push for an early appointment ..the squeaky wheel gets the oil
Blessings ....I KNOW you will be in good hands ,,,
I went to Liverpool once for a weekend. Do none of the women there own a watch? As I walked down Lime Street practically every one asked me if I had the time.
I too had a simular experience & almost lost my life!, i am feeling exactly the same ,very very depressed ,Please Read On.
Warning !!
To anyone with AF who is thinking of having ablation surgery
I have some very important info' for this group. I am an AF sufferer since 2008.in 2010 i had my first catheter ablation the new "Arctic front Ablation" [cryo/freezing method] it worked for around 18months but then the AF returned., i put up with it for a couple of years, but I was then recommended another ablation called Point to Point catheter ablation which is the usual or common ablation technique, which burns the problem areas. This was supposed to be "very Low risk minimal invasion Day surgery" with few complications & i was told nothing to worry about we can deal with the complications should any arise. So i went in for the surgery a few weeks ago. During the ablation the procedure the surgeon pierced a hole in the wall of my heart & he could not stop the bleeding, i was rushed to another theatre [unconcious] where another team had to open my chest, Put me on a bypass machine to enable them to repair the hole & stop the bleeding, i was in theartre a total of around 7 hours, i had to have a transfusion, i was then hept in a comma & put on a life suppoprt machine for 24 hours, following that i was in intensive care for a further 48 hours. several weeks on I am still recovering from this Nightmare.. Also whilst i was in hospital i spoke to another AF ablation patient who had suffered the same heart puncture during the ablation, but he was a bit luckier than me, they managed to stop his bleed without openenig his chest. I have had several different operations over the years & i have never had an issue with bleeding before...
i was not warned about this fatal risk beforehand by the consultant !!!
My advice to anyone with AF thinking of having an ablation,THINK VERY CAREFULLY, IT IS A DANGEROUS PROCEDURE!! I almost lost my life
Sorry to hear about your experience. It sounds like you and other patients have been subjected to a terrible experience. Did you complain or have the opportunity to investigate how many other people this has happened to where you had this done, as it seems to me they either need more training or need to admit they're not up to the job. All patients should be advised of the risks of a procedure, so if you feel up to it I think it would be wise to contact the complaints department and tell them that this is not happening. I think this should have been reported as a Serious Untoward Incident and again I think it would be helpful to contact the CCG to tell them about your experience so that they can make sure the Trust are being honest about what's going on. We can't name specific Trusts on this site, but I always think it's worth complaining, being aware that it could save yourself or someone close to you a similar experience (or their lives).
I have put a complaint in via PALS, it takes aprox' 25 days to get a reply, but i will take it much further if i have to. Patients are not given enough information regarding "Risk"..This complication is far more common than they make out, but i am guessing that if they told every patient the real risk that they would not have anyone to practice on.
It's the Clinical Commissioning Group who give the hospitals the funding to pay for this work. It might also be useful to let the Care Quality Commission know about your experiences as well, if you feel up to it.
The British Heart Foundation might have statistics on the complications and success of this procedure - I'll see if I can find anything out.