Just wondered if anyone who comes on ... - Atrial Fibrillati...
Just wondered if anyone who comes on this site is from Lincolnshire? Thanks sann
Hello sann,
Yes - I`m from Louth in NE Lincs & I have suffered with AF for quite a few years now & I was sent home to put my feet up & watch DVDs & wait for the `Grim Reaper` to come a calling..
I was not happy with this advice & I ` logged on` to the internet & looked for centres that were involved in the latest research & found ST. Barts in London were looking for volunteers for a `Clinical Trial` for AF Ablation & I volunteered & was accepted by Prof. Schilling & I have now had 2 ablations & I am back in normal S-R.
I actually go down to London on Friday week for what I hope will be my last Out Patients appointment. I am off all meds. now (Thank goodness) especially that awful Warfarin (Bleeding all over the place . ) I will be 83yrs.old in a couple of months or so.
` oltimer`
Hello,thanks for replying, you seem to have weathered the storm Wei I am pleased for you,must be wonderful off all meds,some of them certainly make you feel horrible,
Sorry about that last post,I was trying to do two things at once and my finger slipped on the wrong key,as I was about to say,please let us know after you have visited your appointment and let us know how you got on.take care Sann
Hi sann ! Well when I was working in South Africa as a cardiac nurse I was particularly upset with a ~Medical Rep who was trying to tell us that the medicine that he was trying to get us to use "HAD NO SIDE EFFECTS. " Well this is absolutely untrue as I know that any medicine that is `effective` has side effects. If it has no side effects - then - to my mind it is not an effective medication . A side effect is an ` extension of the pharmacological action` some people do not seem to suffer the side effects & therefore gain the benefit of the medication without the uncomfortable effects that many other people find intolerable. An example is Beta blockers which slow the heart rate & are often used in patients suffering A.F. One of the side effects is that they also block the Beta receptors in the bronchi which gives rise to broncho spasm & precipitates an `asthma` attack .
Warfarin has been a big `NO , NO for me from day one . but my cardiologist will not use anything else & so I`ve tolerated the frequent ,profuse nose bleeds & occasional serious gastric bleeds (Better since I`ve been on a PPI - `Lansoprazole`.
I am the only person in Lincolnshire to have a `Watchmans` device fitted & it prevents ( or would it be better to say ) Should prevent the occurrence of a stroke & so there is no need for me to take an anticoagulant such as Warfarin which has such terrible side effects for me. I also got fierce `gout` -which is also a side effect of Warfarin & also Lasix which I was also on . Since I am now back in Sinus Rhythm there is no need for this drug either & after telephone conversation with my GP - Warfarin & Lansoprazole & Lasix have been discontinued .
oltimer.
Hi there oil timer,thanks for your post,I too was on Warfarin a month ago but I felt so ill with it I went to gp,but he told me that I had to take it even though it was making me feel so ill,but I stopped it and phoned cardios secretary,and to cut a long story short the cardio phoned back and put me on Phenindione which I have started yesterday,fingers crossed it will be ok.The anticoagulant nurse said she had over 800. People on warfarin singing it praises,think she was a bit off with me when I said it was horrible.Heigh ho and fingers crossed. Sann, take care
Ho Oltimer just thought that I would try and speak with you again,hope that you are keeping well, the last time I spoke I went off warfarin and onto Phenindione well after seeing mt cardio man at Lincoln he has now put me on Pradaxa one of the new anti coags, I have been on this for a month now and it seems to be working ok with hardly any side effects so keeping my fingers crossed. I had thought of seeing an EP privately to see if they can offer anything else as regards to my AF and AF flutters all of which I get every month and makes me feel so ill and debilitating,not sure how to go about it though. hope this hot weather isn't getting you down it's alright in the shade,but then again I suppose it's because I am getting older. Sann
oltimer.
Well done sounds like you did the right thing for your well being.
Hope you get on ok in London let us know.
What about this problem of bleeding how did you cope with that ?
Take care.
Christo.
I am a triply qualified ex-cardiac nurse & I completed 57yrs. of nursing & thought that what the GP was offering was pretty poor reward for the service I had rendered my fellow man , & I told him so & he `wagged his finger at me`.
Anyway - here I am still alive & kicking & I have seen my youngest son graduate from `Uni` .
`Go for clinical trials` & then you either live & are cured or you die - either way it is better than `existing` on tablets with all the side effects to suffer - to me that is not living.
You have the right to a 2nd. opinion - Exercise that right & ask to be admitted to a clinical trial - In that way - If you
die ?? at least you will have contributed to medical research & if the `trial` is successful - not only will you have contributed to the advancement of medical science - " YOU WILL BE CURED!! Yippee !!
oltimer
Sorry Christo !! I didn`t answer your question . Short & brief - I didn`t cope with it . It was incessant - Every time I stooped my nose would pour blood & I had to stuff my nostril with toilet paper & my clothes were ruined. It was due to an old boxing injury when I was in the forces & stopped me entering contests .
The Warfarin made my nose bleed every time I strained - I just stopped taking it & informed my GP that I would have no more INRs done.
I have had a `Watchmans ` device fitted & so this protects me from developing `strokes` & I`m pretty sure that I will be taken off of Warfarin next week when I go to St.Barts.
oltimer
I used to live in Lincoln itself and found the NHS cardiac care lacking. From my first episode in 2009 it was 4 months to see a cardiologist, no medication and no concrete diagnosis. A&E "lost" my ecg which showed me in AF. 4 years later and after numerous episodes I ended up in the county cardiac care ward after twice being admitted via A&E. Was told even then I would need to wait months to see a cardiologist although I could pay £250 and see one tomorrow.
Thankfully I now live in japan and have a cardiologist/electrophysiologist I can see when I want. As often as I want. Consultation fees are affordable, prescritions sting abit but its a damn site better than the nhs.
And I am sorry to say that, a big supporter of the health service but not the governments that have slashed and cut away bits here and there until its not fit for purpose
Hi Sann.
I live near :Lincoln and joined this site a few weeks ago. Up until now only to look and learn.
I was found to have AF by my GP just over a year ago. At first all went well and had a cardioversion at Lincoln April 2013. It failed to fix the AF. I am now having another next week and if that fails will be referred to Nottingham. How long that will take is anybody's guess. At least I'm not on Warforin but Dabigatran and Bisoprolol.
I am just a youth though at 75 so I don't think they will rush
Glad to hear you are all sorted and ready for the next decade. Ray
Hi oltimer, I live in Louth and found your post very uplifting and hopeful. How long did you have to wait for an appointment at Barts ? I'm 82 and was offered an ablation at St Mary's by Prof Peters some years ago after being in persistent AF for a year. He said to try a cardioversion first and put me on Flecanide . I was put on warfarin and had a cardioversion at Grimsby which was successful . The AF broke through about three or four times but seems to have settled down now but I'm having to take Irbesartan for high blood pressure. Not on warfarin now,asprin. Great to hear your good news. Terjo
I can`t remember now Terjo . Dr Chris Cooke at the hospital(Now retired) wanted to keep me on Bisoprolol & Warfarin , Digitalis &,Lasix & I told him that I wanted to see a cardiologist & he wagged his finger at me & said that he would refer me to Dr.Hobson at Castle Hill who would probably do a cardio version & I would be back in AF within 10 days & in this he was right , but Dr.hobson had actually worked with Prof. Schilling at St. Barts . & told me that he was looking for `volunteers` for a trial of Ablation performed by Hansen Robots & I agreed and went down there & was accepted & on the second attempt he has found the area that is shooting off the `false` messages for the atria to contract & has ablated it & it seems to be holding up.
I think Prof. Schilling would accept you despite your age. It`s worth trying. Good luck to you brother.
oltimer.
Hi terjo
Just one comment, you really shouldn't be on aspirin for af as you will see when the latest NICE guidelines come out aspirin is not recommended for af, as Bob says it's as much use as a chocolate fire guard, or a chocolate teapot.
Good luck, but get off the aspirin
Eileen
I live in Nottinghamshire, close to the Lincolnshire border. I elected to go to the Trent Cardiac Centre and have been 100% satisfied with the advice and treatment I received under the care of Dr Arif Ahsan and his team. I have had AF for many years and was actually diagnosed about 8 years ago. I had an ablation last year.
Hi Eileen, when I first went on warfarin about six years ago I ended up in hospital with a life threatening artery bleed where the sac around the liver fills with blood, it was sooo painful . A brilliant visiting professor treated me with vitamin D and numerous painkillers etc and basically saved my life. I came out of hospital after three weeks but it took me years to recover and eventually get sorted. When I had to go on warfarin again before the cardioversion I bought a cougacheck machine and had to test every day. I'd been on 5mgs of warfarin when the bleed happened but found I only needed 1 or 2 a day , it varied . I hated taking the warfarin as it affected my taste and appetite, no medicine fits all people statistics are really only the beginning of the story. Thanks for your interest and keep well. Terry.
I am in South Lincs, close to the Norfolk border.
Hi there we'll at least it is nearer than some of the other people on this site,I live in wainfleet just 4miles from Skegness. I have AF for 5years now, have had a stent and pacemaker as well, just in the process of going on an anti coagulant ,started on warfarin a month ago but made me ill, wellso much about me how are you doing? Sann
Mine was officially diagnosedin 2009, but I know I have had it for a lot longer than that,but it was a problem getting diagnosed as no health professional had caught it on a monitor. I went to Pilgrim Hospital after calling 999 during an episode mainly to get it officially recorded on an ecg, I spent 48 hours there until my heart rhythm returned to normal. I was put on Sotalol and Warfarin back then, and am still taking the same tablets today. I saw Dr Skopal. I never see anyone for this condition now, so I am no longer monitored in any way apart from my inr check which I phone in to the surgery after taking my reading on a coaguchek. I am 59 years old.
Yes, I come from Lincolnshire, but sadly left it in 1964 to go to college in Leeds, and then work in Leicestershire, West Sussex, and Bradford where I've now lived for 40 years. I hope to return to Lincolnshire one day. I always feel I'm home when I cross the county boundary near to Gainsborough, when I visit my sisters in Lincoln. I see Japaholic waited 4 months to see a Cardiologist in Lincolnshire; I waited 10 months in Bradford.
Fortunately due to the local medical practice being taken over by a neighboring medical practice a couple of years ago, my current GP is an expert in the treatment of AF. I've had Paroxysmal AF for about 18 years, diagnosed about 8 or 9 years ago. I didn't go down the ablation route. Flecainide 150mg twice a day and my abstaining from 2 foodstuffs which I think are triggers in my case - coffee and soya - mean I have few episodes of AF - only one this year lasting about 2 hours.
Yes m8 I'm just outside lincoln small village
Hi there oakycoky123 sorry for the delay in reply,what village do you live in,I originally come from Lincoln so I know most villiages around there. Hope that the dreaded AF is keeping at bay i usually get mine between 2 and four weeks,but in the meantime i have a few ectopics.Take care. sann
Help needed from AF ers who are into fitness!
Recovering from Ablation Fact Sheet - Thank you
Thanks for all your support & update from yesterday
Question for anyone who has had OHS please
