Hi everyone, I poisted a wek or so ago about coming of warfarin as I have no concrete proof that I have AF. Saw Dr and she could not find anything on her computer, with details from hospitals tests etc that suggest I have AF. Aslo she could not understand why they stopped my Felpodine blood pressure tablet and put me on ramipril, half the dosage I was on. Now my blood pressure is high and she has put me back on it. She informed me to get a second opinion I would have to wait on NHS for 18 months, but private I will wait two/three weeks and have to pay. This is all taking place with a cardiologist consultant/surgeon, in the hospital who told me I had Af and put me on warfarin. My Dr. suggested that I stay on it until such time I have diagnosis from hospital. My concern is will i see the same consultant whom I saw before and now have to pay for. Any suggestions as what to do?
NHS and Private consultation - Atrial Fibrillati...
NHS and Private consultation
I know it goes against the grain because it did with me but I would stay on warfarin and pay to see an E.P. privately to find out exactly what is what. I rang the spire hospital in cardiff and booked with Dr. Peter O Callaghan as he is the main man there ( since you are in same area as me). He was keen not to charge me for extras unnecessarily but it would help if your G.P. could make sure your test results are readily accessible so that they don't have to be repeated. I made the appointment myself then asked my G.P. to refer me and he was fine with that. For my I fist consultation and E.c.g. it was about £250. At least this way you will get to a definite answer much quicker but you really do need to check that that initial e.c.g. is to hand as that will clarify things considerably. If that does clearly show that you were in A.F. you may not need the second opinion although it would be better to be under the care of an E.P. than a general consultant. Hope this helps a bit. X
If you are paying, you can surely choose who to see.
Sound advice there.
Firstly, yes I would stay on Warfarin until you have had further tests.
Secondly, you need to have an event monitor so that if you have AF it can be captured ( this is an ECG over 5-7 days.
Thirdly, you shouldn't have to go privately- 18 months is far too long to wait for appointments- tell your GP you want to have an event monitor and an appointment with the local Cardiologist ASAP-
if you have already seen someone at your local hospital, it is worth ringing the admin people there and saying you need another appointment and an event monitor as the diagnosis is in doubt-, but if you need another referral, ask your GP to do this ASAP.
Just having an appointment with someone may not give you a definite diagnosis if you have AF that comes and goes.
Lastly, it's very good you are sorting out your high blood pressure- whether or not you have AF, as you reduced stroke risk by doing this.
Agree that one should not have to go privately nor wait 18months for an appointment and see lots of different Docs but that is the reality for a lot of people on the NHS so if you have the resources, and except that a lot of people don't, I agree that go for a private consultation, if only for peace of mind. You odd get treated very differently.
my experience of private tests done in uk, was a bit annoying to say the least.
this was for a blood test that GP did not want to have done on NHS.
So went along to local private hospital and was told that a prescription was needed from my GP !!!
So theres annoyance from the start, but even better when I asked for the results to be told that they would be sent to my GP and I could only get results from him !!!
What a joke this is in UK.
That sounds dreadful. I have to say that my experience has been exactly the opposite though. X
dedeottie had said it all, great advice. I've had private consultations (£150 a time) and it has worked out very well. It should not be necessary, but unfortunately it is. Last time (a year ago) I went for my £150 consultation, he did an ECG there and then which didn't show anything, but he said that didn't mean much. So he arranged a monitor to be fitted by my local hospital, he then interpreted the results, he confirmed AF, and I went on to the NHS from there on (an ablation). Why on earth all that extremely cheap and quick process had to be private, doesn't make any sense at all.
18 months!!! Unbelievable.
Koll
PS. When I said "unbelievable", that means incredible, and not that I don't believe you !!! It's just a figure of speech that I'm not sure is shared by everyone?
I had af for years and was told several times I had no problem until it flipped over to persistent. So yes I agree with all the others, stay on the wafarin and you need to see an ep to check. There must be some reason that you/they thought you had this originally. \
I don't understand why your doctor is saying that the diagnosis made by the cardiologist is wrong. What initiated all this - what prompted your visit to the cardiologist in the first place? If you have paroxysmal AF, then you may well have had no symptoms whatsoever once that first episode was over. But that doesn't mean you no longer have AF. Your financial status is your own affair but I'd be very careful about throwing money away unnecessarily. A £250 ECG will probably not get you the 'definite' answer you seek particularly if you are not having an AF episode.
Back to the origins of this - were you admitted to A&E with symptoms or what made you go along to see a cardiologist in the first place?
Certainly stay on the anti-coagulant until this is all resolved.
Thanks for your comment to my question, but I wanted to come off warfarin and so went to gp to ask her if I could. Ahe went through everything on her computer that the hospital had sent and could find no document that couls prove that I have A. I nhave had three years of untold stress. in 2011 my hubby was told he had terminal cancer due to asbestos and I lost him Jan 12th 2012. I had firsy chest pains in Feb that year and was taken into hospital and monitored for for a few days. Nothing positive showe anything. Then last year I decided to move house on my own into a flat near my son. In the time I was waiting to sell I had another attack of chest pains, put it down to indigestion again. Nothing again showed up. I was monitored for a week and still nothing, on the day before discharge from hospital, the DR came and told me he stopped all my meds, blood pressure, water tab and asprin,( put me on ramipril 2.5) and put me on warfarin and sent me home.My blood pressure is now very high and my Dr could not beleive they had stopped the 10mg I was on with felpodene) Went for INR test on the following Monday and it read 7.6. That day I had terrific bleed in elbow joint area due to needle puncturing vein. I was admitted to another hospital and monitored for chest pains. One Dr said it could be stress related, another said it could be flare up of spondilitis in my shoulder etc etc etc. Sent home to my new flat which I am very happy in. I never had anything like the people on here have had and I dont think that I should be living my life spent worring about the effect of warfarin, as its causing me stress at the moment as i cannot get on with my life. Please dont tell me that I will be fine on warfarin as if its ruling my life its not for me. I am now 72 why if it is AF,( after the big ops I have had ) this has never been picked up before?
Dot
Hi Dot, INR 7.6 wow!!! Are you being monitored regularly, if so why did they not pick this up way before it reached that level? Sometimes the INR clinic has told me to have my test again in a month when I can see clearly that the INR is going up and up and up. So when that happened or I just felt uncomfortable, I arranged an INR check myself a week later, then they reduced my Warfarin dose. No doubt about it nowadays at least, you have to manage things yourself quite a bit.
Maybe get a self-monitor for home?
Good luck with it.
Regards
Koll
Thanks Koll glad I not on my own. My reading was 2.1 two weeks ago so she leaving me for a month. But I not happy about it as its scares the hell out me thinking about another bleed.
Dot
Hi Dot, at the end of the day you have a choice.. You can't be forced to take drugs and if you (either with or against advice) decide you don't want to take it because it is too upsetting for you then that is your affair. You just need to be fully advised about all the possible consequences of your actions. It has been said before that you can always stop taking warfarin but you can't undo a stroke.
Paroxysmal AF is sometimes extremely difficult to pick up unless you have a permanent monitor such as an implanted reveal and even a 7 day monitor may not find it if events are a long time apart. So you really do need to be very sure. Do remember that even if you don't currently have any events if you ever had then you are still at risk according to many experts.
Bob
Thanks Bob for that. I was told by my doctor that if I did see the consultant cariologist that if I dad have af he is the only one that can put me on other meds. So will see what happens as I just want to get bacl to normal, whatever that is. I want to go on holiday abroad and put some ghosts to rest but while on warfarin I fel unsafe, sounds stupid I know. I would just love to sit down and eat my green veg and my glass or two of red wine with soda. It would be great.
Regards Dot
I don't think it sounds stupid to say you feel unsafe on warfarin. It gives me no confidence - quite the reverse - and I feel it spoils much of the enjoyment of eating.
Is it impossible to edit posts now? I feel I have been too negative here, and indeed too negative generally and not very helpful.
Rellim there is nothing wrong with your post, if there are a few mistakes, so what we all make them, I am just pleased to read anyones posts.
Dot
Thanks for that. I find in fact that you can still edit. I'm finding it hard on the new site to see recent comments.
Correcting mistakes, you are right, isn't really necessary as we all know what everyone means but I often seize a chance to rant and then think better of it once I have said some strong stuff so I take it out. Makes me feel better just to put the words down but they are not always helpful!
Ditto here. Don't know why, but I seem to have to remember where I've posted otherwise I'm just getting lost. Something isn't how it used to be. I still get emails when someone replies to a comment I've made but other than that I'm finding it harder to use.
I usually look at the most recent comments and scroll down through them (and looking at the thread) until I get to what I've already looked at. But now I can't seem to do that.
Hi Dot, I have been having PAROX AF for about 5 years now I have events about every 6/8 weeks lasting between 12/24 hours. When I am not in AF I feel so well. Now having said all that just for background I think the comments made in the other replies are excellent advice.
Just one observation from me:
Life is too sort to wait around and if you are in a position to push things along then go for it, either via the NHS or Privately, find yourself a good Cardiologist even if you have to travel and get to the bottom of your health problem.
Hope the get some answers soon.
Tony.
Hi dot
When my baby daughter died many years ago now, I was admitted to hospital with chest pains and all the tests came back negative. I then read an article in the nursing press saying that grief could cause symptoms of heart attack. I didn't have af at the time that didn't start till till 30tears later.
So it could well be caused by grief and stress
Eileen
Hi Eileen thank you for that. I have always stated to the hospital about my chest pains that it could be stress. The only thing that ever showd up was when they nearly dropped me getting into ambulance and it was a small pulse rate.
Dot
Oh Dot you have been through a lot and I can well understand that you don't want to take drugs that you may not need. As others have already said you may or may not have AF and what your GP is saying is that she can find no proof ie an ECG showing an irregular heartbeat, that you have ever had it.
I was unable to get diagnosed for about a year simply because I couldn't get to a place to have an ECG before the episode ended but I was symptomatic and my GP took my pulse and diagnosed from that because it was so irregular and 'thready'. According to my local cardiologist I couldn't be treated until an episode was documented so it was some 2 years and wearing numerous holter monitors before that happened. The opposite of what happened to you.
I can well understand you GP's questioning whether or not you should be treated for something you may not have. I think if I were in your shoes, I wouldn't take a drug with all the life limiting effects of warfarin unless someone could present me with evidence that it was going to be potentially life saving, which of course it may, but there does seem to be insufficient evidence. Hope you come to a reasoned decision with the help of an informed doctor soon so that your mind can have some peace.
Best wishes
Hello Dot. I wasn't on any anticoags for lone paroxysmal AF until they put me on for my ablation. As I've said on other threads, I'm hoping to come off warfarin 5 months post procedure. I understand why I'm on it but I don't like it - I don't like not eating my green veg and not drinking wine without feeling guilty. i don't know how your GP started you on warfarin but your reading seems very high. My surgery started me on a very low dose and it took 5 weeks to get to above 2.
Just as an aside - just one week after my ablation, I asked my GP for a repeat prescription for warfarin and a note came back to say that i no longer needed to take it! I questioned it, had a telephone consult with another GP who was horrified and of course prescribed the meds. What worries me is that if I hadn't have been informed, I could have just stopped the warfarin there and then. While I don't like taking the stuff - a week post procedure with no anticoagulation could have been a disaster. Sue
The NHS constitution does not all a patient to wait 18 months for a Cardilologist appointment.
You could ring round the NHS EP clinics and find out the shortest waiting time and tell your GP you want to choose and book to where ever you want to go.
I just helped a friend get one sorted in Sheffield via his GP and took 6 weeks.
£150 is about the right price for a private consultation. Consider getting a LiveCor monitor to capture events and take those with you. If you go private try to goto someone at a major centre as you may be able to get your follow ups at his or her NHS clinic.
Hi Loquitir how did you get the EP in Sheffield,as I have thought about going to see one privately, but my AF was diagnosed years ago when i was taken to hospital in Lincoln, after some years later I was given a stent then in 2009 I had a pacemaker implanted, so now when I have a pacemaker check (yearly) they can tell when i have an AF,also my cardialolgist can and has requested a copy of this, would i have to have a copy in i saw an EP privately? Thanks Sann
My friend developed AF for the first time on his 64th birthday. I have AF myself so when he had one of his turns which he put it down to hearing and balance problems. I just happened to be visiting on a bad day and he tried my AliveCor monitor and he had AF. So he went off to the GP which is 20 miles from Sheffield and they tried to fog him off with an explanation of old age. Eventually after several fairly forceful visits they offered to send him to a local cardiology outreach clinic. At that point I gave him the details of an EP in Sheffield he went back to his GP and demanded a choose and book appointment. He got the details and I booked the appointment on the internet and we with him 6 weeks later.
I asked the EP consultant if he needed an urgent follow up - he said he seen the same patients privately and NHS to suit because some private insurers will pay for seeing patients for acute episodes but not for routine monitoring.
In my opinion as a tax payer, I'm afraid the days if waiting for 18 months for an appointment have long gone. Make the complaint; you are entitled to be seen within 18 weeks. Even then AF should be dealt urgently.
Any test results whether private or NHS are your medical data and you are entitled to see it and give it who you see fit for your health care.
A lot of AF sufferers in rural areas don't know about NHS choose and book and make do with inadequate EP facilities or not at all. Given the very in frequent visits to EP consultants more people should consider travel to major EP clinics in urban areas were there has been huge investment in AF technologies.
Remember EP services are a saving to the NHS not an expense because somewhere down the line patients who have not accessed EP services need treating in much more expensive clinical settings or require other care which could be avoided.
In the end you have to assert your right to proper health care.
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