I had asked for an appointment to see my GP when I was discharged by my cardiologest at the hospital. I have AF but all the consultant said was if I felt unwell see my GP. No other instructions, in his letter to my GP he said that my medication for AF 360mg Diltiazem had brought my heart rate down and the AF was under control as far as they can go. Even though I am having episodes every day, palpitations,dizziness, fatigue etc. So I was given a telephone appointment for pm today, felt so disappointed that I had to wait until 19.12 for the phone to ring. then Dr tells me that everything is alright, my concerns about AF are a normal re action and my side effects are normal, he also said that it is policy to have a check up once a year unless I get very poorly, I thought to myself that if I get very poorly I'll go straight to A&E not wait for an emergency GP appointment where they would only send me to A&E anyway. Thats what they have done before. I'm having mixed feelings at the moment as I know that I cannot progress any further with meds and should be happy because I have nothing more serious then AF, on the other hand there is the stroke thing. So now I am going to try and leave all my worrying to one side and get on with living with AF. At least at the moment I can breath better and my heart has stopped trying to srangle me and I can walk further, I have not needed to use the wheelchair for over a month now. Fingers crossed and see how it goes. Glad I found the site. I have found it very supportive just reading about other sufferers.
Telephone consultation with GP.: I had asked... - AF Association
I'm sorry we haven't responded to you more speedily, horseblister.
I'm wondering if your practice has a GP who is their anticoagulation specialist. If your INR gets tested at your surgery, you might get some information from the nurse when you are next there. Some GPs (and indeed some cardiologists) have their own views about AF and the one you spoke to last night doesn't seem to be seeing things from your point of view. Perhaps it was the end of a long and difficult day when you were telephoned. Someone with an interest in anticoagulation might be more dynamic and more prepared to improve things further for you and perhaps refer you to an electrophysiologist rather than a cardiologist - and also think about swapping you from Warfarin when you are already dealing with the diabetic diet. Do let us know how things go for you.
Thank you for the information, I'm having my INR blood test this morning at the surgery, the only problem I have with them is they are usually health care assistants and not phlebo's and even then the phlebos only want to get the job done as quickly as possible, which is a laugh because sometimes they cannot get blood out and other times it wont stop.
"I had asked for an appointment to see my GP when I was discharged by my cardiologest at the hospital. I have AF but all the consultant said was if I felt unwell see my GP. No other instructions, in his letter to my GP he said that my medication for AF 360mg Diltiazem had brought my heart rate down and the AF was under control as far as they can go. Even though I am having episodes every day, palpitations,dizziness, fatigue etc"
If you are having episode every day, then your AF is clearly not under control !!!
I'd ask to see someone else and make sure they are an EP as Rellim just said. Only they are the specialists in heart electrics. From personal experience, I've got nowhere unless I see my EP or his staff. If you are already seeing an EP (i.e. your cardiologist is an EP / heart rhythm specialist) then I'd get back to him/her and press for more help/treatment/change drugs/whatever.
Hope you get a good result as it's a pain having to cope with that every day.
Hello Horseblister. It sounds as though your phone consultation was not very satisfactory. Were you able to find out about an electrophysiologist? I'm no expert, but having daily episodes with dizziness etc. does not sound as though your AF is under control. It took me a while, and some tweaking of medication with the help of a supportive EP (electrophysiologist), but I'm barely aware of AF now. In view of your other medical problems perhaps you could ask to see an EP?
Check on the AFA website under heart rthythm specialists to see if your cardiologist is one who does AF ablations. If they do then they are definitely an EP. Some others are EPs but difficultly extract. If they are not there then look at those who are on the list and then do some research if you want to. Note that the number of hospitals that have EPs is fewer than those who have an A&E and a cardiology department.
An EP is a cardiologist who has specialised in arrythmia and they see far more people with AF and other arrythmia than an ordinary cardiologist.
Obviously I am unaware of your situation but three things to consider that involve spending money. See an EP privately for the first time and then switch to NHS. This will speed things up and you will get more information at the consultation. Likely cost £200 to £300 but check. Secondly buy a Kardia for HR and AF recordings (no need to send recordings to them for analysis. Buy a proper CUFF blood pressure monitor. A suitable one is the Microlife WatchBPHome A (A is for AFib). If you get through websites then you can buy it without paying VAT.
I assume you live somewhere in the UK. If you are in England or Wales your care should be following the NICE guidelines - nice.org.uk/guidance/cg180 - and from what you post I suspect that your treatment falls short in many respects. My suggestion is that you read the guidelines carefully and then list what you need and any questions or concerns you have and make an appointment to see a GP face to face. When making the appointment make it clear that you have concerns about your treatment/care plan and that you might need to have a double appointment. Your treatment should be personalised nice.org.uk/guidance/cg180/...
I felt a bit like you when I first got AF. But the more I worried the worse it got. I learned to live with it and now it hardly bothers me at all
Thank you for that I really appreciate someone else telling me they are just getting on with it. Unfortunatley for me I have multi co-morbidities as the hospital puts it, that rule out invasive proceedures. I am just going to get on with living with it. I've had it since the 90s but it was put down to the steroids I was on and AF didnt come into the picture till 2014. I am more stable now, but I was down at the surgery today for my INR and they ran things through with me again, feeling better now. All I need is the confidence to get on with it.
I cannot agree that AF can be fixed. Many people have to live with it. I have had cardio versions over the years, first they kept me in normal rhythm for many months, but AF still came back eventually. I have not had ablations due to other health problems, but people who are otherwise healthy have had ablations and still not fixed it. This is the electrics of the heart we are talking about, and Drs are still learning a lot about it. I live in UK so insurance is not an issue, and I am under one of the leading heart lung hospitals in the country. Sometimes people just have to try and live with it and get best meds they can to control it
I should have said the term was being used in a very derogatory way.
Unfortunately I have other medical issues that rule out invasive proceedures.
Has your EP tried you on a lot of the drugs available? I have totally debillating AF but I was tried on loads of different drugs to find one that worked on me. They found one and I have virtually zero AF now.
Sorry to be pushy but there is a sense of not enough has been done from your posts. Maybe we are misreading them.
I had a few problems with not knowing enough about my AF, I have had it from the 90s but un-diagnosed as such, I had ECGs and an echocardiogram back then but there was insufficient evidence then to suggest AF it was put done to side effects of my Prednisolone that I have been on for a long time. I was only diagnosed with AF when I was in hospital with appendicitis and treated with a large dose of antibiotics and hydrocortisone. My co-morbidities as they put it, Asthma,Type2 diabetes, Adrenal insufficiency, and being on Warfarin rule out anything invasive. I had two cardioversions, the first did not work and the second worked for 13 days. I had X-rays and CT scans and an echocardiogram done at my hospital by a Dr who came up from another hospital, I'm not sure where, after he had done his screening, it took just over an hour, he handed me over to the regular echocardiologist who spent another quarter of an hour scanning. The results showed no significant change. After different meds for AF, Verapamil andAmiodarone, I am now on Diltiazem this has brought my very fast heart rate down and my BP is in the normal range which is newish to me as it had been low for years because of the adrenal insufficiency. AF is still there but not as strong as it was. I have been confused quite a lot and I am ok in the mornings until all my meds kick in, then I get a few problems, dizzyness feeling nausious and fatigued. I was scared stiff in April when I had my 4th bought of Pneumonia and in E.A.U was asked if the DNR conversation had been initiated because of my AF and Asthma and the fact I cannot have operations. I think I shall get over that eventually. I shall come to terms with AF and go day by day. Thankyou for your concern.
I hope you're feeling encouraged rather than pressured and seeing a way forward for yourself that feels satisfactory.
You might like sometime to investigate exactly what they mean about not having operations and establish if they mean no surgery or no general anaesthetics. Some procedures can be done with sedation or local anaesthesia and quite major surgery - such as hip replacement - is sometimes done with an epidural.
Thankyou for your concern. I did have a half hip replacement in 2009 in which a spinal anesthetic was used, not the epidural, which I was told went between a different set of vertebra. I have had problems with general anesthetics during and after operations in the past because the adrenal insuffieciency causes an accute drop in blood pressure, I also have Chronic Obstructive AIRWAY Disease, which makes it difficult to use a laryngoscope. It caused a problem twice in the past, and anaesthatists dont like that. I was told before my cardioversions that it all depended on the anaesthatist if it would go ahead. On the second time I went in for cardioversion the anaesthatist wanted checks on BP, pulse rate and blood oxygen doing a second time because it was more than two hours since the first checks were done. Not very good as I have type 2 diabetes and I am on Warfarin and I was not allowed to take any meds before hand, also I hadnt eaten since the evening before. I had heavy sedation. After many scans and knowing that I have hernias and adhesions from previous operations as well as skin that tears easily and takes a long time to heal, a legacy of going on steroids a long time ago( I was told I would not live to the end of the month if I didnt go on them, well that was in 1969) it was an agreement between myself and the Consultants that operations would be out of the question. That is why I think one of the Consultants in the Emergency Assessment Unit asked me about DNR. I told him I would discuss it with my family first and he left it at that. Unfortunately I have come to a position that none of my Consultants (Respiratory,Cardiac, ENT,Gastroentology and Orthopedic) nor myself likes but the facts are stacked against me having a good outcome from any invasive proceedures so I leave it at that. I hope you can understand.
Thanks for that. It seems you've more than your share of problems and it's bad luck to have to add AF in as well. There are quite a few people on the forum who have complex health issues and it's always helpful to gain knowledge and insight.
The DNR question hasn't been touched on very much in this forum. My own feeling is that it is helpful to tell one's doctors whether one has a desire to cling to life or would prefer to move on swiftly and that this is best done when one is of sound mind rather than under any pressure in a hospital environment.
I agree with you there, I was upset by the question. When I got up onto the main ward I was told to think very carefully about it as it could lead to a lot of upset, not just to me and my family but to the staff who have to deal with it. As it rules out them helping me to breath if I had an Asthma attack or Broncospasm.
Yes, it's absolutely the wrong time to ask such a difficult question.
One can fill in a document to state one's wishes and I've just asked if the AF Association has one but it would seem they don't. The signature needs to be properly witnessed - ideally it's best to have several copies and sign each one and get the witness to sign too.
One less complicated way forward to is have a tattoo on one's torso.
I have heard of people getting tattoos done for this.
Possibly better than a bit of paper that gets lost in some file. It's there for you to point to whichever hospital you find yourself in.
I had an ECG yesterday and asked if they ever have anyone with a tattoo about resuscitation on their torso and the lady said she had never ever seen that. She suggested a bracelet would be something that it is always checked. You can buy bracelets with any information you want printed on them - blood group, allergies, anything you want.
I have had a Medic Alert bracelet since the 70s. It gives my membership number, their telephone number, medical conditions and allergies. It also comes with a wallet card that gives hospital number, GP, next of kin and list of medical problems and medications. I would not be without it.
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