I’ve used you lovely people to help me limp along for the last three years , your posts have kept me going. My AF has been steadily getting worse with not a lot of help from the nhs , it’s a long story but one I hope you can help me with . I was referred to a Electrophysiology doctor , not at my local hospital, they don’t have one , never saw him but he listened during lockdown and I had an monitor app on my phone for a week I think it was , which he saw and I had contact with the AF nurses. The dr told me I should have a pace & ablate procedure .. I eventually got to see the AF nurses locally and the consultant wasn’t keen on doing a pacemaker and told me he would treat the symptoms and not the cause . This had resulted in me for the last 18months getting steadily worse , good days overtaken with dreadful symptoms almost daily now , slow beats, fast beats , horrendous syncope ,three trips to A& E, no reply or follow up from AF nurses to monitor my medication , left numerous messages and no one gets back to me, I feel totally abandoned with no where to go to get myself better. I have a phone consultation arranged at the beginning of October , just hope I last till then ! Sorry it’s so long , I’m really at my wits end and feel so lousy , I’ve no QOL and so depressed by it all
Thanks for reading !
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Cazwayside47
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If I were you I would make an appointment with your GP and ask to be referred to the electrophysiologist you originally spoke to. If you are not getting a reply from the AF nurses I would complain to the Hospital PALS in writing. Have you checked with your GP that no follow up letters from your visits to A&E have been sent to them? Do ask. We need to be proactive with our care so we need to check everything and not wait. You can also ask for any letters/test results sent from consultants or other medical professionals to be copied to you so that you will know they have been sent - in England I am told you can check on that on line - we cannot do that here in Wales yet. Then you can ensure that if you need to you can make an appointment to discuss these letters with your GP or relevant medical professional.
I receive an email when my patient records are updated with blood tests or consultant letters. Then I log in to see them, usually before my GP has seen them. You won’t see historical records, just the new ones going forward.
Recently had blood tests at 9:10am and results were there at 12:30pm the same day, no trying to phone the GP.
It doesn’t actually link to my surgery, whether that will happen in the future I’m not sure. It links to your NHS hospital records and alerts you when a new record is saved. I have seen the last few letters from cardiology this way a week or two before the paper copy arrives if you have been copied in for one. You register by logging in with your NHS login and then create a separate password to access the system.
The main reason I did it was to save ringing for blood test results and the link to cardiology was automatically added from my NHS record I guess, which is an added bonus.
I assume you mean in England, the NHS Wales app does not have this functionality yet. I have the NHS Wales app and registered for an alert when my surgery is linked up. Not much to see on there yet hence the separate login to PKB.
Hi and yes, you might well be right. My cousin has it on his NHS app but often complains about. I have the same app but not the link to the strangely named “Patient Knows Best” part and I haven’t especially wanted it. I was just looking at the guide on the NHS app and it might be that it is, as they say, “rolling out” still.
The whole reason I looked in to this was to reduce the frustration of repeatedly trying contacting my surgery. Every contact seems to lead to another contact to chase up what they haven’t done. When they start doing things right first time, they will run out of work in the afternoons. Just my opinion.
That's funny we had just started using e mail to request repeat prescriptions from about September 2019 when I had my knee replacement so just before the pandemic. The first time we tried to log in during the pandemic thinking this is a great way to do it at this time they had stopped it ???????? the thing was we got no reply from them saying what to do just rang the pharmacy four days later and found no prescription! It seemed a great way to get prescriptions sorted at this time - easier than the pharmacy assistant having to go in and out of the surgery taking requests in and then collecting the prescriptions later. Goodness knows why I wrote a letter about it which didn't get an answer and as the surgery was either closed or telephone's went unanswered during this time we then telephoned the pharmacy for our repeat prescriptions during the pandemic and right up until now. As you can imagine getting repeat prescriptions during the pandemic meant a lot of waiting on the telephone for the poor little pharmacy to answer - there's hardly room for the 3 people usually on duty there and only room for 3 people to fit in the shop with social distancing so often queueing outside. My one abiding memory of the beginning of the pandemic was talking to a receptionist through an open window at the surgery about getting a dressing changed. Luckily it was a nice sunny day. One day I will get back onto e mail repeat prescriptions but now have forgotten the passwords I set up for the two of us. The pharmacy does a brilliant job and it's nice to talk to them too - not that our receptionists aren't nice to talk to they are and usually helpful too. It's not necessarily their fault that weird decisions are made at the surgery.
Yes, I agree. Their job is had enough dealing with anxious and angry patients. I hold up my hand 😉 and often it's about decisions taken higher up the organisational scale.
See my two replies to desanthony above, patientknowsbest is not linked to the surgery yet but you can see your results. I think it will all be linked in the the NHS Wales app when it’s fully functional in the future.
That’s incredible! I get an email telling me my blood test results are “ready to view” but not where! There’s a weird system my husband logs into for me where all the results are so he found some older ones first before finding and printing out the latest ones. My doctor proposes to phone me next week to “discuss” them, sadly not the nice woman doctor at the surgery, who I find to be far more helpful and understanding.
I feel so sorry for you and must admit you do sound as though you've been abandoned by the NHS. Now I'm wondering why that would be. Are you one of those people who sit quietly when seen and say very little about how dreadful you are feeling? I've been like that at times, thinking that the results of tests will tell them how poorly I'm feeling. I soon discovered that doesn't work. A lot of these medical people have no idea how dreadfully we suffer with our erratic heart rates and we really have to let them know. I sometimes wonder if they look at us and when they see that we are growing old, whether they think we have to put up with it because when you're old you must expect to get these things. Or offer you pills to mask how you're feeling.
Keep on calling those AF nurses.
Write a list of things you need to ask when you have your telephone consultation in October and be firm in stating how dreadful you are feeling.
Have you had your thyroid function tested recently? I carried on for ages thinking it was AF making me feel so drained, but it was in fact an underactive thyroid. Yesterday I was remembering how once when going out to a nearby town I felt too weak to carry my handbag and a friend said she'd carry it for me. Taking medication to right that gave me my life back.
Thank you for your message Jean. I did try to tell my consultant…I had several private appointments…..he is the same dr I should be seeing on the nhs , it resulted in me getting quite upset and of course my blood pressure went sky high . I think he’s got me down as a neurotic old lady! I’m a young thinking 76yr old cheesed off with feeling ill ! I’m trying to hang on until Oct 2nd , a phone consultation , and then depending on his reactions I may well go to the private sector…. Life is too short and I want to start living again.
I’ve always led a busy active life , friends & family are very important to me and I want to enjoy lots more years with them. Hope you’re ok too .
I feel quite annoyed on your behalf and I'm glad you're getting ready for a fight! Insist on being referred for another electrophysiologist appointment. I live put in the sticks in midwales - Hereford is my closest cardiology unit and they have no electrophysiologist there. But we have a visiting 9ne from QEH Birmingham. Di sine research for your nearest hospital with a good cardiology department and more than 1 electrophysiologist. Living in England you have the right to be referred anywhere in the country. Do your research and insist in that referral. It'll take ages but you can see that person privately to speed things up.
I've had 3 RF ablations performed by Guy Haywood at Derriford Hospital and feel so much better. When he did the last one he'd designed a new piece of equipment that he put down my throat to the outside of my heart to see where the rogue pulses were coming from. If I were choosing now I'd go to Mr Hunter in Leeds for a mini maze. Or if I could afford it to Japan or Houston in Texas where they do the Wolf mini maze.
Yes, that's a leading cardiology department. Excellent track record and - I think- one of the only places that does pulsed field ablation in the UK. I paid to see Dr Tim Betts privately back when.my journey started and he was very helpful. Make sure you get any records available to take with you if you go privately. Your GP should supply or request from any previous hospital appointments. DM of you'd like the email address to contact Dr Betts Private appointment secretary as I think I have it on file.
First one ?...how long ago and how are things going?Just started on this AF journey, first episode in March 23, cardioversion May, NSR 3.5 months, until 3 weeks ago woke up in AF. CV back into NSR in A & E. Maybe looking at ablation after 3rd flip, that's when they look at you more here.
2nd. We knew 1st didn't work si well because sedated only and apparently I wouldn't keep still - even though I was out cold. Had 2nd with GA in March 2022 and no detectable AF since May 2022. Still.get ectopics occasionally and can get short runs of tachycardia around 105-110 if I get stressed, overtired or anxious. But they're noticeable and I always get my HR down again if I stop, rest and breathe shortly for 5-10 mins. I hated having my.AF episodes and the lack of confidence that resulted from the anxiety and perpetual anticipation, so it's good not to have it at present. I hope I'll deal with it differently if it returns. Ablation isn't a permanent fix as I'm sure others have said. Not a cure. But for now - life is much more enjoyable!
Try and get a private appointment with an Electrophysiologist in your area just to get things going.
This is exactly what I said to my EP - whatever time I have left I want to be able to enjoy with my family and friends not spend my time puffing and panting and having to rest every half an hour. I was around your age and when first diagnosed with persistent AF had gone from being able to go to the gym to barely being able to walk. Eventually got to see a cardiolgoist privately (there was no cardiologist at our local hospital and hadn't been for 14 months) and tried rate control medication - bisoprolol which made me feel worse than the AF alone and various other medication but in the end just on anticoagulants. I then moved house and found a cardiologist at our new local hospital - I could have been referred to her from my original GP as she was in our area but don't know why that didn't happen. I had 3 cardioversions which kept me in NSR for nearly 3 years out of the next 4 years and I felt wonderful. An EP from another area was attached to her team and I eventually got to see him - to hurry things up I paid for a private consultation with him first. Unfortunately, then the pandemic intervened and I should have had my ablation the April after lockdown started. I had an appointment for one in the September but I was away with my sister in Portsmouth as her husband had died of Cancer and I was helping her move house. Had another appointment in the October 2020 which had to be cancelled as the whole cardiology centre was closed due to an outbreak of Covid there! At this time I was still in NSR following a cardioversion in Feb 2020 which lasted until June 2021 when I was in the process of going through waiting for my ablation again. As so much time had elapsed had to have all the scans again and it was found that my heart had re modelled itself and further cardioversions or ablations would have been unlikely to work. However, now in Permanent AF I am back at the gym 4 times a week - chest infections allowing and doing OK. I have done a phase III heart rehab course at our local hospital and gym which I found brilliant.
I do hope you get through to your GP and get a referral.
I have been aware of my PAF for about 3 years also, initially seen a cardiologist privately and had a private echocardiogram, then reverted back to NHS on drugs to control heart rate and anticoagulants, on 6 monthly reviews but first was 9 months and the next was 13 months. I only have episodes monthly and not too symptomatic so was able to tolerate the delays. The cardiologist’s secretary has always been very helpful and approachable.
In your position I would be banging on my GPs door to start with as that’s always your primary route to a consultant. Otherwise I would be looking to contact cardiologist or electrophysiologist that you have seen previously via their secretaries. Their contact details would be on any reports you or your GP have had from them, or try ringing the hospital and ask for Dr xxxx secretary. I’m not saying this is the correct route, just my thoughts to help you get the attention or advice you need. Good luck.
Thank you for your message and your helpful advice , it seems every corner I turn it gets more difficult. I’ll keep trying and see what the next phone appointment with the cardiologist brings , it’s on on 2nd Oct . I really need to have a echocardiogram, the last one was long before lockdown and I should be having them every two years . I think now the only way to move on is to go down the private route . I’d rather spend the money on a Caribbean Cruise !
I do feel for you! The problem seems to be that cardiologists and electrophysiologists quite often disagree which doesn’t matter if the EP offers you an ablation, because then you can tell the cardiologist to go hopping, but if the cardiologist won’t do the pacemaker bit you are stuck. I do not know if the EP can do both but that would be the answer. If you are having episodes of fainting or even pre syncope that is dangerous and you are entitled to complain that your life is being risked by the lack of action. Your GP should be getting some action for you if the AF nurses are ignoring you. Best wishes ❤️🩹
I’m your age and have been through almost 20 years of AF and various drugs etc. however I ended up as permanent AF and was having light headed episodes etc and was offered the ablation of the sinus node with PM. I declined the ablation as I didn’t wish to become pacemaker dependent, however the implantation of the PM has been the turning point in my life. It has steadied me up, made me feel safe, and although I’m still in permanent AF and breathless on bending, walking up stairs and hills etc, life is now more enjoyable and no fainting. Also the thumping chest has quietened and although still there, does not seem as obvious now.
I would recommend a PM for anyone like us, it’s my best buddy.
It sounds like me - no follow up after stroke with AF and within 4 days Thyroid shadow which was later biopsied to a diagnose of papillary thyroid cancer.
I had rapid and persistent AF with 187 H/R avge Day and 47avge Night with pauses on Metoprolol which I told them NO. I was breathless and with no energy.
1 year 3 mths I asked to see a Heart Specialised. An echo, ECG and 24-hr monitor was done before I saw her.
Changed to Bisoprolol. Day H/R 156 Night 47 no pauses but still not controlled.
Left.
So 8 mths later on Bisoprolol up to 10mg day.
Locum sent me to a private H/Specialist. He also worked public.
He took a good look at my history. Stroke with AF Sept 2019. Thyroidectomy Feb 2020 with 12 right lymphs taken (2 infected).
He introduced CCB Diltiazem. 180mg proved too much reduced H/R day by 105 bpm. As it was a weekend between our Healthline and NZ Heart Foundation.
It was reduced to 120mg AM with Bisoprolol 2.5mg PM.
124/69. now 60s H/R Day still 47H.R night.
We need to be advised your BP and H/R at Day rest and Night avge.
You need to balance and get BP and H/R under control.
Until H/R is under 100 will an anaesthetist operate on you for anything.
So sorry to hear what you’re going through. I think you’ve received some great advice here which I can’t add to I’m afraid. But I note you say that this group has helped you through the last three years, so keep using your friends here, tell us of your ongoing frustrations and hopefully, your successes. You are not alone Cazwayside. Big hugs. xx
It’s all very upsetting and frustrating, but there must be some important cardiac health background to your once being told you are eligible for “pace and ablate”. This, as you know, is a procedure from which there is no return since essential heart tissue is destroyed and its function replaced by an implanted electronic device. Not surprisingly, depending on the context, there will be many times when different doctors reasonably take different views on when or if to carry this kind of procedure out. Done doctors are known to be “cavalier” others are more cautious.
These very different approaches can make it seem like we’ve “got a good doctor” or the opposite, that we’ve “been abandoned by the system” - when we likely haven’t. It’s more likely that there might be no single obvious way forward that will definitely lead to a known outcome.
I think this is a common aspect of heart conditions, whether structural or electrical (and likely very often, a combination of the two) - and especially as we get older.
And yet the frustration and doubts will always remain; and, of course, the anxiety and fear.
I’m sure that many of us hear an echo of our own internal angst (and yes, inner cries) in your own difficulties.
I think you GP should allow you the time for a proper discussion on where things are and what the prognosis is given different scenarios, one being over and ablate.
So sorry to hear your experience which certainly trumps mine. When it was proved that the only thing my surgery had to offer me was Bisoprolol, the lowest dose of which, which I had insisted on, was too much for me, zilch! So we found an EP through the AFA and though he was a Private consultation it was well worth it as after he had introduced me to the wonders of the Kardia and smart phone and I’d sent him a reading of an episode, he sent a prescription for Flecainide and instructions how to take it as a PIP. So money well spent! We don’t seem to have AF nurses around here! A friend was encouraged to have a pacemaker fitted but it was never wired up properly and in one attempt to get it going she was infected with something dangerous so it had to be removed!! So, unsurprisingly, I didn’t go for one. Now I take Flecainide regularly and only incredibly rare very short episodes so just the side effects of fatigue and digestive problems to deal with!
Im so sorry you have been left in this awful situation, its just wrong. you must be feeling absolutely desperate. Are you in a position to pay for a private consultation with the EP you saw? just a consultation should not break the bank ( Im not suggesting you go for any procedures privately, but you can get to talk to him more quickly)
I’m so sorry you’re having such a difficult time with your AF and obtaining adequate treatment! I live in the US and finally had an ablation 6 weeks ago after more than 2 years of symptoms. I tried a number of meds which would work great for 2 months and then stopped being effective. The information on this site helped me tremendously as did You Tube videos by Dr Sanjay Gupta (a cardiologist in the UK). The videos really helped me understand a lot and decreased my panic when having an episode which were happening 20 days a month. I felt terrible but found that I really had to advocate for myself which sound like you are doing! I also realized that I was having very bad GI reflux which was stimulating my AF. I’ve never had reflux before but taking a proton pump inhibitor helped tremendously! My reflux episodes felt like a heart attack and were occurring right under my sternum. I’m 71 and the ablation gas totally changed my life as I’ve had no arrhythmias since the procedure! Good luck!!
How horrible for you. So sorry. It is lousy when the heart plays up like mad. You feel so rotten and anxious. Desanthony is quite right. I am very much afraid that you have to follow things up with the doctors nowadays and make a bit of a fuss. I always say that if you are not right you need a well person batting for you. Good luck with the appointment in October
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