Hello, I would appreciate your opinion re: the remainder of my AF journey and, how to manage same!
I am 76 years old and have what I consider low level Atrial Fibrillation, this is in comparison to many of my AF friends on this forum.
All of my vital signs, blood pressure etc, are within normal range.
My medication includes Bisoprolol 2.5mg twice daily and Tildiem 120 mg, three times daily, these are non-negotiable although I have requested a possible different choice.
I guess with my medication intolerance the professionals know best hence, the 2nd ablation
I have been on the waiting list for a second ablation since August 2018 and have been notified that all selective Cardiology operations have been cancelled until further notice, my hospital is based in Coventry.
My dilemma is that I am getting older and question whether waiting for an ablation could be detrimental given my age.
I mentioned that I consider my AF low key thus my question is, do I count myself lucky and accept the status quo, and my second question is, how do I address the crippling lack of energy that persists.
Many thanks.
Phyl.
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PhyllisK
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I really have tried to get the Bisoprolol changed but the Arrythmia nurse will not budge! The GP is reluctant to help. I am finding my lack of energy a real problem but feel a little bit in Limbo. Now the ablation has been cancelled I will try again and show them your reply. Good luck with your AF journey.
Hi Phyllis, I'm not in the UK and have only been learning a bit about your system from the forum here, so I don't presume to understand all the ins & outs of the process, but as a pesky American, I encourage you to find a way around that stubborn nurse!
I know it's hard to make a fuss when you feel tired, but my experience was that it ended up giving me energy to get in there and speak up on my behalf. It's the only way I've been able to make my way through the AF adventure, and I still have more fuss-making ahead.
Thank you. Your support and good advice are reciprocated. I do try and be assertive but trying to contact the powers that be can be frustrating. I will try again and hopefully succeed. Thank you once again and good luck in your continuing AF journey. Here’s to a summer of much love and laughter. 🌞 Phyl
Seriously, you should consider another ablation. Low energy and Afib are one and the same. I know of people, 85 and up who have had ablations. Get rid of the Afib and live life. That’s why we’re here.
Thank you for your words of encouragement. I haven't totally discounted the ablation but, my age and sex, seems to be a consideration according to a well respected cardiologist. That's why I am trying to settle into a manageable situation. Phyl.
Hi Phyllis . I do not think that age has anything to do with it. That said do remember that any and all treatmen for AF is only about improving quailty of life.
Others have mentioned change of drugs so maybe you need to write to your consultant rather than argue with the arrhythmia nurse. Much as I respect these people there is the old saying "Talk to the organ grinder not the monkey. " One often needs to be pro-active and assertive in such circumstances.
Thanks Bob, the arrhythmia nurse always discusses any drug queries with the EP but he seems reluctant to change my Bisoprolol. I guess it's probably due to my expected ablation operation. I will keep trying but the clinic is always busy and take days to reply to phone calls. Please note! I am going to be wealthy in my reincarnation. Take care. Phyl
I had a struggle to get changed from Biso to Nebivolol. I asked at my Cardiac clinic several times to change to Nebivolol because of breathlessness but they said no, tried to give me Carvedilo which is worse than Biso for breathing problems. Eventually my GP changed it for me (I thought she was not supposed to do this unless instructed by the Cardiologist) at my last appointment in January with the Cardiac clinic I told them about the change and they said nothing. You may have to lay it on a bit thick with the adverse effects to get it changed - but keep trying, I wonder what they would do if you refused to take it? On Biso I was not too bad with tiredness, but I did find when I changed to Nebivolol that after about 4 weeks I was far more alert, as if a slight fog had lifted.
When I told my cardiologist I wanted to change to Nebivolol I said I thought the Bisoprolol made my asthma worse. My asthma is very mild and I don't think there has been a lot of worsening but it is advantageous to have this diagnosis! He just nodded and said he'd write to my GP to change it. Interesting that you say you had to wait 4 weeks for a change . I have been on the Nebivolol 8 days and have not noticed any difference yet.
Hi Phylis, I too am in mid 70's with P/A/F for some 20 odd years, had a stroke in my 50's, had one failed ablation a few years ago and now wear a pacemaker, take Bisoporal, Disopyramide and a trusty blood thinner. To be quite honest If my condition had been slight like yours, just a bit of a nuisance, then I would not contemplate ablation or anything else unless it became more of a life hindrance or a severe risk to my overall wellbeing. Good luck in making your decision but that would be mine.
Thank you for your advise, it is just this crippling fatigue that prevents me from putting everything on hold. Thank you once again for replying to my post. Best wishes. Phyl
The crippling fatigue could be due to the Bisoprolol. I could not tolerate more than .65mg .
I would insist on going on another ablation list at a different hospital, it may be worth seeing an EP privately in a different area as they may then put you on their list. I initially saw a cardiologist outside of my borough privately but I am now on his NHS list for reviews. Dont let them fob you off we've all worked and paid 1000's in over the years
Thanks Andy, I am already 10 months into the waiting list system and wouldn't like to start from scratch again. Sadly the service is over subscribed with this rotten condition! hence the cancellations of operations. 😕
Low level?? You are taking 5mg of Bisoprolol and 360mg of Tildiem (Diltiazem) daily if I am reading you right. If I was taking that much medication I couldn't get out of bed, plus a few other nasty side effects. I am wondering what the meds are for, I mean besides AF? I can't take anything except a low (120mg) dose of Diltiazem which is really for angina but luckily I do mostly have low level AF since my ablation so I manage without.
If an ablation is going to get you off the medical cosh I would definitely be going for it. I hope you get an appointment for the ablation soon and that it is a success, my very best wishes for that 💜
This is why I love this Forum. I feel a nuisance complaining about a low level AF but you give me pause for thought. Perhaps it is the medication and not me being a wuss. Thank you again for your support and I reciprocate your lovely best wishes. Phil.
What do you mean by low level? I definitely consider my PAF low level as I have had 5 attacks in 4 years though 3 of them were last year. I am now much more careful about not becoming dehydrated, taking my magnesium supplement regularly and have cut down to half a glass of wine with my principal meal.
We have waiting lists because we have a government that is obsessed with slashing taxes for large corporations and wealthy voters. Go and see your MP and look him/her in the eye and tell them you are not happy with being on a waiting list for this length of time, and you are thinking of forming a pressure group of people who are similarly afflicted. Doesn't cost anything and may get results .
bisoprolol seems to get a very bad press on this site with regard to this particular side effect and I can understand your reasons for hanging on in there. May I suggest you contact your cardiologist's/EP's secretary to make sure you are progressing nicely up the list.. If you are only 8 weeks from the top you should be hearing something soon?
Start making a fuss. Say you want a second opinion and ask to be referred to a different EP. Only those who make a fuss get noticed in a busy overstretched nhs.
Some facts to consider about Afib. The sooner you get treatment the better your chances are for a successful ablation . Your Afib is always going to get worse. Whatever your medication is there will be side effects you may or may not notice. The fatigue you experience robs you of a normal life. The procedure itself can take hours but for you it is over in an instant. I understand everyone has their own experience ,but give yourself a chance. Pam
I agree make a fuss! Please consider your quality of life over thoughts of your age. If an ablation can lower your need for higher dose of meds maybe that’s what should happen but that decision is yours. Keep riding the high waves of a sailing ship versus getting off the ship-not good with quotes but I think you know what I mean. Many wishes for continued blessings in your life
It is almost certainly the Bisoprolol that is draining your energy.
Contrary to the advice from your EP mine took me off long term repeat prescriptions for it and when I mentioned recently that I took 1.25mg together with Flecainide as PIP recently he said not to. We are all different however and one of the reasons in my case is that I have poor conductivity.
A change for you to an alternative to Bisoprolol might resolve the fatigue issue for you.
Just to give you the picture of what 'private' medicine is like in the US; it depends. My EP consultation is 17th July and that was set up mid April. Folk tell me I am lucky and it can be 6 months+. The cost is insane and my wife was invoiced $36,000 (say £28,000) for a couple of hours in OUTPATIENTS with a kidney stone. Doing anything without insurance is not practical... I would say it's easier to bully the Doctors here because they make 4 million a year instead of 120k, and you just switch instantly if you don't like the doc or the treatment.. I had 59 years great treatment under the NHS and 12 good years mainly very good in the US so far.... My 92 year old mother had a hysterectomy in England at 2 days wait..great job and free....The experience at my local hospital in Wisconsin in April was dire and horrible and confused and as bad as anything the NHS can throw at you... So, it's horses for courses and we just have to navigate local conditions which are forever changing...... eg Leeds (inner city) is a nightmare, and Harrogate is like a 5 star hotel in comparison. I ran out of Leeds and drove 20 minutes to Harrogate. You can do that... Not many people know that...
Where in Wisconsin. I am in Milwaukee in Medicate Advantage with United Health. Had an ablation 4/11/19 at an Ascension Hospital. Won’t know for sure how well it worked for another 6 weeks.
My main gripe is being totally unprepared for the possibility of a difficult recovery and not being able to talk to the Doctor but getting routed to various assistants.
I raised a real ruckus about taking amiodarone and did finally get to talk to the great man who said “ok, ok”. Now I take a small dose of metoprolol for balance of recovery period.
I stopped all alcohol on
My own and added magnesium citrate at GP’s request. And it was GP who picked up I had surgery induced anemia. Iron supplements for a month - and raisins.
I don’t know if EP’s office staff would have ever noticed. I think Ascension’s acquisition of various pre existing Wisconsin networks and hospitals has caused great disruption and distress - and distraction.
There is a US Doc in Louisville Ky who writes lots about AFib. Check out drjohnm.org.
I recognize a lot of your comments as being the same as my experiences. I was in a hospital at Menominee falls whose name rhymes (appropriately enough) with "pay dirt".... When I wouldn't convert and was admitted, it was like being on the platform of a busy railroad station with herds of people rushing in and out of the room and all telling me a different story, giving me different answers to my questions and breaking promises about when they would come back with XYZ, or when a procedure would happen. The all-night noise from adjoining rooms where crazy people were lodged was constant. On the 3rd day of sitting there bored and irritated in a dumpy room with a broken telly and a rag of a shower curtain etc, I told them I was out of there, and when I got home I called and cancelled the appointments to see their specialists ... Did I tell you they doubled my drugs and stopped my heart for 5 seconds and 5 times over ? Not going back there and I will use Aurora ER/hospitals now, even though there is a long wait for a EP/Cardiologist. . I also have experience of Pro Heath at Pewaukee for prostate cancer, and they are very good...Very professional, very slick....
I think you have hit the nail on the head! I have been in full blown AF since 2009 and had an Ablation in 2015. Knowing the vagaries of AF it continues to interrupt life and some where along the line I have needed a helpline just to tweak medication or for a confidence boost. I haven’t found this to be the case in Coventry I feel they are reactive rather than proactive and sadly that’s why I feel like “What Next”. With operations be cancelled and no communication do I just accept that it is what it is! and get on with it!!! Having said all that I do wish you luck and hope all goes well in your recovery. Try to enjoy your summer and all the good things of life. Phyl. 🌞😊
I am local to you and had my ablation in Leicester Glenfield, They have specialised in AF and ablation for many years and I cannot speak too highly of them. Why don't you ask your GP to refer you as you have been waiting for 9 months already with no prospect of an imminent procedure now that they have stopped doing them.
I went to a support group in Stratford-upon-Avon and met the Coventry EP and the Arrhythmia Nurse. I was so impressed with their attitude and their enthusiasm for the future that I wouldn’t want to leave their service. I am just disappointed with the cancellations, not only for me but for people so so much worse off than me. I do love this forum because people like you make me feel supported. I hope your ablation remains successful and there is no reason why it shouldn’t. Enjoy the summer. 🌞 Very Best Wishes. Phyl.
Hello Phyllis. Just saw your post and that all selective cardiac operations at Walsgrave have been cancelled! I am on the waiting for ablation there but haven't heard anything from them. How did you find out please?
Ps was wondering if anyone in our area would like an informal support group ? I agree about the long wait for return phone calls btw!
Hi. I’m under Walsgrave too. Not on any waiting lists but one doctor said I needed a reveal device inserted and another said I don’t 🤔
I don’t live near Walsgrave anymore but would be up for a support group 👍
As for Phylisk, please don’t suffer when there’s no need. I thought medication was to give you a better quality of life not make you feel worse! Ask if you could just try something else for a period to see how you go. I switched to Atenolol and feel much better 👍
Only you can decide, but if I were you I would do what I felt was beneficial to me. if it meant getting a little upset with my Doctor or who ever I had to, I would. Sometimes unless you let them know your concerns they will put you on the back burner to simmer because they can and will if you let them. if the medication you are taking make you feel tired or sick maybe the dose could be lowered. I take sotalol and was first prescribed 80mgs two times a day, that was to much and I was so tired and sick so I had my dose cut to 40mgs two times a day (WITH DOCTORS PERMISSION) . "All the different in the world." You take control and don't take NO!! for a answer if you feel it is wrong.
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