A bit of a dilemma

[Stephanie6637]

This is my first post. I was diagnosed with PAF in June. It came on in May out of the blue. I also developed high blood pressure wich my Gp who had been brilliant throughout days is linked to my heart problem. An echo show a mild to moderate mitral valve leak and a moderately enlarged left atrium. I have gone from being on no medication to loads a day am now on Bisoprolol 5mg, felodipine 10mg, irbesartan 150 mg twice a day , Butmetanide 1mg and Rivaroaxaban 20mg. Am struggling with the side effects especially swollen painfull ankles. I have episodes of AF most days and am currently off work as my Gp wont let me go i am a retail manager. After an urgent referral i finally saw an ECP on Tuesday who agrees i need an ablation however his waiting list is 6 months. To be honest he didnt really listen to the rffectd this horrid condition is having on my life. He said he was running a clinical trial using anti arrythmic drugs and that if i agreed to go on it and take different drugs monthly for 3 months he would do the ablation within a month of the trial finishing as a favour for taking part in the trial. I feel as tho i am being blackmailed into doing his trial and i wasnt aware drs did favours for patients i thought they were supposed to do their jobs. My Gp spoke to a cardiologist who told het that there is no evidence that rythmn control is better than rate control and thr side effects of rythmn control drugs can be much worse. Also i am assuming this clinical trial involves new drugs with possibly unknown side effects. My dilemma is do i just wait the six months i have doubts i would get a cancellation at any point as i refused to do his trial or risk doing the trial only for him to say that he wont do it anyway. I see an ablation as my chance to get my life back and get off some or all of the medication.

[pip_pip]

Hi

I think its more the case of you doing the doctor a favor by doing the trial. From my viewpoint, as you say, any new meds might well have new side effects. Sounds awful. Its bad enuff taking regular tried and tested meds. I think its unlikely the EP would not offer you the ablation within the months he offered. Having said that the trial meds might be wonderful for you. If it was me, I would wait the six months. I had to wait a long time for my last ablation, almost a year. Which I did not expect. The first two were a matter of weeks. If you're really worried about the trial side effects, forget it.

Phil

[Stephanie6637 in reply to pip_pip]

Thank you for your reply Phil. I am leaning towards waiting the 6 months. Have just spoken to my Gp who is not keen on me signing up for a drugs trial when i probably wont fully understand what the drugs are she said she would prefer she read any paperwork before i signed it. She also said that the side effects of anti arrythmic drugs arent very nice wich is why i am not on any at present. I just feel this consultant is blackmailing me to go onto his no doubt very well funded trial by saying he might do the ablation earlier.

[Finvola]

Hi Stephanie and welcome. A few thoughts occurred to me on reading your post but the overwhelming one was - too much haste and too little apparent guidance. In your position I might prefer to have a second opinion from a different EP and certainly one who would listen to me. If you feel pressurised, then you are being pressurised - especially if there is scant information about 'new drugs' - I wonder what they are?

Six months seems to be something of a normal wait - I have opted to stay on Flecainide for rhythm control - but, if and when, my EP's waiting list is six months for AF ablation.

None of this does anything for your stress in coping with daily episodes of AF but your GP sounds very supportive and she seems to be giving good advice. In desperation at first referral waiting lists here, I asked my GP for a private referral to an EP and feel that it was £200 well spent. If this is something you can do, it might be worth discussing it with your GP.

Best wishes - AF is bad enough without added hassle.

[Stephanie6637]

Hello Finvola and thank you for replying. I have been to see my excellent Gp today she had done some research and cant find any new anti arrythmia drugs being trialed so thinks i would be given current ones. My health is quite stable at present and she is concerned that taking a new drug monthly for 3 months might make me unwell especially as i would no doubt be taken off some or all of my current medication. We have only just managed to get my blood pressure under control and doest want to destabilise it. She has changed me from Felodipine to Lercanidipine today to try and help my swollen painful ankles. After speaking to her today i feel happier and have decided not to do the trial as i am not willing to compromise my fragile health. Its good to know that there are people on here who will listen and give good advice.

[Mazza23]

It seems to me the drugs that end in pine are the cause of swollen ankles I took amilodipine for a short while and my ankles became very sore and swollen my cardio took me off it

[Stephanie6637 in reply to Mazza23]

Hi Mazza 23. My Gp said the one she has changed me to is much less likely to cause swollen painful ankles. She is reluctant to change me onto one from another group at present as this is the first period of settled acceptable blood pressure i have had since May and she doesnt want to risk sending it high again. Guess its just part of the trials of this horrid life disrupting condition.

[Mazza23]

Yes unfortunately we sometimes have to settle for the lessor of two evils I wish you all the best Marie x

[Polski]

Have you looked into the possibility of changing your diet to one that may decrease your blood pressure, and could improve the AF as well? Search on here re diet, supplements, life-style changes etc which may help AF and would improve your health overall, giving an ablation an even better chance of success.

If you could find a rate-control drug which was not a problem, it might make you feel a lot better. When you are in SNR your body gets it's full quota of oxygen, and that would give you a lot more energy. Why not ask for more details of the trial he is conducting, then you could make a decision on the grounds of facts, not suppositions?

[traveler65]

@Stephanie6637 Come to Rochester NYS,USA and go to strong memorial Hospital. You will see a great electrophysiologist and you will not have to wait 6 moonnths (sorry, I know this is not a practical solution--it just makes me angry that you have to wait 6 months and the doctor wants to use you in a drug trial. All those drugs you are taking. 1st of all why not control the blood pressure--ex. an arb and diuretic; and then warfarin to prevent a stroke and something like sotalol for the afib while you wait for the ablation) Are you in UK, Australia, Africa or the USA?

[Stephanie6637]

Hello traveler65. I am in the uk. As my Gp said my blood pressure is finally stable and at an acceptable level so she would rather not risk upsetting it after 5 months getting it to this level. I really dont want to take a different drug every month for 3 months with all the side effects that will come with them just to fulfil the consultants trial. I will go back and see him and tell him its a no i will just wait the 6 months. My Gp said she will do her best to keep me as well as possible for the six months and i trust her. I am going to ring another Eps secretary tomorrow to see what his waiting list is and if it is considerably shorter will pay to see him and see what he says.