Drugs Long Term!: Hi, Sat in my... - Atrial Fibrillati...

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Drugs Long Term!

25 Replies

Hi,

Sat in my hospital bed after third ablation. Unfortunately, not as successful as I hoped. My first ablation solved my permanent AF which was great but unfortunately I still get AF and need a pill in the pocket to get back out. From what I recall from a drozy conversation, my consultant couldn't find the source so little ablation was possible this time. It now needs drugs to control it: bisophonol and then rixoban. Flec as pill in the pocket. At 41, I really didn't want to be on drugs for life. I'm positive that I'm not in permanent AF and I'm not going to let it hold me back but am concerned about the long term impacts of the drugs. Would love to hear your thoughts.

25 Replies
LindaPerth profile image
LindaPerth

Hi Richard, sorry to hear that your Ablation wasn't successful. I worry too about being on long term drugs, but since I am quite a few years older at 63yrs-guess I should relax a bit. I'm new to this AF issue, had one episode just under a year ago which was corrected with Cardiac-reversion then ongoing Apaxiban blood thinners and Atenolol to control my heart rate. Right now am in AFib again for more than a week, meds doubled by GP and due to see my Cardiologist next week. My GP thinks he will want to do Ablation and I'm very nervous about it. Have a big trip to UK and USA planned starting mid August, praying this is sorted before I travel. Hope you don't mind me replying to you- its hard to find support groups here in Western Australia!!

Cheers, Linda

in reply toLindaPerth

Thanks Linda. Ablations sound scary but my experiences have been very positive and if a 4th was an option I would take it. How successful they are seem variant but it took me out of permanent AF which is great. Hope your trip goes well and the sun shines in the UK for you.

denny-62 profile image
denny-62 in reply toLindaPerth

Hi Linda there is an Australian group on Facebook, to which I belong also. I live in Brisbane. Look for atrial fibrillation austalia

Eliza2 profile image
Eliza2 in reply toLindaPerth

Hi Linda will you do the ablation before you travel? I cannot take the heart drugs since they make me sick so I had my first ablation a year ago. Things were good for several months but now heart acting up again so second ablation staring me in face as much as I want to put it off I know I need to get it done and over with. The ablation is the way to go in my opinion as the drugs have so many side effects and stopped working for me and had to keep taking larger and larger doses which wasn't good.

LindaPerth profile image
LindaPerth in reply toEliza2

Hi Eliza, Yes I hope to have it done before I travel but not sure about the length of time for recovery and whether it will impact my being able to get around. What was your experience like with your first ablation? if you don't mind sharing with me? I don't know if age is any factor but I am 63yrs old. I know what you mean about the drugs as I am on double doses right now and not feeling great.

Eliza2 profile image
Eliza2 in reply toLindaPerth

Hi Linda....I felt pretty tired and weak after the first ablation and went to airport next day to fly back to Florida from Boston where I had it done. I walked to gate in airport! Definitely would not recommend that but hospital just told me to take it easy so I thought slowly walking would be fine. Thing is I did feel fine but you really aren't. You have gone through heart trauma and need to rest. I'm due for week vacation in October having to travel and don't want to do the ablation til I come back. You do not want to be walking much rather you want to rest. I went back to work a week later which was too soon. I was 66 when I had mine first done.

LindaPerth profile image
LindaPerth in reply toEliza2

Thanks Eliza its so good to talk to others who have been through it. My first stop is London for 2 weeks then on to New York and Maine. Hope by then to be fit as was planning a lot of walking in New York 😆

Will see what my Cardiologist says on Thursday

BobD profile image
BobDVolunteer

Hi Richard and I do understand your concern regarding drugs. What I would say is that NOT taking drugs has a much greater risk in most cases. Uncontrolled AF could result to cardiomyopathy or even heart failure over time so it is much better to at least control heart rate with bioprolol. The Rivaroxaban is an anticoagulant to protect you from stroke so if you have the risk factors which point you to anticoagulation then it is a no brainer. We are what we are I guess and each to their own but I never stopped warfarin post my third successful ablation eight years ago and have no intention of doing so.

traveler65 profile image
traveler65

My warfarin is managed (dose and INR measurement) by the nurse at the coumadin clinic near my home at the medical center. She says to take care of the concern about warfarin blocking vitamin K you can eat K1 and K2 foods and adjust the warfarin dose up slightly. BUT the amount of these types of foods should be the same every day. Also the K2 types MK7 (which activates matrix pgl protein produced in the arteries to remove calcium from the arteries) and MK4 ( which activates calcitonin produced in the bones to put calcium into your bones)-- are not specifically deactivated by warfarin.--So you get to avoid having a stroke or heart attack, but still avoid osteoporosis and calcium plaque in the arteries. The same information was given to me by my electrophysiologist. I trust him because he basically saved my life, he is at a hospital that is the 3rd best hospital in the USA for heart problems, he did a residency at the 2nd best hospital in the usa for heart problem, he conducts and publishes studies, write text books, and teaches in the medical school at the hospital where he practices. This is way more qualified than any general cardiologist and family gp; The EP treats only and specializes in abnormal heart rythms.

adriatico profile image
adriatico in reply totraveler65

Hi Traveler65,

Would you please tell me what is the hospital you mentioned. I am looking for the one where I could have my ablation done. Thank you.

in reply toadriatico

It was Leeds General Infirmary. I highly recommend them nothing but positive things to say.

traveler65 profile image
traveler65 in reply toadriatico

Hi adratico

I hope you will recover and enjoy many years of healthy longevity. The hospital is STRONG MEMORIAL HOSPITAL, In Rochester New York; the Electro -physiologist is Dr. Mehmet Aktas. He is one of 3 electro-physiologists on a 4 man team-the 4th is the electro-physiology lab manager-all these people treat is atrial fibrillation. They are awesome. Ablations have risks--but the bad things that can happen, although they have happened elsewhere have not happened at this place. They also dealt with all of my rx. drug allergies, food allergies, hypertension, hypothyroidism ( take WP thyroid natural ) and other issues. They did a great job because my heart electrical function was extremely chaotic and they basically saved my life. I am in great health and fitness right now 10 months later. Look up University of Rochester Medical Center-click on cardiologists-then electrophysiologist-locate Dr. Aktas-read all his experience and published work-- residency at Cleveland Clinic etc. To avoid red tape you can refer yourself if you faX COPIES OF ABNORMAL EKG'S AND ABNORMAL CARDIO RECORDS-IF ANY DR. or HOSPITAL DOES NOT WANT TO SEND YOU THE COMPLETE RECORDS-CALMLY TELL THEM ALL MEDICAL INFO ABOUT YOU IS YOUR PROPERTY AND THEY ARE LEGALLY BOUND TO SEND YOU COMPLETE COPIES ETC.

I hope this helps you

adriatico profile image
adriatico in reply totraveler65

THANK YOU SO MUCH!

Eliza2 profile image
Eliza2 in reply totraveler65

Hi traveler pray tell who in the states is your EP and what hospital! Mine is in Boston at the 4th leading hospital. He is head of department there . If you were reading the same list as I was it would be Boston and Harvard? 2nd best is mayo clinic and 1st is Cleveland correct?

traveler65 profile image
traveler65 in reply toEliza2

Hi Eliza 2 ---------------3rd is Strong Memorial hospital in Rochester New Yiork, the Dr. is Mehmet Aktas. He and his staff did a BRILLIANT JOB BECAUSE i AM NOW VERY HEALTHY.

traveler65 profile image
traveler65 in reply toEliza2

Strong Memorial Hospital in Rochester NY--Dr. Mehmet Aktas. VERY EXCELLENT!!!!!!

maxred1 profile image
maxred1

Hi Richard. Firstly sorry to hear about your ablation process. I am in a similar position. I am 59, permanent AF, high daily dose of drugs, 15mg Bisoprolol, 320mg Digoxin, recently came off Pradaxa. Was on 300mg a day. After one year, that is the level of medication to keep my BP/HR, at 122/68, 78. I get AF attacks, every four weeks. Chronic fatigue, heavy breathlessness, upset stomach etc. I am currently ruled out of ablation by my EP. The lifetime medication regime really bothers me. I have considered other ablation options, but, I am concerned over the, ' failure rate', preferring to live like this, until perhaps my QOL, gets to where I actually need to ablate. My NHS has looped me out of the system, stating I am 'cured', obviously I am not, but as far as they are concerned, I am 'rate controlled'successfully. That is cure in the current thinking. I told myself I would give it a year, then re evaluate. The year anniversary is coming up. I cannot provide an answer for you, other than, keep positive, keep considering, and try and stay well. Best.....

PeterWh profile image
PeterWh in reply tomaxred1

Not sure when you were kicked out so to speak but things have changed in the last year.

Personally I would be banging hard on my GP's door wanting a referral to an EP ASAP. this us particularly the case with the high dosages are on. Normally 10mg of Bisoprolol is considered the max. Also 320 (I have assumed that you mean mcg not mg!!!) may be a high dose (I am on 125mcg)

If you can afford it I would see a consultant EP privately for the first time and then get transferred to their NHS list. However to get maximum benefit from your consultation write up a set of notes bullet style and collect copies of all relevant tests and notes and let EP's secretary have them a week beforehand.

PeterWh profile image
PeterWh in reply tomaxred1

I should also have said that NICE England (is not the other three home countries) now are happy for someone to go straight to the ablation option without having two failed drug regimes.

maxred1 profile image
maxred1 in reply toPeterWh

Hi Peter. My last appointment was April of this year, when, it was announced, by the Cardio that they were happy.........my response, as you can imagine, was not that positive. Interestingly, my GP, was a bit surprised also. I had planned to book an appointment with Richard Schilling, for early August. Will keep the forum updated as to my progress with this.

PeterWh profile image
PeterWh in reply tomaxred1

Brilliant. Top man. I did hear you need to book at least one month ahead!!!

Still pull together paperwork and also potted chronology starting with oldest date.

in reply tomaxred1

Thank you. I am positive and have a new energy for health and exercise. It won't beat me. Who knows what advances are around the corner too.

Rellim296 profile image
Rellim296 in reply to

I think you're spot on there, Richard. You have time to reap the benefits of the progress that will be made over the next few decades. Yes, you might have to rely on drugs, but they will become more sophisticated, as will corrective treatment and AF management.

AnneTS profile image
AnneTS

Hi Richard. Unfortunately you have just joined a small group of us for which ablations do not cut the mustard as a solution for AF. There is always hope that some new treatment is just around the corner. You are about the same age as one of my daughters who is now undergoing investigation for electrical problems. I wonder if gene therapy will be used in years to come? Hang in there I know we are baffling the EP s but they really do want to sort us out and are busy trying to find the right treatment.

in reply toAnneTS

Thanks. I'm just glad my first ablation solved the permanent AF as that was reducing my quality of life. If I have to live with it every now and then that will just have to do for the moment.

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