86 with A-fib, next step?

[SBGal]

Hi I am 86 and was diagnosed with SVT in Jan 2017 - my heart rate was 150. Then I was told I was a-flutter/a-fib. I was over medicated (metroprolo, digoxin and Diltiazem) and my rate came way down. I was told I needed a pacemaker, then I was put on Diltiazem only - which wasn't enough and my heart rate is 130/140. After complaining about shortness of breath and swollen ankles and feet, I asked to take lasix, she said no "she is not a fan" and she didn't have time to see me - well, then, I went into congestive heart failure, and went to the ER. They got rid of the fluid and my rates were 130/140's. Again they said I need a pacemaker - which didn't make sense for a high heart rate. I went in for a pacemaker and the surgeon said I didn't need one (!?!) that I had a fast heart rate and a-fib. A pacemaker will not cure a-fib (as we all know!) I was put on 200mg amiodarone. She did not give me a "loading dose" and it basically did nothing for me. I elected to stop it (due to the toxic side effects), I paid to go for a consult with an outside cardiologist who said to get off amiodaron immediately and try Sotalol. THEN MY cardiologist said that Sotalol causes CHF (!?) and did not want to give it to me. I am now on 120mg sustained release of Diltiazem, my heart rate is around 80. BP 120/60. I have an appointment with an EP this week. Hope to gain some direction of what is next. Getting tired of trial and error and slipping through the cracks with cardiologists that don't seem to care. Even though I am 86 I still have a lot of life to live! Any advice? Oh by the way, I am (and have always been!) asympomatic (aside from shortness of breath in occasion), have a tissue mitral valve and had the maze procedure, and am on Warfrin. Appreciate input!

[Goldfish_]

It sounds like you're now heading in the right direction and fortunate to be asymptomatic.

It may be that another ablation will be offered

I think you will find the AF assoc on this site more useful than here'

healthunlocked.com/afassoci...

[SBGal]

Hi goldfish! That is so nice of you to reply. I really appreciate it and yes the other site is terrific, thanks. I have learned so much! I appreciate your encouragement and yes tomorrow is a big day for me...I FINALLY get to see an EP....cardiologists have been little help and have instead caused me a lot of anxiety and stress. The last four months have been rough, but life goes on and each day brings a little more knowledge and a little more hope. May God bless you in your journey!

[RogersBuck]

Hi SBGal,

I have also had communications issue with hospital & local GP. The hospital wanted to put me on warfin or something similar, because I get flutters in my heart that may cause clots. That was before christmas & I still haven't had anything resolved yet.

I can underdtand why you get so frustrates. I am glad you are finallly getting youself sorted out, good luck with your appointment with EP.

Steve.....

[SBGal in reply to RogersBuck]

Hi Steve thanks for your comment. Well, I am back from seeing an EP today and the outcome was a little ambiguous. He said all doctors treat afib/aflutter differently and it is common that various cardiologists have different opinions. He suggested Amiodarone followed by a cardioversion and continue on Amiodarone for 1-2years. This is out of the question for me as I will not take that drug. He said that Sotalol can contribute to CHF (so can your cardiologist ignoring you!).... and instead offered up dofetilide. Less toxic. Said I would be on this for 3 days in the hospital and then get the cardioversion and see if I go into NSR and stay. He said there was good chance as I only went into afib/flutter in January (3+mos ago). He will discuss this with my new cardiologist and in the meantime he said to take 120mg SR Diltiazem 2x's a day. Which is what I wanted to do since January! Two hospitalizations later, they over medicated me, under medicated me, and now....I feel it is more "just right" - like the 3 bears! But seriously, when they had me on 120/120mg I was in CHF and my cardiologist didn't have time to see me and told me she wasn't "a fan of Lasix" so left me untreated for six weeks. Meanwhile my lungs filled up so how could the 120/120 Diltiazem even work properly?? I am more hopeful now: on Diltiazem WITH 10mg lasix, and no metroprolo - will see how I do. So far I have been with 119/60 blood pressure and heart rate of 69-70. I'm VERY happy with that .... AND NO PACEMAKER! Had high hopes for the EP but in the end I'd say our meeting was just so-so, much of his consult was canned info and hard to tell if he really spent time on my case. All part of a giant HMO, Kaiser a bit of a factory. All in all I'd say it was worth the two hour drive as I got a "second" that I really didn't need a pacemaker! (At least not yet).

[SBGal in reply to SBGal]

I am now on 180mg Diltiazem and 120mg at night (300mg total instead of 240mg) - my heart rate however is averaging 130 bpm. I would have bought it would come down but it appears it hasn't. Also my legs are puffy even though I take 10mg Lasix. I took 20mg three days ina row with minimal difference. Now I'm back to just the 10mg as I was told by the NP to just do the 20mg three days in a row. Any thoughts?? I feel like I'm navigating this I get alone as the cardiologist just suggests Amiodaron which I don't want to take! Do I need a beta blocker in addition to the Diltiazem, or maybe Digoxin? Metroprolo made me very short of breath, so I'm thinking a beta blocker isn't the answer.

[Mazzad100]

Hi,

I have had SVT for 7 years That I have managed myself without medication. Eight weeks ago I had an episode of palpitations that i couldn't stop, I was taken to A and E and was told it was atrial flutter and that i should be on a blood thinner, they also referred me to the arrhythmia clinic and I have to wait until June. Tried to get an earlier appt but no luck!

[SBGal in reply to Mazzad100]

Hi Mazzad100 - I am on Warfrin and aside from having to watch my spinach intake I find it to be no problem. I can not take the other thinners because I have a tissue mitral valve and I was told the newer blood thinners have not been tested with tissue valves. Better to play it "safe" with Warfrin (if you can call it safe!) As for waiting for an appointment I hear you, I was told I could not get a cardioversion until "mid-May or early June", and yet through a private practice (non HMO) it takes 1-2days to get something like that scheduled. Unfortunately I am stuck in the system (due to my insurance plan) and just have to patiently wait. Sounds like you too - waiting is a learned skill! Wishing you all the best and let me know what you find out from the arrhythmia clinic (wish I had siemthing like that here but don't....just cardiologists with various opinions).

[Thomps95]

It sounds like there is ageism in the system. Terrible. It's a miracle you survived all that fumbling. It seems everyone needs an advocate when they are swept into the medical system. I hope you have people you trust to share in overseeing your treatment, whether a family member, friend, or caring doctor.

[SBGal]

Thanks Thomps95! Yes God has been good to me, and my daughter too, she has been by my side being my advocate. Right now I'm on 180mg Diltiazem and 120mg Diltiazem at night, but my rate is averaging 130. I wear a event ,monitor but it only captures rates when I push the button. I try to push it a lot so it has data to go by. I only have 5 more days wearing this thing. Otherwise when I use my electric BP cuff and my finger oximeter I get 70-80, but the heart monitor says 130-140! So I don't really know what to believe. my ankles are swollen even though I take 10mg of Lasix per day. Just wondering what should try next? Cardiologist on vacation so no idea what she will recommend...although she is the one that said to go on Amiodarone which i won't take. Maybe I will start my mag supplements? The EP I went to said he recommends Dofetilide.