Heart Disease: Let’s Talk About the Emotional Side

Feeling frustrated with diagnosis/misdiagnoses. Jan. 2020 loop device was implanted in my chest. Was to be notified if disorder was observed from a monthly readout that would be sent to cardiologist. End of Mar 2020 rec'd first call with message the DX of AFib as identified by this "loop" in my chest.
Asked when they knew that - Dr. noted in Jan. within a day of loop insertion. NO call for three months.
Connected me with electrophysiologist thru telehealth visit. Said he reviewed first 3 months and agreed that AFib is DX. Prescribed Flecanide, Metoprolol and Eliquist. Eliquist 2x/day. Flecanide and Metoprolol as a "pill in the pocket approach" which I was to take when I did not come out of an episode within 15 - 20 min. I advised I cannot always feel these when they occur. Was told use when I can and if I don't feel it don't worry about it!
He advised me of the high rate of severe side effects of these drugs. Was not an encouraging message for me to use. Spoke to pharmacist questioning the dose that appeared to be higher than I would expect. He indicated concern for the dosage prescribed as well asking me if I was comfortable to confirm with my provider. Felt there was a possible error in dosing.
I spoke to provider who confirmed it is the dose he wanted me to take...... yet another reason to now be concerned with dose.
Said continue his direction and he would call if he noted any other issue and me to call him if I had any problems.
Fast forward 3 more months on my follow up telehealth call w. electrophysiologist. Advised me that he felt the device was providing erroneous data! Said he did not think I have AFib now. Said he felt I was just having PVCs. Now I am more confused, concerned.
Glad I did not take any of the metoprolol nor flecanide. BUt am continuing Eliquist as it is thought I had a TIA in Sept 2018. He suggested remaining on that vs aspirin that I had been advised to use in the past.
Now here I sit wondering what diagnosis is right? How should my treatment plan go? How am I to confirm diagnosis. All providers in my state are doing telehealth so no EKG is being done.... and when it was (none since last year) it sometimes catches PVC but did not catch afib.
What is purpose of these devices (LOOP) insertion if they do not show an accurate picture. How could one call me with a "confirmed diagnosis of AFib" based on first three months finding. Then three months later say he has confirmed I do not have AFib. What is a reliable way to confirm.
This dr had planned to do an ablation as soon as the elective procedure ban is lifted.
I thank God we did not get t that stage yet. Have time to determine if that is a procedure I need to go thru. But the other side of that thought is hat if I really do have AFib and is not being treated or monitored accurately? I am getting messed up around all this.

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Feeling frustrated with diagnosis/misdiagnoses. Jan. 2020 loop device was implanted in my chest. Was to be notified if disorder was observed from a monthly readout that would be sent to cardiologist. End of Mar 2020 rec'd first call with message the DX of AFib as identified by this "loop" in my chest.
Asked when they knew that - Dr. noted in Jan. within a day of loop insertion. NO call for three months.
Connected me with electrophysiologist thru telehealth visit. Said he reviewed first 3 months and agreed that AFib is DX. Prescribed Flecanide, Metoprolol and Eliquist. Eliquist 2x/day. Flecanide and Metoprolol as a "pill in the pocket approach" which I was to take when I did not come out of an episode within 15 - 20 min. I advised I cannot always feel these when they occur. Was told use when I can and if I don't feel it don't worry about it!
He advised me of the high rate of severe side effects of these drugs. Was not an encouraging message for me to use. Spoke to pharmacist questioning the dose that appeared to be higher than I would expect. He indicated concern for the dosage prescribed as well asking me if I was comfortable to confirm with my provider. Felt there was a possible error in dosing.
I spoke to provider who confirmed it is the dose he wanted me to take...... yet another reason to now be concerned with dose.
Said continue his direction and he would call if he noted any other issue and me to call him if I had any problems.
Fast forward 3 more months on my follow up telehealth call w. electrophysiologist. Advised me that he felt the device was providing erroneous data! Said he did not think I have AFib now. Said he felt I was just having PVCs. Now I am more confused, concerned.
Glad I did not take any of the metoprolol nor flecanide. BUt am continuing Eliquist as it is thought I had a TIA in Sept 2018. He suggested remaining on that vs aspirin that I had been advised to use in the past.
Now here I sit wondering what diagnosis is right? How should my treatment plan go? How am I to confirm diagnosis. All providers in my state are doing telehealth so no EKG is being done.... and when it was (none since last year) it sometimes catches PVC but did not catch afib.
What is purpose of these devices (LOOP) insertion if they do not show an accurate picture. How could one call me with a "confirmed diagnosis of AFib" based on first three months finding. Then three months later say he has confirmed I do not have AFib. What is a reliable way to confirm.
This dr had planned to do an ablation as soon as the elective procedure ban is lifted.
I thank God we did not get t that stage yet. Have time to determine if that is a procedure I need to go thru. But the other side of that thought is hat if I really do have AFib and is not being treated or monitored accurately? I am getting messed up around all this.

Jump to this post

Feeling frustrated with diagnosis/misdiagnoses. Jan. 2020 loop device was implanted in my chest. Was to be notified if disorder was observed from a monthly readout that would be sent to cardiologist. End of Mar 2020 rec'd first call with message the DX of AFib as identified by this "loop" in my chest.
Asked when they knew that - Dr. noted in Jan. within a day of loop insertion. NO call for three months.
Connected me with electrophysiologist thru telehealth visit. Said he reviewed first 3 months and agreed that AFib is DX. Prescribed Flecanide, Metoprolol and Eliquist. Eliquist 2x/day. Flecanide and Metoprolol as a "pill in the pocket approach" which I was to take when I did not come out of an episode within 15 - 20 min. I advised I cannot always feel these when they occur. Was told use when I can and if I don't feel it don't worry about it!
He advised me of the high rate of severe side effects of these drugs. Was not an encouraging message for me to use. Spoke to pharmacist questioning the dose that appeared to be higher than I would expect. He indicated concern for the dosage prescribed as well asking me if I was comfortable to confirm with my provider. Felt there was a possible error in dosing.
I spoke to provider who confirmed it is the dose he wanted me to take...... yet another reason to now be concerned with dose.
Said continue his direction and he would call if he noted any other issue and me to call him if I had any problems.
Fast forward 3 more months on my follow up telehealth call w. electrophysiologist. Advised me that he felt the device was providing erroneous data! Said he did not think I have AFib now. Said he felt I was just having PVCs. Now I am more confused, concerned.
Glad I did not take any of the metoprolol nor flecanide. BUt am continuing Eliquist as it is thought I had a TIA in Sept 2018. He suggested remaining on that vs aspirin that I had been advised to use in the past.
Now here I sit wondering what diagnosis is right? How should my treatment plan go? How am I to confirm diagnosis. All providers in my state are doing telehealth so no EKG is being done.... and when it was (none since last year) it sometimes catches PVC but did not catch afib.
What is purpose of these devices (LOOP) insertion if they do not show an accurate picture. How could one call me with a "confirmed diagnosis of AFib" based on first three months finding. Then three months later say he has confirmed I do not have AFib. What is a reliable way to confirm.
This dr had planned to do an ablation as soon as the elective procedure ban is lifted.
I thank God we did not get t that stage yet. Have time to determine if that is a procedure I need to go thru. But the other side of that thought is hat if I really do have AFib and is not being treated or monitored accurately? I am getting messed up around all this.

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@jlcswell. I share your frustration. I had a TIA in January, my cardiologist put me on Xeralto and statin right away. I do not tolerate either of them. I also had a loop recorder put in and so far there's no afib reported.
Have you heard of this little medical device called Kardia? It's only about 1 inch x 3 inches. You put your fingers on it and it measures your EKG and it detects afib. My son in law had afib before and he can email the results from the app to his cardiologist if afib shows up. My daughter got me one years ago. I showed it to my cardiologist and he approves. I use it everyday for my peace of mind. It's only about $90. You can get this from Amazon.
I'm seeing my cardiologist in October and I am hoping to get some anwers to my questions. I'm not a doctor, but isn't ablation for Afib? If you don't have afib, do you need it? My son in law had afib and he had ablations done. Finally my daughter found a cardiologist from another state and when he went there, this doctor found a genetic problem that no other doctors saw. He had a surgery and now no more afib, no more meds. It pays to get a second opinion.

I hope you find the answer you are looking for, and I hope you'll feel better.

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I am so sorry you are going through all of this. I don't know where you live but some states have opened up hospitals and MD's offices for procedures. Perhaps you could drive to a neighboring state for testing? I think you might feel better with an inperson visit with a consulting electrophysiologist. I wish you good luck in getting this straightened out.

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Wow, no wonder you are uneasy. Second opinion is highly recommended by me. Personal experience on value of traveling to Mayo Clinic to get full workup. There are very knowledgeable electrophysiologists at Mayo/ Rochester. I have, as another comment mentioned, the AliveCor monitor to use w iPhone..it records your heart rhythm, and can be emailed to your cardiologist for review. Be sure to set it to a 2 minute readout. Drs. prefer to see longer strips for better evaluation. I was diagnosed w paroxysmal aFib 10 yrs ago. I took Flecainide for a few yrs, then switched to Sotalol and Diltiazem for better results. Disclosure: I also needed pacemaker for slow bpm. I have plenty of energy. I have taken Warfarin for 9 yrs. ( mitral valve repair 27 yrs ago..at Mayo Clinic, of course), so cant take newer DOAC’s. Good luck to you, but please get 2nd opinion somewhere..not all cardiologists are equal or have experience w Arrythmia issues. Getting an ablation requires a doctor who does many of them...experience matters.

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Thanks for tip on Mayo Rochester. I told a neighbor last night I may try Mayo if I don't find a place closer with a good reputation. Its an important decision. I don't have an iphone. I have a Samsung. Not sure if there is a device that is compatible with that phone. You have been through a lot. I am loving the replies I am getting. I feel supported in my mission because of you all.

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I am 70 , soon to be 71 . And on top of a list of chronic conditions , was recently diagnosed with claudication and peripheral artery disease. I was previously on all the usual meds and my blood tests were normal . Previously exercised and ate pretty well . So now it apparently didn’t matter and I’m just a time bomb for a coronary event . The foot numbness and leg pain make fly fishing impossible. Bottom line , I instantly feel very old for the first time and really don’t want to live a diminished life as an elderly person with 10 meds a day . Although I have feared death my entire life , I would chose to go today if I had that option. That’s my diatribe for today

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