call from nurse

Hi everyone, I went for my pacemaker check on Tuesday and the doctor told me that I was having atrial tach. Heart rates in the 120's for 12 mins. Wants to start me on flimicade? He told me to not being doing anything to strenous and swimming. Yesterday afternoon I get a call from his nurse saying I was in junction rhythm in and out and having fast heart beats with pvc's and told me to go to the ER. On the way to the ER I paged the doctor and I my doctor was on call and when I spoke to him he said that I was only in junction rhythm because he was checking the lead on Tuesday, that my pacer is working fine and nothing to worry about just to fill the meds and see him in 3 months.

I am scared to death. He said his nurse didn't know how to read his notes and that is why she is telling me something different.

I am suppose to be moving to TN this weekend a rural part of it and now I am to scared to go. But they have Vanderbilt down there and I have already got a appt with them on Aug 24. I am just not sure that my doctor is paying enough attention or even listening to what I am saying.

Someone please give me some feedback.

Thank you,

Tina

7 Comments

Flecainide - simplified, 2nd try

by donr - 2013-07-27 01:07:50

Tina: Here's the scoop on Flecainide - at least the way MY CARDIO treats it:

Flecainide is a powerful anti-arrhythmic drug & very useful. It is NOT without its negative sides. It can cause subtle changes in your EKG that you will not sense. My EP had an EKG done on me before I took the first dose; then he told me to go in after 48 hours to have a second EKG done so he could compare the two to see if it affected my heart electrical function. Notice that he specified 48 hrs, NOT 2 days. The office was prepared for me to come in & did the EKG & got it to him immediately. He read it & was satisfied that I was OK.

As a follow on, I have an EKG every three months now to see if the changes occur in it. After nearly 4 yrs, it has not happened, but they follow my EKG's like a hawk follows a mouse in a field.

Really, you need to be wherever they will follow you up after the startup of Flecainide. I'm surprised that your current Cardio has not told you to come in for the EKG before & after. BUT...apparently a lot of them do not follow up rigorously like MY Cardio does.

I cannot tell you to stay put if you have to go to TN. You have to decide what to do based on where you want to go for the Flecainide follow up.

This is OBVIOUSLY affecting you severely, so you need to carefully think out your alternatives. Actually sounds like you need to get a new Cardio.

If you can handle it, stay where you are till you get stabilized on Flecainide. To do that, call your cardio on Mon AM & tell him that you have talked to several people who take it & explain what I told you about getting started on it up above. Ask him if there is a reason why he has not done what my Cardio does about the EKG's. If you don't like his answer, go to TN & see a new Cardio at Vandy.

As stressed out as you are, you need good care from your cardio & it does not sound like you are getting it.

Flecainide IS a good Med - it just must be treated w/ respect due to its side effects.

If you need more this wknd, pls send me a note. I'll be here.

Don

Hello My 2 cents lol

by mytrose43 - 2013-07-27 08:07:59

I have taken flecanide since 2005 and it has worked very well for me I have a few episodes of a-fib here and there but nothing lasting for days or weeks I do not remember having to have a ekg before i started on flecanide but that was several years ago and i have changed cardios since then anyway . I have not had any side effects that i am aware of .My thoughts are about the same as donr talk to your Dr about the situation and if you do not feel comfortable with his/her answer then move on and get started with a new Dr asap Good Luck Valerie

Answer to Don

by TinaH - 2013-07-27 10:07:10

When I spoke with the doctor he stated that the only reason she saw junction rhythm was because I was having a pacer check. I get pretty tachy when I climb stairs or do to much that is why he put me on that medication but I'm scared to take it. And yes it shows that I have PVC but he also said that is nothing to worry about. I didn't go to TN today but I am thinking about going in the morning. Where I would be living is a hour and a half away which is scary for me. So yes I got scared out if going. If I was in Tn I probably could see a doctor sooner. I just asked to see a certain one so I could get earlier if I saw someone else. It's a 10 hour drive and bum now scared to make it. I'm scared to do my thing at all. I have really lost my quality of life since the ablation Nd the pacemaker. Please tell me about the medication. To scared to take it also.
Thank you for your help.

Tina

Getting started on Flecainide

by donr - 2013-07-27 10:07:23

There are as many ways to start people on Flecainide as there are EP/Cardios out there.

My cardio refuses to use it - he added an associate (an EP) who prescribes it all the time.

My mother was on it for several yrs before her death & when she was started on it, they put her in the hosp for several days while establishing her dose (That approach is suggested by several drug info sheets), all the time continually monitoring her BP & frequent EKG's. This was at least ten yrs ago.

If you read the drug data sheets & other drug info web sites, a few of them still recommend hospitalizing patients while establishing them on it. I asked my EP outright WHY he did NOT put me in the hosp while getting me started. He responded that it was not necessary IF you did a comparison of EKG's between just before & 48 hrs post first pill - that his experience showed that any ill EKG effects would show their ugly heads in that period.

On the subject of periodic EKG's, most of the drug info websites recommend "...periodic ECG's to check. for abnormalities..." My cardio's practice has interpreted that to be every quarter. In actuality, it has become any time I go in, which is essentially at random times during the yr.

I've gotten a fair amount of flak for my discussions of Flecainide, but I can back up my comments w/ references on the web & my Cardio's practice.

Don

Feedback for being scared!

by donr - 2013-07-27 10:07:24

Tina: Welcome back. You & I have exchanged notes before.

I'd say that you are authorized to be scared - but calm down - things probably are not a bad as they seem to you. Anxiety only makes them worse, believe me - BTDT!!!!!

At least you have Vandy to go to! It's a great hospital for cardiac patients. Unfortunately 24 Aug is a long time to wait to see a new Cardio when you feel as bad as you do now.

Please explain the following from your post: "On the way to the ER I paged the doctor and I my doctor was on call and when I spoke to him he said that I was only in junction rhythm because he was checking the lead on Tuesday, that my pacer is working fine" As I read it, you were only in Junction Rhythm because HE was checking your lead." Is that correct?

Were you REALLY having PVC's? That is a different issue, entirely.

The drug he prescribed - is it Flecainide? I take that. I can tell you all about that drug.

From what you tell me - I'm inclined to agree w/ you about your Dr. not listening to you or giving you enough attention.

Through this all, HOW did you feel BEFORE the nurse called you?

Have you filled the prescription for the Flecainide? Taken any of it?

Are you actually going to move to TN? Or were you scared out of it?

Don

Flecainide, simplified

by donr - 2013-07-27 11:07:02

Tina: I understand your situation. Flecainide is a powerful anti-arrhythmic drug, but can really be helpful. Before I give you a description of it, pls tell me WHY YOU are scared of it - what caught your attention to it & disturbs you. that will help me tailor my answer to you to help you specifically w/ it.

Don

Flecainide

by TinaH - 2013-07-27 11:07:33

The doctor just put me on it. I am very med phobic. You already know about all my anxiety and that is just another part of it. But I have not heard good things of it. And the doctor never told me this might even happen.

Do you think I should go onto TN or stay put? I hate this is controlling my life the way it is.

Tina

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