crystale
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crystale, April 29,  2018  10:15pm EST

Frustration

Hello everyone,

I haven't been on the new website until now.  It's impressive but a little confusing.  I was diagnosed with afib on Dec. 30, 2017.  A lot of emotions from that day up to today are circling in my head.  I have seen the EP several times since that date with no answers to the AFIB issues.  Jan. 30th, I stopped taking all of my meds since the EP said in his "humble opinion" that my AFib was being caused by 1) stress, 2) current medication, and 3) lack of exercise.  My rationale was that if I truly needed the med then we could add it back.  The EP said he wouldn't do an ablation because I didn't need one.  He doesn't like me using the Kardia and made fun of me for using it.  Told me to throw it away.  However, the Kardia was given to me by another cardiac doctor from the same clinic.  Someone monitors the Kardia from the clinic.  My guess is that there is some controversy among the doctors in the clinic about its use.  That's not my problem but seems to be my problem.

Well, certain things are a must - went back on my inhaler the following week, the next week the Eliquis.  We waited on the others meds for a month.  My cholesterol went from 150 in Sept. up to 286 in March (5 weeks after the med was dropped).  My thyroid went from 2.36 to 5.64 in 5 weeks time.  My blood pressure was elevated and after several tries at meds, we found one that I could take.  I have issues with Beta Blockers. 

I found out last month that I have sleep apnea and now have a CPAP machine.  I average about 3 - 4 episodes an hour.  I tolerate the CPAP very well.  

So, since that time I have made changes in my diet, meds, and I joined a wellness center & have been exercising since Jan.  My primary physician gave me the opportunity to take a medical leave from my job when I started having issues with AFib and anxiety.  I've been off since March 5th.  I see a counselor weekly.  The EP suggested that I see a psychiatrist to coordinate the meds. That appointment took 2 months to get.  I started back on 50 mgs. of Zoloft and a sleeping pill.  

I still have the issues with the AFib.  I still use the Kardia and have documented AFiib.  A few weeks ago I had an episode where my heart went racing off and everything went black.  Luckily I was sitting at the table and tried to record it but dropped the phone when things went dark.  Last week, during exercising I had my heart go into AFib then, 20 minutes later my heart raced back up to 150.  So, I went to my primary physician to talk to him about it.  I have also been in his office when I was in sinus tachycardia.  He raised my Cardia from 150 to 180 mg.  He decided that I need to go to the EP to talk about an ablation or mapping.  I went to the appointment and the nurse practitioner said the only thing she would do was to increase the Cardia and do a 48-hour monitor because there wasn't enough data to do anything else.  

Am I just paranoid or really frustrated?   All of my experience with this clinic has been really disheartening.  I don't think they take me seriously because of several factors.  I wait out the AFib episodes and haven't gone to the ER.  The EP's nurse chewed on me because I should have been going to the ER with the symptoms and not wait it out.  We live at least 45 minutes to an hour from a major hospital.  By the time I could get to the ER I would be out of AFib.  So, I use the Kardia more because of that.

I'll be seeing my primary physician again this week and will ask him for a different doctor in a different clinic.  Just start new.  The only tests that this clinic did was 1) 48-hour monitor, 2) 30-day monitor, 3) EKG's, and 4) echocardiogram.  The echocardiogram noted that I have 3 of 4 values that have mild to moderate regurgitation. Emotionally, I'm a wreck and don't understand any of this.  

8 Replies
  • Spencer
    Spencer, April 30,  2018  7:01am EST

    Crystale - 

    Sorry to hear about your frustrations.  I am in the same boat with you.  I was diagnosed with AFib in Aug, and the ablations started in Oct, and I finished my third just a few weeks ago.  The docs are just using trial and error on you.  This is, unfortunately, the state of medicine with AFib.  Each case and each patient are very different, and something work on some, and others do not.   So if you feel that they are just making it all up as they go... they are.  They have a bag of things to try, and they keep trying till they find something that works for you.

    Now, what you are doing with the sleep and Kardia is spot on.  Keep that up.  Sleep issues are probably the most significant cause of Afib, and once your heart gets into that rhythm, it can be tough to get it out it.   The tests the EP has done are very appropriate and typical.  I understand you on the frustration with going into the ER.  If you show up with our symptoms, you quickly become the show of the night with everyone wanting to see someone in a cardiac emergency.  My ER is a teaching hospital, so I get a lot of looky-loos.  And don't get me started on them removing my pants.  Been there six times, and each time... yep. The pants come off, and I get a huge crowd to watch my heart in AFib.  Had a line of fuzzy little interns lining up to listen to my heart in AFib because they had not seen it yet in the wild.  But the nurse is right.  If they can catch you in AFib, they can use some drugs to try and convert you back, or you get "old sparky" - electrocardioversion.  They time a substantial electric charge with your heartbeat to convert you back into rhythm.  This can go a long way to helping some.  It has not helped me, but then again, I am Abnormal and Tachy.  Realize that if you go to the ER, they are going to keep you.  So come prepared for a day or two in the hospital.  I have yet to show up at the ER and not stay for two days.

    Not sure that I helped.  But please keep us informed, and know that you are not alone and you are not crazy.

    Spencer

    Waiting on my Sunrise.

  • Jeanamo815
    Jeanamo815, April 30,  2018  4:57pm EST

    Hello, Crystale... I'm glad you have found your way back to our new forum.  Your frustration is certainly understandable with the conflicting messages  you have gotten from your  physicians.  A-fib can provoke enough anxiety and stress without you having to deal with varying opinions about treatment.  Starting "anew" with another electrophysiologist may be a good solution for you.  I hope you will find one who will listen to your concerns and set your mind at ease that the best treatment is being recommended for you. All of us with a-fib want to be taken seriously by our physicians...but that is not always the case....and that can certainly be frustrating and cause even more stress.  Let us know how you are doing.  You are "not alone"!

    Wishing you the best,

    Jean

    (My A-Fib Experience Community Leader)

  • crystale
    crystale, April 30,  2018  9:54pm EST

    Thank you, Spencer & Jean, for your words of encouragement.  I will ask my primary physician to recommend another cardiologist.  I wasn't going to do the 48-hour monitor but I probably will and just get the records for the next cardiologist.

  • Joekas
    Joekas, May 1,  2018  6:26pm EST

    Greetings. 

    I had my first Afib episode Sept last yr. It is very frustrating. I think it is so due to the fact everyone is so different in the way it feels, acts, responses to meds, triggers etc. At one point I thought I was going to go crazy after a bad experence during a cardioversion. Try to stay positive. Find a E.P. that you like and feel is working for you. Joe

  • crystale
    crystale, May 1,  2018  9:00pm EST

    Last Thursday I saw the Nurse Practioner and she wanted to do another 48-hour monitor.  So, I agreed and said that I would get it from the local hospital.  All she had to do was to send in the order.  I debated over the weekend and until last night not to do the monitor just to let it go.  I was talking a cardiac nurse and she convinced me that it would just be a good idea to do the monitor.  This morning I was all set to do the monitor.  I thought was a little strange that the hospital hadn't called to set up the appointment.  I called the hospital and asked what to do & found out that the EP's office hadn't sent in the order.  My husband said I should cover my butt and call the EP's office.  When I did - I was not surprised but the nurse couldn't get into her computer.  She had to call me back - as we were talking I made the comment that I wasn't happy with doing the monitor again.  I said something like isn't there any other test that they could do like a stress test or something.  Well, she said, "we don't do stress tests."   I finally finished with well I would do the 48-hour monitor then switch to another doctor somewhere else.  I took her off guard because I told her this wasn't the first time I had issues with the clinic.  She apologized and I ended the conversation.

  • Spencer
    Spencer, May 2,  2018  6:10am EST

    Crystale - Sorry to hear about your continued frustration with your EP.  Why only a 48 hours monitor?  Just after my second ablation, and I was having a large amount of AFib the doc put me on a ZIO-Monitor for 14 days.  It is just taped to your chest and you wear it continiously and push the button when you think you are in AFib.  Was pretty easy.  It is about the size of a small i-phone.  I put a tagederm bandage over it and was able to easily shower with it on.  One problem that I had, is that it stopped me from going into work for two days.  I work in a highly classified space and had to get the monitor approved becuase of its electronics.  Was able to finally get to my my desk and email after the CI guys said it was OK.   And, I even had a massage with the monitor on.  Just got the guy to work around the monitor... no big deal.  And it showed that yes, doc... he is in AFib quite a bit.

    So what is next for you?  When will they do the 48-monitor?  Have you thought about getting a Kardia EKG?  I use mine daily and give the reports to my doc.  He probably ignores them but they are placed in my record.

    Spencer.

  • crystale
    crystale, May 2,  2018  4:40pm EST

    Hi Spencer,

    I am doing the 48-hour monitor now.  I give it back tomorrow at 10:30 a.m.  The Kardia works great - I've been catching the AFib but the doctor (EP) won't even talk to me about them.  I did the 30-day monitor back in January & did catch a few AFib moments.  My next step is Friday when I see the primary physician.  I'm going to explain everything again - what transpired last week & this week.  Then, I'll ask for another doctor at another clinic.  There are 2 more places in town that are possibilities. I also had an EKG that showed Sinus Tachycardia.  The nurse practitioner didn't know anything about the EKG.  Even tho their office read the report.  I talked to my counselor today about the problem and she said to ask for someone else also.  I understand that everyone is treated that no 2 people have the same treatment but this is ridiculous.  On this monitor reading, I've ridden my bike a mile, Yoga (50 mins.), Dance Off (50 min. cardio exercises), and grace & resolve (focusing on balance).  I wished I could have done the Aqua fit but I can't get in the water!  I begin at 4:00 - 4:30 p.m. and stop at 7:45 p.m.  We will see what happens.

  • Spencer
    Spencer, May 2,  2018  4:45pm EST

    Crystale - Glad to hear that you are working the problem and yes, we all are different and each treatment is different.  You sound a great deal more active than I can be.  Before this, I ran for 50 mile races, now I am happy to walk the puppy without passing out.  Posted something to Normal or Not that you might like.

    Spencer.

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