I've had this irregular heartbeat for quite a few years. I alway's get conflicting information from Doctors, get passed around from test to test, then eventually stop going.
I got a new regularDr, they did an EKG and began to panic (I'm pretty used to that)
They schedule me an appointment with a new Cardio dr, he did an echo and then a catheder.
Hesaidthat I have an enlarged heart (heard it before) and my heart is very week, and of course the irregular beats.
He said that there was nothing he could do, and send me to a Cardio physiologist. He looked at everything and said it was very serious, ordered me a "life vest" (exterior defib) and then ended up doing an EP study and a Catheder ablation. Prior to the surgery, it was 95% it would work, in recovery it was 50% and by the time I left it clearly didn't.
He worked hard at fixing it, 5-6 hours straight in there, I still have the life vest but have decided not to wear it 24/7 anymore. I was supposed to wear a holter yesterday but past on the opportunity, and I have an appointment with him in the morning.
Im a little frusterated to say the least, I get answers anywhere from I'm at serious risk of sudden cardiac death, to just go on a mediterraen diet.
This started for the most part 5 years ago, it's one organ and only a couple moving parts and some electrical stuff
Is it just me? Do many people go thru this?
what did they say is wrong with your heart or causing it to be very weak? did they say what your EF is?
you may want to get a copy of all of your test & surgery results and go to Cleveland Clinic in Weston - they've been recommended to me because I also have a difficult case and can't get answers.
Please listen to the dr and keep the life vest on at all times; it may save your life if a doctor thinks you have something serious enough to warrant having one.
the other thing is, I can't believe they didn't do a holter when you first went in; that's a normal part of a full cardiac workup here and can yield some answers along with echo, ekg, and stress test seems a little backwards to me to do a holter after surgery but what do I know :P
Hi, they have said that I have scar tissue and it's enlarged, and week. I don't know what the EF is?
Today when I went in, the Dr was seemed amazed about the stress test results as they seemed to show that it is not week, even though everything else said it is.
He said that there are 2 options, Go to the Cleveland clinic (in Cleveland) because I would need a certain type of ablation where they go around the heart sack an in a certain place that is tricky (only 2-3 dr's in the Country can do)
Or option 2, try medication. He put me on Flecainide and said it may work, or it could make it worse so I have to wear the Life-Vest again.
Then I go back in 2 weeks and get the Holter, then 3 weeks to follow up.
If it works (stops the PVCs) then Im to do another MRI to see whats going on as he thinks that all the extra beats are throwing all the tests off?
Thanks for your help, it gets tiresome dealing with this stuffand trying to figure it out as the situation changes every visit/dr.
Good luck Mike. Wear the life vest while you try the medication. I understand how you feel. I went to an EP recently who told me my latest holter was "bogus". I went back to my cardiologist who said it was a good scan and accurate. Short of going to med school myself (which I should have done when I was younger), I don't know what to do. I was married to a doctor for 20 years, and I will tell you that some of them are idiots!
I think we all know what you're talking about; doctors certainly aren't the greatest at explaining things so patients can understand. I've chased answers for 2 years and still don't have many.
I would go to CC and have the procedure done; they may be able to find what's going on and take care of it while in there. It could be that the scar tissue is causing issues too; did they say that's the case?
I've had tests that show I'm going to die at any minute my heart's weak and failing; then the next test that says I'm fine. It's really frustrating I know and I still don't quite understand how my heart could be structurally normal on one echo; yet the next I have a genetic heart condition or that my heart just "morphed" into malignant arrhythmia's.
good luck finding some answers and whatever route you take with the procedure or meds
I'm not exacty sure sure what they call it (clealry they are not sure either) I've heard a lot of terms, cardiomyapathy? LVM, bigeminy and something the starts with an m and some tracil,,something I think :) Sorry, I've heard so much and don't take good notes, they start with one thing and I get caught up with that while they continue to talk.
I have to wear the Life Vest because they feel that I'm a high risk of Cardiac arrest, or SCD
Thanks dmac, I'm wearing it 24/7 it's really not thatbad (considering the alternative)
I read that the Flecainide should only be taken in the hospital, and that approx 6% will go into Carrdiac arrest (I should never google these things) I got busy this morning and didn't take it until 11:30, didn't feel very goog today (probably nerves) but my pulse shows 66bpm
Haven't seen that for awhile so maybe it's working
I spoke to the Dr about the 6% CA rate, and she said that people that take Flecainide are usually 80 or 90 years old so I should not be too concerned, plus I have the life vest.
I started with this stuff about 5 years ago, out of frustration I just quite going.
I've decided that my Boycott with the medical community really didn't inspire them to change, so now I'm back as on the roller coaster again.
Just like you, most tests show that I'm on my death bed, others show I'm fine "just have additional heart beats"
I should know something in a couple of weeks, until then I'm wearing my electroshock Ironman rig.
I would definintely do as bbxx says and get a copy of all of my test results so you know what you're dealing with - send in a written request for a copy for your personal records and continuing care...some dr's send them for free while others charge say $1 per page.
you do need to find out what type of cardiomyopathy you have and what caused it because it may further weaken and enlarge your heart. CM makes it harder for your heart to pump blood and can lead to heart failure if left untreated.
They either need to treat it, fix it or put in an defibrillator so you don't go into cardiac arrest; which could be deadly.
I'll request all the records after this next MRI so I have that one also.
If the Flecainide works, they tell me that they should know more as they
could get an accurate MRI.
I'm not sure if it was myocaritis or not, but everything seems to be
an "educated guess" at best anyway.
I did find an old note saying E.F. 40-65Y
but then the next appiontment I was told it's @20%
I think if they can reduce the PVCs with the meds,then do some tests they will know more.
They showed me the internal defibrillator and I think that's were they are heading.
For now I have the External one.
Thanks and have a great weekend.
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