Who do you ask when you cant ask the doctors?

I have some questions but the doctors here dont accept questions without an apt. So, meanwhile I am wondering some things.
1. I have read contradicting things about pvcs. I read they come and go without warnning.
    They never go away.
    They get worse during menopause or prior to menopause.
    They get better or worse as you age.

    So, my question is, if you have them in the thousands daily, is there a chance they will get better or do they
     always get worse?

2. I have read that pvcs after exercise are dangerous. Something about people and pvcs during and post exercise
     have 2xs the risk of death from them, yet there is nothing they can do to prevent it.
    
     So, does this mean if you have frequent pvcs and they are now during and after exercise you need to plan your
     life accordingly? Should you not do anything that causes your heart to accelerate? If not, the thing with that is
     the more out of shape you get, the harder your heart has to work to do anything, so technically you really cant
     avoid it.

3. Lastly, can someone tell me where to find the rules for posting questions here so I can read them and make sure
    I am not breaking any.

Thank you so much.
    

[Mom2four85]

Oh Jenny I'm right there with you...I'm at question #57 lol my poor new doctors will hate me - but I'm ready for some answers instead of more questions :P

For everything I read about pvc's and other arrhythmia's there's conflicting research; which leads not only doctors but we patients frustrated.  That's like the echo question I have - I "assumed" an echo was an echo - wrong...try again - for every article I found, there was another one that said something different.  I have hundreds of links with info; pvc's arrhythmia's, vt etc and when I find conflicting ones it really makes me wonder.

I read the other day from John Kenyon? I think it was, that virtually ALL pvc's are benign; for those of us with malignant pvc's we probably  had structural heart disease in some form or another...sigh more questions - I have tests that show I didn't have it before surgery, but did after, so which do I believe - maybe my Echo was wrong?  

More troubling is the NSVT link someone just posted - shows about the same info as he said but went into specifics about what "structurally normal" hearts are. This just confused me more and led to more questions.  Just what IS "structurally normal"? Where do they get those parameters from and are they as conflicting as echo standards are?

I've read alot about "recovery phase" pvc's; because I've suffered them - another thing that is absolutely conflicting...the studies that have been done I've read are normally in a VA setting with older men already with some forms of health problems - 99% I've read are men - which means they aren't comparing apples to apples so to speak (women to women or men to men) it's just a small based study.  

Like this - http://www.medscape.com/viewarticle/571891 Recovery pvc's during treadmill testing tied to heart disease or this Recovery PVCs on Exercise Test Are Prognostic  http://cme.medscape.com/viewarticle/569721

I don't know about the rules or TOS (terms of service) I know it's listed when we first sign up, but where to find it may be on a FAQ, I'll see if I can take a look.

[jennyfi1234]

Thank you Lisa for your sympathy lol. The other thing I forgot to also ask, was, they claim if you have mvp you have more pvcs, yet they say mvp is benign. (I have mild mvp, mild tricuspid and mitral regurgitation and mild leaflette thickening)---soooooo if its benign why more pvcs?

[jennyfi1234]

one more question --is this allowed? I dont remember any rules when I joined this--if I am asking too many questions please someone dont get mad just let me know the limit!

I was wondering, on a king of hearts 30 day EVENT recorder, they said it keeps recording over itself and when we push the button it gets a min prior and after the button being pushed (something like that) anyway, so if that is the case, how can they say if something is rare or frequent, since they dont have a months worth of recording, they only have episodes you record for 3 min. ?

[Mom2four85]

Jenny; I feel your frustration and that was sympathy please don't take it any other way - I guess I'm feeling like you are.... ok maybe it was more empathy because I know what you're feeling and going through...I didn't mean to offend you or further your frustration - that's never my intention towards anyone.

I question too much I guess - I had mild mvp and TR, plus concentric LVH and dialated left atrium and they considered that "normal" told me I had a structurally normal heart but I don't understand it.  Funny thing is, they couldn't see my pulmonic valve but yet it was ok? if they can't see it, how can it is normal?  

Did you read my post on echo's? We get diagnosed or not diagnosed with something off of an echo and there seems to be no standard to the measurements?  We go along as patients and rely & trust testing such as this and doctors tell us nothing is wrong based on these tests, so why not question what the standards are?

anywho; I'll leave the rest of your questions to the "experts" and let them answer - or you can go to the heart disease expert section and post to see if a dr will answer your questions - if you don't get in the first time, keep trying at different times of day or night

also another thought is try David Richardson of All Experts; (www.allexperts.com) he's a retired cardio who takes questions - I think 3 a day and has a wealth of information he shares =)

take care & hope you feel better

[April2]

I think you're asking some really good questions, Jenny, and I don't see anything wrong with you asking.

Apparently, pvc's are very common and many people have them with no problems, and don't even feel them. I'm one of the lucky ones, along with you guys, who do feel them. I can go long stretches without having any and I don't think I get them as bad as you but I've learned to ignore them usually, unless they're real bad.
I noticed mine started when I started having gastro problems and then colon surgery to remove a mass in my colon. I do think there seems to be a link with our digestive system and pvc's. Have you ever had any digestive issues?

I did the stress test and all that too 3 years ago and got more pvc's after doing the treadmill, which I heard wasn't good, but the other tests showed nothing wrong with my heart so I let it go.

I sure hope you get some answers soon and feel better soon!

[tom_h]

The King of Hearts event recorder is one of several event recorder available.  That's a catchy name, isn't it?  The device has a looping recorder and is continuously monitoring your 2 leads.  If nothing is happening, the old data "scrolls" off the memory and is overwritten by new data.  When an event happens, you either press the Event Button, or high and low PBM set points are pre-programmed into the device and it will auto trigger when these points are exceeded.  My recent recorder had both.  Either way, when an event happens, the recorder goes back a specific amount of time (which again is settable) and records up to the event marker (a beep of several beeps), then records an additional (again settable) amount of time before it stops, and saves that event. So let's sayyou get an SVT event:

1) you press the button, it jumps back say 1 minute, and records the start of the event, and some time after the event marker.

2)  It may stop recording after that as my device did.  It will do so with a series of beeps.

3) So, your SVT continues for 5 minutes before you suddenly drop out of it. The recorder will do nothing because the rate is within the setpoints now.  But this is when you press the button to show the conversion from SVT to NSR.

4) The recorder will hold a number of events.  The one I used held 3 events.  Once filled, it will lock and will not record any more until it is played back.  After that you press the erase the button, and you start the process over.  When the third event it recorded, it will signal you with a number of rapid beeps.  Mine also had reminder beeps me every 30 minutes.  It is good to get these off the recorder asap because if you're filled up, a significant even may happen and you  won't be able to record it.


During the 30 days I had my recorder, I experienced many PVCs, but the recorder never auto-triggered.  That means I had to press the button when I wanted to record a significant PVC event.  Once you complete the first cycle, it becomes second nature and I even got to know the people on the other end of the line when I phoned them in.  I'll can tell you that if it weren't for thislittle device, I wouldn't have had the opportunity for an EP study.  When my cardiologist received my first SVT event, he sat up.  I got a personal call from him to make sure I was OK, and he increased my dose of Metoprolol.  For me it was an normal occurance!  Hope that helps!

[tom_h]

I'm sorry!  I reread my post and there are some significant typos.  I'm trying to work and type at the same time.  I wish we had an edit button here!

[tom_h]

....Some more thoughts on the 30 day recorders.  Mine was a very simple device.  I had to hold it up to the phone mouthpiece, and play it back like I was using an acoustic modem from the 1970's.  It was a joke!  If you press the event button by mistake...too bad!  The event is recorded and it counts as one event.  I did this a lot, and I informed the tech which event was inadvertent.

The recorder has no provision for event time stamps; at least mine didn't.  So it helps if you jot down times and other observations because the tech will probably ask you what was happening when the event occured.

I'm an engineer by profession, and by the 30th day I had a wish list of things I'd do to it if I were designing one.  The problem is, they're designed to be used by a kid or an elderly person; one size fits all.  For the user that has a llittle tech savy, they could be designed to do so much more.  

[jennyfi1234]

Lisa, I wasnt upset at all :)
Tom--I guess what I am trying to say, if they give it to you for 30 days and you call in and play the ones that are really noticable---how can they fairly say if you have them frequently or non frequently since they are only looking at what you call in. I mean, I wish I could have just been recording all day long for 30 days then they could go over the whold thing then they could count it up and say if something was rare or frequent.
I dont know, I found it frustrating also that the people on the other end would sound irritated that you called in a half hour after you just did. Then of course it would happen that as you have the thing stopped so you can play it back for them, they take 30 min. to call you back--30 min. that you were not being recorded and during that 30 min. something unusual occured that you wish you could have had recorded to know what it was. Then of course I got back the report and it says "one possible 3 beat run pvc with rate of 138" and I question the EP he says "I dont see any 3 beat run"---so who is right?

[tom_h]

So here I was gassing away, and you already went thru the whole thing.  Sorry about that!  Well, maybe it'll help someone else.  At anyrate, I think it depends on the lab that was doing the monitoring.  I think I probably called in once a day.  For me, they were looking for SVT.  I recorded some PVC, but if pushed the button  for every PVC I had, I would have called in several times a day.  ...and fortunately, I was always able to get through.  Never had a problem in that regard.  So yes, it give a wider picture of your problem, but it's far from complete.  This is what bothers me about the current monitoring technology.  What the size of flash memory available today, you should be able to record days of continuous monitoring without having to call it in.  "Calling it in" is the problem.  If you could download the file and email it in, you could send much larger amount of data, and it would be far more accurate than using a telephone. LOL!

[jennyfi1234]

No problem. lol I think you should invent that dile we can download and email in! lol I am all for it!

[Janpes]

When they were checking my heart paps, I got a handheld ECG machine about the size of a phone.
Whenever an attack occured I just put it under my bra line and pressed start. It would record 30 seconds and save it onto a memory card. It was easy to use and could record as many as were happening.
When recording you just kept the machine in your right hand with your index finger on the conducting part, with the other conducting part on your chest. It shows the date and time of the attack, the readout (that you can check yourself I mean the picture of the waveform) and it also tells if it is an irregular rythym. I had mine for 3 weeks and was very pleased with it.

[Janpes]

Type this into your browser
Omron Portable ECG EKG Handheld HCG-801 Monitor
this is what I had for the 3 weeks.

[jennyfi1234]

Thank you!

[Iatrogenic]

"Did you read my post on echo's? We get diagnosed or not diagnosed with something off of an echo and there seems to be no standard to the measurements?  We go along as patients and rely & trust testing such as this and doctors tell us nothing is wrong based on these tests, so why not question what the standards are?"

Thank you.  You have just helped me decide not to have an echocardiogram.  It's true.  There are no real standards.  (I did not see your echo comment, unfortunately).  I sure don't want, nor do I need to be told something that could be challenged twelve ways. But, if we're all just guessing - that's not very comforting is it.  Better just to live while one does.