defibrillator

2 months ago, I had textbook symptoms of chf, checked in to a hospital, and was diagnosed with CHF with an EF of 20.  Since then, I am on heart medication, lost 35 pounds, follow the low-sodium diet, and exercise daily.  I am a male 33 year old.  I've embraced my new lifestyle change.  Have another 40 pounds to lose to get to my 180 pound weight target.  I've been feeling great and upbeat.  
Last week, my follow up echo was determined to be 32.  My cardiologist told me the threshold for needing a defibrillator is 35 or below, and suggested I get one.  He referred me to an electrophysiologist(?) about getting more info on defibrillators.  Also, he mentioned the EF most likely will not improve since after 2 months of strong heart medication, the heart is considered "scarred" and the ef will not change from now on.  I will definitely get a second opinion on what my ef is and what i need to do.  Also, my doctor determined my cause of chf to be idiopathic(?), after ruling out drugs, alcohol, artery blockage, or viral infection.

My questions:  What does idiopathic mean in laymen's term?  Is it true that my EF will not change?  Is a defibrillator truly needed for my situation?

[Momto3]

Hi bridgebuilder,

Idiopathic is a term used to mean "unknown" cause.  Kind of like it "just happened" with no real explanation.  It is still possible for your EF to improve, but I would still go with the defibrillator.  As your doctor said, an EF of 35 or less generally gives cause for an ICD.  My dad had an EF in the mid 20's for years.  He started seeing a new doctor and has since had an ICD put into place.  Initial reports indicate an improved EF!  The report said 42%, but the doctor said we should not assume that is entirely accurate until he runs the second test (sometime this Fall).  My Dad's defib has a 3rd lead which helps the heart to contract in a more synchronous manner (less stress on the heart).  Do you know if you will have 2 leads, or 3?

Are you really a bridge builder?  Pretty cool!

Connie

[bridgebuilder]

Thanks for your response.  Regards to the number of leads, I will meet with the specialist in a week.  Defibrillators are completely new to me and I'm sure I will get alot of info from the electrophys specialist.  As a newbie to this, I am obviously concerned about a device being attached to my heart, maintenance, pros/cons, etc.

btw, yes, i work for a construction company that builds highways and bridges. It's gratifying to know I'm driving over a bridge or highway that I helped build.  It truly is pretty cool!

[maggiemag]

I respectfully disagree with your doctor, although I am not one!  2 months is not very long a time to give the heart to recover.  Most doctors won't even do repeat echoes but every 6 months, some only once a year.  I think the guidelines say to wait at least 6 months at OPTIMAL drug dosage before implantation.  Your EF could go way up in 4 more months, in fact I would venture to say likely since it has already come up so much in just a short time.
My EF was 15% at diagnosis, and I went to 55% in about 3 years or so.  You need to be on target doses of Coreg (25-50 mg. twice a day) and your ACEI.  You most likely haven't reached target doses yet.  You might want to consider getting a heart failure specialist as it doesn't sound like yours is one.

As far as the third lead goes, that would be called a bi-ventricular pacer.  It has been shown to be miraculous for some CHF'ers.  However, you must have a significant left bundle branch block on EKG to qualify.  That means your heart is not beating in synch.....the one side lags behind the other side.  I believe you also have to have reached target doses on meds before they consider a bi-v pacer/ICD combo.  Unfortunately I did not qualify for that.  (Or fortunately since now don't need it!)

Idiopathic means that the physicians do not know what the he** caused your CM.  When they have ruled everything else out, that's what they call it.  One thing though, mine is probably considered familial as 30% of idiopathic are familial.  My twin sister has it also although her EF has never been below 45%. The treatment is the same though, so it doesn't really matter.
Congrats on changing your lifestyle.  The low sodium diet is CRITICAL and attitude and exercise, with physician approval of course.  You will be ok, I promise you.  If down the road later, they determine that you DO need an ICD,  by all means go for it.  Think of it as a paramedic in your pocket.  Hope this helps!

[bridgebuilder]

Thanks for your response.  Regarding Coreg, I am taking a substitute, carvedilol,  at 12.5mg twice a day.  I will definitely ask my doctor about target dosage.

[Momto3]

Maggiemag brings up some excellent points and she knows all about this stuff!!  Great questions for the doctor.

Very cool on the bridges!!  Do you work in one particular state?  I used to work for a company that manufactured "strand" used in the construction process.  

[Dr Santos]

Hi,

How are you? Were you able to get a second opinion?

It is good that you are embracing your new lifestyle without difficulty. Idiophatic is indeed the term used when all other differentials have been ruled out. It is highly recommended that you have regular follow-up appointments with your cardiologist for monitoring and checking on your progress. Laboratory test may be repeated such as  an electrocardiogram, a chest X-ray, or an echocardiogram at these visits.

This link may be helpful with all your questions on defibrillatorv or ICDs: http://www.webmd.com/heart-disease/abnormal-rhythms-icd

Take care and keep us posted.

[bridgebuilder]

Hello Rowena

Well I got a second opinion recently from a doctor who is the chief of heart failure department at another medical group.  He ran a quick echo and told me it was at 40, improved from 32, improved from my original 20.  In addition, he modified my meds, particularly cardovidol at 25mg twice a day, instead of 12.5mg.  His opinion is that it may be virally caused, and that the e.f. most likely will get back to normal.  I have the official 45 minute echo scheduled in a month with him.

I visited the electrophysiologist from my original cardiologist a week prior to my 2nd opinion, and he is having me wait to get another follow up echo with my original cardiologist, since he thinks it's too early to discuss defribrillators.

So it looks like I'm not out of the woods yet, but it's promising.  My follow up echos with my 1st doctor and 2nd opinion doctor are scheduled within a week of each other, so I'm curious to see what these independent e.f.'s will be.  I'll keep you posted.

[Momto3]

Sounds very promising!!  Fingers crossed for a great outcome.  Keep us posted!

[Encephalomalcia]

Doctors usually do not recommend defibrillators unless you really need one.  My mom did not get hers until her heart stopped and she fell hit her head and needed brain surgery.  Research to make sure that you get a good one.  My mom had one for 12 years Medtronic brand, then had a new one put in after the 12 years another Medtronic brand.  My mom just recently passed away from heart valve surgery.  Her EF was 35 when her bottom part of her heart stopped working.  Do not get to hung up on the EF numbers.  The main question is how strong is your heart.  Pressure builds up in the heart and the heart pump gets weak.  An angiogram can measure the pressure in the heart valves.  Take your medication as the doctor prescribes.  

Take care.  

[SomewhereInND]

2 months is too quick.

I had idiopathic CHF, EF  of 15-20%, 8 years ago, at age 37.  Minimal change after a year.  After about a 1 1/2 years it got up to 35,  but has slowly been coming down, and now is 25.

Because I was so young,  2 of the 3 doctors I talked to, wanted me to hold off as long as possible,  because of the need to have to possibly replace batteries too many times.    

I am now 45 and have it scheduleee in two weeks.

[gmachris518]

I am just a layperson with CHF and have recently had a 3 lead ICD installed.  If you need one, then it's a great device, however, I wonder how you would do your job with one in place.  

A defib/pacemaker is about the size of a cell phone, and it's placed just under the skin, with the three leads threaded through one of your arteries and into your heart where it has little hooklike devices that imbed in the wall of your heart and heal into place.  Mine is on the left side, so that I can continue to hunt big game, but it's in a bad place for a seatbelt(as a passenger with the hubby), and I am constantly reminded that it's there, since it rides on my ribs, with no fat above or below it.  The batteries have to be replaced every 6-7 years, and I'm not looking forward to that, but I guess in my case the benefits really do outweigh the risks.

In your case, at 32, with a very short term diagnosis of CHF, I would definately beware of doctors trying to sell their stuff to you.  A ICD runs about $250,000, plus follow up visits for the rest of your life, and battery changes every so often.  If you truly need one, then go for it, but don't just get it, make SURE you need it.  Also, once you have one, it's darn near impossible to get health insurance, so don't give up the insurance you have if you can possibly avoid it.

With an ICD you will live the rest of your life knowing that someday you might get the charge of your life.  It's been said that the ICD has the ability to knock your socks off with an electrical shock that you'll not be wanting to experience more than once.  

Then, when your old and gray, and your body is giving out, and you're ready to make an exit from this world, whether the ICD is shocking you every time you try, or it's batteries have worn down, it will have to be removed.  I realize it will be removed from a body that no longer needs it, but personally I don't want anyone hacking on me when my time comes....so that something to think about.

Now, about your job...totally awesome....but I wonder if you would be allowed to continue doing it after having an ICD of any kind, no matter how many leads it might have.  Actually the fact that you even need one should be affecting whether you can continue your chosen profession, or not.  I know there are safety rules that must be followed, blah, blah, blah, but I wonder if your Super would even allow you on the job site, much less doing any high work...or do you ever leave the ground?  Doesn't matter, I guess, but it seems like there wouldn't be a Super in the business that would give you a fair shake, so make abosolute sure you NEED what all of these doctors are trying to sell to you.

I don't mean to hang crepe all over your parade, but I thought a dose of reality from someone who is wearing one of these contraptions, might help you on your way to deciding what to do.  

If I had it to do over again, knowing now, what I didn't know then, would I do it???  Probably, but I'm almost twice your age and I had been living with CHF for about 4 1/2 years, taking the meds, etc., when they finally decided my EF wasn't going to improve.  Am I glad I had it done, the jury is still out, but I don't like the idea of actually needing it someday, and having to experience what it's designed to do.  I also, don't like the idea of having it removed when I die, but I have visions of what will happen when the body dies, and the defib is still trying to start it up again.....not a pretty vision....and I wonder how many jumpstarts the batteries are capable of before they no longer have the ability to do their job....I'm hoping just one, maybe two. :)

In any event, I wish you all the luck in the world, and I hope I've shed a tiny bit of light on what to expect.  Take care and take your time making up your mind.....but not too much time.......