Update and of course more questions now.

Scared

by AgentX86 - 2018-09-18 22:02:01

I completely understand being scared. A second opinion is probably a good idea, if it doesn't take forever to be seen by another specialist. Is your husband seeing an electrophysiologist or a cardiologist? If one, then I'd want to hear what the other has to say. It sounds like a reasonable course his doctor has him on, though.

I still wonder about the whole idea of two-lead (A-V) pacemakers, though. If one needs two, the third should be automatic,  ISTM. It just makes sense when you look at the hydrodynamics.

Update

by Mcgrewcrew4 - 2018-09-18 23:19:09

@agent he is being seen by both a cardio and Ep. Today we met with the Ep but the cardiologist gave him input and agreed with this course of action. My need for a second opinion isn’t so much for what we should do but who is the best to do it. I’m just worried about something going wrong :(

Who is best?

by donr - 2018-09-19 00:08:54

All things being equal, it's the EP!  You nailed the situatiioon w/ the EF at 25%. You have to make a decision sometime.  I'm going to give you a refeerence to read about the criteria for trhe implant of a CRT-D.  You will NOT understand a lot of it, but it is pretty good science & some good figures about mortality rates with & without the CRT-D.  Muck your way through it, concentratingf on the survuival rate differences between & among the various alternatives.  the CRT-D is the way to go..  Be wary, very wary IF THE CArdio & EP are in the same practice group! IF THEY AGREE, IT IS NOT VALIDATION BY SECOND OPINION.   Any second opinion to be valid MUST come from an independent source.   Also - get a copy of the latest ECG - ask if his QRS Complex (The great big wave) is wide enough to qualify him for a CRT-D.  That, plus the aleready noted 25% EF is all you need to justify the device.  I meam justify it as a NEEDED device, not a DESIRED one.  At this oint, your hsband is in a bad situation.

Here's the reference:  https://www.medscape.com/viewarticle/734890_5

If you have questions, ask,  I'll try to interpret for you.

This does NOT look like a situation where you need a second opion.  The way I read your situation, it is unequivical & clear cut./  You just want to feel comfortable with it.  It is a strange, new world you know nothing about.  The best to you in worming your way thrrough itr.

Donr.

Going wrong

by AgentX86 - 2018-09-19 00:09:17

I don't know much about the drugs he's on.  Even if I did, I'd recommend that you read everything you can on them, particularly the common side effects and even the not-so-common.  You'll be able to spot them long before your medical team will.  You also need to know what the risks are.  Informed consent requires the "informed" part.  That's on the two of you. Web searches are invaluable.  Just realize that all the known possibilities are listed with the drugs.  Most are rare.

As far as the risks of swapping the pacemaker for a new model, you've already been through that.  It'll be even easier this time.  They just have to add a lead and swap the box.  No big deal.  No lead removal is needed, so the risks are very small and the up-side potential is considerable.

I missedwhat...

by donr - 2018-09-19 03:16:52

....Agent  caught - the meds.  they can have a BIG influence on how he reacts & feels.  Coreg, a Beta Blocker, does all sorts of things - calms the heart, slows it some, lowers BP.  Ben around since Hector was a pup, so has a reasonably deent reputation for not being unpleasant in its side effects. My wife has been taking it for several yrs w/o problems, so we would give it a thumbs up.  Enteresto has only been around for 2 yrs, so has not yet developed a real history.  Their website says 200,000 Amnericans have taken it. that's asmall number when talking about BP meds.  Ian, from the UK is our local expert on meds.  Try sending him a Pv Msg for a decent oopinion on meds.

Donr

Go for the 2nd opinion

by Grateful Heart - 2018-09-19 13:41:01

If nothing else, to ease your mind and confirm that is what your husband needs.  It will be easier to accept.  That's what I did.  I thought they must be wrong.  The 2nd EP confirmed it and offered to do the implant.  I stayed with the original EP and was glad I did.  That was 10 years ago.

I have a CRT-D.  I was diagnosed with Cardiomyopathy...enlarged heart, 24% EF, SSS, LBBB.  I just received my 2nd device 2 months ago.  It is easier when you know what to expect.  BTW, I have never been shocked by my device... so far.

We are all different and not everyone sees improvement.  My EF went to 50% and eventually 55% and has stayed there.  My heart is no longer enlarged...truly amazing!  I changed my diet...I don't use salt in cooking or at the table....I do use spices when cooking to add flavor.  I read labels for little to no sodium foods, mostly fresh anyway.  I go to a yoga class twice a week and the gym 3-4 times a week.  I've lost over 60 lbs. and am more active with structured exercise now then I was the past 30 years since I had my first son.  At the time of my first implant, I had 3 teenagers, a 21 year old and my husband depending on me.....so I understand...we all do.  Obviously, I don't know your husband's lifestyle but for me...changing my mindset and getting physically active was extremely important in an attempt to improve my health, not feel so helpless and take some control.  I figured since the heart is a muscle, I needed to exercise it.   

Sure...there have been challenges with my device...but that's life and I'm still here to talk about it...another plus.  Trust in your Cardios is very important.  Question what you don't know and learn all you can about your husband's condition and device.  It's easier and less stressful for you both when you can explain it to your family and friends.

I have been on Coreg (the generic version) for 10 years.  My Cardio said it is a good drug (as drugs go) for heart failure and helping to improve the EF.  They will start him off on a low dose and then gradually increase it as your husband tolerates it and as needed.  I do not have personnel experience with Entresto so I can't say.   

I know technically it is our decision to make but I didn't see it that way.  I needed to be here for my family so for me there wasn't a decision.

You'll both be ok.

Grateful Heart

opinions

by ROBO Pop - 2018-09-19 16:03:40

sounds to me like you've already gotten a second opinion, a Cardiologist and an EP (who is a Cardiologist with speciality in the electrical system of the heart) and frankly as Don said the description you gave makes this a no brainer.

The low EF and Taking Entresto means he has Heart Failure and needs a defibrillator. A low EF makes him at higher risk of SCA (sudden Cardiac Arrest) which is fatal unless you get treatment immediately. The defibrillator will provide a Jesus Jolt and keep you going. Additionally, a low EF means his organs are not getting sufficient oxygen and nutrient enriched blood and will slowly die if not corrected. They may suggest either a BiVentricular Defibrillator or a CRT-D (Cardiac Resynchronization Therapy Defibrillator) which are exactly the same thing. 

Entresto is indeed a new drug and typically used as a last resort for end stage heart failure. If it works it's great, I had angioedema from it which is swelling of the face and throat and can be very unpleasant, not to mention deadly. 

You've already taken the first steps to understanding what's going on and what the best path is so stop being afraid. This is just another adventure in life. It's not the end of the world. I've had end stager Heart Failure for well over 11 years and don't plan to die anytime soon. Trying to spend the kids inheritence first.

Good luck and hang in, we're here for you

You guys are amazing!

by Mcgrewcrew4 - 2018-09-19 21:40:34

I just want to thank each and every one of you who took the time to explain the medications, conditions and how they are related. You have no idea the peace of mind it gives me and just knowing other people are going thru this or have been with a partner who has. The insight you have given me has made it possible for me not to sound like a complete idiot when talking to the doctors too so that’s a win as well :).  We are currently trying to get in to see Dr. plumb at UAB and plan to move forward with the recommendations. I’m sure I will be back soon with more to ask you guys. You rock!! Thank you for being here for people like me 

Ask about what your doctor calls "pacing induced heart failure"

by Terry - 2018-09-21 16:21:46

See Karen's story on <www.His-pacing.org>. Scientific publications found there also conclude that with physiological ventricular pacing (called His bundle pacong), your heart can heal itself. All the up to date university hospitals and Mayo, Clevland Clinic and others are now doing "His bundle pacing" (Google that).

Terry

His bundle pacing

by AgentX86 - 2018-09-22 11:07:14

Of coure heart block (His, LBB, or RBB) would preclude His bundle pacing.  That's a rather large portion of the population who would benefit from CRT pacing.