crt-d

hi all
my first time on this site. my doctors have recommended resynchronization therapy with a defibrillator. I am most anxious about this. I have been reading recent studies and the success rate appears to be 50/50. I have also read about possible complications. I would like to hear from those of you who have cardiomyopathy, low ejection fraction, left branch bundle block, and qrs about 140. wow! I can't believe I have all of these - looks dreadful on paper.
I would love to hear about your experiences.
thanks.

6 Comments

Welcome

by Grateful Heart - 2014-04-06 11:04:29

I was diagnosed with CHF, cardiomyopathy, low EF 24%, LBBB and SSS so I know what you mean. It's scary when you see all of that on paper and confusing until you learn about your condition-s.

I am one of the lucky ones in that 50/50. My CRT-D and meds have helped me tremendously. My EF is now 50% and has been for the past 4 years. My device is 5 years old.

It's normal to be anxious about any surgery. The more you learn about your device and condition, the more comfortable you will become. You found this site, so that is a great start. I didn't find this site until 2 years after my implant.

Attitude is very important in recovery and it sounds like you have a good attitude. Any questions you have....ask away.

Keep us posted.

Grateful Heart

ICD

by Sylvia1 - 2014-04-07 02:04:12

Hi,husband has ICD since July 2013 - he has af,LBBB,chf and EF 30 - it is hard at first adjusting to life with a device but you need it for a reason and he soon got used to it and keeps busy everyday.He has had 2 shocks but this makes you realise how lucky you are to have device because without it you wouldn't be here.I wish you all the best.

A couple random thoughts...

by donr - 2014-04-07 08:04:35

...about success rates.

You get a pretty serious sounding diagnosis & the first response is disbelief & a tendency to freak out. (Don't ask how I know, you'd ROFL - not good for your health). Darned near ALL of us go through that stage & it may last anywhere from a few seconds to minutes to days.

Then we start researching the diagnosis & it starts to sound even more awful than we originally thought. Of course we want to be absolutely confident that the diagnosis is CORRECT. Therein lies the first dilemma! How does one challenge the knowledge & authority of the Great Man (Woman) in the long white lab coat?

The answer: Ask for an explanation of all the symptoms & lab work & diagnostic tests. If the Great Man will not give you an explanation - go for a second opinion! Followed by ditching the arrogant dork.

You deserve a rational explanation of how you got to where you are!

Next, you must allow your rational mind come to grips w/ your situation. Every diagnosis has a potential procedure for correcting it - unless you have a diagnosis that is terminal. That procedure has an established success rate that is a function of the diagnosis & the skill of the Great Man proposing the solution.

Do not get all wrapped around the axle about success rate till you examine the success rate of the first action to be considered - DOING NOTHING. THAT is always the first option. No one forces you into a procedure.

Then ask if there are alternative procedures. What are their success rates.

That will get you to the ultimate procedure & its success rate. You must accept it for what it's worth.

Apparently that 50/50 is disturbing you. Focus on the first 50 & be as positive as you can about it & do all w/in your power to influence falling into that half of the rates.

EVERY procedure has its complications. Every procedure has its risks. Every procedure has its messy side/after effects. We have to know about them & understand them.

We often have to make decisions about them knowing that they are risky. In our collective situations, one of the riskiest procedures is a lead extraction after several years. That procedure has a 99% success rate, despite its very messy risks. But many people obsess over the 1% part, not the 99% part. Why? Because the 1% part is so dramatic.

When you get into medical procedure decisions, the downside is always messy - you must FOCUS on the positive side, all the time considering the negative.

Grateful Heart is a fine example of success. She mentions LUCK - is there also not a fine amount of skill on the part of her surgeon? AND good, positive attitude by the patient?

We have a lot of members who have the same device you are expecting. Hopefully they will respond. IF they don't, I'll go out on a limb & state that they seem to have a pretty decent success rate & are pleased w/ the results.

Donr

CR-T

by lscarberry - 2014-04-08 05:04:35

I too have LBBB, had an EF of 25, congestive heart failure and lord know what else. I tried meds for almost a year; got EF up to 55% but then after a few months it dropped back down. Had CRT pacemaker/ICD and immediately felt better. Told the doctor it was amazing how a little oxygen and blood flow can make you feel. I got out of the hospital the next day and never stopped going.

It's a scary diagnosis and at first I fought it and tried the meds. But immediately I felt so much better. You will be sore, have to keep your arm in a sling so you don't pull your leads. Ask lots of questions. There's so many things the doctors don't tell you such as:
Don't eat grapefruit; messes with your meds
Don't sleep on your left side; puts pressure on the wires
and can cause a strange feeling
Stay far away from magnets

I've had mine for 6 years and will have to have replaced in a year or so. But the good news is that we have options which didn't exist 10-15 years ago.

Best of luck,
Linda

HeartOfBrick

by Grateful Heart - 2014-04-10 01:04:28

I was wondering how you were.

It's good to hear you are doing so well....great news!

Keep up the good work.

Grateful Heart

YOU NEED TO GET THE FACTS

by HeartOfBrick - 2014-04-10 09:04:11

Hi Capecod,

I read your posting and thought I’d offer you some of my own advice for what it's worth..

First, I would go back and complete your profile (age, geographical area, reason for your CHF, etc.). The reason I say this is that the more information you provide the better advice you will receive such as prognosis, leading research centers in your area, etc.

Your belief that a CRT-D device can help only 50% of the patients receiving them is incorrect. The device does NOT help approx. 30% of patients receiving it. This is usually due to the underlying reason for the CHF to begin with. Another 35% of patients have good results and another 35% have amazing results where there EF increases back to normal along with the heart shrinking. Your results will also be dependent on whether you have other health issues (diabetes, obesity, coronary artery disease etc.).

If your CHF is due to a virus that weakened your heart and that resulted in LBBB, there is a very strong probability it will help you significantly. That is what I was diagnosed with in June of 2008. At that time my EF was 15 and I was still functioning fine. I was put on medication and my EF eventually increased to 25, but later began to drop. I fought with the idea of getting a CRT-D device. I just couldn’t wrap my head around the idea because I have always been extremely healthy. At some point my EF went 10% and my doctor gave me no choice. It was the best decision I could have made. I had the CRT-D implanted 2 years ago and immediately saw results in feeling better. I had a resent nuclear stress test that showed my EF has increased to approx. 25%. That’s a huge improvement from where I was. And my cardiologist is confident that I will continue to improve to the point where my appointments are now once a year. I should also stress that I am healthy in every other way. Never had a heart attack, no arrhythmias, my arteries are “open” approx. 95%, my cholesterol is 110, I exercise every day, etc.

My point is every individual’s situation is different and worrying about it won’t help. There are studies showing that depression can actually be detrimental to CHF patients. You need to get yourself educated on your specific situation by asking many, many questions to your doctor. Based on YOUR specific situation you should gain a better understanding of what you can expect.

Best Wishes

You know you're wired when...

Your device acts like a police scanner.

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I am 100% pacemaker dependant and have been all my life. I try not to think about how a little metal box keeps me alive - it would drive me crazy. So I lead a very active life.