CRT/ICD

Hi from NZ,
I have just found this group and wonder has anyone out there with dilated Cardiomyopthy and severe heart failure have had these two devices implanted, and how has their life changed since.
I have just been told I need them both to keep me going. At present I sleep a lot or just rest as have no energy. My meds are no longer working for me after 10 years. I would love to hear from others who may have had the CRT & ICD implanted.
Cheers from a very sunny Aauckland, NZ

Drewgirl62

7 Comments

much better!

by jobal - 2012-10-25 08:10:10

Hi Drewgirl62, I was diagnosed with dilated cardiomyopathy in April 2011 and and had my Boston Scientific crt/icd installed in May 2011 and feel much better now! It took about 6-8 months to fully recover and am able to do as much or even more then I could 5 years ago. I am 54 years old now and do get tired after a full days work but I have a much better quality of life now. My crt/icd is sycronized witch took about 3 hours of minor surgery. My EF has stayed at 25% but we think mine is genetic. So I would definetly recommend it. Good Luck and Cheers from Ontario, Canada.

jobal

CRT/ICD

by Baz - 2012-10-26 01:10:37

Hi from the UK,

I was diagnosed with LBBB and dilated cardiomyopathy 2 years ago (which as caused heart failure), I had a CRT bi vent PM implanted. I'm almost 59 now and It's is easy to forget how I was 2 years ago.

I do remember falling asleep very early in the evening though. I also remember my feet/toes being a strange colour from bad circulation.

Now I cycle to work (only 1.5 miles each way) I do a full days work and do DIY jobs in the evening, my feet are a lovely pink colour. I have to say it's chaged my life for the better and I'm so grateful for it.

I wish you all the best for the future.

Baz

CRTD

by Mohai - 2012-10-26 01:10:50

Hi every one I am 45 y female I have cardiomiopathy and large heart. I received the CRTD in August 2012. My EF is 30% do you think that one day we can live without the pm especially if th EF increase to be 50 like Greatful heart.
Hope so thank you

Mohai

by Grateful Heart - 2012-10-26 02:10:13

No, I don't think we can live without our pacemakers. We have electrical problems with our heart and the pacemaker corrects that. In my case, I have SSS (sick sinus syndrome) so my sinus node doesn't function on its own. The sinus node is the bodies natural pacemaker, it signals for your heart to beat. The pacemaker acts as the sinus node and sends my heart the signal to beat. It's really pretty neat when you think about it...they didn't have this available many years ago, we are very lucky.

I also have LBBB so the pacemaker helps there too. It completes the electrical circuit or loop for my heart. (You veteran electrical guys feel free to correct me...you know who you are...LOL. I am always willing to learn.)

I am 100% paced, I know others are not. I know this is all new to you but in time you will be more comfortable with it.

I know how bad I felt before my ICD and I wouldn't want to go back to that so...I will gladly keep mine. If you try and accept it as part of your body now, it think it will get easier.

Take care,
Grateful Heart

CRT ICD

by Drewgirl62 - 2012-10-26 02:10:34

Hi again, I forgot to say I am 68 yrs old and my EF has dropped to 25% having been stable for a few years at 30%.
It is wonderful to hear how others are. Jovial what was your EF when you first got diagnosed please?
It all happened very quick for you didn't it.

Cheers Drewgirl

Me too

by Grateful Heart - 2012-10-26 12:10:10

I had dilated cardiomyopathy, enlarge heart and LBBB. I have an ICD implanted for almost 4 years now. My EF was 24% and now it is 50%, I am very lucky. Also, my heart is no longer enlarged. For me it was medication, diet and some exercise with a big dose of divine intervention. I have some hip problems which hold me back but that is another story.

Most people do feel an increase in energy after the implant. The CRT/ICD is acually all one device (just so you don't think they have to implant two separate devices).

Take care and keep us posted.

Grateful Heart

ICD-D implanted now

by Drewgirl62 - 2013-04-23 08:04:55

Well I had my implant 19 days ago, was in Hospital 3 days then home in severe pain for nearly two week, but now I'm managing on Panadol twice a day. Still very bruised and swollen, around my armpit though. Had weepy days, sleepy days, and still no change yet. My device is a St Jude's and my home monitor is called Merlin, it sits on my bed stand and wi-fi's the info to USA and then my Tech ladies log in and read my info from here in New Zealand.....wonderful 21st century technology isn't it? I also found out that my EF had dropped to 20% and I have LBBB so it is no wonder I am always tired.
I have been told it could take a year before much change happens, is this time frame what others have experienced?

You know you're wired when...

Muggers want your ICD, not your wallet.

Member Quotes

Sometimes a device must be tuned a few times before it is right. My cardiologist said it is like fine tuning a car.