CRT/ICD ?

I am new here with a diagnosis of Dilated Cardiomyopathy , LBBB and LV enlargement with an EF of 20. The doctors believe it was Viral in its origin. I am on multiple medications: I would love to hear back from anyone that has been in my shoes previously. I am 50 year old male.
I believe medications will help but the doctor says most likely I will need some ICD- my research tells me a CRT/ICD is tge way to go if thr EF doesn't get passed 35.
Anyone has had one implanted I would love to hear about your progress and how you are feeling. Thank you for any and all support.

8 Comments

CRT/ ICD

by Grateful Heart - 2014-03-01 07:03:08

Hi Nivla,

I was diagnosed similar to you, also with SSS also due to a virus as far as they can tell. Medications may help somewhat, they usually want to try them first. In my case, my EF only got up to 30 after trying medicine only.

I have a CRT-D, the D is for defibrillator. My EF is now 50-55% and my heart if no longer enlarged! I know I am very lucky, not everyone is that fortunate but I believe the device, taking my meds, losing weight in my case, diet, exercise and Prayer....as well as having great Doctors (wasn't always the case) has all helped me tremendously.

Again, this is not always the result but I just want to let you know it is possible. There are some others here who have had similar results too.

These truly are amazing devices and we are so lucky to live in these times.

A good attitude is very important for recovery. Ask any questions or concerns you may have here too. We've all been through it.

If you get the device, I strongly suggest you go to Cardiac Rehab with your Cardios approval. You will benefit from it greatly in so many ways. Nothing in your profile but if you are in the US, you will need a prescription/ referral from your Cardio for Cardiac Rehab. Well worth your time and effort.

BTW, I'm 57 now and I have had my device for 5 years.

Good luck to you. Learning all you can will ease your mind.

Grateful Heart

CRT/ICD

by Sylvia1 - 2014-03-02 07:03:29

My husband had an IcD in July 2013.He has congestive heart failure,af and LBBB.Initially he drove himself to hospital in Jan 13 feeling rather unwell and patiently waited in accident and emergency where he was eventually moved to resus where he was told he had had a silent heart attack and pnemonia.he was pumped full of medication as he was at high risk of having a stroke.he spent a week in hospital and at that time he continued to take medication and after a month recovering he went back to work.He struggled with work but with bills to pay had no choice and he had a follow up appointment in May where they decided to implant an ICD.He adjusted very well to having this device as without it he would not be here as we were told when he had his first shock from it.He is 61 and he is not well enough to work but he is kept very busy with our young grand kids and we just are so grateful of this brilliant device.his EF has still stayed under 30 at present and he has a device check tomorrow as he may have to have vt ablation depending on how many vt episodes he has had.

I wish you well.

Follow up

by nivla50 - 2014-03-02 10:03:26

I want to thank you so much for taking the time to read my post and write me. I am here in the USA , proud American.


It is wonderful to hear your story and how you are presently from 5 years ago. I know every case is different and one can't expect the same outcomes.


I'm curious, 5 years later do you find yourself still being able to do things you couldn't before? How is your energy level? Do you do some exercise now? During - have you been able to work, had to stop working or now able to work without issues?


No one seems to talk much about that and wanted to know with the CRT device if it enhanced your Life in those areas.

Many , Many thanks
Nivla50

5 Years Later

by Grateful Heart - 2014-03-02 11:03:33

It's what some of us call a "new normal". But having said that, there are others here who are marathoners, triathletes, hikers, etc.

For me, I feel much better than I did prior to the ICD as far as heart related issues but don't go by me...in the past few weeks my energy has tanked. I had the flu about 6 weeks ago so I am blaming that but not sure. I also think I may need an adjustment to my device but that can be typical for us from time to time.

I don't work but I also have arthritis in one hip, the other has a hip replacement, spinal stenosis and the ICD so it's a combination of medical issues in my case.

But none of that negates the improvement my ICD has made.

I do go to the gym because it feels better to move my body/ joints. Otherwise they stiffen up and become worse...move it or lose it theory.

There are some on this site that have returned to work without any problems, others do have difficulty so we are all different. If you do a search on the site you will find others talking about work.

Yes, it has indeed enhanced my life. I probably wouldn't still be here 5 years later.

So I am a very...

Grateful Heart

Thanks

by nivla50 - 2014-03-09 09:03:00

Hi Silvia1 ,
Thank you so much for your story of hope and inspiration you shared with me. I wish your husband well and your family also to continue to share one another's lives for many many more years. Thanks again ,
Nivla50

Grateful

by nivla50 - 2014-03-09 09:03:10

Thank you Grateful Heart ,
For your words of encouragement and inspiration.
They are helpful to me un understanding this situation
and proceeding forward in a Positive state of mind and
with much faith ..
Nivla50

Me too!

by TITLE - 2014-03-28 05:03:27

I am 59 and have had my pacer/ICD since March of 2011. I too have a LBBB and HAD an enlarged LV. At the time of my implant surgery my EF was down to 10%.
I am happy to report that my EF is now 55% and I'm feeling much better. However...the first year and half was not so much fun. I was over weight (270) and the carvedilol was making be dizzy and so, so tired.
I took the bull by the horns and lost 75 lbs. and they cut my med in half including my lisinopril for high blood pressure. If you are over weight I cannot stress enough to lose weight.
My future looks good and I am thankful for modern technology. Good luck!
TITLE (Trust in the Lord Everyday)

Great News for you

by nivla50 - 2014-04-10 01:04:41

I am happy for you and congratulate you on your efforts and spirit in tackling this Condition. It's awesome to hear reports like yours and staying Positive is essential.

You will see with time and faith that your heart will return to normal size. Mine was misdiagnosed and was never enlarged which has now lead to the wonder what type of Cardiomyopathy I have. The Ventricles are not dilated and the walls show no thickening. Cardio doctor says my whole low EF could be just LBBB related . Either way im
anxious to see how I will do in my next Echo. Title keep us posted on your wonderful progress!!

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