Advised to have a Crtd

Hello. I would just like to introduce myself, and say I am glad to have found this site. I am hoping for advice and support in an upcoming decision to have a Crtd implanted.
I live in Ireland, am fifty seven years old and six months ago was diagnosed with non ischemic cardiomyopathy, and an ejection fraction of 10. That has improved with medication and now my EF is 25. I also was diagnosed in 2008 with left bundle branch block and hypertension.
I have been advised by my cardiologist to have the crtd unless there is more improvement in September, when I a scheduled to have a repeat echo, and EKG.
I cannot say I am having many symptoms at the moment Thank God. I am tolerating the medication quite well. I have some dizziness, and sometimes feel anxious and short of breath. But overall I can get about more or less as usual. And for that I am so grateful.
I would like to put off the decision for another while, as I do not want to set myself back with complications of the devise.
I am finding the decision very hard.
I would be grateful for any advice or to hear from others who are facing the same.
Lucy

10 Comments

Welcome

by Grateful Heart - 2013-08-21 01:08:29

It seems those of us who have responded to you all have similar conditions, myself included. Ours is an electrical problem, there is nothing we did to cause it.

It's great that your EF has improved with meds, mine did too, to 30%.....but it was still too low. Normal is 50-70%.

Right now, your heart is beating out of sync, so it is worker harder than it should to circulate the blood throughout your body and other organs. The CRT-D will synchronize your ventricles so they will beat more efficiently. Most likely, your EF will improve too. My was 24% and is now 50%. I am very lucky.

I didn't think I was having symptoms either. I was SOB and tired and I blamed it on age (52 yrs. at the time, almost 5 years ago) and being overweight. When they told me I needed an Bi-V ICD, I thought they must be wrong, I never had a heart issue or took medication for anything except the occasional aspirin or antibiotic. I went for a 2nd opinion, which confirmed it. It was a shocker for me, as it is for most of us and then.....I had to accept it. What choice do we have?

Attitude is very important for recovery. You sound like you have a good attitude are thinking this through.

I think you will feel so much better after the implant and only then will realize how bad you felt before it. At least that was my case.

Something else to consider: you may want to have the device implanted sooner than later in order to start the healing process and improvement of your condition before it does get worse. Chances are recovery will be easier.

September is almost here. Follow your Doctor's orders and see what the Echo and EKG reveal.

We are here for you. Ask any questions you have...this is a great support group and we've all been there. I wish I knew about this site when I was having my implant. I found it 2 years later....it was a good find!

Grateful Heart

Welcome

by dad4dds - 2013-08-21 02:08:04

My ef was 35. I had my crtd placed in december. I feel so much better then before. Its like I am a changed person.

Hi Lucy

by Acin - 2013-08-21 09:08:46

I have non ischemic dialated cardiomyopathy too. I also have left bundle branch block so we have a lot in common! I was diagnosed in March of this year and received my ICD July 16th. I had no trouble agreeing w/my cardio to have one. It will save my life in the event that my heart stops. I feel great now. I like you, did not have any symptoms. My EF was 20% and 3 months after being on meds went up to 35% but that is still low. I can't tell you to have the device; that's totally up to you. I'm sure others will chime in and give you great advice. I hope this helps a little.

Get the device

by belle - 2013-08-21 10:08:59

My story is exactly the same non ischemic dialted cardio. LLB too, you should def get the defib if you are getting better on meds alone a defib will help u even more. At time of my diagnosis 5 yrs ago I had an EF of 10, fast forward I had my defib replaced last month and my EF is 30 which for me is great. As my dr always pointed out to me you can have an ef of 10% and feel better than people who have normal efs and have horrible problems..... My dr hammered that into me. I don't understand why, but I would get the device. I too was scared at first (really terrified) and I had to get all the tests done to see if my heart was viable I think it was a pet scan. Those were the bleakest days of my life. I am 53 yrs old, felt sorry for my self and got myself into a horrible depression, that I had to go on meds for. Most heart patients suffer from depression too, I go once a year to the "big dr" at Columbia Pres Hospital she was on the team that worked on Pres. Clinton, see my regular cardo every 4-5 months and have my defib checked every 4 months. My doctor does not believe in giving people with CHF echos unless they are having symptoms, also when I had the replacement the dr told me that yes my heart was still enlarged, but has seen bigger. At the time of my diagnois my heart was very enlarged. Who knows, just keep your head up and get that pacemaker!

belle

Good morning !!!

by coppertop - 2013-08-21 11:08:47

I was diagnosed with non ischemic dilated cardiomyopathy. actually, 1 year ago today. and my EF was also 25%. Lbbb, enlarged heart. shortness of Breath dizziness. I had fluid in lungs so I had to stay in the Hospital a few days. may 17 2013. I had my crt-d implanted.
My doctor had to go back in the next day and move one of my leads. it slipped back and was pacing my diaphragm. my vein was to big for that lead. you are very lucky Lucy that you found this site. I sure wish I would have before the Procedure.I I was so depressed and so sad and weepy. Belle, told you that is common with heart patients.
I have to tell you today, I feel so much better than I have in years. I am not gonna lie to you it is a little daunting. I found this site a week after my procedure and that truly helped speed up my mental and physical healing. and now you know you are not alone. I had never even heard of Cardiomyopathy. let alone know anyone who had it. Belle and Many Blessings and grateful heart, have been so helpful to me. I don't feel alone which is such a wonderful feeling. it is very important that you have complete trust in your Doctors. and if you do and they tell you need this procedure done.don't delay!!!! Take Care, Haley

Get the device

by PacerRep - 2013-08-23 09:08:27

Sounds like you are the perfect canidate for one. There is a new device out there that I would look into with your doctor, it's a brand new technology in CRT-D that is putting out some crazy results. The technology is called "SonR".

Google it and see what you think. I believe it is still in clinical trials so you would have to find a center that is participating, but everything I've read, it's changing the CRT game.

It's not available here in the united states yet, but Europe is putting them in like hotcakes.

Advised to have a Crtd

by Lucy - 2013-08-29 05:08:35

Thank you all very much for taking the time and trouble to write to me, and to advise me on a difficult decision.
I have read your letters several times over. It is comforting to know I am not alone in this situation, and that others are living good lives, with the same condition, and with crtd's implanted.
I confess I am still hoping for a reprieve... I am feeling fairly good on the medications, at the moment.
I read about the new studies concerning the SonR, very interesting in the bits I could understand:).
I notice most if not all of you are in the USA. I am in Ireland and am very happy with the care I receive from my cardiologist and family doctor. I am very lucky.
It is just that I cannot at present get my head around the idea of having an implant in my chest, which is liable to go off at any moment and shock me. I am focusing on the negative I know, when I should be focusing on the very positive aspect.
I suppose I am still in some way in denial. I cannot believe I failed to realise how ill I was six months ago. I had symptoms which like so many of you I put down to ageing..
Thank you all for your support. I will continue to read over your words and try my best to resign myself to having the device. I just need a little more time I think.
Lucy

Got CRT-D Implanted

by abhinav0131 - 2014-07-18 03:07:22

Hello all

Feels good to have found such a forum. My father is 54 yrs old, was detected with LBBB with LVEF ~25% in Jun'13. Took some medicines albeit irregularly, was having SOB all this while. Started feeling severe SOB around 3 months back, then saw his legs and abdomen swell around a month back, wasn't able to sleep at all, went to a doc in emergency, they gave him Lasix injections to remove the fluids. Tests revealed LVEF was 15% this time, and was advised a CRT-D Implantation. Got it done like a week back. Breathing feels better, however, I see a little swelling in legs and abdomen again, and he is weak as hell. Have a doctor appointment in a couple of days but must admit I am scared.

Would like some inputs about how long it it took you guys to resume normal life, was it all ok immediately after the implant ? And will the medication continue indefinitely ?

Abhinav

Medical and device therapy for CHF add up

by cabbie - 2014-09-14 02:09:08

Hi Lucy. It depends on how much benefit you will get from the CRT-D. I deferred mine for a while until I felt so short of breath and fatigued that I had to do it urgently. I don't regret my decision and feel much better though I am still in recovery. But I do understand all your anxiety as I was like that until I made my decision.

Hi Abhinav. I just had a CRT-D implanted in August. I asked my cardiologist whether I could stop some of my medications. He said it depends on my response to the CRT-D, but that it is likely I will keep taking medications which confer different benefits apart from the implant.

I assume your father is a heart failure patient. ACE inhibitors like enalapril, beta blockers like carvedilol and aldoserone antagonists like spironolactone all work differently but have additive/synergistic effects on prolonging survival. The CRT-D can also prolong life on top of the medication effects mentioned. Diuretics like Lasix are mostly to relieve symptoms.

Hope this helps. I am in the same situation and had the same question that's why I have read the clinical trials and gleaned all this information. I will continue taking medications as long as I can tolerate them and see the benefits of doing so, along with my implant.

Here is a useful link on HF medications and HF in general:
http://www.heartfailurematters.org/en_GB/What-can-your-doctor-do/Heart-failure-medicines
http://www.heartfailurematters.org/en_GB/What-can-your-doctor-do/Implantable-devices

At the European Society of Cardiology Congress this month there was news of a need drug combination that can prolong life for HF patients. It's not on the market yet but I am looking forward to it.
http://www.nejm.org/doi/full/10.1056/NEJMoa1409077

Also research being done in the UK on stem cell therapy and regenerative medicine which I hope can benefit HF patients whtin the next ten years or sooner.
http://www.bhf.org.uk/research/our-heart-research-1/how-weve-made-heart-history/heart-failure.aspx



Good luck!

Can we have an update?

by Mapleshaz - 2017-10-24 17:28:06

I will be having my CRTD implanted next week and would like to know how you are doing.

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The experience of having a couple of lengths of wire fed into your heart muscle and an electronic 'box' tucked under the skin is not an insignificant event, but you will survive.