CRT-d looking for some help please. - British Heart Fou...

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CRT-d looking for some help please.

Slidingdoors99 profile image
17 Replies

Dear All,

I have hypertrophic cardiomyopathy, AFib and VT episodes.

I live in Somerset, but have had two ablations in St Barts. The last one was last May.

Back in AFib again now and resting heart rate of about 110. On maximum meds.

I had my counselling for a CRT-d implant this week and I’m anxious and not sleeping much.

Apparently it won’t help me with my AFib symptoms and I won’t feel any better when it’s been wired in than I do now?

The consultant had told me previously that it would lower my heart rate, but the arrhythmia nurse yesterday looked doubtful.

Am I having this done for only prevention I’m wondering?

The implant looked so big and felt so heavy and I know that shouldn’t perhaps matter, because it might well save my life, but it does!

Would really appreciate hearing from anyone who has been through the same kind of thing!

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Slidingdoors99
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17 Replies
BlueJRW profile image
BlueJRW

I had a Medtronic 3 wire CRT-D implanted in February 2020, I don't notice now unless I rub my hand over the area or look for it in the mirror, the scare is now slight.Only two of the wires are active the third isn't because my QR gap narrowed, it's there ready for the day when my QR gap widens. My device is just pacing at the moment and thankfully never had the provide a shock but it's there as my personal paramedic. I'm glad I had the procedure it's given me the confidence to travel long haul and see place's I would otherwise never risk travelling to with my condition. Good luck.

Slidingdoors99 profile image
Slidingdoors99 in reply toBlueJRW

Thank you so much. I’m so looking forward to the day that I can fly off somewhere beautiful!

I was really encouraged by reading your reply. 😊

Mercury-Advance profile image
Mercury-Advance

Good Morning,

My background is very similar to yours. Over the last 10 years I had 2 ablations for VT at Oxford. I then carried on a normal life till I had a Syncope 12 months ago. After a multitude of tests I ended up in the Oxford heart hospital. The consultant came round and sat on my bed to explain that i have had an episode of abnormal heart beats which resulted in my loss of consciousness . He recomended I have an ICT_D fitted as it would save may life if this happened again and it was the only treatment that would allow me to drive again. (After 6 months ). This was done 2 day later and after the recovery I am back living a normal life'

The CRT-D does not cause me problems and most of the time I do not think about it.

I keep a record of my blood pressure and heart rate and the pulse is between 60 and 77

Slidingdoors99 profile image
Slidingdoors99 in reply toMercury-Advance

Many thanks for sharing that with me Mercury.

Can I ask if you are able to sleep on your left hand side and can you still swim?

Mercury-Advance profile image
Mercury-Advance in reply toSlidingdoors99

Hi

I have no trouble sleeping on either side and see no reason why you could not go swimming. other than you have to keep you arm below shoulder level till the 3 leads become embeded in tissue. I think that was 6 weeks.

Looking back I think that my little friend has saved my life as it makes my heart pump better and intervenes if or when I get more VT. The shock only happens as a lst resort and so far this has not happened. I am aware this is a very worrying time and all I would say is I am very please to have my CRT-D I am back to a relatively normal life which is what most in our position want. So I wish you well and a long and happy future.

Slidingdoors99 profile image
Slidingdoors99 in reply toMercury-Advance

Again, thank you so much for taking the time to reply to me.

I’m a very restless sleeper and that was bothering me!

I will wait until the wires have bedded in before taking that first dip!

honeybubs profile image
honeybubs

Hi, first of all we are all different so we can only tell you our experiences. I’ve had a CRT-D Cardiac Resynchronisation Therapy Defibrillator implanted for 18 months and although it wasn’t AF I had 34,000 extra ectopic beats with Bigeminy Arrhythmia that were making me feel quite ill. Ablations were mentioned to me and I didn’t like the thought of having that when he said the end result would still be to have a CRT-D fitted anyway. I’m a slim 65 year old lady and wasn’t too keen on having a device showing so I’ve just adapted what I wear that doesn’t show it. After all the swelling goes down which took quite a few months I don’t know it’s there now! I would definitely say have it done it has saved my life and I’m so grateful for it. Hope you go on ok let us know. Joy x

Slidingdoors99 profile image
Slidingdoors99 in reply tohoneybubs

Dear Joy, thanks so much for replying to my post

it was positive and appreciated.

Yes, I was told that because I’m slight, then the device would be more noticeable. (I’m 68)

Is it true that I won’t be able to sleep on my left side again? 🧐

honeybubs profile image
honeybubs in reply toSlidingdoors99

You can sleep on your left side after probably a year as it felt just a bit uncomfortable before then but I also have lots of pillows so I’m propped up a bit as well I don’t lie flat. Had to swap my induction hob for a different one and my Apple Watch on my right arm and you have to stay away from magnetic fields. They give you a special plastic card with all the details on so you can show it at airports as you won’t be able to go through the magnetic scanner machines. I was told I would only live probably a year without the device and if I have it probably 10 years plus so I had no choice. I was diagnosed with Dilated Cardiomyopathy. My ejection fraction was 35 and last time I had an echocardiogram it went up to 45 which is fantastic. Had the genes test but came back that I didn’t have that gene but it could still be that as they can’t test every gene so family still have to be cautious. I feel so much better mentally and physically since I had the CRT-D and back to my normal self. Let us know how you get on all the best. X

Slidingdoors99 profile image
Slidingdoors99 in reply tohoneybubs

Thank you for your kind message Honey.

Lots of good and helpful words there!

Deejay62 profile image
Deejay62

I have a CRT-D fitted and I have both the above you mentioned but I have dilated cardiomyopathy. I also had both my CRT-P and D fitted the same place you’re having yours done with no problems, the latter fitted 6 yrs ago. In fact I felt well taken care of by them. Now I don’t really remember I have one fitted. Twice a year I have mine checked, once in person and once remotely. They are very good at answering any questions you have.

Slidingdoors99 profile image
Slidingdoors99 in reply toDeejay62

I was really encouraged by reading your reply. Thank you so much.

My ablations were at Barts because Bristol refused me due to my HCM.

The implant would be put in at my local hospital here in Taunton.

Deejay62 profile image
Deejay62 in reply toSlidingdoors99

All the best, let us know how you’re getting on. It will take time and patience to settle.

Slidingdoors99 profile image
Slidingdoors99 in reply toDeejay62

😊

Igotrhythm profile image
Igotrhythm

I have hypertrophic cardiomyopathy, permanent AFib with VT and on August 11th 2021 had a CRT-d implanted. Initially after the adjustment period the CRT-d never bothered me. However, January of 2022 I became quite ill and lost a lot of weight. The CRT-d unit was so close to popping through it was decided to put the implanted unit under some muscle. It's hardly noticeable and much better protected. I have no discomfort in and around the area. And wonder why that wasn't done straight away?

Perhaps they would tuck it under the muscle right away?? Might be worth a discussion.

I'm waiting for a AV node ablation in the new year as all the medications I've tried don't hold the heart rate down slow enough. Apparently I'm a good candidate for the AV node ablation because of the CRT-d. 2 leads if by chance one lead malfunctions the other one will keep me going.

Hopefully this is of some help to you. All the best with your heart health adventures.

Smile, breathe and go slow. Enjoy.

Gary

Slidingdoors99 profile image
Slidingdoors99 in reply toIgotrhythm

Hi Gary, thank you so much for replying to my post.

I see that we’re very similar in our heart journeys!

Heck! I thought that they always put the unit- which to me looks huge and felt pretty heavy- (I’m only a small person ) under the muscle?

I will ask when I have my pre-op assessment.

Thanks again and I wish you well too.😊

Slidingdoors99 profile image
Slidingdoors99 in reply toIgotrhythm

PS I think they said 3 leads for me?!

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