CRT-d looking for some help please.

[Slidingdoors99]

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!

[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 in reply to BlueJRW]

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]

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 in reply to Mercury-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 in reply to Slidingdoors99]

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 in reply to Mercury-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]

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 in reply to honeybubs]

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 in reply to Slidingdoors99]

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 in reply to honeybubs]

Thank you for your kind message Honey.

Lots of good and helpful words there!

[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 in reply to Deejay62]

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 in reply to Slidingdoors99]

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

[Slidingdoors99 in reply to Deejay62]

😊

[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 in reply to Igotrhythm]

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 in reply to Igotrhythm]

PS I think they said 3 leads for me?!

[Slidingdoors99 in reply to Igotrhythm]

Hello again Gary. My CRT-D implant will be on January 8th and will be put underneath the skin apparently. I have been told that only people with a BMI need to have it placed under the muscle, but having done some reading, I have asked for them to put in some stitches so stop it moving around so much!

I’m full of anxiety about it all.😱

No mention of antibiotics before or after with me. Did you have those?

Also, how on earth can you stay sleeping on your back without turning over onto your left side for so many weeks?

I thrash around all the time when I’m asleep!

[Igotrhythm in reply to Slidingdoors99]

Greetings from Canada, 99. Excellent news that you have a firm date of January 8th for your CRT-D procedure. It sure has improved my quality of life. Nice way to start the new year.

Glad you sorted out the extra stitches. Good research on your part.

No I did NOT have antibiotics. The surgical team work in and at such a high level of cleanliness - sterile environment - that infection never was an issue for me. However, you will receive strict instructions on how to look after the stitched area. Just follow them to the letter. The stitches fell away on their own. I was instructed to have a medical professional check the stitched area after about a week to 10 days.

Anxiety. Our old friend. I struggled with that as well.

I can only say that the whole procedure was painless and uneventful. The worst bit was installing the I V line. Which wasn't all that bad.

There is some discomfort after but not really all that bad.

Sleep. Once the area has healed I sense you will work out a sleeping, tossing and turning routine that works for you. I had long naps in my easy chair while recovering. Hopefully you can get some extra zeeezs that way.

Finally. My thoughts and prayers are with you.

I will be thinking about you on January 8th.

Smile, breathe and go slow.

[Igotrhythm in reply to Igotrhythm]

Would love to stay in touch. Gary.

[Slidingdoors99 in reply to Igotrhythm]

Hi! Great to hear from you this evening. Thank you so much for that!

Ottawa will always have a special place in my - pretty dysfunctional - heart!

I feel better after reading your post.

When I wake up at about 3:00am I tell myself, stop worrying and just go back to sleep, but it rarely works! 😱

My mind just goes round and around… I’m allergic to nickel and there’s nickel in the implant, but the hospital have said that I don’t need a patch test. I think I’m just going to have to trust them on everything.

I have been given a red washing liquid and nasal inhaler to use five days before I go in, so I suppose that’s why antibiotics haven’t been discussed with me?

Thanks again.

Sian

[SchnauzerOtto in reply to Slidingdoors99]

Hi, antibiotics are always given, intravenously about an hour before the procedure! Since the CRT procedures are a little longer, or at least mine was, they put my device into a Tyrx envelope, which is made of antibacterial mesh and dissolves over a short period of time. It's worth asking about that too!

[Slidingdoors99 in reply to SchnauzerOtto]

Hi! Thank you and I will ask about that!