I’m having CRT cardiac resynchronisation therapy shortly,

[NorfolkGal]

I’m booked in for CRT for 11th December, would anyone like to share their experience of this. I’m having 3 leads and I am very anxious. I have heart failure which has got progressively worse since being diagnosed in March. I had internal Cardioversion which was successful in September and initially felt tons better, but now, not able to do much. I find this so frustrating as was a busy person prior to this. Thanx in advance, Janet

[purplerain58]

Hi, My husband had CRT-D fitted a couple of weeks ago and doing ok, Not at all out of breath. He did find the Beta blockers difficult to cope with though , they wiped him out completely so he isnt taking them, I expect that makes him a naughty boy! He didn't find the procedure too bad either- almost enjoyed it in a funny sort of way!! He has got quite a lump where thing was put but he has a small frame so we knew it would be quite obvious, hopefully that will settle soon, just a bit frustrated at not being able to do things like drive, but has been going out for walks since a couple of days after and amuses himself on computer and does a little light housework.

[NorfolkGal in reply to purplerain58]

Thank you Purplerain 58, this is all reassuring

[Fortepiano in reply to purplerain58]

If your husband has a low EF, betablockers are one of the most important drugs for survival. Maybe he could reintroduce them slowly?

[laura_dropstitch Heart Star]

Hi Janet. I have a crt device due to heart failure. It's been the one treatment that I feel has really made a difference to my symptoms. Once they fine tuned it (adjusted the settings while watching my heart) my heart function actually improved - the only time that has happened since my diagnosis. I've remained stable since then. Let me know if you have any specific questions and I'll do my best to answer them x

[NorfolkGal in reply to laura_dropstitch]

Hello Laura. Thank you for your reply. How long were you in hospital and are they able to track your pacemaker remotely as I’ve heard some do? And how long after the procedure did you start feeling better?

[laura_dropstitch Heart Star in reply to NorfolkGal]

I was in hospital overnight (just one night) but I know some others who've had it done as an outpatient, home after a few hours. It was after they fine tuned mine that I began to notice a difference, probably a few weeks after that. The baggy side of my heart actually tightened up a little according to subsequent scans. It took a while for the boxy bit of the device to feel comfortable (quite a few months) but now I'm not aware of it at all 95% of the time. Mine isn't tracked remotely, I visit a clinic every six months to get all the information downloaded and the battery checked. Some people do have ones that can be monitored remotely though (I think via a small box on their bedside table?) so worth discussing your options. X

[NorfolkGal in reply to laura_dropstitch]

How are you now? Are you able to live a normal life. I have this horrible feeling that this will be my last Christmas. Being diagnosed in March and going from 39% EF to 35 in 4 months and now unable to walk out, do housework, or even my hobby which is sewing and quilting is soul destroying. I use to take 2 hours to make a pair of pull on stretch trousers and my last pair took 10 days, doing a little each day. Does it get better with CRT?

[Prada47 in reply to NorfolkGal]

Hi NorfolkGal

I don't have a CRT device, but every time I see the Heart Nurse it is talked about !! My E F has changed from 27 % upto35 % and now around 40% on last Echo. What they are trying to sort is an awful lot of Ectopic Beats that can make me quite dizzy. I am now on 10mg Bisoprolol and 32 mg Candesartan which I think is around the maximum dosage Current BP is 100/55 with a pulse of 59.

I know if I am offered the CRT I will jump at it, I am 71 and if I am going to need it, I would rather it be sooner rather than later !!

Just trying to show E F can an does change quite substantially take care and

Best Wishes

[NorfolkGal in reply to Prada47]

Thank you sooooo much x

[laura_dropstitch Heart Star in reply to NorfolkGal]

For me, yes, it has got easier to live a full life since CRT. My current consultant doesn't really use EF as a measure, so I don't know what mine is at the moment, but when I was first diagnosed it was around the 35 mark. Around the time I got my CRT fitted, I was asked to consider trying to get on the heart transplant list. Six months later, I was no longer in the transplant zone. I don't mean to say that it has been a miraculous transformation because I am still tired and sometimes breathless and I haven't KEPT improving since that initial change, but I have remained stable at that slightly improved level and I am definitely able to do a bit more than I used to. Sometimes I'm too exhausted to do much (and I quite regularly conk out by 8pm) but I have a busy, challenging, fun life. I don't think there's anything (apart from having another child) that my heart failure is stopping me from doing, I just need to do things at a bit of a slower pace sometimes. I'm also lucky to have a very supportive family and I make the most of that to recharge my batteries once in a while. I do find that minor illnesses, colds etc., really wipe me out, much more than the average person, so winter can be a bit of a bugger. But as long as I make sure I can rest when I need to, everything is fine.

I'm guessing you're on medication at the moment? Often the side effects from that can make you more exhausted. It took me years to get all my doses tweaked to optimum levels and I still feel the side effects to some extent. I went to the gym after forgetting to take my tablets one day and couldn't believe how great I felt! Still didn't break into anything more than a brisk walk on the treadmill though. Ha! Might be worth talking to HF nurse/doctor about adjusting dosages? Or could be that you will tolerate the medication better over time.

I had those same fears in the early days, thinking I wouldn't see another Christmas etc. I spent my daughter's first birthday (one year after my diagnosis) weeping because I was sure I'd be dead before her second. Well, she turned seven recently and I have no doubt I'll have to organise a party for her eighth, ninth, tenth...maybe even twenty-first birthday?!

It takes a long time to get exactly the right treatment plan in place and it's horrible to be scared and exhausted for all that time, but hopefully the CRT will be the change that gives you a bit more energy and a bit more optimism. X

[NorfolkGal in reply to laura_dropstitch]

You are so kind to give me hope and to spend time replying. Sitting here now, I don’t feel anything is wrong with me, it’s when I get up and move around that is when I know I have a problem and this has led to being very anxious about going out. I also have Lipoedema, a life time condition inherited from my grandmother and mother. This in itself is painful and the extra weight puts extra stress on heart. But there is no cure for this so little I can do. All the dieting in the world makes no difference. Today, with your comments along with the comments from the people who also replied, have made me feel better and I look forward now to having this treatment and start living again. My consultants have said that if this procedure does not work, I will start discussions regarding heart transplant.

You are so young to have heart conditions. I wish you well and a lifetime with your family xx

[NorfolkGal]

Thank you Jo, oh how I love this site. People like yourself are warm and kind and so reassuring. Yes my journey has been short but very concerning but I’m now getting use to a different lifestyle. I have bought mobility scooter for trips into town which is only 500 metres and I probably could still walk down to town but I certainly could not get back up as it’s hill all the way home. I do hope this pacemaker will help though the EP who did my Cardioversion said only one in three people notice the benefits.

[NorfolkGal]

The internal Cardioversion went very well, I felt the wires going into veins, front and back, a very weird feeling and then I reminded surgeon I was still awake so they have me more sedation and knew nothing more till back in my bed, apparently it took 2 shots to get back into sinus rhythm. I immediately felt better but heart is now misbehaving with occasional days of AF and lots of palpitations.

[Lovetopaint-12]

Hi there. I may have to have a pacemaker at some stage. I have been put on Epaxiban today (blood thinner) as I am in Atrial fibrillation all the time and get out of breath just moving. ( This was caused by hospital sending me home with no treatment). I normally suffered from Paroxymal AF. I am on Aspirin which I have to stop. My question is which somebody kind may help. The blood thinner has been prescribed for twice a day on low dose. 1.25mg twice a day. What times would be recommended as I forgot to ask. (Must be my age). And with or after food?

[WBAS]

Hi Norfolk Gal, I had a 3 lead CRT-D fitted on 30th Oct. 3 hour local anaesthetic op, so fully aware of what they were saying. Bit uncomfortable lying on my back for 3 hours, and bit painful only toward the end of the procedure, when they were pushing the device in hard. Quite painful and uncomfortable for first 3/4 days after the op, with quite heavy bruising round the area. Now nearly 4 weeks on, no pain or discomfort at all. Can see the shape of the device under the skin, and still being careful about lifting my left arm too much. Not being able to sleep on my left side is now the biggest downside, which I'm sure will resolve itself in time. Mentally fine. It was a no-brainer for me, and now just looking forward to carrying on with my , hopefully, long and now protected life. Good luck to you, and hope your upcoming op goes as well as mine. Regards, WBAS.

[NorfolkGal in reply to WBAS]

Hi, thank you, did you stay in hospital overnight? Do you feel the benefits?

[WBAS in reply to NorfolkGal]

Hi, I did stay in hospital overnight. Saw the Consultant next morning and couple of checks, and sent home lunchtime. Back to see them for a check up on 19th Dec, and due to see the Consultant again in 2/3 months, though don't have a date yet. Don't feel particularly better or worse for having had the op, but it is early days yet, but definitely glad to have had it done, and seemingly, so far, successfully. Good luck, WBAS

[NorfolkGal in reply to WBAS]

Thank you

[Heartlady123]

Hi Norfolkgal.... I am also in the 3 lead CRTD club. You are not alone. I too can vouch that following on from the op I am feeling better than I was... I feel much more stable and I don't get as breathless... although I don't walk up hills ( it's my motto) my EF before the op had dropped to 30 ... a year before it had been at 41! I don't know what my EF Is now as I won't get that checked until June next year.. but I definitely feel better. And the CRT device is there to stop further deteriorisation and can in some instances increase your EF Rate to give you a better quality of life.

I too stayed in overnight and was home the next day. You need to keep the wound covered for 7 days... so no showers or baths. But you get by with a wash at the sink. Do be careful not to lift your arm above shoulder height at this time and dont pick up anything heavy although you should keep your arm mobile. Very gentle exercises of your shoulders and slow movements of your arm to keep your arm moving.

Keep taking paracetamol for first couple of weeks... by then you will start feeling much recovered... just remember to be careful for first 6 weeks but when you feel up for a walk it's nice to get fresh air... although do wrap up.

I am 4 months on and I an back to work ( altho trying to get down to a 4 day week) and feeling much better than I was... and it's great to know the deteriorisation has stopped! I would advise anyone who is offered CRT to go for it. All the very best and do let us know how you get on post op. If you have any questions you want to ask me please do x