pacemaker & defibrillator

[honeybubs]

I’ve been told I need a pacemaker/ Defibrillator fitted quite soon. My heart failure has only gone up from 33% to 35% heart pumping function and although stable my symptoms are worrying and I need help from these devices. My tablets can’t be increased as I have low blood pressure and would make my symptoms worse. Any reassurance would be greatly received as I am worried about having this done. Will it mean I can’t wear my Apple Watch and have anything electrical near me? Any help will be very much appreciated thank you.

[Rosie1066]

I was in the same situation as I could not be treated with meds as my already low HR went even lower so I was told by my cardiologist that the only treatment was to fit a pacemaker, which, although a bit reluctant, I really had no other choice and had an emergency pacemaker fitted last week. Yes, you can still wear your Apple Watch. But I suggest you read the British Heart Foundation’s Living with a Pacemaker booklet which explains everything.

[honeybubs in reply to Rosie1066]

thank you Rosie for your reply it is much appreciated, Joy

[Rosie1066 in reply to Rosie1066]

you should find the BHF pacemaker book on their website to download. It has everything you need to know about pacemakers and is very informative. It’s early days for me but , so far, I have had no problems with my pacemaker only a bit of soreness which gets better each day. I’m now very glad I had mine.

[MDR1]

Hi honeybuns. I had an ICD about 3 years ago, and was really worried before I had it. But it isn't that bad. The op took an hour or so and was a bit uncomfortable. The staff were lovely and even played my favourite music. There is some pain after but nothing unmanageable. You will not be able to raise your left arm for a few days and will generally have to be careful.There is no problem with electrical equipment but you can not go too close to magnetic equipment. So you will have to avoid induction hobs, traveleters, airport security, and anything else with strong magnetic fields.

On the other hand the ICD is your insurance in case of cardiac arrest so in my opinion well worth it.

Good luck hope it goes well.

[honeybubs in reply to MDR1]

thank you for your reply it is much appreciated, Joy

[Lezzers]

Hi

My husband has had an ICD since 2012, like you his blood pressure & HR are 2 low for him to be optimised on meds.

Yes, you still wear your watch. Apart from the initial limitations waiting for your ICD & leads to bed in, you can pretty much live your life as normal, you just need to be aware of anything magnetic getting too near your ICD site, though I think you have to take advice about swimming.

If you're in Facebook there's an ICD support group called ICD support-uk, with lots of friendly advice & support.

You will have to tell the DVLA though & there will be a period of non driving but that depends on the reason why you've had the ICD fitted, and I would also let your car insurers know.

[honeybubs in reply to Lezzers]

thank you for your reply it is much appreciated, Joy

[Kwakkers in reply to Lezzers]

Like `Lezzers` my first ICD was in 2012 and felt like an Olympic medal, but it`s not long before you start feeling good again. It`s like having your own personal doctor "on call" 24/7, haha.

I`ve been swimming ever since and feel Terrrific. So much so that when I go to the Clinics I`m told I`m the fittest one there. Stopped drinking alcohol mind, so it`s not for everyone: my daughter and son-in-law are doctors and keep reminding me that I DON`T have to stop alcohol.....but I don`t miss it.ba

It`s a new life. You adjust. Heed the warnings and LISTEN to your body. If you are given a GTN spray then use it when going up slopes. Get a hobby. If you recall, Fabrice Mwamba had his in 2012 and hasn`t done too bad writing......say no more.

If (as in Wythenshawe Manchester) you can attend Defibrillator Support Groups......do it.

We all believe our "Other halves" need to know MORE about these things than we do; we live with them.

Get it done.

Frank.

[Lezzers in reply to Kwakkers]

Brilliant idea to attend ICD support groups, we used to attend one run by Papworth but they've stopped doing them.

However if anyone lives in the Cambridge area the arrythimia allowance group run support groups & they have a meet up in a week or so, link below.

We found the support groups invaluable for getting to know what you can/can't do with an ICD, the reasons for having one fitted, what to expect etc. It's a great way to meet people & make friends with people who totally understand.

healthunlocked.com/heartrhy...

[honeybubs in reply to Kwakkers]

Thank you Frank for all your advice. Would love to go swimming again but used to get out of breathe quickly over the years and didn’t know why. Just kept thinking I was unfit or my asthma but my asthma is well controlled and I walk the dog (Honey) twice or 3 times a day and care for my mum so I do exercise. I would like to join a group I will have to look into it I live in Stoke on Trent. For over 10 years I’ve had symptoms from my heart but only in October 2022 I was diagnosed with Dilated Cardiomyopathy. Heart pumping at 35% and can’t increase tablets anymore because of low blood pressure. That’s why my cardiologist wants me to have a pacemaker & defibrillator combined to take the pressure off my heart so fingers crossed I will be able to walk longer distances as we have a caravan tourer and enjoy walking in the Lakes. For the last two years I couldn’t walk up hills and struggled to walk longer than half an hour on each walk. I’m feeling positive now and thank you for replying. Joy.

[Pinky1973]

Hi, I don't have an apple watch. But I know to keep my mobile phone six inches away from my device. The British Heart Foundation have excellent booklets/ information online. I just had an upgrade from a CRT-pacemaker to a CRT-defibrillator three weeks ago as I developed life threatening arrhythmias called Torsades de Pointes and passed out a couple of times. Just to add, you will not be able to lift your left arm for as long as the doctor advises. It is six weeks of not lifting your arm above shoulder height, or carrying, pushing , pulling etc so the leads have time to become embedded. A physiotherapist on the ward told me she thought I could probably raise my arm after 4 weeks, I told her - no definitely not, the electrophysiologist has just told me six weeks and I will follow his advice. But still use the arm, keep it moving to avoid stiffness. Take regular analgesia especially the first few days. I had to have a device and lead removed and replaced this time. So it was not a straightforward decision unlike the first time. It was very daunting this time because of that. It's natural to be worried and afraid. But it is a standard procedure that is done everyday and you will feel the benefits, it will improve your heart function. I certainly don't feel as anxious now, knowing I have a defib that could save my life if needed. It has given me piece of mind. I have also invested in a personal alarm. I have a go anywhere alarm watch with GPS, that is connected to a 24/7 emergency call centre. They can locate me and send an ambulance or help if needed if I press the SOS button. It will give me confidence when I go out and about again. I'm also getting a medic alert bracelet.I have low blood pressure too and also my heart rate has been set at minimum of 75. So I'm now on the lowest possible dose of Bisoprolol and it seems to be okay, I'm drinking plenty of fluids and trying to walk around a bit more, be a bit more active.

I'm hoping to find a support group but no luck so far other than the private Facebook group which is very good. I think it's a great idea though, to talk to others who are going through the same as you.

I wish you all the best for your procedure, the first time round I made sure I was organised and everything was in place for afterwards. Unfortunately this time, I went in to hospital unexpectedly and came out nine weeks later so it's been chaos and virtually no support at home so it's been hard. Three weeks later my husband hasn't helped me shower or even cooked me a meal - just a few cups of tea. Make sure you are prepared, have good support in place beforehand if it's available, or needed - social services enablement at home team, Age UK, Red Cross, volunteer/ low cost transport services, ready meals & fruit/veg in freezer, any equipment needed - ask your GP for an occupational therapist appointment. I think my difficulties are more due to the prolonged and unecessarry hospital stay rather than the procedure. There is a lot of good advice and support on this site.

[honeybubs in reply to Pinky1973]

thank you for your informative reply it has been very helpful, Joy x

[Pinky1973 in reply to honeybubs]

Your welcome Joy. I don't post on here or reply but for some reason I wanted to! Lea x

[Bingo88]

Hello honeybees. I had a pacemaker procedure done 3 years ago and found it less stressful than the dentist and I had no sedation to make me drowsy. They numbed all my shoulder up. And the only thing I felt was a bit of pushing and prodding getting the pacemaker into position. Sleeping on the pacemaker side is a problem for a few weeks afterwards and you must keep your arm below shoulder height so blouses are easier to put on. And I ended up on blood pressure tablets after my pacemaker procedure because my blood pressure was going too high. We all cope with procedures and recovery differently. Hope everything goes well for you. Brian

[Kwakkers]

Had a defib fitted 13 years ago and it changed my life. Told to go swimming and I feel B_R_I_L_L_I_A_N_T after a dip with other `old crocs. Now 73, it`s worth a little discomfort, even though my former FRIENDS (!) at the judo club don`t want to train with me; can`t imagine why, hahaha. My trigger was a cardiac arrest....Then they found I`d had 5 heart attacks, so I was bu.....d.

Get it done.

Frank.