Questions to ask before my pacemaker ... - British Heart Fou...

British Heart Foundation

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Questions to ask before my pacemaker gets fitted

Campmyvan
Campmyvan

Hiya

I'm due to have a pacemaker fitted on 22nd October and have a phone consultation due next week to discuss this.

I was just wondering if anyone has any good questions that i should be asking as i know i'll forget everything when they phone! I am going to make a list of stuff i think i need to ask as well.

Also - does anyone have any advice for me? I'm 55 yrs old - usually very active though not so much recently. I'm having a pacemaker as my heart rate has been dropping into the 30s, although typically that's not happened now for a couple of months, so they are planning to set it to not drop below 60bpm via the pacemaker.

thanks for any advice

Liz

33 Replies
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MichaelJH
MichaelJHHeart Star

I would check if they are actually fitting an ICD as an extra precaution?

Campmyvan
Campmyvan in reply to MichaelJH

would that be for if my HR was high? i'm not even sure of the difference!

MichaelJH
MichaelJHHeart Star in reply to Campmyvan

No, an ICD also has a Defibrillator that kicks in if your heart goes haywire. My niece's father-in-law has one and it kicked it at the start of the year saving his life. You can read up here:

bhf.org.uk/informationsuppo...

When I had mine quite a few years ago I wanted to know when I could run again, was there anything I could not do ,and could the settings be set to help me as I was quite sporty. I had positive answers to all of these questions.

Definitely ask if it’s an ICD

Driving restrictions?

How long for recovery (might depend if it’s under muscle or not)

Ask if it will stick out. Sometimes they are very prominent and that makes coming to terms with it more difficult IMHO.

Kimkat
Kimkat in reply to MissisF

Yes good call, mine was fitted last year and is quite prominent and I do actually catch it regularly, especially while drying off after a shower. My check up is due in December, not sure what mine is running at but I’m always tired, so I’ll be asking about that, I’ve started the gym again and I’m doing ok but do feel it, I’m 65 by the way.

not2worry
not2worry in reply to Kimkat

Have you monitored your blood pressure lately? My husband had the tiredness issue recently and then he started monitoring his BP. Low BP. We scheduled a consult with the cardiologist and he felt my husband, after a year with the PM, was being over medicated. Cut the valsartan dosage in half. Will see in two weeks if this works and if not doc will reduce dosage on one of his other bp meds.

Kimkat
Kimkat in reply to not2worry

My bp has always been low but it doesn’t seem to concern anyone in the medical profession, they almost always say it’s better low than high. I’m not on any meds at the moment.

not2worry
not2worry in reply to Kimkat

we have been told if it drops below 90 you should discuss with your doc.

My husband's dizziness seems related to his BP when he hits 88, 85

Kimkat
Kimkat in reply to not2worry

Mine is way below that sometimes. In fact while I was a the gym today it was around 78 according to the cross trainer sensor.

not2worry
not2worry in reply to Kimkat

That's great! I'm sure your trainer would recognize if you got off balance.

Kimkat
Kimkat in reply to not2worry

I never feel lightheaded or dizzy when I’m training, I feel it more when I’m lying down.

Campmyvan
Campmyvan in reply to not2worry

My BP has always been fine - even when i have the low HR episodes, my BP only seems to drop a bit thankfully!

Welcome to the "club", you will do just fine, and before you know it, you'll be all healed and almost forget it's there, but oh so grateful in case you need it!

I've had an ICD/PM since 2009, my 2nd was in 2013.

The biggest piece of advice I can give, to females at least, is to wear a comfortable preferably non-underwire bra, 24/7, even to sleep in, and a supportive but soft pillow for your side. I had to figure this out myself, I don't know why the doctors or nurses don't tell you. Trust me, it really helps with the soreness to be able to sleep.

As far as questions for your doctor, my mind is kind of blank right now, I apologize, but if I think of anything else I'll let you know.

Best wishes...😀

Campmyvan
Campmyvan in reply to siouxbee19

brilliant advice - thank you so much x

Hi,similar to you,was very fit in my 50s,always a good BM and BP, no problems with cholesterol yet developed HF.HR 30.Had a pacemaker fitted about 10 years ago.Didn`t ask any questions so 1 follow up after fitting then nothing for 10 years except the pacemaker clinic. should have asked: will I be allocated an HF nurse,will I be referred for cardio rehab,if not how do I know how much exercise to safely take,will the pacemaker setting affect my performance as I`m very keen to keep up my fitness levels.As to the actual procedure it`s very simple and effective so no worries there.Once you have PM fitted you might be prescribed Bisoprolol plus one other.Had issues with Bisoprolol,fatigue, leaden legs but was suggested by several on this forum to take it early evening.Made such a difference.Wish I`d tried that years ago.This site is fabulous for support and advice.Let us know how you get on. PS will be thinking of you as I`m having my replacement on the 22nd Oct and I will be asking the questions I should have asked 10 years ago!Best of luck.

Campmyvan
Campmyvan in reply to cowparsley

sounds so similar to my condition! Good to know i'm not on my own out here! Really looking forward to getting the PM in and getting on with my life. I do feel like i've been in limbo for a while now.

Good luck with your replacement - we'll be thinking of each other :-)

Thanks all for your really helpful advice. I know my mind will go blank when faced with 'have you any questions' and there is plenty of stuff here that hadn't crossed my mind at all.

I'm off to buy some non-wired bras now as i was thinking this morning while lay face down in bed....hmmm i might not be doing this for a while after the PM is fitted!

Odom63
Odom63 in reply to Campmyvan

Write down the questions to not your memory for the phone call :-) having a note pad has helped me so much I had one in my bag when I was in hospital I used it to write down what the Dr said to me on daily rounds so I could refer back to them when my visitor's arrived.

Hi my brother had a replacement pacemaker fitted last year for the first time. To him this new pacemaker didn't feel the same as the original. Obviously in 10yrs there are going to be different models used & improved technology with them. Maybe ask the differences between what you have & what the new one will be that they intend to fit.

After his first pacemaker fitting he went on to have ablation carried out to improve his atrial fibrillation & it took the full three hours as had been discussed prior. He now only takes aspirin daily a very lucky man.

Best Wishes to you for your replacement

Campmyvan
Campmyvan in reply to Odom63

mines not a replacement - i'm a pm virgin :-)

cowparsley
cowparsley in reply to Odom63

Mine`s a replacement so thanks for advice.

One important thing you will need to do is not raise your left arm above your head for a number of weeks. They will put your arm in a sling before you leave after the implant and you will likely need to wear to bed the first night.

For my husband I purchase button down pj and day shirts-with polos and T-shirt’s you can put on without raising your arm. Then I put a few stitches in anchoring the left sleeve to the body of the shirt (safety pins work too) that way anytime he went to lift his arm he got a tug to remind him “no” and actually makes it impossible to lift the arm as he slept.

Sleeping is the biggest challenge but after a few nights you will find your sweet spot.

Ask the doc for protocol on taking care of the incision site. Important not to get an infection and prevents scarring.

The most important thing is giving your new mate time to attach to your body. The leads will develop scar tissue so they attach themselves to you and stay in place and the clavicle will make friends with your tiny little life-saving computer.

The day after my hubby had his procedure he got out of bed and proclaimed “I feel great”.

It takes about 6 weeks to work with your new friend but the benefits it brings will be yours for a lifetime!

Cheers from Across The Pond

Campmyvan
Campmyvan in reply to not2worry

great point about button pjs - i always sleep in ragged old t-shirts - hadn't even considered that! I think i'll need my arm sewing down let alone my sleeves ;-)

I’ve never been on any meds for my heart.

I just want to wish you all the very best remember you are going to be a new women very soon take care chris white

"I always sleep in raggy old T shirts". What happened to sugar and spice and all things nice? My illusions are shattered, it is indeed a cruel life.

Campmyvan
Campmyvan in reply to Ianc2

i used to work in bars so got loads of free ones - cheaper than pjs! had to give up work now though so maybe i'll treat myself to some grown up sleeping attire at last haha!

Make sure that it is MRI compatible in case you ever need a scan.

Had mine for 11 years. After 6 weeks you will forget you have it except when you curl up to sleep and it “creeps up” under your chin. It was a relief to have it in and I felt more confident knowing that I would be ok as the pm would ensure that my blood would return up from my feet to my brain!! I took the precaution of wearing a Medic Alert bracelet. Driving was no problem after I wrote to DVLA. Car insurers not interested in the pm. Look forward to the reassurance you will have in the future. Best wishes.

Thanks for all your support folks. Hope your battery replacement went well on Tuesday as well cowparsley!

Had the pm fitted on Tuesday and it did take 2.5 hrs as they couldn't get a signal on one of the wires so had to keep trying different sites to get it working. Was quite painful at times with lots of pushing and shoving but I reckon I am just a bit of a wuss!

Very sore now but got a better night's sleep last night.

I have noticed lots of palpitations when I move around and my HR is dropping to low 50's quite a bit when the consultant said it would be stopped from dropping below 60. Anyone know if this is normal? A settling in period maybe?

I'm back at the pacing clinic in 2 weeks so I know I can bring it up then but welcome anyone's input!

Thanks again folks for all your help 😁

Eadaoin
Eadaoin in reply to Campmyvan

The review is to look at the results for the 2 weeks and adjust the Settings if necessary. I later developed Atrial Fibrillation and expected all the episodes to be recorded kept on the pm memory but not all of them were. So it’s good to keep your own list of where/what/when to discuss with the doc after the check. Yep, lots of pushing and shoving when implanting the pm which seems to go on forever☹️ Hope the soreness eases soon.

Campmyvan
Campmyvan in reply to Eadaoin

That's all good to know thank you!

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