Waiting is the hardest part?

Hi all sorry for so many successive posts! 3 more nights until my procedure (I have CCHB) and the waiting is driving me insane, im so worried somethings going to happen to me in the meantime! Any advice for coping with the wait? I'm being kept in the hospital under a heart monitor just so they can keep an eye on me but they're saying i'm very low risk of anything bad actually happening. My rates been dropping to the low 30s over night which is scary to see! All advice and reassurances welcome please!


11 Comments

Keep Calm!

by Marmite - 2019-11-24 18:34:49

Hey, If I understand correctly you're in hospital and being monitored. Try to be reassured that they can act quickly if you do get into any serious situations. My HR was below 30 at night for 12 months before I got a pacemaker - once much, much lower - and although that wasn't ideal and I understand the worry, I was fine and you will be too I'm sure.  My GP told me that HRs at night can be spectacularly low sometimes so try not to worry too much. Difficult I know, but you're in the right place and not long to wait now.  Good luck and try to distract with something interesting perhaps? 

Also from the UK?

by Tommy1996 - 2019-11-24 19:36:46

Hi Marmite thanks for your reassuring comment. Yes thats correct and it's very reassuring to know that your rate was also that low and you're all good! I'm trying to distract myself but it's so easy to glance at the monitor and see the scarily low number! Im only 23 so this has all come as a huge shock! Ill try to distract myself some how!

I’m from the UK

by laura1brown23 - 2019-11-24 20:54:40

Hey Tommy1996,

 

how you doing? Just read your message and I feel I can relate in ways. Same thing happened to me a few years ago when I was 29. My heart rate was really low and they kept me in for 2 weeks to monitor me and then put a pacemaker in.

 

at the time I was probably feeling the same as you, scared that something was going to happen any second!!! But it didn’t . I’m not actually sure it’s even massively dangerous because you’re so closely monitored it’s highly unlikely anything will happen. Once you get your PM this stuff can’t hapoen again either.youre really young as well so you’ll bounce back from this. I have. I’m 33 now. You will have to post again so that I know how you’re getting on. As worrying as it may seem it’s not deemed life threatening, you just feel like crap!

 

laura xx

Hi Laura!

by Tommy1996 - 2019-11-24 21:13:09

Hey Laura thanks for commenting where abouts in the UK are you from? I'm from Cambridge! I'm okay I guess just terrorfied staring at the heart monitor 24 hours a day haha. So mad when this comes as a completely random finding isn't it! I'm glad to hear you've bounced back anyway and I'm sure I'll do the same, just need to get through until Wednesday! I'll keep you posted with how I'm doing!

Tom xxx

waiting is definitely the hardest part!

by Tracey_E - 2019-11-24 22:01:09

But you are being monitored, so if anything were to happen they'd be all over it in seconds. Honestly? Hanging here is probably not the best thing, get your mind on something else. What can you do to distract yourself?

Worst case, ask them for something to calm you. I generally avoid meds when at all possible but there's a time and a place for them, nothing wrong with asking to take the edge off. They offered me something when I was in your shoes. I said no thanks but begged them to give my husband some lol, he was driving me crazy! I'm pretty chill but my husband does not handle worry well. He was stressing me more than the surgery.

This will all be over before you know it. Trite but true. Until then, do what you need to do to get through it. Ask friends/family for what you need- be it bringing in decent food, games or other diversions, or getting out of your way so you have quiet time. Be selfish this week, it's ok. Message me whenever you like. Been there, done that, got the cool scar and normal heart rate. Thinking of you. 

Like Tom Petty said ..

by Pacer2019 - 2019-11-25 01:20:05

Waiting is the hardest part ..... everyday you see one more card ! 

My thought would be IF something did happen you are in the best place possible surrounded by experts and all kind of treatments . 

Rest in knowing you have a high probability of no problems and a very high probability of getting immediate help if you do 

One available option may be telling your nurse you are feeling anxious and can’t relax - maybe they give you Xanax or something to help out . 

My goal in the hospital is always based on a spare me the details and wake me up when it’s over philosophy ..... sometimes that means a sedative 

 

just relax

by dwelch - 2019-11-25 02:48:13

You should be low risk. If you read my other post to you I went years from the time they found my CCHB and pacer number one.   Not monitored just a visit once a year to see how I was doing, I made it through and was doing what I now know to be very stupid things.  Also BPMs in the 30s when sleeping for whatever reason back then I went in the night before the surgery, my folks saw my rate before they came in and woke me up.  My resting rate when awake was always around 44.

Looking at the posts/dates you are 6 out of 9 days of waiting, you are most of the way there, you have made it this far the next couple/three nights aint no thing.  You are already over the hard part, learning there is an issue, that action is being taken for the issue, you are young you are going to heal fast.  This is all going to work out fine.  You if you choose are going to be an old pro at this site before long.

What works for one person doesnt work for everyone, I watch movies, lots of them or binge watch tv shows.  Or play solitaire on my computer.  YMMV.  Youtube, you could easily spend three days in a marathon youtube time suck, your biggest problem is keeping your laptop/tablet/phone charged not the waiting...

Watch Khan Academy videos and learn something new.  Read dry textbooks about higher math or science, something that puts you to sleep, sleep is an easy way to pass the time.

I also agree that you should avoid this site, nor any other related sites, out of sight out of mind.  I hope you dont read this until after your surgery.  

Either way, good luck, it aint no thing, let us know when they have you all wired up inside with device number one...

 

So Young !

by Marmite - 2019-11-25 06:49:19

Aww - 23 yrs old. It must be a big shock for you. 

I agree with the others about trying not to dwell on that monitor - although it is hard to ignore - beeping away by your side! Can you ask for the screen to be turned off?  The nurses will still be alerted by a bell if your HR drops too low.

Re: the operation and your diagnosis. If you're scared say so and ask to talk through any worries you have with one of the nurses.It might help you quite a bit. 

I'm facing a replacement op in the next few weeks and I'm scared too and very grateful that I'm not sat in a hospital bed with nothing to distract me.  It helps to talk it all through rather than sitting there pretending to be unconcerned and brave. Could you reach out for a little support from the nurses?  

I’m from Birmingham

by laura1brown23 - 2019-11-25 20:29:54

Hey Tom!

 

Ah Cambridge! A very nice part of England! Yes I can imagine, I had my monitor around my neck and it sent me that mad they took the screen out of my room at the hospital 😂

but yes, Thursday it will be over and you won’t need to fear about your heart rate dropping again.

will you please message when you’ve had it done? I’ll wait for it. 

But yes, it suddenly gives you a reality check! But don’t worry, you have your whole life in front of you and the pacemaker won’t hold you back.

 

laura xxx

Finally!

by Tommy1996 - 2019-11-28 10:45:33

UPDATE

Thanks everyone for your comments, worries and reassurances I had the PM implant yesterday and despite the pain and discomfort im so happy. My consultant said it went perfectly and im pacing perfectly - I already feel the difference from a resting rate of 28 now up to 60+. Glad to be a member of the club.

 

Tom

Pleased for you

by crustyg - 2019-11-28 18:56:23

And thanks for providing an update.

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