Scared Newbie

Welcome to the World of the Electronically Enhanced!

by Lurch - 2016-12-21 17:43:26

Of course the implantation site will be a little sore for awhile, they cut a hole in your chest, ran some wires into your heart and stuck a metal box in there!  Give it some time.  

You are probably still at the stage where you reach up to catch it every time you bend over, convinced that it is going to fall out of your chest.  That is normal, you will get used to it!

You now have an advantage that lots of people never got the opportunity to enjoy!  Remember that with every new life event you experience; because you sought help and had this device placed in your chest, you got to experience that new event!

Yes, you have found a group that understands!  Some times we are a little rough on each other, but some times that is necessary to get through the tough times.  But always remember, we, and others in your life, care and are glad that you got the help you needed! 

Life in the pacemaker club

by Selwyn - 2016-12-21 18:21:47

Welcome. You are one very lucky person to be in the right place at the right time, and now you have a pacemaker to stop such a catastophic event from happening again. Have you thought of doing the Lottery?!

Healing can take a few weeks, then the majority of us forget that we even have a pacemaker, getting back to the activites we were doing ( see the exercise section of this club), without the problems of backouts and falling flat on our faces!

Not all illness runs in your family ( my kids always say, "Blame it on the parents"). The cause of a lot of the conduction problems of the heart needing a pacemaker is often not yet understood ( though coronary artery disease, cardiomyopathies, congenital problems, infections etc. are understood- sort of). A lot of exercise can cause fibrosis of the heart.

( see https://www.ncbi.nlm.nih.gov/pubmed/23478555). Everything in moderation!

The rest of us just think that you can go mad looking for causes that are not yet known to medical science.  So don't beat yourself up, it is most unlikely that you have caused this problem by what you have done previously.  Be reassured it does not run in the family- good news for any offspring.  As for me- my Mum had exactly the same problems as myself ( PMs are in about 60/100000 population)- luck or design? Who knows?

I continue to avoid Bungee jumping. Life in any event has its ups and downs.

Best wishes,

Selwyn

Rest assured

by Good Dog - 2016-12-21 20:28:38

Many of us were fine one day and had a PM the next! So we understand. I had mine implanted suddenly at the age of 38. That was 30 years ago. It certainly is a little unsettling at first. That is normal. That is the bad news. The good news is that you will go on and live a long and normal life! As the previous post indicated.......someday soon you'll forget you have it. With my PM, I can do anything anyone else can do.

My life with my PM has been completely normal in every way (except of course for the routine checks and battery change every 10 years). Once you get past the fear of the unknown you'll soon realize that there is nothing to fear. On the contrary. You won't need to worry about your heart anymore!

So once you are fully recovered (a couple months), just go out and live your life as everyone else does. Enjoy it!

Sincerely,

David

Been there

by Mcd - 2016-12-22 09:35:20

6 weeks ago I was where you are.  The first couple of weeks were rough trying to figure out what I did to deserve this.  The pacemaker forum really helped me.  One said we are the lucky ones to me.  I do what I want now, can finally lift my arm over my head!  I do get little reminders I have a PM.  I just tell myself that it's only been 6 weeks and to expect a few twinges.  I feel great, don't get tired, and this is just the beginning!!

I a very new too

by Ileen - 2016-12-22 11:29:59

God blessed us, I don't think luck had anything to do with you being in Er at right moment. But that is my opinion. I had mine a day and a half ago! Very sore. First night was rough, and the morning was pretty bad, got a cramp in chest when they checked to see if it was working right!( He said it was perfect) I am home now, hospital was fine. Nice nurses and staff.I am having trouble trying to keep my " electric toys" away from my pacer. Kindle, phone., I don't know how I am gonna style my hair. It says no blow drying by my chest. Hmmmm! I will have to figure it out! But, I am grateful I have this in, so I don't have to worry about the passing out stuff. Never had that , just a couple of pauses , short. But, I didn't want to start. Little worried about infection.( Ok, stop worrying) We will get a hang of this. I gotta stop typing, getting i was) Hugs to all!Have a Merry Christmas and Healthy Happy New Year!!

Great welcome

by nightskye65 - 2016-12-22 12:30:45

Thank you all so much,already very glad I joined this group.  I know who very blessed I am and  know it wasn't luck.  I do believe in God and have a pretty strong faith (which this has strengthened already).  I know that God had a hand in this, in having a doctor and nurse nearby when I first collapsed at the restaurant to the all the doctors and nurse at the ER and then cardiac ICU.  

The soreness is getting better each day and looking forward to being further post-op when I get to that place you all talk about of not even remembering you have a PM.  This is a small price to pay to be able to enjoy the rest of my life.  They say what doesn't kill ya makes you stronger, this is case in point for that.

Looking forward to the rest of my life and believe this happened for a reason, thought may never know why or what caused it....it is what it is and I am okay with that now.  I am just thankful that there is such a device that will allow me to enjoy the rest of this amazing journey.  Thanks, Selwyn about the information on the exercise part, that has become an important part of my life and something that makes me feel good and I enjoy it, so want to get back to it as soon as possible.  I have also been trying to get the last of my unwanted weight off and don't want this to be a huge set back, have worked too faithfully to be healthy for that.

Thanks Mcd, looking forward to being where you are soon and moving forward from there.

Ileen, I can understand the hairstying, things are a bit tricky at first, doing your hair, shaving your legs and then there is the whole bra thing, don't even get me started....lol.  I have an awesome family, have been staying with my parents since released (I live alone) and they have been a great help but pretty much have it all down now so can do it on my own.  Don't hesitate to ask for help if you need it for a while.  I am actually starting to look forward to going back to my place after Christmas, to get back to normal.  

Be thankful didn't have the passing out, that in and of itself it not good, have a knot that is still tender on the back of my head that reminds me of that...lol.

Thank you all so much for the welcome, the encouragement and the great feedback.  Look forward to getting to know you better and sharing as we go along....with our common denominator being our PM's.

Have an awesome Thursday!!

Welcome!

by Sarbear - 2016-12-22 14:36:23

Hello! I'm a 26 year old with the same conditon.  I've been in "the club" for almost a year and I promise it gets easier with time.  Like you, I was in great shape-rower in college and kept up with it after graduating.  A few months from now you will realize that it isn't a worry or a concern in your day to day life at all.  You can still be active and do the things you love-I'm coming off another full competetive rowing season.  Once you heal up a bit and start getting used to feeling of having the pacemaker it'll start feeling more like peace of mind than something to be afraid of.  Feel free to reach out if you need help with anything-this community has been really great!

Thanks for the welcome....

by nightskye65 - 2016-12-23 13:00:59

Hey Sarbear, thanks for sharing your story.  This forum has already helped.  I am sorry to hear about your situation, you are so very young.  I have kids older than you...lol.  I am hopeful that with time things get so much better.  

I am not in any pain but found myself just uncomfortable.  I have such a weak stomach and I don't handle needles, blood, incisions, IV's anything remotley like that well, never have.  I get queasy just hearing people talk about it or describing it, seeing it and that is when it is happening to someone else.  This whole thing happening to me is a real struggle, something I try very hard not to think about, but can't really, there is always a reminder.  

I am not sure if any of you have felt this way but I seem to be very aware of every little ache or sensation in my body, particulary around my left arm, incision and chest area, which then causes me to worry or wonder if that is normal or will it ever go away.

Has anyone else experienced a sensation in and around their heart that feels like a warm sensation.  Usually it is between the PM and my heart and usually on the left side of my heart near by breast bone?

Does anyone feel like they know when their PM kicks on and off and how would you desciribe that?

Okay, now on a lighter note...I have come to realize that gravity and being chesty (which has always been an asset) are now not my friends, at least for the time being....lol.

Happy Friday to all!!!

...

by Sarbear - 2016-12-23 16:43:33

I am the same way with blood and needles, etc.  Medical stuff is actually one of the things that used to trigger my Veso Vegal reactions, so right after the pacemaker was put in I'd think about it, work myself up, which would cause the pacemaker to start pacing and I'd make myself feel worse and get stuck in a loop.  Every little ache, pain and twinge in that area for the first 3 or 4 months really freaked me out because I was convinced something was infected or leads had been pulled.  Everything was fine, but there's no shame in calling your doctor if something doesn't feel right even if its only for peace of mind.  

I can definietly feel mine go off-especially since with our condition we tend to pace less than a lot of other people so its more noticeable when it is active.  When it kicks in it can be quite noticeable.  To me it feels kind of like when you go over the top of a rollercoaster or are on an elevator and your stomach drops, but more in your chest. When I'm pacing ventrically it feels like I can feel the individual heart beats.  If you mention this to your doctor they can change the settings to make it less noticeable.  Once my doctor adjusted my settings back I went from feeling it multiple times a day to just once or twice every day or so.  

Vicoria's Secret makes great front close heave duty sports bras that go on like a jacket and were life savers when I was recooperating!

Good luck with everything and Happy Holidays :)

Thanks Sarbear

by nightskye65 - 2016-12-27 12:30:07

I am very happy to have come across you in these forums.  Your comments have struck a chord with me, in that it sounds like we have so much in common.  It is great to be able to share with others that have pacemakers but until I joined this club, didn't realize all the different kinds and condidtions that cause people to have to have pacemakers.  It is extremely comforting to talk to someone that has the same diagnosis and same types of triggers.  Your words are very comforting to me, I can't thank you enough.

Called my doctor's office at 1:00 a.m. on Christmas morning, as I had felt two what I would call little shocks in the night before and then felt like the PM had shifted of moved, felt different.  It wasn't anything to worry about just,that the swelling in the area had decreased quite a bit and so the pocket of PM was moving as I laid down or moved.  It is all so much to get used to.  You are right, every little twinge, discomfort or sensation catches you off guard and makes you worry or wonder, which makes me anxious and quesy.  I am trying really hard to focus on the postives and talk myself through it.  I know it will take time.

I haven't figured out when mine is pacing for sure.  I have different sensations, guessing that will come in time.

Have you or anyone else in here, ever had sensations where it feels like a warm, almost fluid sensation under your PM and around your heart?  I have that fairly often.

I still have four of the five steri-strips over my incision, even though two weeks out.  I just don't have the nerve to pull them off, was told to leave told at the hosptial to leave them until the fall off on their own and others have told me to remove them.  They are like my safety blanket at this point, not only making my feel more secure about my incision but also covering the incision some, as i already know that seeing it completely uncovered is going to make me quesy, which is a trigger for me. Even touching the area and feeling the PM makes me  a bit quesy, trying to get past this with baby steps.

Hope everyone had a wonderful Christmas and enjoyed time with family!!!

Still Recovering

by MaryVan - 2017-01-02 17:12:28

Hi, my surgery was on 12/16/16. I returned to work on 12/27/16. It has been scary. People are helping me at work. I am a secretary in a very busy Pathology Department located in a hospital. It is not at all a "sit down" job. I also drove myself to work, taking very not-so-traveled streets. Takes longer, but I feel it is part of the recovery mantra, "One day at a time".

I cannot tell you how many times I wanted to visit the ER last week. I felt pressure around the incision site, rapid pacing of my heart, and still slightly dizzy if moving head too fast. My incision is so obvious and it looks strange to see the outline of the PM in my chest. BTW, I just rinse the incision site with warm water only. Looks like it is healing. I finally emailed my cardiologist. We made a follow up appointment with him, not the nurse practitioner.

I, too, have been told everything is fine as for the PM and the wires. But I do realize the mind can be very powerful, especially with fear of things not going well. I feel every ache and pain. Glad I am not alone in this respect. I am looking forward to discussing with the doctor subjects such as: when I can return to the gym for treadmill walks; when I can incorporate stretching-type Yoga exercises into routine (I attended Yoga classes before PM) ; and my passion- working in my veggie garden. I know: One day at a time. 

Welcome MaryVan

by nightskye65 - 2017-01-02 20:59:39

I am in my third week post op (PM implanted 12-12-16).  I am very fortunate, incision healing well, looks much better but still have some twinges of pain at the incision site.  I think being very conscious of every little ache, twinge or sensation is normal.  We now have a foreign device in our chests and leads embedded in the interior of our most vital organ.  

You are absolutely right, the mind is a powerful thing, sometimes that is good, but other times not so good.  I try to be very positive and focus on the blessed life I have but still have moments when I find myself down that I am having to deal with this at all.  That feeling like I just want to be my "old" normal, not this "new" normal.  

I know it will get better in time, just have to be patient and understand that what I am feeling is normal and I am not alone.  

I understand about the driving and side streets.  Seat belts and being heavy cheated are not positive things right now.  I find myself holding my left side to try to minimize the bumps and jarring.

I have moments when I feel light headed too, sometimes when I lay down, when bend down and come back up, etc.  but like you said we just take one day at a time and trust it will get better with each day, with the occasional set backs...such is life.  

I go for my first follow up with cardiac doc next week at my one month mark.  I too have many questions.  You are so not alone in this, we have much in common and there ar me many us.

 I wish you and everyone else in the recovery phase the very best❣