New member looking for support!

Normal life

by Theknotguy - 2020-05-26 10:34:46

Rachel:
 
 Welcome to the club you didn't want to join.  Unfortunately I can't relate to your condition - other than the pacemaker part - because mine is implanted  in the left shoulder pocket.  I also have heart block and not the congenital heart condition you have.  

Some anxiety, especially with a congenital heart condition, is to be expected however I really wouldn't let it rule your life.  Medical science is advancing very rapidly and new discoveries are made every day.  Things that used to be life threatening aren't because of medical science advances.  And that includes the current Covid-19 virus problem.  

As for stretching and moving, the doctors give you extra length on the leads and I really wouldn't be concerned about your Yoga exercises.  If it is a concern I would consult with your cardiologist and his staff.  You aren't the first to take Yoga and I'm sure they have someone who can give you pointers.  If you don't have a current cardiologist you can always contact your medical insurance and talk with their advisory staff.  I was working with a guy with a pacemaker who started lifting weights.  Went really hard and worked up to bench pressing 300 pounds.  Broke a lead and had to have it replaced.  Most of us don't subject our leads to 300 pounds of force so we shouldn't have to worry about breaking leads below that number.  He also said he knew he was pushing the envelope and deserved what he got.  So you have to do some extreme things to break a lead.  And, since you are on your second pacemaker, your leads are well implanted. 

Discussions on this forum about pacemakers failing have usually boiled down to: 1) Pacemakers don't fail that often.  They are really reliable.  But when you have thousands of machines made there are bound to be failures.  But not enough to worry.  2) Even if the pacemaker does fail, most of us have a residual heart beat that will keep us alive until we can get to an emergency facility.  We may not feel good, but we can survive.  3) Most other problems usually give us enough warning so we can get it taken care of before it's a crisis.   -- If you do feel yourself worrying inordinately there are people who can help.  

Most of the regulars on the forum have dealt with the anxiety part by figuring out what we can be concerned about and things we can't change anyway.  Doesn't mean we have to like the situation but worrying doesn't get you anywhere and doesn't help anything.  

Hope everything continues to go well with you.  And welcome again to the club you didn't want to join.  
 

Welcome Rachel!

by Janessa - 2020-05-27 00:01:32

Heyyy, my name is Janessa and i've been in the club for about a year or two, but i got my pacemaker implanted in 2016. i'm 16 and i'm still on the same one (4 years in) i have congenital complete heart block and have the same annual and bi-annual appointments as you but my pacemaker is in my left chest about under my collarbone so i cant relate to you on that part :( anyways, i can relate to you on some other things. hahaha  i usually only do yoga in gym class but it isss super relaxing! and dont worry girl, i'm literally the same, im so much more paranoid now about my pacemaker, and my scar, and if its noticeable, or if its gonna fall or if my lead's gonna break or something so much more now then before (but then again maybe its just a teenager/young adult - overthinking thing). i usually manage by just talking about it to my friends who also have heart conditions and we laugh it off to help. haha anyways i wont keep you too long but it was nice to meet you and i'd love 2 chat more so feel free to message mee:) take care xo.

hey!

by Tracey_E - 2020-05-27 09:15:41

Nice to meet you! I'm also congenital (different issue) and been paced for a long time. I think when we are kids it's all we know, just an awareness that we aren't like the other kids. We aren't thinking about the details and the future and what can go wrong. Now you're an adult and thinking like an adult. We think about our mortality a lot younger than our friends who have never dealt with a serious health issue. I don't think that's necessarily a bad thing. It matures us more quickly, makes us more empathetic.

Yoga, if it feels ok it probably is ok. That's what my doctor told me when I started getting serious about lifting weights. Mine is subpectoral so when I do yoga I'm more likely to feel it on planks and other twisty holds. If it bothers me, I modify, but usually it's just an awareness, not uncomfortable. How big were you when you got your current leads? If you were smaller and they are very old, have a discussion with your doctor about how much slack you have and the risks of damaging them. I would think when your current leads go, they would abandon those leads and move the the chest. 

I went through a phase when I thought about it a lot, but now not so much. I'm 53, been paced 26 years so I've had a few more years than you to get blase about it. The thought of leads going bad is always in the back of my mind, but I've discussed it with my doctor and have a plan for how it will be handled when the time comes to extract. For me, the unknown is the most scary, give me the facts and some time to let it sink it and I'm ready to move on. Also, I've been very active for years. Some doctors are conservative and give us a list of restrictions. My doctor has always said live my life and don't worry about it.  I've been on roller coasters, ziplining, touring power plants, jumpstarted cars, run a generator, even rode an Olympic bobsled. I've never had a problem with a lead, I've never had a battery fail. I trust the pacer. I haven't managed to damage it yet so I don't really worry about damaging it in the future. 

Welcome! Glad you found us. 

hard hits

by dwelch - 2020-05-28 03:13:25

I always like Tracey_E's answers, anyway....

Like her I am on device number five, complete congenital heart block, different problem than yours but congenital.  Back they they didnt have ekg machines everywhere you didnt get hooked up to one every time you had a runny nose.  So it was pre-teen when there was a reason and that turned out to (easily) see my issue.  The doc waited and watched another 7 years. I basically ignored all warnings and restrictions and am lucky to be here.  But even after the device I was an active vert ramp skater and bmxer, go watch some tony hawk videos, but instead of landing most of the time I was falling.  many hard slams.  Not skateboarding but I have had a couple very hard hits directly on the device.  No issues.

I have a 33 year old lead, a 26 year old lead, and a few year old lead that I am using and a broken 33 year old lead that broke installing device number two. (on device number five right now).

As Tracey_E pointed out getting a device as a child is often not in the shoulder but they know you will grow so the leads have some room there but from this site I belive the expectation is that going into adulthood they will put one in in the shoulder and abandon the last childhood one or these days they can remove the leads.

Also as pointed out your are moving into adulthood and your brain is becoming an adult brain, you are starting to think adult thoughts, including new fears.  All perfectly normal.

There are some folks around that started as a child, you are more rare than Tracey_E and I but we are not completely rare here either with the number of years and devices.  I rember reading many years ago someone who at that time was on device number 8 I was probably moving from three to four and had started as a child and moved from tummy to shoulder, etc.  Hopefully those few folks will pitch in here with their experiences.  One of these adult things though, no matter what your age is, dont fear the doc, just make the call, hey I have this concern.  The reality is that even if someone here tells you their child to adult story, they had some doc somewhere that you dont have (odds are near zero) so their doc did it one day one decade and your doc is going to do it one way this decade.  And those experiences may be different for that reason.  Your last abdomon pacer may be such that you dont have to move to the shoulder because of what they did when you started.  there is a wealth of experience here, but at the same time your doc decides who what when where things happen.

So short answer is I have leads older than you and I am not worried about them, they are likely routed in a way that is not done anymore, but still not worried about them.  While yoga does move and stretch the body to its limits I have pushed these leads to body jarring limits and so far had no issues. Twisting and turning the body to its limits as well. My only concern for you is how far is the device from the heart (not as the crow flies, haha, but how they routed the leads) and how much slack is in there and is it such that it can pull on them to take up that slack. I imagine they were doing xrays or scans of some sort through your childhood.  You should be having the talk with the doc about this.  "I have read that going into adulthood the abdomen is not used and a new set of leads are put in the typical place below the shoulder, is that something we are going to do and if so when"...."is the old pacemaker and leads going to come out"..."will the old pacemaker leads pull on the heart for the rest of my life and cause any risk if not removed"...and of course..."is there any reason why i cant do yoga?  What are the risks?"  (understanding that each doctor is going to have a different answer, and most patients dont follow the doctors instructions to the letter if at all)

Okay that wasnt a shorter answer.

Welcome to the club.  Glad you are with us.  You bring experiences and knowledge that most of us dont have.  I hope you stick around and share what you have learned.