Brand new 4-4-19

Surprise!

by AgentX86 - 2019-04-07 23:36:19

Welcome to the group.  I'm sure you'll have no problems and will feel far better after than you did before.  It wasn't a surprise for me (my EP had been pushing me that way for some time) but it still was when it happened (started having asystoles, in addition to unrelenting atrial flutter).  In a few months you'll all but forget you have it.  There is no real downside and a whole lot to look forward to.

Welcome

by pacergirl - 2019-04-07 23:39:35

I was a busy lady~wife~mom~friend~worker bee, who had renovated a house built in 1905, an Army wife, traveled the world with 3 kids following her husband, worked full time! Then BAM!  I was tired, I was done, I was confused, I was certain I was finished. 3rd degree heart block! Bradycardia. Then, just like that a PM.  Saying that it took me by surprise is an understatement.  After the PM implant I felt fine, but I was scared half to death. I was really afraid. I just couldn't understand how the bada$$ woman could go from doing everything very well to being a broken/weak woman. It took some time and to come to understand that if I was still alive that I needed to actually begin to LIVE AGAIN. So, I quit my job, opened my own business, made some money, bought my husband a Harley Davisdson and started to really do all the tings I always wanted to do.  I was back, but I was better! That was in 2005!  I'm coming up on my 3rd PM implant on April 22. I was just 52 when I got my 1st one and this one was a surpise to me, but, I am fine with it now.  So, honey, take some time for yourself, do what needs to be done, but I beg you to think about why you are still alive and then... Get BACK TO LIVING! You are worth it.

Hey!

by RedRocksGirl - 2019-04-08 02:19:46

Hello and welcome! I'm fairly new to the group too, had my first device put in January 17. I developed heart failure from a random virus that apparently settled in my heart about 2 1/2 years ago (my heart has had some damage from chemotherapy when I was 10 for bone cancer - resulting in having my leg amputated above the knee). My cardiologist tried to improve my ejection fraction with meds but after 2 years it went downhill and in Novmeber she said if we couldn't get it back up to an ejection fraction of 40% (I was at 31%) there was a possibililty of a pacemaker. In January it had only climbed to 33% so within two weeks of that echo I was on the table getting and ICD put in. Like pacegirl, I consider myself a pretty tough cookie, super active, always on the go so this was a huge shock and for someone who is strong and always very positive, I was terrified. I had a couple of complete meltdowns in the couple of days before the procedure. After getting the ICD put in I was so relieved and the morning after, my four major symptoms were GONE. No lie. I was no longer short of breath, no more constant chronic cough, no fluid in my lungs and best of all could no longer feel EVERY SINGLE HEARTBEAT (it was at the point where it felt like my heart was doing a gymnastics floor routine in there! Jumbled, nothing was beating in synch, SO awful and uncomfortable). My ejection fraction is improving, up to 38% at 10 weeks out. And mentally I feel like me again. There are times when I totally forget that its there although since mine is placed subpectorally and I walk with crutches (and use the pec muscles with every step I take on them) I'm having a tougher time with the muscle healing.  I know I'll get there eventually, its just a process and am getting a lot of practice at being patient!  I'm sure you'll do great!  Allow yourself the time to heal, I've found that not pushing it to early and giving your body all the rest you can for the adjustments it has to go through and the healing process to occur makes it SO much better in the long run. Best of luck to you!  :)

fear

by Tracey_E - 2019-04-08 09:43:41

The time to be afraid was before! That's when you were in danger, now you have a high tech computer picking up the slack. It's scary and overwhelming at first but you'll find that once you heal it's not hard at all to move on with your life and mostly forget it's there. If we have to have a heart condition, heart block is a good one because our heart is still setting the pace, all the pacer does is complete the broken circuit and make the ventricles beat when the atria does. Most of us have otherwise perfectly normal hearts. I'm a few years younger than you (52) but on my 5th pacer for heart block. No one looks at me and sees a heart patient. 

Same Situation...

by AmazonHunter - 2019-04-08 10:03:41

Hi Mike, I had the same situation happen to me on 3/27/2019.  Woke up in the morning with dizziness that would not go away no matter how hard I tried.  Luckily I had a regualr doctors appointment scheduled that day anyway.  I managed to drive myself there and I blacked out as I walked into the lobby.  The doctor did an EKG on me and called an ambulance. 

I too was in disbelief when I was given the news.  I asked if there were any other alternatives and I was told that if I went home it could kill me.  When I heard that I said 'let's do this".  I had 3rd degree which is what they call complete heart block. 

I am doing real good and feeling great.  It takes a little time to get used to accaepting the fact that you have it and then getting used to going on about life as if it isn't there.  In less than two weeks I am getting to that point already.  Medical technolgy today is amazing.

I have some follow-up stress test and cat scans scheduled later this month.  They want to keep checking on me closely for a little while and I am perfectly ok with that.

Goodluck with everything and I hope you are doing as well as I am doing.  By the way.  I am 52 years young.

Dan

Guys like to fix things

by Theknotguy - 2019-04-08 11:47:24

Mike:

Probably one of the best pieces of advice I got was from a nurse named Kelly.  I was about your age and started having problems with afib.  I had done everything the doctors had told me and ended up in the hospital anyway.  Was having a temper tantrum about doing the right thing and still ended up in the hospital Kelly gave me a sharp look and said, "You're a guy.  Guys like to fix things.  You aren't going to be able to fix this.  So you'll be a lot happier and live a lot longer if you accept the fact you've got afib and learn to live with it!"  Kind of a punch right between the eyes.  I shut up.  Then took her advice.  

I learned as much as I could about my afib.  Did everything I could to mitigate the circumstances.  It really helped when a few years later I collapsed on the  hiking trail when I was with my son's two dogs.  Definition of a problem.  Being on a hiking trail with no people and only two dogs - then having your heart stop.  Fortunately another hiker saw me go down and they were able to get an ambulance to me.  Spent six days in a coma and woke up with a pacemaker.  

I still had the, "Oh poor me." temper tantrum.  Lasted for about three minutes, then got on with the rest of my life.  Had to learn to walk, climb stairs, eat,  and live with a pacemaker.  I'm a guy.  I like to fix things, I'm not going to be able to fix this.  So I learned to live with a pacemaker.  Now I volunteer at the hospital where I was a patient.  Work on the heart floor taking heart patients out headed for home.  I let them know I'm a heart patient too and yes, there is a future.  I also volunteer at a charity furniture bank.  Work with the cut crew cutting wood parts, then make furniture for people who need it.  There are days I can barely walk in the house because I'm so sore.  But hey!  Guess what!  I'm still alive and kicking.  Gotta go in next week for a procedure - possibly  coronary heart disease.  Don't know yet.  But I'm alive enough to complain.  

So I'm sorry you had to go through what you did.  Welcome to the club you didn't want to join.  Here you are.  What are you going to do next?
 

Thanks for the replies!

by mikew - 2019-04-09 11:14:23

I am trying to learn my way around on this site. Thank you to all for your feedback. 

Same feelings

by marathonpaced - 2019-04-09 17:27:29

Just wanted to add that I've had all those same feelings...denial, fear, anxiety, and now I'm working on acceptance. 

I'm a 38 year old woman who runs marathons and has two young boys.  I told myself that this kind of stuff just doesn't happen to people like me!   I'd been having dizzy spells for years but I'd shake it off since I "only" passed out every once in a while (and I'd blame it on something else...dehydration, stomach bug, too much exercise, etc).  Needless to say when I finally went to my PCP as per my husband's push and heard the words pace maker for the first time, I was completely shocked.  I've always envisioned bad things happening to me but stuff like cancer or car accidents.  Pace makers were something that my grandparents had, not me!  The weeks leading up to my surgery were really hard and emotional.  Up until the day of my surgery, I was still questioning if this was really necessary.  

I'm 6.5 weeks post-PM and slowly feeling better about the situation.  I'm still emotional about it at times (I sit here typing this with a few tears in my eyes) but most days I'm accepting of the situation.  It helps that I'm able to get back into my usual activities like running, yoga, and skiing (attempting it this weekend).  I know I am lucky that my heart block was diagnosed and is completely treatable before something bad happened and I passed out in the car or out with my kids (that thought alone scares me to the core).  I know there are hundreds of medical diagnoses that are so much worse than this and people are suffering way more than me but its still hard when something like this comes out of no where.  When I'm feeling down, I remind myself that I haven't had a single heart block event since getting the PM and that's what matters most.  I'm safe to drive my kids around and can go for a run without the worry that I'm going to get dizzy and pass out.  

Basically I'm just trying to say that I completely get what you're feeling and know that you aren't alone in those emotions.   Allow yourself some time to feel bad and "morn" but ultimately you need to accept that this is your reality and you are 100x safer with the PM.  

Good luck!

no more fear

by dwelch - 2019-04-12 02:44:18

I also have complete heart block, from birth.  found it pre teens normal doc visit, I think I hear something go see a cardiologist and heart block is easy to see on an EKG.  We watched it for several years before my first device at 19 years old, I am 51 now, on pacer number five.

I was stupid and shouldnt be here, very active (well back then), and did some activities that should have killed me and my doc pretty much used those exact words.  My solution was not to tell the doc what I was doing rather than stop doing stuff.

The time to fear is the time you dont have the device.  heart block is about as easy as it gets to fix with a pacer.  Once they get it in there there is nothing to worry about after that...You can now drive without killing yourself or anyone else.  Can walk up and down stairs without taking your life in your own hands.  Can wake up tomorrow to see your family.  Yes, not pulling any punches you took a big risk.  But now, geez, it aint no thing.  Seriously sometime in the next few months when the scar is healed, you are used to the new perfectly paced heart, etc.  It will be like a belly button or a toe, you know you have them but you really dont think about them until you bang them on something, but then that goes away and you forget again.

I literally shoudnt be here, the stats for congenital heart block are pretty bad pre-pacemakers.  now it aint no thing.  without this though I would not even remotely have made it this far, gotten married, raised a child, etc...I have no regrets other than how stupid I was before, back then they were not as common as now, back then I probably would have gotten one sooner, certainly if/when i told them all the sports I played and how many hours per day doing such activities.  Life with a pacemaker aint no thing.  heart block without a pacemaker now thats a thing.

You know the coolest thing?  You call your self an old guy, me too.  Even now you will be the youngest patient in the place.  The nurses and such will sometimes comment on how young you are.  "You are young enough to climb up there yourself you dont need my help"...With my last one two years ago and worrying about having two working leads and a broken one and is there room for a fourth lead as I was changing to a three lead pacer (you have another twenty or thirty years to worry about that).  We can if we have to move it over to the right side but we would like to preserve that side as long as we can for the future.  And if you do the math, technicaly in my situation, I could get another 30-40 years (probably not but maybe), which means with devices so yeah we need to preserve that side.  Can you imagine 7 leads in there?  fortuantely there was room on the left for four leads, Im a pretty big, old, guy...

No worries, any mistakes you made getting to the operation are behind you, you did the RIGHT THING in going through with it.  heart block is super easy for a pacemaker.  Now you may have the empty feeling that I had pre pacer, that my heart got bigger and beat harder to deal with the messed up rythm of heart block (upper and lower chambers are not in sync so they have to work harder as they are fighting each other).  The pacer fixed all that made a nice smooth perfect rythm but I felt empty inside.  It is perfectly normal, take your pulse by hand for a full minute if you ever feel this way.  You will find that you are in fact still alive and your heart is actually beating and you can go back to whatever you were doing.

You will have a couple of visits this year where they check the scar and check the device it might need a tweak or two.  But by next year it should be dialed in and you just go through the annual visit and a new device every 10 years give or take (very unpredictable).  Unlike folks here with other issues, if your pacing at 100% that is perfectly fine, thats how it works with heart block, it fixes the electrical connection by firing the ventricles based on when the atria are firing, and that may or may not be 100% of the time.  The battery and as a result size of your device was chosen for your condition, other single lead folks with different issues and lower percenages have smaller devices with smaller batteries.  No worries.

Your heart problems or at least this one is BEHIND you now.  go back to your hiking and biking and all the things you love to do.