Depressed

fight back

by Tracey_E - 2019-10-21 15:24:02

First of all, know that what you are feeling is NORMAL and quite common. It is a scary time, but most of us find the reality is not as bad we as build it up to be in our heads. It's normal to be scared, it's normal to be a bit depressed.

If it doesn't go away, if it keeps you from enjoying life, then it's time to talk to someone. A bit of the blues is normal, but clinical depression is a disease and it does not go away on its own. Don't be afraid to ask for help. 

I would suggest you reach out to Janessaa, another new member who is close in age to you and about the same place in her journey. I'm also always happy to chat if you think that will help, feel free to message me. I am you + 25 years. I'm healthy, active, and lead a full life. I had two children after I was paced. I own a business, do Crossfit most mornings, am running a 10k and half marathon back to back in two weeks with one of my daughters, just got back from hiking the Grand Canyon with my other daughter, took the church youth group to do a treetop ropes/zipline course the week before that.  There's nothing I want to do that I cannot and no one would look at me and guess I am paced. 

When I was your age, I too had been diagnosed with CCHB and had a heart rate in the 40's. Unlike you, my doctor wanted to wait and I was scared so happy to procrastinate. In hindsight, I resent him for not pushing me to be paced sooner. I started off asymptomatic but gradually declined so much that I had no idea how bad I felt until I had a normal heart rate for the first time in my life. My rate declined gradually, was 22 when I was admitted for emergency surgery. I wish I'd done it sooner so I could plan it and not freak out my family.  I could feel the difference the minute I woke up in recovery. Oxygen is amazing stuff, and when we're getting half of what we're supposed to it takes a toll on the body. 

To address your concerns...

I am on my 5th pacer. One of my original leads is still working great. The other conked out at about 15 years, which is average lead life. I had room in the vein so when they replaced the device, they capped off the old lead and added a new one. Easy.

Battery replacement is also super easy. I dreaded the first replacement but now I barely bat an eye. Most of the restrictions the first time are from the new leads, most of the pain the first time is from creating the pocket. And I never found the pain to be bad, other than a few nights I mostly got by on tylenol. When they replace, they go in the same place so it's all scar tissue (so, mostly numb). If I get an early appointment, I'm home fixing my own lunch. This last time, I scarfed down some lunch, took a nap, then worked on the computer a few hours. And after, we have the latest and greatest technology. Getting a replacement can be a good thing, the newer ones are always a nice upgrade. 

I have never once been told this will shorten my life. I am well monitored, so if things ever were to turn south, we'd be right on top of it. I am aware of the risks of heart disease from not eating right or staying fit, so I am extra diligent to take care of myself. I figure both of these give me an advantage. 

20 years ago, lead extraction was unheard of. 10 years ago it was new and risky. Now, I won't go so far as to say it's easy but it's no longer considered high risk. The lasers they use to extract have come a long way and the number of highly experienced surgeons is much higher, the leads they use are thinner and tougher. I see a adult congenital specialist, he's head of ep at a large childrens hospital and sees 1000+ adults like me, many who have been paced a lifetime. So, he also sees a lot of extractions and his team performs a lot of them. I asked him about complications. I'd heard that they always do them with a cardiothoracic team on standby in case of emergency. In all the extractions he and his team have done, ever, they've only used that team twice, and both patients fully recovered. So, I don't worry about extraction like I used to. 

I hope that helps you feel better about it! Be careful what you read here because many with unusual complications come here for answers so it makes it seem like the rate of complications is a lot higher than it is. And also many are not congenital and otherwise healthy like we are, CCHB is a very straightforward fix. I was diagnosed in 1970. I have never once had a serious complication and most of the time I don't even give it a thought.  It's just a part of me. Shoot me a message any time if I can help. 

Hey

by lcw306 - 2019-10-21 16:08:44

Hello!

I can definitely relate with what you are going through. I am 28 years old and received my pacemaker at age 24! I also got my pacemaker for heart block!

It can be a scary time and I found it incredibly difficult as I didn't really know much about pacemakers or the surgery. I found the more research I did, it helped.

Never be afraid to reach out and talk to someone about your feelings either, a therapist can be so helpful in talking about your feeling and helping navigate this process. 

I have felt so much better and healthier since my pacemaker has been implanted. I didn't realize how much of a difference in my life it would make!

If you want to reach out and chat or have any questions just DM me!

you got this!

by Janessa - 2019-10-21 22:13:20

Not to sound cliché, but honestly from the bottom of my heart I truly believe everything will be okay if you keep fighting. I went through the same faze just after I got my pacemaker when I was 12. I was always sad, I never wanted to leave the house, I didn't want to eat, I didn't want to hang out with my friends or talk to anybody because I was trynna figure out how to cope with this life changing thing which at the time I thought was the worst thing in the world. I felt so depressed and hated my situation. But as time went on I realized how much the pacemaker improved my life and how grateful I was to be healthy. So far for me, although the pacemaker has a few minor negative impacts on my life, the positive impacts are much more significant and you just got to keep pushing through to realize it! I hope you begin to see the bright side and feel better :) always here if you need to chat.

We are the same

by Heid-i - 2019-10-22 03:00:27

I'm 22 and felt the exact same when I told I needed a PM

Honestly you don't know how much I understand! 

It got worse on my appointment date because I waited for hours longer than I should have and just got told to go home cause the hospital ran out of beds... 

The whole thing just dragged out even longer 

I had my PM inserted a few days ago and honesty it's like a whole weight of worry and stress has just been lifted of my shoulders that was weighting me down 

I'm sure it will be the same for you and you'll have that sense of relief too

You will be okay! DM if you need xx 

Thank you

by Sana - 2019-10-22 13:48:07

Thank you everyone..

Trying to stay positive :)

perfectly normal

by dwelch - 2019-10-24 01:40:01

Your anxiety is perfectly normal.  Understand that a pacer is suited very well for heart block, its about the best heart problem you could have if you have a heart problem for a pacer. 

The pacer is not a problem it is a cure, it makes your life better/normal it is not a burden.  Nothing to fear there. 

Not having a pacer is the only thing you have to fear.

The anxiety is normal and sorry to say it might last in some form for a while maybe the first year, but IT WILL PASS.  

These surgeons do these surgeries all the time, they are good at it, the whole staff in the OR knows what they are doing, the need for lead replacement is rare.  Myself and others at this site have broken leads that are still in there, wasnt worth going in to remove them.  At the time around 25 years ago when my lead broke you couldnt really remove them.  And then it got experimental and I wouldnt say routine but the current tech and the current docs can do it as needed, and are successful when they do.  But in my case there has been no need to just go in and remove it, its not causing problems, why bother.  When my fourth lead (three in use one broken) went in there was talk about whether or not to remove the broken one if there wasnt room or "tunnel" over to the other side and come in that way.  So even there it wasnt necessarily a requirement to remove that lead.

Replacements are simple, simpler than the first surgery.  open, unplug, plug, close, done, go home.

Unfortunately like most of the internet, most of the folks that visit here and ask questions are having fears or problems.  The majority of the threads may be not-positive/scary things, but that doesnt mean that is the norm.  For everyone with a problem there are countless folks without.  You have Heid-i, your age, going through this and you have Tracey_E and myself both with complete heart block from birth and currently both just happen to be on our fifth devices.  I am very happy to have a pacemaker, it is not a burden nor something to fear in any way.  Not having it, not getting it when the doc said it was time, that was something to fear, and in my particular case I should have gotten it years earlier as my activities were not smart for someone with heart block.  It has allowed me to grow up, get married have a child, see her start college, etc.

We are all different though and what may work for me to combat anxiety may not work for you, what is common is that we all go through it as we transition from without a pacer to with a pacer.  Cope with that day we find out we have a condition.  And from at least the posts I read everyone has conquered their anxiety, that doesnt mean within days or weeks of the procedure, can take months or longer, but it will happen.

It is perfectly normal for your heart condition, facing a pacer some day, etc to be consuming you right now.  Find and/or use the tools that work for you to work through this be it a distraction approach, an education approach (read as much as you can about it) a faith approach, etc and use those tools.  If you need to seek outside help, nothing wrong with that, counselors are well trained in tools that work for folks to get through anxiety and fear.