Accepting Your Heart Condition

I had a 3rd-degree complete heart block on February 8, 2021, with two stents and a dual-chamber heart pacer, implanted.  It is now 6-months on and I have had some issues with pacer pocket infection and my pacer removed pocket clean and dead tissue remove and my dual chamber pacer reinstalled in the same pocket.  Since the infection, my pacer tends to move in the pocket and gets hung up on my chest muscle that tends to hurt but it will pop back out.  Doc says it will heal around the pacer and prevent it from moving in the next few months.

 

Putting aside the pacer implant and the second surgery for the infection all the printouts say I am normal for a 67-year old guy that is very fit that walks every morning for an hour and rides a bicycle a lot. The issue I have is mental and lack of confidence now.  I tend to get light-headed when I stand up after working on a laptop.  Being light-headed happens during yard work a few times and I had to sit down and let it pass.  Getting light-headed doesn’t do much for the confidence level.

 

The mental game is in my head now knowing I will never have my own heartbeat back as I am 100% paced at 60 bpm now.  The electrical side of the heart is dead but the pumping muscle side works very well with no muscle damage when I had the heart attack as I died in the ER and they quickly beat my chest and shocked me back to life six times.

 

The question is how does everyone deal with the mental part of the heart game we are now in?  I went from full Alpha male to I can’t do that anymore.  Flying is over scuba diving, windsurfing, and all of my fun sports except my mountain bike riding.  No more downhill racing.  It’s been a big blow to the ego being sidelined how do you all deal with this part of the mental aspect?


9 Comments

Life changes

by Old male - 2021-08-23 23:39:49

STACHE...... Keep doing what you can walking and biking. Watching, reading the world news today I find depressing. The gym is my sanity as it relieves stress. Have dealt with heart issues past 24 years starting with bypass, a couple of heart attacks, stents and now on my 2nd ICD. Heart failure diagnosed 7 years ago followed by Afib which is pretty much full time now. I know my limits and have to pace. Still employed as small business owner.. With all the past 18 months disruption of normal life has taken a mental toll on many of us.. I ran into a friend from a gym we belonged to.....that's now permanently closed. He had since retired from a longtime job, sold his house and left neighbors he was good friends with and said his church he was active in had permanently closed. Talk about change. Remember things can always be worse. Keep active..

Coping

by AgentX86 - 2021-08-24 00:08:01

I understand why flying is no longer an option but why is scuba, windsurfing, and sports? There are some limitations but life isn't over.  Look at it this way, it isn't over because of your pacemaker. One foot in front of the other.

I haven't had a heart attack but I have had CABG surgery, three cardiac ablations (and an AV node ablation) as well as a carotid cath (supposed to sent it but it wasn't necessary).

Heart block is one of the simplest problems for a pacemaker to fix.  Likely 30%, or more, of the people here have heart block. I do, too, but in my case it was intentional (AV ablation).  Not only am I 100% paced but completely dependent on my pacemaker.  My EP said that if my pacemaker just stoped, I'd have a few seconds of consiousness and perhaps an hour before I was in real trouble. 

Problems, sure, but I'm here and can do pretty much what I want to do.  I'm a couple of years older than you and am still working, because I want to, but will retire some time later this year. Life is great!  It's attitude.

Lightheaded

by Persephone - 2021-08-24 01:01:48

Hi Stache, I was very displeased with ongoing lightheadedness I experienced after implant when doing something as simple as standing from a seated position... carrying a weighted load (such as doing yard work) could also result in being lightheaded. I was able to get PM adjustments that took care of the problem.  Have you talked to your EP about it? I agree it's a quality of life issue and should be addressed as possible  I'm also 100% paced due to HB but since I don't have much choice in the matter, I try to roll with it. You've been through a lot, give yourself time and space to heal and maybe consider seeking counseling as an additional way to figure out how to move forward.  I'm not an alpha male, but I was always the capable mom, then suddenly I was barely able to walk up the driveway at age 55. Post PM, I can walk up that dang driveway and can do pretty much anything I want or need to do, really not much in the way of limitations.  I hoist fairly heavy musical equipment around, play bass guitar in a small band, go hiking, still working full time at a job that is challenging but satisfying.  I didn't like getting a PM, but I'm glad to be here to experience really cool things like seeing my kids graduate from college.

not accepting any condition

by justjoe - 2021-08-24 09:26:54

Everyone need is different so I can't speak to your case, but in mine I'm not accepting anything. Was shocked by needing the pacemaker in April, but since then restarted lifting, running, biking, and swimming. I jumped out of a plane with my daughter for her 18th birthday, and I have a 10k this Sunday.

For the light-headedness, maybe have them check your lower limit? Mine was originally set to 50, and I had some episodes where I felt light headed as you describe. They raised it to 60. My normal resting pulse had been low 50s, so sucks that now my left ventrical is basically always run by the pacemaker, but this seemed to help with at rest symptoms. Now trying to work on the other end--raising the upper. . . 

 

 

Change the things you can

by Gotrhythm - 2021-08-25 15:09:41

Don't assume the cause of everything you're going through is the pacemaker. Just a couple of days ago I read that more then 50% have depression after a heart attack. It's so common, it's almost normal. There's no weakness in seeking medical treatment for a medical condition. In situational depression a short course of medication may be all that's needed. So have a talk with your family doctor (not your cardiologist) and start getting your life back.

As others have said, even if you're 100% pacemaker dependent, your life isn't over. You can still pursue many of the activities you enjoy. Our membership includes athletes of every kind and degree of fitness. I understand there are licensing issues with flying, but nothing about having a pacemaker should make you give up all windsurfing, down hill racing or scuba diving.

Take back your power! Pacemaker are incredibly tough, reliable, and once healed over practically impossible to dislodge. Too many of the cautions we are given are one size fits all advice or lawyerly examples of CYA. Don't accept anyone, even a doctor, telling you any activity is "out" until they tell you why it's out and also what's the worst that could happen if you did. Then decide for yourself what activities you will pursue. Your life. Your choices.

About lightheadedness. Could have lots of causes, but one thing you can do is insist on getting your pacemaker setttings adjusted until they are not just good enough, but truly optimal for you. An adequate Response Rate is especially crucial. You're in the habit of putting greater demands on your body than the average 67 year old, and average settings aren't going to work for you.

I hear you saying you feel like you've lost the alpha male you consider yourself to be. Who you are on the inside. When my resting heart rate was raised and RR made very, very sensitve (very untypical settings for my age) I finally felt like "myself" for the first time.

About acceptance. Do remember that the Serenity goes, "God, grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference." Work on acceptance only after you're sure you have changed everything that's in your power to change.

 

no limits

by dwelch - 2021-08-25 23:40:44

You should be able to keep doing these things, a pacer fixes heart block easily, should not have any issues now.   So maybe it is settings, maybe wear a monitor for a day or two and note when you have these light headed events.

When you say flying as in a pilot.  Note there are many commercial large jet pilots with pacemakers.   As with everything with the FAA, there are the ancient rules and there are an endless amont of waivers to the rules that can be obtained.   

Unlike AgentX86, and despite CHB from birth (CCHB), I have an underlying rythm if the device is turned off.   I made a great lab rat for a nurse in training as the tech captured my ekg with the device disabled.  CHB is trivial to detect, seconds worth of an ekg will show it.

Lab rat

by Persephone - 2021-08-28 11:19:19

Ouch about being the lab rat, DW - I hope the tech warned you that the device disable was coming so you were at least seated in a chair if not fully horizontal.  When I went through a similar experience, I wasn't informed in advance that the disable was part of the deal and when "there it was" I felt like I could have easily toppled over headfirst from the exam bench I was sitting on.  No way the tech could have jumped up from his chair to help me in time if that had happened, and the clinic nurse was across the room.  Not that I don't have trust in these folks, but this particular exercise didn't seem to be well thought out.

Pacer Family

by Stache - 2021-09-06 23:07:27

Thanks for all the feedback lots of good comments and tips.  I am a retired FAA inspector with my heart condition being 100% paced my medical certificate is gone already discussed it with the flight doc.  My scuba diving is a physics issue with pressure difference while diving and the pressure it will put on my lungs and heart.  The risk is just too high.  My windsurfing puts a lot of pressure on my collar bone I shattered riding my bicycle.  My PM is just below it, doctors are afraid my bone will break and sever my leads.  Can't live without the leads working.  However, I do enjoy my bicycle rides here in Northern CA out into the Delta and vineyards.  Doc says ride as much as I can stand and that is what I have been doing.  I am coming up on a PM adjustment that should help with my lighthead when standing up.  This all seems to be about attitude and I am making an adjustment with it.  Thank you all for your input, its great to have a circle of PM friends that knows what I am going through.

To Brighter Days

by MinimeJer05 - 2021-09-14 00:00:38

@Stache

Thank you for sharing your story and for being vulnerable and opening up. I'm only 29 and a week from having my PM installed and all I can think about is "I'm young and otherwise healthy, why is this happening to me?". I feel like a failure of a husband, having to put my wife through all of these medical issues and having to explain to my friends and family that I can't stop by to visit because I'm currently dealing with vision spells that make it unsafe for me to drive (my brand new truck that I worked my butt off to save up and buy). All I can think about is the things I CANT do and how so many of my friends my age are worried about where they're going for Happy Hour this Friday while I'm worried about what kind of heart complication I will have. 
 

I guess what I'm trying to do is focus on perspective. We are all moving through life at our own wild pace and these heart issues are no doubt going to hinder our abilities to do something at some point in time, but at least we're here to complain about it, to celebrate the small victories and to be thankful for the lives we still have. 
 

im trying my hardest every day to be thankful for the life I still have and to think of all that I can still do because of my PM and I'm remaining hopeful that things will get better for me and for everyone else out there. 
 

keep riding that bike. Keep living that life. Keeping doing the things you CAN and for everything you CANT do, find something even better to take its place. 
 

good luck and good graces 

 

Jer

You know you're wired when...

You have rhythm.

Member Quotes

Sometimes a device must be tuned a few times before it is right. My cardiologist said it is like fine tuning a car.