Anxiety

CHB

by AgentX86 - 2020-08-10 22:47:41

I have no clue about what "type" of congenital heard block even means but you might want to read this. <https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3232542/>

"Congenital" just means you were born with it and "complete" means that the signal is lost between the atria and ventricles 100% of the time.  So, these aren't exclusive terms.  Evidently you have a congenital complete heart block.

Ask about talking therapy for your anxiety - Cognitive Behavioural Therapy or Mindfulness

by Gemita - 2020-08-11 05:43:33

Hello Qaisarhuzaif,

Firstly, please do not let one doctor’s statement about your potential lifespan cause undue worry.  Put simply, no one can ever know how long each one of us will live.  And certainly from your post, your doctor in any event was not an expert in congenital heart block and you should be directing this question to someone with expertise, who can "confirm" your diagnosis and who I feel sure will be able to put your mind at ease fairly quickly too.

Your general doctor though should be able to refer you for treatment for your anxiety which should, in my opinion, include “talking therapy” to allow you to discuss with a therapist your main concerns for the future, whether you will be able to live a long and productive life, have a wonderful family and watch them grow up.  From where I am sitting and from what I have read on this site, there is no reason why you shouldn’t be able to look forward to all of these things with your pacemaker.  I send my best wishes that you will soon be free from anxiety and able to move on with a spring in your step and hope in your heart.  

living with heart block

by Tracey_E - 2020-08-11 11:15:36

Some people acquire heart block later in life, it's all complete heart block, or third degree block, or av block. Lots of names for the same thing. Adding congenital just means we were born this way. I was born with it also. I have never ONCE had a doctor tell me this will shorten my life. Take what the doctor yesterday told you with a grain of salt. We are rare in a cardiology practice, most practices don't see more than a few of us in a career. When you get to a general practitioner, most of them have never seen a CCHB patient and are scarily undereducated and a lot of what they say is conjecture at best, ill informed at worst.

I found an adult congenital electrophysiologist a few years ago. That means half of his practice is congenital kids, half is congenital adults. He is the first doctor I've ever seen who has a lot of experience with patients just like me. He also said emphatically this will not shorten my life. He put my mind at ease more than any other doctor ever has because he isn't just guessing, he's seen it first hand and patients like us are his specialty. 

I am 53, so old enough to be your mom, and I am healthy and active. Having the pacer and CCHB does not affect my day to day life. I have two kids about your age. My oldest is getting married and I fully intend to be around to see my grandchildren and to keep running races with her, and to continue hiking and skiing trips with my other daughter. We have a problem that has a fix and we are well monitored to make sure we stay healthy.

I know that it's easy to overthink it and to start thinking "what if" and let fear rule. There are no facts to support it, there is no reason to think this will affect how long we live. That said,. anxiety is real and not always rational so if that fear is starting to rule your life, it's good to find someone to talk to about it. Stress will kill us faster than heart block. It's ok to ask for help if it's too much to handle on your own. 

Do you exercise regularly? I'm going to put on my mom hat for a minute and talk to you like one of my kids. Exercise is crucial. First, it keeps the heart strong which helps anyone live longer, heart condition or not. Second, endorphins make us feel good and bring up our mood. To me, a good workout is the best way to work out stress and get rid of anxiety. And hidden bonus for us... when we work out, we can feel that our hearts are working hard, we know that our pacer is doing its job, and for me that's when it's most clear to me that my heart condition is fixed and I am OK. I keep up with the rest of the class, no one around me has a clue my heart doesn't work the way it's supposed to. I am normal. You are normal too. If you want to get married and have kids some day, get married and have kids and enjoy them. I did. Life doesn't come with guarantees but our odds are no worse than anyone else's. 

Congenital and completed heart block terminology.

by Selwyn - 2020-08-11 11:41:00

Congential means you are born with it.

If the 'it' is heart block, then the simplest way to look at things is, this is either partial ( ie. some electrical  impulses, from your self generation, get from the upper chambers to the lower chambers of your heart and cause it to beat), or complete, where no impulses get to the lower chambers- the heart muscle will then contact at a rate of 25-30 per minute without any impulses, with no variation with exercise,  and sometimes stops ( Oh dear!).  Hence the need for a battery powered pacemaker. 

So, congenital heart block may be complete, or partial.

If you use the search facility in the upper right of this site there are loads of folk with many years of experience of your congential heart block - loads of years should equate to reassurance.I am not aware of a PM reducing life expectancy, rather the reverse. 

no worries

by dwelch - 2020-08-11 15:50:08

Go back and re-read Tracey_Es comment........Go read it again.....and one more time.

We learned in school and if not then there is the internet.  You have your upper chambers and lower chambers, they work together as a team the ventricles do the big pump that pushes the blood through all the nooks and crannies in the body.   If you look at a normal EKG (use the internet) there are a couple of pulses that stand out one is the atria the other the ventricles the bigger one.  Every beat they are synchronized, the same pattern, one then the other, one then the other, forever.  With COMPLETE heart block that is not the case, the signal that drives the atria does not make it to the ventricles to tell them to fire, so be it god or evolution or whatever your belief system is, we happen to stay alive, they beat to their own rythm.  This is extremely easy to see in an EKG if you find one online when looking for complete heart block EKG (ECG whatever).  The ventricle pulses are not in sync with the atrial pulses.  Next time you go to see your cardiologist/electrophysiologist (EP) they will do a test and will have an ekg of you without the pacer doing its thing and they can easily show you what is going on.  It only takes a few beats to see heart block, not something that happens now and again (not for COMPLETE, level2 is not all the time level 3 = complete = electrically blocked all the time).

This is one of the best heart conditions to have if you have to have a heart condition, because it is really easy to fix with a pacemaker.

You, me, Tracey_E are all in the same subset of this club along with others, we all three have CCHB congenital, complete heart block (congenital simply means from birth you were born with this, a number of folks get level 3 block much later in life as a result of a heart attack and Tracey_E can educate you on other ways one might  end up with it).

You are 15 years in.  You are the same age as my daughter, the pacemaker allows me to live a normal life, raise a child, maybe have a grandchild depending on how my daughter chooses to live her life.  I got my first one at 19, I am on number 5 and am 33 years into this journey (with pacers 19+33 years old).  I have leads older than you.  The pacemaker WILL give you a full, long, normal life as far as your condition goes, what you do with that life is up to you.  It has already gotten you this far, before pacemakers CCHB meant we often didnt make it past our teens on average, I was diagnosed pre-teen and watched through my teens, I lied to the doctor and participated in serious levels of activity, it should have killed me, I was lucky.  I should have had a pacemaker sooner, but I was part of the problem, not the doctors fault (my folks could perhaps take some of the blame, but I lied to them too)  My heart got too big because it has to work so much harder because it is fighting itself as well as doing its normal job, if the heart gets too big, the muscle gets too thick then it gets pretty dangerous.  If I had been born today, they would have known about this before birth, I may or may not have been like you and had a pacemaker very early in life.  Instead it wasnt until I was 12 or so that I was first hooked up to an ekg.  Today I cant see how they would wait as long as my doctor did.

The pacemaker didnt inhibit my activities at all, I continued to skate (vert), bmx, snowboard, etc  Until life and perhaps laziness took over and I gave up those sports.  The pacer does not interfere with my life at all.  Damn glad to have it.  I wouldnt be writing this comment if I didnt have it.

I think I had read that Tracey_E found an office with a number of heart block patients, good for her.  I am like the other situation she mentioned and you are likely there too, you may be the youngest patient your doctor has, for much of your life, even now for me.   You will have many pacemakers.  Dont misunderstand the math above 33/5 = 6.6 years, but that is not the whole story, number 4 we took out early and number 5 is only I think 3 years old.  so (33 - 7) / 3 = 8.6 years average, the first one was 7 years, shorter than expected, number two perhaps as well, three had a pretty good run.  

You are already just entering a phase in your pacer life, that at 15-25 years or later the heart does not like long term pacing from one side.  So like me and like another person who like you started as a child but has more years than Tracey_E or myself at this, is now being watched for their EF (ejection fraction) with annual echocardiograms.  If you have a new doc that doesnt know whats up then 1) find a better one 2) you need a doc that knows about this and is looking at your EF.   I was 30 years with pacers before my EF got into the 30s, low enough to have the talk about a three lead, biventrical, and that is why number four was removed after about 4 years.  Not everyone here will have 3,4,5,6,7...and run into this problem, I hope/suspect you will not need a third lead for a while, and as tech progresses there are better placements for the V lead than where I had mine.  Further reducing the need for this.  But if in the next handful of years your doc doesnt start ordering an echo, tell him some old timer on the internet said he needs to explain to you why not.

Now if you stick with this young doc, then you may not retire him/her for a while.  I have retired docs, and am worried I might retire my current doc before long, will see, we dont talk about her personal life in my visits, despite our kids growning up in the same schools, being on the same sports teams, etc.

Another good thing is that CCHB is not something you pass on to your child, it is something going on in your mom during her pregancy with you, it is something your brothers and sisters might also have, but not something, unless the docs have changed their story, that you pass on.  It was a long time after I was diagnosed that they even knew what caused it.  Wasnt until I was getting serious about having a child that I asked and was educated as they had happened to have figured it out by then.  Then another 10 or so years later was at an orthopeadic surgeons office, he had a student doc who was excited to see me because he remembered the question on the test about cchb, which means they teach it now, which is basically how they found it in you. (as far as his real job, he was green and clueless the actual doc kept having to correct him to the point he said "good thing I have you for another year")

Welcome to the club.  You started this much earlier in life than almost everyone here, by the time you get to my age you will be way smarter than I am on the topic, maybe they will have found a cure, a pill or surgery or nano bots, or some other pacer like device that isnt as bulky and intrusive.  And you can talk about the good old days with wires and a thing in your chest or abdomen I assume for your childhood pacer(s).  

It is still technically possible for you to go into medicine, you could be a true unicorn, a lifetime pacemaker user that takes care of other people with pacemakers.

I think most of us here are concerned with your doc experience.  I have had a couple that simply dont seem to care, I have moved many times plus insurance crap, so have had a handful or so different docs, and in general (in my experience) cardiologists/EP's have some of the best bedside manner of all the types of docs I have seen.  You owe this doc nothing, they need to care about you FOR THE REST OF THEIR CAREER as that is how long you might be with them, this is a long term relationship you are going to have with this person/team, shop around, visit a new one every 6-12 months if you have to.  They need to understand and behave as such, it is not just that you are the youngest patient in their office, if you stick with them stay in that town, etc you will be their most familiar patient, your condition will be teaching them things they may only need to know for just you and they need to realize that from day one and act accordingly.  Not as a lab rat which I had a doc try to do to me.  Now saying that the next time you visit this doc, if you choose to return, if he/she has been doing their homework then maybe you have found a home they were not ready the last visit but are now.  You can toss a question out like this "should I be getting echos every year"?  With no other explanation and see what they say, see if it agrees with the folks on this forum, almost none if any of us our docs, but the combined knowlege here outshines any particular doctor, even the best.

Find one you trust, find one that speaks exactly at your level (not talking smart or dumb we all have ways that we communicate and understand and ways that we dont) will take the time to answer questions.   

Find a doc you trust, then trust the doc you found.

Please stick around this site, you already posess knowledge that only, literally, a few people here have. Damn glad you stopped by.

where I found my ep

by Tracey_E - 2020-08-11 20:05:45

The Adult Congenital Heart Association provides a list of clinics with adult congenital practices. I chose the one with more than 1000 patients what was closest to me. Turned out to be 90 minutes away but they have a satellite office 15 min away. The satellite office is mostly peds but my ep is there once a month so I've only made the long drive once in three years. I initially went for a consult. I adore my previous cardiologist, had been going to him for 20 years (and been the youngest for most of that time) and I had no plans to change my care, but I was blown away at how different their approach is so I made the change. If you feel like digging up my past posts, I made a long post after that first appointment with all the differences. 

https://www.achaheart.org/your-heart/clinic-directory/clinic-listings/

Anxiety

by annieg - 2020-08-13 15:53:02

Greetings. I too got my first pacer at age 5 and am 42 and going strong. I had two pacer implants at age 5 after come complications, then a new one at age 14, another new one at 15 (staff infection), and three more since then (I think, I can't keep track!). I have three kids - and my pregnancies and deliveries were normal. I had a cardio team in with my first delivery just in case - ended up doing a CSection for my first son for other reasons - but really no problems at all with all three kiddos. While I am also concerned about lifespan - I wanted to put your mind at ease that my pacer didn't complicate my pregnancies at all.