CONGENITAL COMPLETE HEART BLOCK FOUND AT 23

Well this is going to be a long story. My name is Thomas Watkins, I am a 23 year old male from Cambridge UK. About 6 weeks back I experience an episode of hyperventilation syndrome (A panic attack) at university and my house mates called an amublance.

Upon their arrival they calmed me down and hooked me up to an ECG and discovered a complete (third degree) heart block. I was taken to hospital and thats where I stayed for 8 days while they conducted several tests including multiple ECGs, a cardiac MRI, an Echodiagram, a 24 Hour heart monitor and a stress test as well as multiple blood tests. The results showed that my heart block is congenital and I am asymptomatic.

My resting heart rate is around 40 bpm and I imagine when im really relaxed/sleeping it's even lower then that! I seem to have no trouble getting my heart rate up as i used to play football and do a bit of running. Despite this cardiolists do not want to put a pacemaker in yet as they say its not needed. I have another consultation with the specialist pacemaker consultant in a few weeks time and to be honest I want the pacemaker. Almost everything I've read states I will almost certainly need one at some point and it feels dangerous to just sit around and wait for my symptoms to get worse or for my heart rate to drop to a dangerous low and start fainting! 

Do you think I'll have any say in whether they will put one in? Can i request one despite it not being "essential" as of now? Has anyone else had a similar experience or any advice/reassurance please! 

Tom


14 Comments

Request a pacemaker?

by AgentX86 - 2019-11-18 10:17:06

This is certainly an insurance/NHS issue but I've never heard of a pacemaker being optional for a third degree heart block. I don't see how your heart is modulating its rate either,  since the atria and ventricles aren't communicating. Got me on this one but it sounds like you have some government bureaucratic windmills to tilt.

inevitable

by Tommy1996 - 2019-11-18 10:40:38

If its ineviatable I dont see why they wouldn't have just put it in there and then! It was a specialist cardiac hospital in blackpool - supposedly one of the best in the country! And they did said my case was particularly strange as I could excercise flawlessly and get my heart rate up to 130bpm+ on the stress test! I have read of cases where people go until later 50s/60s with congenital complete heart block and still don't have the pacemaker. 

 

Hopefully if i raise my concerns avidly they will conduct the procedure...

JUSTIFICATION FOR A PACEMAKER

by Gemita - 2019-11-18 10:47:30

Hello Tom,

I am also in the UK, a good deal older than you, but yes I had to initially fight to get my pacemaker.  It was down to "symptoms" and evidence of fainting episodes which finally made them act.  I guess because of your age and the fact that you are "aysymptomatic" is against you and then there is the cost to the NHS of a pacemaker which may not be immediately needed.  They reason that you are doing well enough at the moment and putting in a pacemaker at your young age will mean many battery changes in your lifetime and other potential complications.  Nothing is absolutely risk free.

As an insurance policy, if I were in your shoes I would take as much info as you can to your appointment with your specialist.  Maybe mention some symptoms which are troubling you ??

Even with my syncope episodes, I had to prove I was getting these by having long term monitoring (implanted Reveal Linq).  I would urge you to try to get long term monitoring if you can (or try Kardia home monitor) to see what your heart is doing and take the evidence to your doctors.  They usually have to justify the need for a pacemaker, although I am sure your condition will help you.

As far as your hyperventilation syndrome is concerned, I would definitely seek help for this because it can cause health problems.  My hubby has just had respiratory physiotherapy for this.  Good luck

Private medical treatment?

by Tommy1996 - 2019-11-18 11:02:47

Thanks for your reply Gemita, do you also have a heart block? I thought because of the seriousness heart block in the third degree and a heart rate of around 40bpm they would not hesitate despite the lack of noticeable symptoms. I have read that a pacemaker implantation privately is around £5000 which would be a massive shame to have to spend but to be honest its better then waiting to faint in a dangerous situation! So i may have to go that route if they dont play ball. Thanks again!

PRIVATE MEDICAL TREATMENT

by Gemita - 2019-11-18 11:25:37

Hi Tom,

I believe if you make a strong case for "prevention" you will win the argument.  If you persist and prove that you are having symptoms even better ??  or have real concerns for the future and these concerns can only be addressed by the protection of a pacemaker, then I believe you will succeed.  I would not go down the private route until you have exhausted all other avenues.  I also feel because your doctors are not concerned, that the risk of imminent danger is low, so why race to the private sector.  Take your time and find a good Electrophysiologist with whom you can work and this will be your best path.

I have bundle branch block problems (both right and left), lots of different arrhythmias at both exceedingly fast and slow heart rates.  I also have intermittent swallow syncope and autonomic problems.  My pacemaker really helps Tom.

Actually Tom 40 bpm may seem low, but for many athletes it could be fairly normal.  As i mentioned in my previous post, doctors need to see that a patient is "symptomatic" primarily.  My resting heart rate has been below 30 bpm and they werent in the slightest worried !!  It makes me wonder too sometimes.  But that is why a monitor is the way to go and I feel sure your specialist will suggest long term monitoring to see how your heart is working on a day to day basis

when to pace

by Tracey_E - 2019-11-18 11:50:06

If you are getting your rate up on exertion, you are not in heart block all the time. The definition of 3rd degree means the ventricles always beat on their own because they never get the signal from the atria. You can have periods of 3rd degree block but other times you beat normally, that's 2nd degree and it doesn't always need paced. 

Try to get a clear answer from them if they don't want to pace you now because of your age or because of your lack of symptoms. The second is ok, the first is not. My rate was 44, always, no matter what I did. I had symptoms- constant dizziness, inability to be active- yet they waited until my rate dropped more because they didn't want to pace someone so young. That's a big giant pet peeve of mine! If a 60 or 70 or 80 year old with the same symptoms/diagnosis would be paced, then why on earth let the 20 year old suffer when there is a fix?? 

Yes, odds are some day you will need paced. Yes, if I were you I would be digging deeper and looking for answers. However, if you were my child and your rate went up on exertion and you did not have symptoms, I would be ok with careful monitoring and holding off on the pacer for now. Have you had a Holter monitor for longer than 24 hours? That's what I'd ask  for next, get one that goes for a week or even two weeks. That will see what your heart is doing round the clock- how low you get when you sleep, how high you get up on exertion during the day. If your rate dips lower at night, that's a reason to pace sooner. This isn't an emergency that you need to rush into. It's safe to take your time, do your homework, have some more tests.

Here's an explanation of the different types of block. I'm no doctor, but if your rate is going up on exertion enough to pass a stress test, I don't see how you can be 3rd degree. 

https://my.clevelandclinic.org/health/diseases/17056-heart-block

Thanks everyone!

by Tommy1996 - 2019-11-18 12:45:24

Thanks everyone your comments are really reassuring! I'm not sure how I was able to pass the stress test but it states that I am in complete heart block throughout? No idea! But yes you're right if they aren't worried I suppose I shouldn't be either however I think I will push for the pacer in terms of prevention. Thanks again everyone! 

Just been paced at 43

by Lesleybird22 - 2019-11-18 17:05:13

Hi Tom

I had bradycardia and sinus node dysfunction, I was fitted with a dual lead pacemaker last week. Im 43 and was a keen runner. I had five months of tests and feeling awful. I had to push for treatment, as there was reluctance given my age. I was not living the life I have done and hope to get back to my former activities soon. Already I feel better,  though it's painful and I had a GA.  

You do have to understand the reluctance of the medics but there's peace of mind too. 

Good luck.

Lesley

No, I certainly don't...

by AgentX86 - 2019-11-19 09:06:43

...understand the reluctance of medics. Age has nothing to do with needing a pacemaker. If you need a pacemaker, you need it, period. Unless you're not healthy enough for what is really a fairly minor surgery (if all goes right) you should get it. Life, or at least quality of life is at stake. Age has no bearing on the matter.

In this case they're lying to him. A third degree block cannot have chronotropic competence and always requires a pacemaker to correct, and perhaps even survive. Depending on the type of second degree block, a pacemaker may or may not be required.

CCHB

by dwelch - 2019-11-19 09:52:40

Like yourself, Tracey_E, and others here I also have complete congenital heart block.  They found it pre teen and a handful/several years later I got device number 1.  I am on number five.  1) I was very very very active, and probably should have had one.  2) this was 32 years ago and all of the tech was not what it is today, they didnt even know what caused CCHB then.  I was still a child and was relying on adults, and lying to them about my activities because they had already taken soccer (football) away from me and I wasnt going to lose anything else.  I can no longer find the stats about CCHB that showed life expectancy to 18 years old was pretty dismal.  You, me, Tracey_E and others beat those odds.  Now that stats show everyone survives because they get pacers, done.  My resting heart rate was 44 and the only time I was hooked up was morning before surgery (I spent the night there, not something they do anymore I suspect) before I woke up and was around 37.  Low heart rate is not the only reason to do this, that is not the problem.

Complete heart block is easy to see on the EKG.  The doc should have showed this to you already.   While the tools then were primitive compared today my visits would inclue an EKG and a primitive sonagram/echo where he would (no techs/nurses he did everything) take pictures of the heart wall and measure.  Whatever your religion or belief system we survived at all, the lower chambers are running on their own as you can see in the EKG.  the A parts and V parts are out of sync.  So the heart is not working very efficiently it is fighting itself.  The heart muscle grows thicker which is I suspect the primary problem, the heart itself can/does grow larger in general.  I was able to see every heart beat between my ribs (was skinny then) and could feel and hear every heart beat (the pacer removed all that and I had an emptiness that took a while to overcome, but was worth it to be normal).   Combination of you are going off to college your activities will slow down, heart size, etc doc said it was time so we did it.  Now I had been resistant up to that point but I dont think they were listneing to me, when they said it was time I did it.

Now fast forward to today.  They should be 1) willing to take the time 2) able to sit down and show you the data they have and why they are choosing to delay.  If it is simlpy for insurance reasons you might not win against the insurance company.  At the same time here in the states there are ways to get around it.  You cant have this treatment, okay I will write a letter or my doc will write a letter saying I need it.  Okay, we see, did you try this did it help?  Yes we did it doesnt help we need this treatment.  Okay you can have it.  Gotta work that out with your doc.   If your doc is not willing to sit down with you, find another, be your own advocate, do not be afraid to "fire" your doc, well in the states we are free to change at will, not sure how it works there.

Find a doc you trust, trust the doc you found.   think about those words there really isnt anything more you can do if you trust this doc then go where they take you with pacer or without for now.  You are going to have anxiety either path, nothing you can do about that.  And there is no right path, not possible to go back in time and try both ways and pick the best.

You will always be the youngest patient in the doctors office/practice, and yes that makes it hard for the doc more than you, understand that.  You will have a lifetime of pacers unless there is some miracle cure down the road, but the time it takes to get those cures to the public it may be our children's generation that benefits.  No CCHB is not hereditary in that way.  Even though religion/science has can/will keep you alive without the pacer (at rest at least) with the pacer you will be 100% paced.  You are burning through your battery faster than others, but you have a bigger battery, larger device than others and still get that 10 plus or minus a few years life per device.  Nothing to fear from the 100% paced number.  I have leads older than you, most of them.  They were not removable when I started this but there are specialists that are making it as commonplace as possible for such a thing.  No worries about a lifetime of leads.

Obviously not easy/possible but it doesnt help your heart to get anxious about this, and you will have a transisition, but complete heart block is easy for pacers to fix.  And if they can show and firmly believe this is what you have CCHB, then you need a pacer, just do it.  Take those steps into the rest of your life.  They may resist for years, and you can understand the insurance companies reluctance, but they are going to be paying for devices, and they know that.  Find a doc or practice that knows how to work the system, perhaps you can find a nice person at the insurance company, the ones you can actually talk to are not the enemy, its the ones above them.  And maybe they can tell you want form or what language on a letter from a doc or other that needs to be sent.  We have to be our own advocates against this system, it is sad that you have to do this so early in adulthood when you are fighting just to be a new adult.  But if the doc you trust, says that it is okay to wait and here is why, then trust the doc you found.  I would at least ask for 6 month checkups not annual, or perhaps see what he/she offers then half it, no pacer then I want to see you twice that rate.  Put me on a holter every nth visit.

find a doc you trust, trust the doc you find.

keep coming back and let us know how it goes.  this site will be a part of your life I hope, you will be a old pro before long with lots of experience.

 

 

Thank you so much for that response.

by Tommy1996 - 2019-11-19 10:27:14

Hi dwelch thanks so much for that response your story is very reasuring thanks for sharing it! I am really not sure as to why they're holding off, all my letters from the cardiology dept i was staying in say CCHB throughout, however normal chronotopic response to exercise. They say my MRI and Echodiagram came back good and I have a very healthy heart! I really don't understand enough about the condition and I have so many questions for them - my next consultation is on the 13th of december. I have purchased a kardia monitor and im going to keep some evidence of my low heart rates and combine this with symptoms of dizziness and lightheadedness. I think if I ask the cardiologist to think in terms of my immediate quality of life, and prevention from further symptoms/abnormalities arising they will have to take my point forward.

This to me sounds like they are holding back as they think it's dangerous to conduct serveral procedures during the duration of my life and is not worth it as it isnt immediately necessary. However this seems irresponsible as the danger of not having the pacemaker is far greater. It just seems they are so much more likely to perform this in the states because of the payment aspect of private healthcare however in the UK, they seem relecutant. 

I am going to push for the pacemaker in my next consultation and bring the evidence with me that will hopefully sway the cardiologist to see from my perspective. If not i'll get a refferal and go privately to get one implanted, no doctor in their right mind wouldn't refer a young adult with CCHB for a pacemaker implantation if they're willing to pay for it im sure.

Anyway thanks for all your feedback, it's reduced my fear of being in any immediate danger however i definitely have lots of questions that need answering, I'll be sure to update you all once I have the answers.

Cheers all!

Don't be in a rush to demand a PM

by crustyg - 2019-11-19 14:18:49

Having a low resting heart rate is not necessarily a bad thing, although feeling faint after a single flight of stairs isn't great.  As Tracey_E has pointed out, you *cannot* have congenital heart block if you can get your HR up >100-140 on a stress test.  CHB is total and you're extremely unlikely to manage a junctional rhythm that high.

From what you've described, you may have Sick Sinus Syndrome with chronotropic incompetence, and you may be dropping into an atrial tachyarrhythmia during the stress test.  Make sure that you've been properly checked for Lyme disease - it can present as variable A=>V conduction problems, and is easily treatable with antibiotics and *all* other treatments are contra-indicated if you have Lyme myocarditis.

Wait until you can have some calm time discussing the *evidence* with a specialist EP cardiologist.  Then talk about exactly which manufacturer/model would suit you best - it's the EP doc who decides, but you have to live with the implications of that decision.

The NHS has no concerns about the costs of purchasing and implanting a PM - it's actually not that expensive, but privately it would cost more like £11k without the EP doc's fee (not very much).

Don't rush into this - you will have a lifetime to regret the PM you didn't need.

Definitely not Lyme disease

by Tommy1996 - 2019-11-19 15:09:24

Hi thanks for your comment!

It's definitely not caused by Lyme disease as i've had all the relevant blood tests/examinations and no sign of a rash of fever at all! And if it was any of those other conditions im sure the MRI/Echodiagram would have picked it up and atleast one of the specialists would have suggested that? Additionally in the notes for these tests it states no abnormalities to present. My discharge letter and future plan letter both say Complete heart block throughout (Congenital) - even on the 24 hour tape. Considering this is from the cardiac department in Lancashire which specialise in congenital conditions I trust their diagnoses. But yes i agree I need some time discussing the evidence with the specialist consultant in 3 weeks time, I will be fighting my corner and asking all relevant questions as to why a pacemaker wouldn't improve my quality of life immediately. 

Reply

by Elevator tech - 2019-11-25 00:50:19

 I have  the same problem third-degree heart block  don’t know why it happened.  Mine happened really quick like within a couple days I’m still a little confused I was at work I couldn’t even climb up a ladder without feeling like I was going to pass out I couldn’t breathe. the first day I almost blacked out   Five minutes later I felt perfectly fine  The next day I was  dizzy and short of breath went to the doctor  they told me I needed to Pace Maker Two days later had a pacemaker  installed  it’s been a month and a half now  I wake up every morning wondering how the hell did this happened  

You know you're wired when...

You play MP3 files on your pacer.

Member Quotes

A properly implanted and adjusted pacemaker will not even be noticeable after you get over the surgery.