Scared as **** and I don’t believe

EDIT by a Moderator:  There's a time & place for "Soldier talk," and this isn't it.  I've gone through & cleaned it up a bit.  This is an importrant subject & needs to be addressed.  All of you guys know better, so keep it clean!

Donr - Retired Soldier for 32 years after 28 plus years activ e duty. 

Original text starts here.

Hi everybody...

what am I doing here?

i am 31 years old and I have spent most of my life in the army. My duty as a soldier included diving, climbing and jumping from 24k feet with oxygen. I have lived a pretty active life so far. Always been healthy, never on medications nor had any sort of problems. Baseline bradycardic due to working out daily. I have run ultra trails in the alps, competed in weightlifting,  CrossFit.. name it.

i took a year off it to pursue other goals.

In the last couple of days I have been feeling a little funny and extra tired. My pulse lower than usual and struggling to get up.

this morning I decided to go to the ER and now I am sitting in the ICU in the low thirties and they are talking about putting a pacemaker in me.

no more army, no more skydiving, no more being an athlete.

i still don't believe this is real and I honestly have a feeling they are just too rushed in treating a symptom rather addressing the actual cause. I don't accept that the end of my life as I have known is explained with "these thing just happen". **********.
I'm gonna sign a refusal of care and walk around with my low heartbeat until somebody can tell me what's going on.

 

am in pure denial or there is a reasonable base for what I m saying? 

Any advice? 


13 Comments

Bad luck

by AgentX86 - 2019-10-11 01:18:28

That is the way these things go. It's less common in younger folks but it does happen. However, unless they're telling you that you're having significant pauses or asystoles and you're not having problems with syncope (losing consciousness), this deserves a long second opinion from a top notch electrophysiologist (EP).

Don't trust anything an ER doctor tells you unless it's a real emergency (your life is in immediate danger). Even ER cardiologists tend to be less than competent cardiologists. Find the best EP.

Don't ********die yeah?

by SoCal-Tim - 2019-10-11 01:22:23

Hey man, I'll preface this with "I'm sure as **** no Doctor". If you've only had symptoms for a couple of days that seems like quite a jump to suddenly be in the low 30s. Have you been exposed to any substances out of the ordinary lately? Personally I would definitely push to get another opinion.

30bpm is sketch though, it slows even more when you sleep.

If it's any consolation, I'm 32 and also incredibly active and fit (sky dive, crossfit, scuba, offroading, etc) and have a fat ass (extra big battery) pacemaker. Once it heals, it's really not as bad as it sounds. The smaller units even less so.

I've heard about other people in the military going with alternative pacer placement (something about under a muscle near the arm pit or something). Might be worth asking about/investigating if nothing else.

I wish you the best

 

Acceptance

by ar_vin - 2019-10-11 01:30:10

What you're describing is exactly what I went through back in May 2017 though I am considerably older than you are.

I've been active all my life and used to hiking, climbing, running trails etc.

One day I felt weirdly breathless during a hike and after going home felt dizzy trying to stand up from sitting down on the couch. I ended up in the ER like you did and was immediately admitted to the hospital for "observation" overnight.

Saw an electrophysiologist (EP) who immediately wanted to implant a pacemaker (PM).

It was all pretty overwhelming to say the least! 

I sought a second opinion from another excellent EP at a different hospital. He agreed with the diagnosis of sinus bradycardia (low HR) but in his opinion I wasn't yet a candidate for a PM. He suggested waiting a few months to see how things progressed.

An year later (during which my symptoms got progressively worse), I had a folow up with the second EP and he suggested I get a PM within a couple of weeks.

I'd had some time to wrap my brain around what I was dealing with and read everything I could find about cardiac arrythmia.

I got the PM in September 2018 and it has given me my life back!

Take your time and process what you're feeling and learn what you can about your condition and about potential solutions. Know that if you have bradycardia you ARE going to need a PM sooner than later.

Also, cardiac rhythm disorders tend to be progressive.

Things to do:

- find an EP that you can communicate with and trust. Travel to a nearby larger city if you must!

- since you're so active, research the best PM for your lifestyle. Biotronik, Boston Scientific and Medtronic are the three leading brands. From what I've learned since my implant Biiotronik is probably the best suited for those seeking to continue a variety of athletic pursuits

- this is NOT the end of your running, climbing or any physical activities. PMs today will support your activity. You'll need to work closely with your EP to pick the right PM and to have it adjusted post implant. This might take several appointments over several months.

Get a copy of the book by John Mandrola "The Haywire Heart" and read it. It's not about bradycardia but deals with rhythm disorders in athletes (bikers mostly). It's well written and you'll learn a lot about the electrical system of your heart.

- no one will try and figure out what caused your issue - that's not how medicine works. As an engineer used to diagnosing and fixing issues in complex software/hardware systems this was a shock to me. But the human body is a far more complex system than anything human designed. Physicians seek to provide a "fix" not necessarily to understand what caused your rhythm disorder. That said, please ensure that you're worked up thoroughly before you accept an implant. I'd even insist on a cardiac MRI to rule out some rather rare disorders that could be causing your issues.

Ask questions, learn and most importantly accept your condition and put your best foot forward.

You are young and have a long full life ahead you; you might need to make a few adjustments but you'd be surprised how few.

This forum is full of people who have had PMs for several years and continue to live very active, productive lives.

There's no reason to despair!

Please ask as many questions as you like.

Welcome to the club!

BTW, please complete your profile so we may help you better! Location (city), age, diagnosis etc.

You provided most of it here but it helps to have it in your profile.

 

Sub pectoral placement

by ar_vin - 2019-10-11 01:33:21

Given your active lifestyle, ask for the PM to be placed under your left pectoral muscle.

The recovery might be a bit more painful and longer (2-3 days) but it's well worth it.

My PM was paced sub-pectorally at my request and I'm glad I got it that way.

 

You're in denial *and* you probably have an underlying condition

by crustyg - 2019-10-11 06:23:03

It's both, IMHO.  There's a huge body of experience that shows that *some* people who take part in sustained athletic activities can damage their hearts and this often starts with a failing SA node - the natural 'pacemaker' that drives your heart beats.  It's not the *only* part of your heart that can do this, so a failing SA node is a nuisance, not death.  It's commonly called Sick Sinus Syndrome (SSS) and a very low heart rate is the obvious manifestation.  I was at about 35-38bpm last time I was checked and spent years boasting to my running mates how my resting HR was low 50s, then high 40s, then low 40s.  Now I need a PM to drive my HR up to what I want for running, cycling, swimming.

It's *NOT* the end of your athletic life, although it will be the end of your Service career, I'm sure.

It's unfair that all this great exercise has worn out a key part of you - but that's life.  At least it's fixable.

As long as you don't fall over when you stand up you can probably afford to wait some time.  ICU sounds dramatic, and you should *not* let yourself be pushed into consenting for something that you're not happy about.  Keep politely declining to agree to anything until a) you fully understand *why* it's necessary, b) you are happy that it's the best approach.

We doctors want Informed Consent, not abject surrender!

Choose wisely

by Tem - 2019-10-11 06:24:32

Agree with everything stated. If you go ahead with PM make sure you discuss your requirements beforehand. I had no idea about the different PM's available. They implanted a Biotronik, which has been very good, except it is only rated to 1.5 ATM. As a diver this translated to a max. depth of only 5 metres! Even the Cardiologist + Technicians were unaware of its limitations. They said diving would be ok. I contacted the factory in Berlin who informed me about the pressure limitations. Some PM's are rated to 7+ATM. They told me it could be replaced, but cost + going through all the healing process again puts me off. To date there have been no reported deaths due to PM failure at depth. They do distort at 60m.

Thanks

by Wopper - 2019-10-11 07:52:22

Thank you all for taking the time to answer. It really helps to receive advice from those who have been through it.

it seems that my bradycardia with second degree heart block is stable and honestly I feel fine, or better said not different than I have felt in a long time. I might have walked around with this  for a while attributing the fatigue to the workouts or work routine.

at the moment I am in the ICU of a hospital in rural Canada with no cardiologist so all the specialist consultations have been done through the phone with somebody in the main city, which is where I live. If the don't discharge me today I m going to sign a refusal of care and go back home to see the actual cardiologist because I don't see how sitting in the ICU with the low Hr alarm is gonna help me.

I still struggle to believe how it is possible that on monday night I was in the gym lifting heavy weights and crushing an intense CrossFit workout. 

thanks again for the advice, I m sure I ll keep coming back for more

Thanks

by Wopper - 2019-10-11 07:52:23

Thank you all for taking the time to answer. It really helps to receive advice from those who have been through it.

it seems that my bradycardia with second degree heart block is stable and honestly I feel fine, or better said not different than I have felt in a long time. I might have walked around with this  for a while attributing the fatigue to the workouts or work routine.

at the moment I am in the ICU of a hospital in rural Canada with no cardiologist so all the specialist consultations have been done through the phone with somebody in the main city, which is where I live. If the don't discharge me today I m going to sign a refusal of care and go back home to see the actual cardiologist because I don't see how sitting in the ICU with the low Hr alarm is gonna help me.

I still struggle to believe how it is possible that on monday night I was in the gym lifting heavy weights and crushing an intense CrossFit workout. 

thanks again for the advice, I m sure I ll keep coming back for more

Waiting to see a cardiologist

by AgentX86 - 2019-10-11 08:19:22

You don't want a cardiologist, you need to se an electrophysiologist (you may need both). A cardiologist treats the structural components of the heart. A "plumber". An electrophysiologist treats electrical problems of the heart- an "electrician". It's possible that you have both but we know that you have an electrical problem. Cardiologists aren't trained to deal with these disorders.

I’m determined

by Wopper - 2019-10-12 12:12:27

I know it's not the end of life with a pacemaker and i respect all you guys out there rocking it with the wire on.

my problem right now is that they don't have a *******Commentsng clue of what is going on and if they put one in that's a lifelong stamp. I will be discharged from the military, I will never be able to do what i want to do now (search and rescue paramedic), I won't be able to be a competitive weightlifter as i am.

Right now I m under observation in the ICU with a stable 2:1 block. Waiting on a cardiac mri to figure out if I have sarcoidosis and some other blood works for Lyme disease. 

I keep my fingers crossed and I will be able to come out of the storm without a pacemaker because to be honest with you, I know it's not the end of life, but it will be the end of my life and I don't know if I can deal with it. 

Cardiac sarcoidosis

by laughingarcher - 2019-10-12 19:20:11

I'm glad you're being checked for cardiac sarcoidosis!  I had heart symptoms (mostly bradycardia) for seven years which no one took seriously, until I ended up in complete heart block while on vacation in Greece.  The docs there put in a pacemaker but had no idea why this had happened. It took two more years to end up with the diagnosis of cardiac sarcoidosis. If my docs back home had thought to look for sarc (either before or after the pacemaker) I may have been able to reduce the inflammation in my heart with steroids (the treatment of choice for sarc.)  As it was, too much time had gone by. I am now looking at getting an internal cardiac defibrillator (ICD) for tachycardia (dangerously fast heart beat.)

It's good that you're getting a cardiac MRI. You should also have an echocardiogram with strain (the "strain" part is important as it can see much finer damage than a regular echo) to check your heart function.  The MRI is good at finding scarring caused by sarc, but the gold standard for seeing active inflammation is a dedicated cardiac PET scan, so having both is best. You should also have chest xrays to look for lung and lymph node involvement.

A biopsy is required to confirm sarcoidosis. This can be from a lymph node, lung tissue, even a skin eruption.  It does not have to be from your heart if another location can provide a sample.

Sarcoidosis has an affinity for younger people for some reason.  It also has a higher incidence among first responders, military, even medical personnel.  You can learn a lot from the Stop Sarcoidosis community on the Inspire website:  https://www.inspire.com/groups/stop-sarcoidosis/ 

At the top of that page is a "Find a Physician" tool that lists recommended providers in your area.  Most physicians are not familiar with this rare illness, so it's imperative that you find a specialist team or sarcoidosis center to work with. Larger city hospitals or university medical schools are often a good bet.  Where do you live?

It sounds like you're currently in a safe place in case your situation goes south. As another poster says, there may not be a need for an emergency procedure, giving you time to do your research.  You need to gather information and that's what you're doing. Try not to worry about the big picture right now.  You can only take this journey one step at a time no matter where it leads.

Please keep us posted!

Hey Soldier

by CMH22567 - 2019-10-13 03:12:32

Its ok to be scared, worried and confused right now. But hey we are not robots, we are only human and bodies do unexpected things that we cant control. What will be will be. Like the ambulance driver said to me "if it gets worse you will pass out and will not be aware of what happens next". I was ok with that. One step at a time buddy. P.S I also had bradycardia and a complete heart block, I am pacing at 100%, its better than pushing up daisies. xo

Updates

by Wopper - 2019-10-15 17:10:52

Hi everybody,  

thanks again for the quick and effective support. Sorry for the language but I was a little shaken when I wrote my first post. 

Things have developed a little bit in a somehow good direction. 

I discharged myself from the hospital I was on a second degree type 2 block. There was no cardiology there and even if the doctors were good I wanted to go to a proper place. So me and my girlfriend jumped in the car and driven 8 hours to the top notch hospital in the province. An hour left on our trip I felt something change and I went into complete heart block. Pulse slow and irregular, that was scary. When I walked in the ER I was still in complete block but somehow still "stable". that was scary but I spontaneously regressed back to second degree and felt a little better. 

Every single doctor has done nothing else than telling me "pacemaker". 

I have spent two days in the CCU monitored without receiving any treatment, not a single one. I have been doing research in the meanwhile, piecing everything together for the last year and realized that my symptoms are very likely to be Lyme Carditis. I preached the doctor to start antibiotics for two days without any success. Cardiologist would just look at me and tell me to stop googling. Too bad I have a strong medical background and I am 3 years into a Bachelor in medicine related subjects. So I didn't listen. 

finally yesterday doctors rotated and I convinced the new doc to call for an infectious disease consult. 

He came back and put me on antibiotics right away. The specialist said they should have started it three days ago based on suspicion only. 

Two hours after first dose I converted to a stable first degree block and never dropped a p wave since. This morning my heart started showing good response. They put me on a treadmill for stress test and went all the way up in the 100s without a glitch. Still on first degree block but exponentially better.

There is no definitive diagnosis because they misplaced the first sample of blood for lyme so they are repeating it now, it will take days but they will keep treating me for it and hopefully I will keep improving. If it's confirmed, I have 94% chances of making it without a pacemaker according to the studies. 

I have been given the fighting chance I wanted, that's all I ask. 


Thanks again everybody for the support and the energy! 

Mike

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