Then My Heart Stopped. Literally.

Happy Saturday night everyone!  I want to write this post for a few reasons.  First, I am pretty open about things that go on in my life and I process a lot by writing about them.  Second, people have started to ask me what is going on with me lately and this will be a very easy way to let a lot of people know at once.  Third, as I have been going through all of this over the past few months, I have gotten so much out of reading other people's experiences through their blogs, message boards, and them sharing their stories.  If there is one thing that I have learned in sobriety it is that to be able to find people who are going through what you are going through and who truly understand you is priceless.  I hope by writing this post and sharing my journey as it goes on I can help give someone some comfort or just show them that they are not alone.  

I will try to keep this all as short and succinct as possible but we will see how it goes!

I fainted for the first time in the 4th grade.  At school.  In class!  I always felt awkward enough as it was but to faint in the middle of class, fall backwards out of my chair, bang my head on the floor and convulse....well, that gave me a whole new level of weirdness.  At least in my head.  All I remember is feeling a little funny and then waking up with my teacher and classmates all around me panicked.  My best friend was crying.  I think back now and it must have been frightening because 4th grade is young for that to happen!  I was wheeled to the nurses office and picked up by my mom who immediately took me to the doctor to get a check up to make sure that I was okay.  I think they chalked it up to heat because at the time my elementary school had no air conditioning.  

As the years went on, my fainting became somewhat of a family joke.  It mainly happened at doctor's offices or in medical situations.  It happened after a shot for poison ivy.  It happened when I got my braces off at the orthodontist.  After the fact mind you.  Mortifying.  It happened one morning when I was at home and I had an eye infection.  I was looking in my eye in a mirror in our bathroom and next thing I know I am waking up in bed.  I fainted and my stepdad had to carry me to my room.  I fainted after my first pap smear with no pants on yet (!!!).  Luckily my gynecologist was a very kind man who had also delivered me as a baby. Neither here nor there but what an awkward experience!  It began to frustrate me and embarrass me most of all.  

I could go through every moment I have fainted in my 34 years but it would take an entire post.  I will just say that it has happened during nearly every medical thing possible - after a chiropractor appointment, during a blood draw, before a flu test, during a mammogram, and at multiple convenient cares.  In my early 20's it happened at home for the first time in years in the middle of the night.  I woke up feeling nauseated so I got up to go to the bathroom and I didn't make it.  I face planted between our bathroom and bedroom.  I knocked out one of my front teeth, cracked another, got a black eye, and hurt my knee.  I never did get sick.  Just the fainting and feeling horrible.  Some of my friends can attest to how horrible that experience was.  I looked like I had been beaten.  In fact someone asked one of my friends if my husband was abusing me because who believes a story like what had actually happened? 

In the past few months I have fainted at a convenient care, during a mammogram (yes, DURING), at the cardiologist, and twice at home.  The two times at home have been the ones that were concerning.  It was just like a few years ago - I woke up in the middle of the night and felt nauseated.  Go to the bathroom in case I vomit and down I go.  I try to yell for my husband usually but it's usually too late and I can't get the words out.  He hears the commotion or Rocko comes in and makes a commotion.  Like I said, we always kind of just joked that I am a fainter, no big deal.  My family doctor knew that I did  it and obviously so did a lot of other doctors in my life.  Everyone just said, "Oh, she has "white coat syndrome!""  

In December 2015 I had my blood work done with my family doctor.  I was diagnosed with hypothyroidism when I was 18 and have been medicated since then so I get blood work done frequently to check on things.  Over the past couple of years I have had several things "off" with my blood work indicating that I most likely have an autoimmune disease of some sort.  So he referred me to a rheumatologist to look further into things.  

I had my first appointment with the rheumatologist in April.  He was fantastic.  He did a full physical on me, asked me a TON of questions, and did a full blood workup.  I will save all of the autoimmune disorder discussion for another post because that is a whole other monster.  While I was in his office getting my physical, I nearly fainted two times which was not a surprise.  I have gotten to where I tell every nurse and doctor, "Hey, I am a fainter so be prepared.  I can usually give warning but not always!"  He was actually kind of glad he saw that happen because he noticed as I switched positions from laying down to sitting up quickly was when it happened.  He asked me if I had ever had a cardiology workup and he was pretty surprised when I said no.  Honestly it had never occurred to me.  I am pretty healthy overall.  Going to a cardiologist sounds scary and serious!  Why do that?!  I'm fine!  He insisted that I go see one to get some tests done to check on things so off I went to make that appointment.  

On May 2nd (which coincidentally was my 5 years sobriety anniversary!), I saw the cardiologist for the first time.  My mom went with me because I was pretty nervous and well, as you know, I faint all of the time at appointments so having a driver is pretty necessary!  He hooked me up to an EKG machine and said that everything looked pretty normal with that.  That was good news!  Then he started talking to me about my symptoms and my episodes.  I explained to him that they were always the same - I had about 20 seconds warning typically.  I get tingly, hot, sweaty, clammy, pale, and my blood pressure drops.  Down I go.  I convulse.  I wake up drenched, confused, and exhausted.  Then I am exhausted the rest of the day.  He asked how often it had happened and I told him 4 times over the past 3 months.  His response was, "Well, you know I can no longer let you drive."  WHAT?!  WHAT?! I wasn't expecting that.  I gave my mom a look.  The, "Is this guy crazy? Do something mom!  Tell me that isn't fair!" look.  But he was serious.  He said that until I am 6 months "faint free" that he cannot let me drive for my safety and the safety of others.  I tried bargaining.  But, but...I have never fainted while driving!  I have only fainted in medical situations...and...at night...and....crap.  He was right.  I suppose it COULD happen anytime.  I was pretty upset.  I am not going to lie.  I mentally turned into a 5 year old child having a tantrum.  I only let out maybe 40% of the tantrum with my mom.  That was a win in my book.  HA!  So aside from that life changing news, he said that he felt most likely this was what is called Neurocardiogenic Syncope or NCS.  He wanted to run me through several tests just to make sure and to rule out other things.  He said that one thing they can do for NCS is give an SSRI but I have already taken one for years and it was obviously not helping.  So he said for now to up my salt intake and drink twice as much water as I had been drinking so as to stay hydrated.  So I left there with several more appointments and no license.  It wasn't funny at the time but it is now - my mom said isn't it ironic to lost my drivers license on my 5th sobriety anniversary.  Hardy har har....  So I sat in some self pity and worry for the rest of the day after eating a lot of ice cream.  I looked up symptoms though and lo and behold....I have experienced almost ALL of these things.  

Then I started looking up stuff online.  This can be a good or a bad thing as most of us know.  For me I enough of a realist to not get bogged down with the overly dramatic information about conditions so I stuck to the basics and began looking up things about NCS.  It all made sense!  I also found a couple of Facebook groups and some message boards online and I couldn't believe how many other people experienced these same things!  It was comforting to me and I found a lot of helpful information.  

Over the next few weeks I had several different things done.  And I had no license. Very inconvenient but luckily I have a lot of great friends and family willing to help me.   

Echocardiogram - That was painless and shockingly, I did NOT faint!  Surprisingly!

Holter Monitor - During my first doctor appointment I was given a holter monitor that I had to wear for a week.  I am told that is a pretty short time to have to wear one so I feel lucky that was the case.  The holter monitor was painless, just very inconvenient.  No one wants a bunch of wires hanging off of them at all times attached to sticky electrodes.  I also had to make sure I was with my handy dandy little blackberry looking monitor at all times so they could record the data.  I was to press the buttons on the monitor if I had any symptoms of syncope.  I ended up with no syncope symptoms during that time which was a bit disappointing.  I kind of wanted them to have an episode to record honestly.  I even got strep throat during that time and just KNEW I would faint with the penicillin shot but no dice.  What I DID get from the holter monitor though was horrible blisters, horrible itching and burning and now scars (that I am sure will go away) from the glue and stickiness of the electrodes.  I learned that from now I have to ask for the "kid" ones or hypoallergenic.  If you have sensitive skin I suggest that! It was painful!!!

Stress Test - I went in ready to get on a treadmill and do my thing.  I used to be a distance runner!  I love high impact workouts!  I love the gym!  I am ready for this!  Or at least the old me was.  The new me....not so much as it turns out.  I got all hooked up, started walking.  Then walking faster.  Then came the run.  I ran for about a minute and a half and I could feel the symptoms starting.  The light headedness, the tingling, the drop in blood pressure...so I told the nurse and she said, "oh yes, honey you are PALE!" She helped me down to the table and my blood pressure was 70 over something.  I was out of it so I didn't catch the bottom number but yikes on the top one.  She said it was good to see that though.  Any information was helpful at this point.  So boo on the stress test.  Where is distance runner April!?

After all of those tests, I had an appointment with a different cardiologist.  He is a cardiac electrophysiologist.  They focus on the "electrical" system of the heart.  He said that the results of my tests didn't show anything major to be concerned about.  I thought, all of that for nothing?! He said that he did think it was just NCS and he discussed the salt intake, staying hydrated and compression stockings with me.  I asked him if I could drive again since everything seemed fine and he said he wanted to do one more test just to rule out anything else and that was going to be a tilt table test.  He wanted to rule out POTS and anything else that might be going on.  So off I went with my compression stocking prescription and renewed hope that maybe, just maybe I would be able to drive again soon!  

Check out my newest accessory - aren't these fun?  Actually no.  They are just hot and itchy but hey, I will do what he says to do at this point!  Although they do actually give me probably more of a tan look than I will get naturally.  Hm.  

So this past Tuesday I went in for my tilt table test.  I had read up on it and had it explained to me by the nice nurse who called the day before.  It seemed pretty harmless.  I had read several people have bad experiences with it but I thought, well, I will be strapped down so what is the worst that can happen?  (If you are curious what this test is all about, click --> here!)

I got in the room, they got me all hooked up to a heart monitor, blood pressure cuff, and got my IV in and I was told just to relax until the procedure.  Tommy thought I would faint with the IV but I didn't.  Probably because I was laying down the whole time.  

Here I am waiting on the procedure.  Thumbs up!  Let's get this thing started!

The nurse explained to me that they would raise/tilt the table up slowly from laying down to about a 70 degree angle.  She said I would then "stand" in that position for 20 minutes.  If nothing happened then I would lay back down and they would give me something in my IV to get my adrenaline pumping.  I would then be stood back up for another 20 minutes.  They basically try to get you to have syncope symptoms or at least pre-syncope while hooked up to everything so they can monitor you.  I told my mom, "I don't see how them just standing me up is going to make me faint."  Ahem.  Oh hello.  Let me just eat those words.  As soon they started tilting me I could feel it.  I stood for about 15 seconds and I looked at the nurse and said, "It's happening.  I feel it. I'm going to...." and next thing I knew I was waking up to my doctor saying, "April, say something.  Say something!"  I was disoriented and hot and icky but I managed a, "Uh..."  The nurse said, "Wow!  You might win the award for the quickest fainter on our tilt table test!"  Oh good.  Just the award I want.  But guess what?!?!  They finally FINALLY saw something!  I didn't say it was a GOOD something but it was SOMETHING!!!  Apparently....my heart stopped beating.  That's right.  Flatline.  See that little printout down there?  See that flat line?  Not supposed to be flat.  It turns out that when I was "out" my heart stopped for 7 seconds.  It started to come back very slowly as I started to wake up.  This was obviously a cause for concern.  I mean...a heart stopping can't be good!  He asked if that was how it always felt and I said yes which lead him to believe that anytime I have fainted this has happened.  Which means my heart has stopped before.  A LOT.  I was like so.....what does this mean?  What do we do now??

To make a long story short he said that we could try medication but he wasn't so sure that would help in my case.  He said we could implant a loop recorder in my chest to record my heart activity 24 hours a day.  That way the next time I have a syncope episode it records what is happening.  We can then see if yes, my heart is stopping every time.  If that is the case then we would without a doubt insert a pacemaker.  Or the other option was to go ahead and insert a pacemaker at that time.  I wasn't expecting ANY of that and it all seemed a bit overwhelming to me.  I did tell him though that he was the doctor and that I would do whatever he suggested.  He consulted with a colleague and decided that he would put me on Midodrine 3 times a day which is a medication for low blood pressure and we would implant the loop recorder.  He asked would I want to go ahead and do that today if they could get a spot in the OR?  Did I WANT to?  NO.  But I also wanted to get everything over with.  I was already at the hospital, hooked up to an IV and my mom was there and hubby was on his way.  I didn't want to go home and be anxious about it so I said, yes, let's do it as soon as possible.  He made a few calls and next thing I knew I was on my way upstairs to a room to get prepared for the procedure.  I had just wanted french toast that day.  I hadn't intended on all this!

This is where the loop recorder gets inserted.  It is about the size of a regular memory stick.  

I had never had any surgical procedure done other than wisdom teeth extraction so I was a little nervous.  They asked if I wanted them to give me anything to calm my nerves but as a recovering alcoholic/addict my immediate answer is "NO!"  So I just rolled with it the best I could.  They asked me a bunch of questions and before I knew it, I was on my way.  It all happened VERY fast.  The OR was FREEZING cold but they let me have heated blankets until time to get prepped.  Thank you Heart Hospital nurses!  For the implant procedure they only give you a local anesthesia so yes, you are awake the whole time.  Once I was all prepped my doctor came in and they covered my head.  WHY ARE YOU COVERING MY HEAD?!  I was a bit anxious!  And I'm super claustrophobic.  I was trying not to panic.  And then came the shot.  The numbing shot.  Which they assured me would be the worst part and at that point they were correct.  That shot is NO joke.  It hurts. It stings.  It burns.  It's like a penicillin shot in the chest/left breast.  I wanted to climb off the table.  And then I could feel the poking and prodding and pulling as he cut the incision to implant the loop recorder device.  It didn't hurt necessarily, it was just uncomfortable.  And my syncope symptoms started but I was laying down so I didn't actually faint, I just had to get through them.  The procedure itself took a little under 2 minutes.  It was very fast.  I was most happy to get all of the stuff off of my face so I could breathe!  It took me a few minutes to cool down and calm down after having the syncope symptoms but before I knew it I was being wheeled back to my room.  

Here I am after the procedure - see?  Still thumbs up!  Though at this point I was feeling a bit more thumbs down....

As the numbing potion wore off I was in pain at the incision site but they said that was normal obviously due to the procedure.  I had to stay about another hour in the hospital for them to monitor me and give me instructions on the device. The recorder can stay in up to 3 years OR until I have another syncope episode.  I can't remember the last time I even went 6 months without an episode so I am guessing that I will get it before 3 years.  The recorder will record everything going on 24 hours a day.  If I have symptoms or actually faint, I have a small remote that I put up to the chest area and press a button so that it flags that part of the monitoring.  If the next time this happens my heart stops again, I will have to get a pacemaker.  My cardiologist said that I should prepare for a pacemaker sooner rather than later, most likely in the next year or so.  I feel pretty young to have one (34!) but if it helps things then by all means, I will do it.

After leaving the hospital I went and had french toast at Cracker Barrel (that is all I wanted that day after all!) then came home to rest.  The pain at the incision site was getting worse and I was exhausted from fainting and the whole day.  It was a lot, especially for not being prepared for it.  Oh and he also said don't get my hopes up about driving anytime soon.  Boo.  A little more self pity thrown in my bucket.  HA!

The past few days have been kind of weird.  I have been in pain at the incision site but it is getting better every day.  Sleeping is the worst because I can't get comfortable.  I typically sleep on my side but I am having to lay on my back.  I can't lift my left arm, push or pull anything, or really do anything with my left arm because it hurts the muscles in my chest where all of this went on.  I know it will get better every day so I'm hanging in there.  I am exhausted.  I tire easily right now.  Making myself rest is NOT easy for me but I now have to remind myself that this is my HEART.  I HAVE to take care of myself because this is no joke.  I have an appointment next week to get my bandages all removed and to have wound check.  From there we kind of just wait and see what happens with the recorder.  I'm hoping something happens sooner rather than later honestly.  But a break from doctor's appointments will be nice.

If you made it through all of that, well, you must be one of those people who really loves me and cares about me because that was a LOT.  HAHA!  But when people ask me what is going on, it's hard to explain all of this quickly so it's all here now for anyone to visit if they have questions about what is going on with me.  It's been noticeable in my life and it has changed my life.  I can't drive now so I have had to give up some things that I have been used to doing.  That has been hard.  I am not able to exercise like I want to right now.  I tire very easily so I can't do as much as I want to be doing.  Thank you to everyone who has given me rides and given me support through all of this.  I am very blessed to have the friends and family that I have!

I will keep this updated because again, I have gotten so much out of other people writing about their experience so I want to do the same.