Tuesday, January 31, 2012

Becoming the patient...Part 4: I survived

What a week it has been.  The events of last week seem SO long ago.  After my last post, I had to run in for a cardiac echo (ultrasound of the heart) to make sure things looked ok - just a routine check before the ablation.  Most of the time, during an echo your back is to the machine so you can't actually see the pictures.  This time, I had my only little monitor so I could watch the whole thing.  While I am far from an expert, I have watched enough echoes on babies so that I can actually tell a bit of what is going on.

As I mentioned, nothing ever tends to be "normal" with me.  It has become quite a joke.  Well the echo was par for the course.  I could easily see that my mitral valve wasn't working the best - this was known before but I could definitely see the problem.  After the tech finished, they go review it with the physician.  If the physician has questions, usually they will come in and do part of the echo.  Well a different tech came back and said she needed to do some more.  A bit odd.  I noticed how she instantly honed in on my mitral valve- no surprise.  But then she spent way more time zoomed all the way in on my aortic valve.  I couldn't see anything wrong with it, so I was a bit freaked out on why she spent quite a bit of time on it.

And many hours later, I still hadn't heard anything about the results.  So I made some frantic phone calls as it was nearing 5pm.  I got ahold of the cardiologist that I had seen, and he told me there was some stranding of my valve and there was concern that there was a tumor in my aortic valve.  I would need a transesophageal echo in the morning (they put the ultrasound probe down your throat while you are semi-asleep so they can look at the underside of your heart closer). Not my idea of fun.  And then the panic set in.  This was an "incidental finding" as has been every other organ system that has something wrong in me (which is nearly every organ).  Not good for psyche.  I panicked.  I cried.  I definitely wasn't anxious about the ablation cause now I was worried they would need to do open heart surgery.  So maybe that was a blessing.

I made some phone calls to my pediatric cardiology friends and told them what was going on.  I got a bit of reassurance.  I still didn't sleep.  I got up at the crack of dawn, and the husband and I made our way to the hospital at 5:15 am.  And then we promptly waited. And waited. And waited.  The echo happened around 8:30.  I got put to sleep, then woken up by 10. And then we waited. And waited.  And finally at 2:30 pm they took me for the ablation.  So glad we got there at 5:30 am. I actually could have eaten breakfast.  But no -no food or drink in 15 hours by this point.  Have you ever seen me when I get hungry? Yeah -I turn into a bear.  At times I become a bit delirious.  I may or may not have tried to rip IVs out in the past when this has happened.

Then I met the nicest nurse anesthetist.  Seriously bless her heart.  She gave me a ton of fluid and then asked if I had a caffeine headache (again have you seen me without caffeine) "YES I want my coffee". "Ok - here it is" and she gave me caffeine in my IV.  Ahhh... We use this on the babies all the time to make them remember to breathe.  But let me tell you - the IV form was worth whatever the cost was.  Headache instantly went away.  Then I got knocked out by the magic drugs.  I was supposed to be awake for most of the procedure.  But guess what - my heart was "more than compliant" and put on quite a show even with me knocked out.  The next thing I knew I was being told it was all over.  That they fixed my heart.  It was a success.  And the time - 10pm!  Dang that was a long day.

Oh yeah - and there was no tumor.  Something isn't normal with the valve and it is leaking a bit.  But for now, it will just be watched every year.  And my heart is pleasantly ticking away at 60 beats per minute (or less).  I don't feel my heart beating anymore (ok never knew that most people don't actually feel their heart constantly beating).  But with all the worry, fear, and anxiety - I am pretty darn pleased with the results.

Turns out the third time really was the trick.

And they found 2 different areas that were messing up my heart (left atrial tach around the mitral valve and right sided AVNRT for my geeky friends).  I asked if they ever see that. "Um...Rarely...No not really ever".  Yep. Go figure.

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