Answers...finally.

I met with my new cardiac electrophysiologist on Thursday, Dr. Klein.  I have had very high hopes for this appointment and was eager to hear a new perspective on the situation.  I gathered all my medical records from the past 30+ years and headed in.  When I walked in the room the nurses said, "Oooh, he's really going to like you, you brought records."  Good sign.

He came in, introduced himself, smiled, and pulled up a chair.  Then he told me to start at the beginning.  And we did.  He poured over every slip in all those files.  We rehashed every scenario, diagnosis, test, ER trip, surgery, medication, and hospitalization.  It was like something out of a medical drama. He was able to flip through and read EKG sheets at lightning speed.  Then we talked about my current symptoms and I started to cry.  It has been such a frustrating experience these past five years and even before.  No one ever seems to fully understand what is happening.  I have been mocked, laughed at, and disregarded by many medical personnel along the way.  I have been harshly accused of drug use by more than one pushy ER doctor. No one had an answer, so they just brushed it off.  I really feel for all those who struggle with chronic pain, chronic fatigue, thyroid imbalances, etc. because this is often the situation for them, too.  Being sick for years is hard.  Being sick for years with no answers is even harder.  Always wondering if you need to go to the doctor and what are they going to say. He promised me we would figure this out and we trudged forward.

His first red flag was that none of my records have documented episodes of ventricular tachycardia- my diagnosis of the past 20 years.  I've heard that mentioned before, but no one ever pursued it further.  Dr. Klein was not giving up.  He wanted to see the reports from my 3-day monitor in August.  The nurse went out to have them faxed over and we waited.  As soon as he read them, the light bulbs starting going off.  All the events on the record where palpitations, PACs, and tachycardia of the sinus nodes, not the ventricles.  And he was able to deduce from looking at the strips of several different leads that all the impulses had the same vector direction.  He started sketching it all out on paper.  The faulty signals are coming from a sinus node at the top of my heart and are creating repetitive circuits within my heart.  This node is defective and extremely sensitive to stimuli.  Instead of SVT, I actually have IST-inappropriate sinus tachycardia.

He suspects this is just one part of the issue.  The other is dysautonomia, a disorder of the sympathetic nervous system.  Essentially what is happening is I have a dysfunctional "fight or flight response".  When it is triggered my body overcompensates and cannot convert itself back to normal.  My dysfunctional sinus node is also overly sensitive to stimulus.  It can be triggered by adrenaline, thyroid hormones, exertion, etc. or for no reason at all while sitting or sleeping.  It is aggravated by caffeine, illness, medications, etc.

It was SO validating to finally feel like someone understood what was going on.  I had to fight the urge to not jump up and hug the man.  He cracked the code! So now what?

The first step is no caffeine, ever, or even decaf.  No more coffee, tea, or soda- just juice, water, and herbal tea.  I must follow a low sugar diet.  And the next really threw me, heavy salt intake.  Yes, you heard right.  He told me I need to eat as much salt as I can stand at every meal.  Salt everything on my plate!  Bizarre.  And I need to drink as much water as possible.  Together these last two help maintain blood pressure and blood volume.  I need regular cardiac exercise to maintain a high fitness level.  And we are working on putting me back on beta blockers.  People with these conditions tend to respond very well to these drugs.  That has been my case for the past 10 years.  He feels it is worth the time and effort to try and make them work again.  So I am slowly going back on a lower dose of Inderal.

We will reevaluate in December. If I am still feeling bad, he is going to put me on a more specialized monitor that will show exactly where the faulty sinus node is located.  Ablation may still be needed in the future.  If the symptoms can not be controlled he would then attempt to eliminate the node through surgery.  I feel completely comfortable with that response.

Then he took some time to ask me about Julia and how she is recovering.  He wants to pray for her and wanted to know when her next set of scans would be (October 14th).  We talked some about cancer and all the people at our church who are battling it right now.  I feel God's hand directly leading me to this wonderful man.  It has taken 20 years, but I am happy to say we finally know what is wrong and we are working on making it better.  There is no greater gift than the gift of HOPE from one to another.  He has given me HOPE on many levels and I am so grateful.

But I have to say I do feel like such a rebel when I salt my lunch every day.  Putting salt on cheese puffs and sliced ham and cheese just feels so wrong :)