There's Good News & Bad News

This was by far the most difficult blog to write.  I’m not completely sure why…. Maybe because if I write about it, then I have to admit it all happened…. THEN, I would have to actually deal with it.  I’ve tried to ignore previous diagnoses before…. It really doesn’t bode well for a ‘balanced,’ healthy, mental state.  I took some time to process it all.  I hoped for a diagnosis… and I got it.  I apologize for the delay….

To say the least my visit to Cleveland was an interesting one.  Of course the men in leather started off the visit with a… bang… or actually a smack.  Ugh – I just threw up in my mouth a little bit.  Ok – moving on. 

Over the course of 3 days, I visited with 4 incredibly skilled, amazingly smart, startlingly educated doctors, several tests, a long visit in the device clinic and many ‘story-telling’ sessions.  Each doc has read “my case” and had a general grasp of where I’ve been and what I have.  I spent anywhere from 30 minutes to 4 hours with each of the physicians and their respective staffs.  What was amazing was I didn’t feel as if any of the specialists were rushed.  How can that be? This is the Cleveland Clinic.  I was told they see 16,000 patients a day.  How can they spend any more than 30 seconds with each patient? But they did.

On day one, the vascular specialist shared her suspicion of what she thought was wrong… she ordered tests.  On day two, I met the congestive heart failure specialist and underwent the tests. Then swooped in the cardiac interventionalist surgeon.   He congratulated me on diagnosing myself.  I asked if I could keep the check.  He actually said it was only fair.  I dig that doctor – A LOT!  We reviewed surgical “options”.  Since ALL surgical options suck, he recommended that we try conservative treatments for 8 weeks… then we’ll see.   I was completely overwhelmed. My mind was spinning.  So what was a girl to do? Go to “Little Italy” of course…. in search of good, authentic Italian food and the perfect cannoli.  I found it. The next day I spent a few hours in the device lab getting the biventricular pacemaker and internal cardioverter defibrillator (BiV/ICD) checked out.  Next I met with the electrophyisiologist cardiologist.  We discussed the surgical options again…   By Thursday, my 44^th birthday, I was on a plane back to Birmingham (a day early).

 

So what’s the Good News?

The heart failure and cardiomyopathy appears to be stable.

So what’s the Bad News?

I have a complete venous occlusion (blockage) and blood clot in my chest.  Apparently, this is a complication of the BiV/ICD being implanted.  There is a possibility of throwing the clot…. a pulmonary embolism, among other terrible things may occur as a result.  I will not regain full use of my left arm. There is permanent damage to the vessels in the arm.

So what are the treatment options?

The conservative treatment is compression therapy, anticoagulants and PRAY!

The invasive and EXTREMELY dangerous treatment is to have the leads (wires) removed from my heart.  For those of you that don’t know, in order to remove the wires, the doctor has to laser the micro-screws out of where they are secured to the chambers of the heart, then attempt to pull 4 leads out of the tiny, fragile vein they’ve been crammed into – all the while hopefully without damaging the heart muscle and/or the vein without permanent irreparable damage. IF I survive the surgery and since I am pacemaker dependent a new device has to be placed on the right side of my chest with a whole new set of leads (only 3 this time) being crammed into a vein on the right side…. Oh and hope the blockage/clot deal doesn’t happen on the right side and jack up my right arm.

Postscript – The doc was right – I did diagnose myself. I said it was some kind of blockage since last November.  The local docs didn’t diagnose it. I had to travel 1600 miles round trip and spend several thousand dollars only to be told what I already knew.   I didn’t think beyond the quest of obtaining confirmation of what I thought was going horribly wrong with my body.  I was so busy on this path of finding out what the H E double hockey sticks was wrong with me – that I did not consider ‘what’s next’.  At home, the docs passed me around like a hot potato.  No specialist or internist locally would help me “own” what was happening to my body.  I was alone.   Alienated from the people who were in charge of my health care.  I’m not bitter.  Check that – yes I am.  The diagnosis sucks. I will have to deal with that at one point or another.  However, the alienation, the abandonment that I feel from my local doctors…. That is what I am struggling with at the moment.  

What’s the lesson here? Is there a moral to this story?  Yup! There is.  Despite what is going on in my body or in my head at the moment…. My God is in control.   I kept thinking to myself, “God is keeping me alive again… I can’t wait to see what He has up His sleeve this time.”

Well, my lovelies, that is all for now.  I promise not to be so distant.  I’ll be back (in my best Swartzenegger voice). Be good to yourselves! Be blessed! PEACE! Roger, over and out!