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!

It's Hot in Cleveland!

They say its “Hot in Cleveland!”  It certainly has been an interesting trip. I’m not sure I can do it justice by merely writing about it.  There has been intrigue, deceit, violence and leather (and that was just at the hotel)!  Don’t let me forget to tell you about the terror plot, explosives and deviants later!  So back at the ranch… it wasn’t hot in Cleveland when I arrived – the high was 57 degrees. Brrrrrrr.   

I found my luggage, wandered aimlessly for a few moments and identified a town car to take me to the hotel (cost the same for a taxi, so why not?)! Michael was my driver’s name; he thanked me personally for Trent Richardson from Bama football being the #3 NFL draft pick to the Browns. Yay me! As if I had some cosmic power to make THAT happen just because I live in Alabama and was visiting Cleveland!  Yep! This was going to be a good trip! I can tell already!  I arrived at the hotel, shook Michael’s hand and proceeded to the front desk at the hotel.  The lobby, restaurant, lounge and bar area was packed with festive people.  “Interesting,” I thought, “its Sunday night. It must be a convention in town.” I was quickly checked in, was provided the low down on the amenities of the property and given directions to the elevator.  

After ‘freshening up’ and unpacking I headed back down to the restaurant to grab a bite to eat. I wanted to retire early; I knew I would be wiped out from the flying and lack of sleep. I knew that 6 a.m. was going to happen rather quickly.  I had it allllll figured out. I was seated quickly, offered a beverage and was left with a menu.  As I perused the fare, I hear an eruption of laughter from the large table over. It was a group of guys, hanging out, having dinner. I went back to my menu and attempted to order something heart healthy!  As the waitress left with my order, I look at a 2-top table directly across from me.  There sat alone was a middle-aged man who looked ‘pinched’… almost angry. I wondered what he could possibly be upset about. I mean, after I got Richardson drafted to the Browns?? Oh… I bet he’s not from here… duh! He’s in a hotel.  Ok, so I wonder why he’s ticked.  

Oh well.  I glanced past the angry guy and saw a smaller table filled with more men. Huh…  I looked at the tables behind me. More men. Men are EVERYWHERE. Now, I know some of you are thinking…. That can’t possibly be a BAD thing.  And it’s not.  But what was curious to me was other than the two waitresses and the front desk clerk… I was THE ONLY FEMALE in the joint….  What’s wrong with this picture??  Now, the hotel I chose is close to downtown, which means it’s close to the field where the Indians play baseball.  But I checked their game schedule before I arrived and knew they were traveling this week.  The hotel is also close to the convention center where the Cavaliers play basketball…. But the regular season is over… it’s not football season yet….  That’s when I started to look closer at all the men.  They were many that looked like everyday guys…. Some old, some young, many are bald, some had hair, some were clean shaven, some had beards, some had mustaches, some had goatees. Was there anything similar about these guys? What the????  (Insert sound of a record scratching) There was one striking common denominator.  THEY ALL HAD ON LEATHER! Leather vests, leather pants, leather hats…. That’s when I thought I figured it out ….   It MUST be a Freddie Mercury convention in town!!! It must be some sort of annual tribute or homage to the lead singer of Queen.  

Freddie was a truly gifted musician and vocalist who was a flamboyant, colorful character on stage. I wasn’t old enough to see him in concert  or really to know much more about him or the group than to be able to sing along to “We Are the Champions” and giggle when I tried to sing along with “Bohemian Rhapsody”….  “scaddamoosh, scaddmoosh, will you do the fandango?” I vaguely remember seeing concerts or bio’s on TV about him.  By this time my dinner was delivered.  Yum. I noted the angry man inhaled his food and left the restaurant in a huff.  I shrugged it off, paid the check and began making my way to the elevator.  I noticed the warm cookies were being put into the serving container as I was about to walk by… pit stop!!  Love a gooey cookie.   As I turned on my heel, and put said cookie into my mouth to take my first bit is when I saw it.  

All at once, I gasped! This of course meant sucking a loose crumb off of that cookie and having it lodge in the back of my throat – coughing ensued!  As I was trying to avoid choking to death, I couldn’t stop staring.  Yes. I admit it. I was staring. I was staring at the very large man standing against the wall with his back to me. That’s not the unusual part….  He too was wearing leather! A leather hat, a leather vest and leather chaps!!! Yes, my friends, leather chaps! No pants mind you…. Just chaps and boxer briefs!  OMG!!! He turned only to see who was choking to death. That’s when I noticed the leather harness across his chest and leather collar around his neck…. And the piece de resistance (French for the best part) – was leather collar was connected to a leash in which his “owner” held with one hand and in the other he held a cat of 9 tails. EIWWWWWW.  

I quickly made my way to the elevator. I wanted to die in piece – alone!!! I was so grateful that the door was closing and I was the only passenger…. UNTIL…. A hand stopped the elevator door from closing (oh crap!)… entered 5 leather clad men of various shapes and sizes, some follicly challenged (no hair) and others had enough hair to make gorillas jealous!  Of course my room is on the TOP floor…  I stared at my cookie.  The same cookie that about killed me a moment before.  It turns out that it wasn’t a Freddie Mercury tribute.  It was some gathering of men wearing leather and crowning a king and queen. I only looked up from my cookie when one of them said, “Hey guys, look, we have her surrounded.”  I was about to go all New Jersey on them when another one tapped me on the shoulder and said, “its ok, honey, you’re safe with us!”  Eh hummm.  I went back to staring at my cookie.  Let’s just say, I triple locked the hotel room door and had to try to get some sleep.  Apparently, the guests next door didn’t need to get any sleep and put that cat of 9 tails to use. Needless to say, I slept with the TV on with the volume turned up.  There’s a whole new image in my head of what “Hot in Cleveland” looks like.  YIKES! I just threw up in my mouth a little bit!  More to come…