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!

The Sum of All Fears - The Saga Continues, Part III

We made it …. Done with the waiting. That “Friday” finally arrived! We were entering the new building where the pediatric cardiologist “lived”.  I wasn’t sure what to expect. I’ve been going to specialists for so long now that I’ve forgotten what it was like visiting for the first time.  But this was different. I’m not the patient in this office.  I am the parent.  In stark contrast to my visits to the doc….  I felt anxious. Uneasy. Not comfortable. Almost sick to my stomach.  The thought of one of my beautiful, God-given children being diagnosed with heart disease makes me physically ill.  When I would stop to ponder those thoughts for any amount of time, I couldn’t help but get choked up and tears would well up in my eyes. I was feeling completely responsible for passing that mutant gene along to my kids…. UGH….

As I sat with my kids in the waiting room, I tried to take it all in… the sights. The sounds.  What was striking to me were the seemingly healthy kids of various ages.  There were several newborns, a couple new crawlers, a toddler, and a few preschoolers and a couple older kids. Ethnicity varied from patient to patient.  I wondered what was going through the parents minds.  Where they a little sick to their stomachs? Did they experience guilt for passing something on to their new babies? Or were they being seen for something completely out of left field… where they angry about it? Were they scared? I wondered if they lost sleep the night before. I wondered if any shed any tears. I can tell you I rode a wave of emotion.  One moment I was diverting the looks of my children because I was choking back tears and the next moment I was fine – because I was scolding one of them for something appalling – like whining. 

The appointment starting off with a 45 minute wait in the lobby.  Then we were called back to triage where height and weight measurements were taken along with 12-lead EKG’s. The boys were quite uncomfortable taking their shirts off in front of the nurse – they giggled nervously (I wonder how long they will be like that?). Both my kids are incredibly ticklish so they giggled and squirmed through the sticky pieces being placed on their bodies – not to mention complain a little because they were so cold!  I must admit – they are right!   It was a little anti-climatic when we were asked to return to the lobby to continue to wait. But what were we gonna do? Rebel? Begin a picket line? Pitch a fit? Right… I would never do that (besides that never worked for me before).  

We were finally called up to the BIGS…. We were all put in a room and we were questioned by the nurse – she pressed us about my history and then my family history.  And then the doctor arrived.  A vertically challenged, Asian man with a big smile, oversized glasses and a bow tie arrived on the scene.  He asked us similar questions about my heart disease and family history.  He asked the boys who wanted to go first. My oldest jumped at the chance to go first. Brave? Sure.  But he relishes the ability to be bigger, better, first over his little brother. It’s a thing.  The oldest did great.

My youngest was only a little apprehensive about taking his shirt off again… but he climbed right up on the exam table without any assistance and lay down.  Both were great patients. The 4 year old asked an incredibly intelligent question of the doctor.  “So what is the “goo” for?”  The doctor explained patiently to him what the ‘goo’ was for… I think TJ lost interest about midway through when he was trying to explain sound waves.  The boys were mesmerized by the gray, fuzzy shadows and patterns the doctor said was their heart. Both seemed only to mind the procedure when it was time to wipe off the “goo”.  Of course, the “goo” was cold by then.  

The doc said that both hearts were structurally sound, pumping and valve function look good and strong. The electrical disturbance Hunter experienced was not captured therefore, not diagnosed. The doc indicated that we should return if the frequency of the “hard” beats increases otherwise return in 5 years for another evaluation.

I asked why it is so difficult to get to see a cardiologist – his reply is that it shouldn’t be.  I already knew that answer.  So, we all shook hands and I returned to work after agreeing to meet up later for dinner.  My boys and their dad went shopping for my “early” birthday present.  I met them at one of our favorite restaurants. As we were beginning to dive into the food, Hunter puts his fork down and says, “Mommy, feel my chest.”  UGH….. the saga continues.... God is in CONTROL!!

The Sum of All Fears... Part 2

As you may remember, where we left off was … WAITING! Waiting for the blood work and EKG results from last week.  We were told that we should hear something from ‘someone’ by Thursday or Friday.  Often, when we press for more information about the ‘someone’ who will be calling, I am met with silence and or a long “uhhhhhhh.”  I can only assume that most patients accept the fact the unidentified ‘someone’ will be calling them.  Maybe most folks are happy that they will be receiving a phone call… from ‘anyone’.  Even this guy??


I’m dating myself now… I digress. 

Thursday came and went without a peep from ‘someone’.  Friday arrived.  Of course the call to my husband’s cell phone occurred when he was on the riding lawn mower at the athletic park where the kids play sports…. He didn’t hear the phone ring when that ‘someone’ was trying to call him THREE times.

He finally connected with the ‘someone’ who was trying to reach him. In fact, this time, that ‘someone’ was the boy’s pediatrician.  Of course the blood work and EKG for Hunter was COMPLETELY NORMAL! PTL! However, since there is a ‘dramatic’ family history of cardiac issues, the DOCTOR is recommending that BOTH boys see a pediatric cardiologist for full cardiac workup.  I’m SOOOOO glad she thought of it! Geeesh!  The pediatrician also recommends that we consult a genetic counselor. Ohhh goodie!  That’s  Lovely!  Ok – genetic counseling can sometimes help predict whether they will develop that heart condition in the future. Maybe.  But basically we will be attempting to determine if I inherited the same mutant gene and passed it to my beautiful boys.

There is so much that is unknown about cardiac stuff (yes, I said “stuff”… I use it as a technical term), it’s scary.  Protocols and procedures that used to be prescribed to treat certain heart diseases are now known as being detrimental to the patient and their prognosis.  Currently, I have not been diagnosed with ANY genetic heart diseases and I have NO structural defect that I am aware of that would cause concern either.  

My point to all the blathering???  Why is it so difficult to have my boys evaluated? Especially, in light of the fact, I am willing to pay for it, out of pocket!! Why do I have to suggest such an evaluation to a pediatrician my youngest has had since birth and my oldest since he was 3? 

And furthermore…. Why are kids not required to have a physical and full cardiac workup every year?? Why do we not require it as discerning parents? Why do we allow a physician that may see your kid once or twice a year make potentially life-altering decisions about your child’s care? I mean, let’s face it folks, some of us struggled to have babies. Some of us struggle to keep our kids healthy. Some of us struggle not to pop the little ankle-biters in the back of the head on a regular basis.  I say again…. WHY??  

This coming Friday, we are taking BOTH boys to the pediatric cardiologist.  I’m so glad they thought of it!! 

More to come! 

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The Sum of All Fears...

I have a few “fears”…. I guess we all do. Or we’re lying about it. I remember being a kid and being afraid of walking to my bed when the light was off.  I couldn’t reach the light switch from my bed and I didn’t like sleeping with the light on. My fix to that situation was to leap like an Olympian from the doorway to my bed. I was quite good at it. What exactly is fear?  The online dictionary I use frequently says, “ Fear, noun, (1) a distressing emotion aroused by impending danger, evil, pain, etc., whether the threat is real or imagined;”  It’s important to note that the definition painfully points out “real or imagined.”  Fear.  I also have an unnatural fear of flying insects that look angry and have the capability to sting me since being stung multiple times by really ticked off wasps as a youngster (my sister’s fault).  

Fear.  My battle with heart disease began when I was in labor with my first child and continued to deteriorate over time and with my second pregnancy.  For almost 9 years, I have silently feared that somehow I passed along a mutant gene that would cause my child(ren) to inherit various shapes and forms of heart disease since then.   Over the years, I’ve often been asked if I passed my disease along to my children or if I inherited my ‘heart issues’ from my parents.   As I spoke the words, “No…. my heart conditions are not considered hereditary,” I often wondered in the back of my head if that was really true.

Fear.  Last Friday night, after finally settling the kids into bed, my oldest son…. Very handsome, intense, funny, dramatic, athletic, 8 year old (almost 9) boy says, “Mommy, come feel my chest.”  I immediately became sick to my stomach.  Somehow, I intuitively knew what that meant. Each step toward the bed where he was laying felt like I had on cement shoes (which isn’t out of the realm of possibility since I am Italian).  I sat on the edge of the bed. His small hand reached for mine and placed it ever so gently on his chest.  I closed my eyes and drew in and held a long breath.   It felt as if my head would implode as I felt to all too familiar hard and irregular heartbeats in his chest.  I wanted to scoop him up, squeeze him tightly and collapse in a fit of fear and rage.  I was so relieved that the room was dark to prevent him seeing the blood drain from my body.   I choked back the tears and suggested that he just relax and take a few deep breaths.  I tried to reassure him that what he was experiencing was quite normal for many people, including kids. Which is true… doctors have told me that for years… I’ve regurgitated that when asked to speak for groups or at meetings….  Or when I’ve been asked in one-on-one conversations.  After several minutes, his heartbeat seemed to return to normal.  I was leaving the room as he was drifting off to sleep I remembered I was holding my breath. As I closed the door behind me, I gasped for a breath and was quickly reduced to a heap on the living room floor.  I could hear me talking to out loud, reassuring myself that this was quite normal, and to be safe I would call the doctor to schedule a physical and a heart evaluation (to include a blood pressure evaluation, 12-lead EKG (electrocardiogram) and an echocardiogram, AKA echo).  All of that would certainly quell my fear. Right?

My husband suggested that he take the boy to the pediatrician and when we arrived at the cardiologist stage…. THEN I would attend. Only after I gave him several minutes of both verbal and written instruction, I conceded.  The appointment was scheduled for Wednesday.  As I suspected, the pediatrician did not hear anything abnormal when listening to my son’s heart through a stethoscope.  Ain’t that always the way??  This is when my hubby was informed that the pediatrician cannot order an echo. The only way to have an echo is to jump through several hoops that would make any circus clown cringe.  After a quick consult with my husband over the phone, I asked him to jump through those hoops.  So off they went.  Hoop #1: blood work.  Completely expected yet despised by the kid.  Somehow, when a needle is produced within a 10-foot radius, the kid develops super human strength that would rival that of a comic book hero.  Hoop #2: leave the hospital building where the pediatrician’s office is and transport the now ‘jabbed’ and VERY suspicious kid to a different local hospital to be seen by a technician to conduct the 12-lead EKG.

EKG’s are relatively painless with the exception of the removal of the hairs on your arms, legs and chest where the sticky pieces for the electrodes go and are often removed abruptly by the tech  – it’s all good.  Hoop #3: WAIT.  Ugh!  Apparently, the process is to have the EKG done…. Then wait for someone, a Cardiologist hopefully, to read the report, then hopefully said Cardiologist with call the pediatrician and discuss the results.  Most people I know…. Don’t do well with the wait… but that’s where we are. Allegedly, if the EKG is “normal”, which I completely expect it to be…. We do not qualify for an echocardiogram regardless of our willingness to pay for it out of our own pocket.  Of course, I got hot and bothered over that information.  After my husband talked me down from that ledge, I agreed to wait for the results of the EKG and THEN ask/tell the pediatrician we want to have the boy evaluated by a cardiologist… if THAT is what is necessary to get this kid an echo, that I willing to pay out of pocket for.

I don’t understand.  An estimated 20 young, active kids die EVERY day in the U.S. from sudden cardiac death for various reasons. Cardiologists know that you cannot detect a structural defect by listening to the heart or seeing how it behaves in an EKG. Some conditions may be detected that way, but not all.  We also know that electrical issues in the heart that cause irregular heart beat (aka arrhythmias) are incredibly difficult to diagnose. I get the fact that we are tied to the medical insurance rules and regulations.  But I’ve already told you that I will pay for the echocardiogram out of my own purse… So tell me again, WHAT ARE WE WAITING FOR?? Listen, I am all about playing by the rules. The rules are there for a reason.  Respect the rules!  Where I get sideways is when the rules DON’T MAKE SENSE.   There is a FAMILY HISTORY (risk factor) of heart disease. The kid had an “event” (risk factor). I’m willing to bear the costs associated with getting him tested (obstacle)! Let’s do this!

I’m not any different from many of you, my stupendous readers!  I’m a pseudo-normal, funny, passionate, understanding parent until….. you mess with my kids.  Then I become, a finger pointing, voice-raising, head shaking, “Oh no you didn’t”, kinda mom that tends to become terse and very outspoken.  I’ll own that. Don’t. Mess. With. My. Kids.  So… in the meantime, I will do my best to continue jumping through the hoops in order to ensure my kid is ok. I will not rest until I do.  My advice to you? Do NOT take no for an answer.  Think about it this way… NEVER put yourself in a position to say, “I should have___________ but now it’s too late!”  I love ya peeps!! Peace. Out.

Praying for Daylight, article, Part 3 of 3

Just days earlier, we were so thrilled with having a baby – a gift from God. We never dreamed this would be how we would say our final goodbyes to each other. It was about midnight, when the I.C.U. nurse encouraged Randy to go home and get some rest since I was drifting back into oblivion. He drove home – alone. Randy called his parents with the latest news. They have always been unwavering in their faith in God and support of their children.  As Randy was overtaken by the realization of what was happening, he asked his folks to pray.  And pray they did! They called and emailed everyone they knew and asked for prayer.

I came back to my senses around 3 a.m. I watched the clock as the second hand slowly ticked away the night. I prayed. I prayed for Randy and the baby. I thanked God for my life and the privilege of being married to such an awesome man. I thanked Him for the gift of a strong, healthy baby boy.  As I felt myself begin to drift away again, I prayed for daylight to come.  In my stupor, I felt the most warm, brilliant light shine on me as it escaped through the cracks between the timbers of the largest door I’d ever seen.  I knew this was heaven’s entryway.  It appeared to be made of aged craggy wood. I knew I was Home. I waited for that enormous door to open for me to enter. I basked in its warmth. There was a knowing, an understanding, a peace about that place. I was happy. I waited…. And waited… and waited…

After what seemed to be an eternity, I could see something …. a light.  It was different from the warm light that I enjoyed just a moment before. It began to hurt my eyes. I had to squint and blinked several times to try to focus on my surroundings.  I could see glimpses of the sunrise through the blinds. I looked around carefully and realized I was still in my I.C.U. bed – still no change in my condition. 

Randy was relieved to learn I lived through the night.  Later that day, we learned that my heart would either revert back to a normal heart rate within the next few hours or there would be permanent, irreparable damage to the heart muscle and I would perish. Even though I made it through the night, I was handed another death sentence. I was strangely at peace.  Don’t get me wrong. I did not want to leave my precious newborn baby boy and my wonderful husband. But I was ready to step over the threshold I saw the night before.   In the meantime, family, friends, people we don’t even know, and churches from all over the country were praying for us.  A couple hours shy of permanent heart damage and certain death, without any extraneous means, my heart reverted to a normal rhythm (80 beats per minute).  I was not exactly ‘out of the woods’ as they say – but this was a good start.

After about 10 days of being in the hospital for what should have been a 3 day stint, I pleaded to go home.  With hesitation, my doctors released me.  I cried as they wheeled me through the hospital with my 10 day-old son, Hunter, in my arms. I got in the car and cried, “I lived! Thank you, Lord!”

The road has been a long and bumpy one.  When, Hunter was about eight months old, I had accumulated almost four months of intermittent hospital stays and emergency room visits.  It hasn’t been easy. There have been ‘dark’ periods where I felt alone or angry. We wondered each day if I would live to see the next. With faithfulness and prayer, I have.  

 

It’s been 3 years since my stay in the ICU.  It’s also been 3 years since my handsome son, Hunter, was born.  I have undergone five heart surgeries that took us from one end of the country to the other for treatment.  I am not ‘cured’ as they say but I am learning to live with my condition.  I know there is a reason for suffering through this. My family and I have learned so many valuable lessons. Among so many lessons was the necessity and power of prayer.  Prayer does not have to be fancy words – just genuine and sincere. I know in my heart, as imperfect as my heart is, God has something BIG for me.  I handed those “keys” over to Christ a long time ago…. I am thankful to know who is really in the driver’s seat.  I am just along for the glorious ride!

Praying for Daylight article, Part 2 of 3

My husband Randy, an ordained minister and pastor, is a happy sort, always laughing and having fun.  He was raised in a very warm, loving and faith-based environment.  It was that strong faith and confidence in God that kept us on the right path all along. In many ways, I learned from Randy about trusting in God and having that ongoing relationship with Him. It was what I learned from Randy that kept me focused during the next days and months.

I suffered a second Torsades episode and inexplicably survived. The next hours and days are a blur.  The heavy doses of medication took over.  I was in and out of consciousness. I remember very little about that time. A couple things really stick out in my mind. I remember my husband Randy sneaking the baby into my room in ICU so I could see him.  I remember sneaking out of ICU in a wheelchair with my nurse to hide in a supply closet behind the newborn nursery so I could hold the baby for a few fleeting moments.  Other than that, I was void… void of all understanding and emotion because of the medication.   

Hiding in the supply closet...

I was initially diagnosed with Atrial Flutter which is a heart arrhythmia disorder. In laymen’s terms, the top two chambers of my heart do not exactly contract; they flutter and typically beat between 240 – 400 beats per minute. Later, I was also diagnosed with other Atrial Fibrillation.  I remember one evening, the I.C.U. doctor, who was a diminutive man with a kind face and always holding a clip board, told my husband, “there isn’t anymore we can do for her. We will have to wait and see.”  I heard Randy loudly say, as he grabbed the lapels of the doctor’s lab coat, “Yes, there is something we can do.  We can pray!”  The doctor shook his head in sympathetic agreement and patted him on the arm and retreated from the room looking intently at the floor, as if the answers were in the linoleum.

Randy took a long deep breath, staring at the vacant space where the doctor had stood.  He finally turned to me and unsteadily walked toward my ICU bed.  He knelt at my bedside.  His eyes were bloodshot from lack of sleep and bouts of tears. I asked him to pray with me.  As he held my hand, through his tears, he choked through the prayer.  After a moment, I said, “We need to talk.”  Randy was a little surprised, “About what?”

“You need to send the bank (my employer) a death certificate so they can pay on the life insurance policy.”

            “NO!”

“Randy, we need to talk about this.”

            “NO!”

“There is another small life insurance policy in the desk drawer at home.”

            “NO!”

“I want you to sell the house. Make sure my mom is taken care of and move back to Alabama with the baby.  I want you to raise him there with your family.”

            “NO! We’re not talking about this.”

“We have to talk about it.”

            “No, God’s going to heal you.”

“But what if it is my time?”

            “I don’t believe that! God didn’t bring us this far to let it end now!”

“Well, just in case…”

            “NO! We can’t lose you.  The baby needs you… I need you.”

After a few very difficult and tear filled moments, I quietly reminded him, “Just remember what I said.”

Randy left that night unsure if he would ever see me alive again.    To be continued...