My Evans Syndrome Battle in 2007

Below is an account of the events which took place in my life from October 2007 through July 2008.  It is the original text of what I documented. This was my first encounter with Evans Syndrome.


On Monday, October 8, 2007 I went home from work feeling weak and chilled.  I stayed home sick on Tuesday and Wednesday.  I was determined to go to work on Thursday but felt too weak after getting ready for work so I stayed home again.  Once again on Friday I attempted to go to work but again I felt  weak and stayed home.

On Saturday, October 13th, I was so weak that I almost collapsed in the shower.  I asked my wife to take me to a med station.  I had been in bed all week so no one had seen me walking around.  When I was in the car my wife noticed that my skin appeared yellow.  She said I looked like a banana.

When I saw the doctor at the med station she immediately sent me to St. Mary’s new Southwest Facility because she said that I “was a very sick man” and she could not treat me at the med station.  The new facility could treat most conditions but does not have beds for inpatients.  I was examined at the new St. Mary’s facility and transported by ambulance to St. Mary’s hospital because they said I could go into cardiac arrest.

At St. Mary’s Hospital, tests showed that my antibodies were killing my red blood cells. This is a condition called hemolytic anemia. My hemoglobin count had dropped to 5.6. Hemoglobin is a protein in red blood cells that transports oxygen from the lungs. Normally, hemoglobin counts range from around 13 to 18. Blood transfusions are typically done when this level reaches 7.

I was given a unit of blood but my antibodies killed it within a few short hours.  A resident doctor used two phrases I will never forget: “You must keep fighting” and “Hang in there”.  I thought the end had come.

I was convinced that I could not live in the present or I would die.  I had to live in the future.  My vision of the future was standing before people telling them how God had saved me.

In order to combat my hemolytic anemia, I was given a steroid – the maximum dosage that my body could tolerate.  The doctors theorized that a virus had attacked my system.  The steroid appeared to be working so I was released from the hospital after six days.

By early November the steroid stopped working and my hemoglobin count started to drop again.  In addition, my platelet count started to plummet.  Platelets are responsible for blood clotting.  A normal platelet count ranges from 150,000 to 400,000.  My lowest platelet count was 4000.

This combination of low platelets and low hemoglobin was finally diagnosed as Evans Syndrome – a rare autoimmune disorder in which the body produces antibodies that destroy the red blood cells, platelets and white blood cells.  It has no known cause.  Once again I thought the end was near.

The rogue antibodies were attaching themselves to my platelets and red blood cells.  The spleen’s function is to cleanse the body of foreign objects.  Thus, since my platelets and red blood cells were covered with these foreign objects, the spleen was grabbing and destroying them.

My hematologist recommended removing my spleen – a “standard” procedure for this type of condition.  I reasoned that since the spleen was healthy and performing its job, I did not want it removed.  In addition, there was only a 60% chance that my platelet and hemoglobin counts would stabilize.  To me, those odds were not good enough for such a radical and irreversible course of action.

A second opinion at the University of Michigan Medical Center was scheduled but I would have to wait until April.  In the meantime, I started my first IVIG treatments at Lacks Cancer Center just before Thanksgiving.  IVIG is a blood product which was nicknamed “liquid gold” by the nurses because it is so expensive.  Its purpose is to temporarily prevent the spleen from destroying blood cells which have been contaminated by foreign objects.  IVIG treatments are given intravenously and typically take about six hours to deliver.

I started going to Lacks Cancer Center on a regular basis for IVIG treatments in order to try to stabilize my platelets.  I started taking a large quantity of steroids again with the hope that my hemoglobin count will respond once again.  Since the hemoglobin response was minimal and removing my spleen was not even a possibility due to my low platelet count, my hematologist suggested starting a chemotherapy treatment.  Such a treatment was typically done as a last resort.  I agreed that this was a course of action I wanted to try.

I soon discovered that every time I went to Lacks Cancer Center or even thought about my situation, my heart would race and I had difficulty breathing.  It was discovered that anxiety was taking a physical toll on my body.  The symptoms were very real but it was all created from my mind.  As a result, I was given an anti-anxiety drug to help me cope.  I called these my “happy pills”.

As I went to Lacks Cancer Center for my IVIG treatment just before Christmas, I had a nosebleed which took quite a while to stop.  My hematologist recommended that I be admitted so I can be monitored and given further IVIG treatments.  While I was admitted, she decided to give me two units of blood in order to boost my red blood cell count.  I was finally released from Lacks at 9:00 pm on December 23rd during a pretty big snowstorm.  My wife said driving home was not much fun that night.  At least I would be home for Christmas.

I started the new year with more IVIG treatments.  In fact, Lacks ran out of IVIG at the end of December so I was sent to Spectrum hospital to continue my treatments until Lacks supply was replenished.  Apparently, IVIG is very tightly controlled by some governing agency.

I was sent to Henry Ford Hospital to see if I could benefit from any ongoing studies of Evans Syndrome.  After a very lengthy interview and going through my medical history, the specialist there recommended that I stop all medication in order to look for a hidden lymphoma.  However, rather than being filled with dread at this suggestion, I was filled with hope. I am not sure why.  My hematologist did not agree with the recommendation but we followed the specialist’s suggested course of action anyway.

After I had been weaned off the steriods I was taking, I asked my hematologist if my body could ever recover on its own.  Her answer was a flat-out “no”.  Rather than being filled with fear and anxiety at her response, this thought immediately went through my mind: “Good. You can’t heal me. My healing will come from God.”  In my mind, it was as if I had spoken these words aloud.  This was my turning point!

In Mark 5:36 Jesus told Jairus to ignore the news he received that his sick daughter had died.  Instead, he told the synagogue ruler, “Don’t be afraid; just believe.”  “Just believe” – that has become my personal motto.

In mid-February Jan Weller, the music director at my former church, found out I was ill and sent me a card and some healing prayers.  I focused my mind on the healing prayers Jan had sent – praying with authority.  This was something new to me.

Jan and I swapped e-mail for a while.  She wanted to come and pray over me but I did not fully grasp the significance of this.  Then on April 21, 2008 Jan and her husband Wayne came to my house.  After explaining my medical situation and a bit of family history, Jan anointed me with oil and everyone prayed over me.  Rather than praying for healing, she mostly prayed to break a generational curse.  During her prayer, Jan said things about my family as I was growing up that she could not have possibly known.  I believe the Holy Spirit was present that evening because it was an awesome, indescribable experience.

I was emboldened after Jan prayed over me and prayed much harder.  I started thanking God for my healing before the numbers confirmed it.  Faith is calling things which are not as though they were.  By June, both my platelets and hemoglobin had climbed into the normal range where they have remained to this day.  My platelet count stabilized and started slowly climbing after Jan prayed over me.  Previously, the numbers were oscillating.  I thought I understood prayer but I didn’t – I have a lot to learn.  Prayer has power beyond our comprehension.

I was recently asked, “What would I tell someone who was looking for hope?”  Hope starts with a vision.  Sometimes, as we walk down life’s path, we may encounter a medical, relational, or financial crisis.  I liken this to falling off the edge of a cliff.  As you are falling, you would naturally reach out for anything which will stop your fall.  You may grab hold of a branch and hold on with every last bit of your strength.  The branch represents your vision for the future.  This is what you hope for.

While you are hanging from the branch, you would naturally call out for help.  You would not stop calling out until help arrives.  This represents praying to God to deliver you from your situation.  Pray to God constantly – day and night without ceasing.

You must also take time to listen for your rescuer.  Is anyone coming?  Are they instructing you to do something?  This is taking time to listen to God’s voice.  This is the hard part!  God may not give you the answer you expect.  In my case, I expected my rescuer to lower me a rope from the top of the cliff.  That is, I expected medical people to find a treatment which would heal me.  But that is not what God had in mind.  Sometimes God may say, “I will grant you your vision, but we are going to do things my way.  If you trust me, let go of the branch.  I will do the rest.”

Finally, after you have been delivered you from your situation, make sure you thank your rescuer.  This is thanking God – both privately and publicly.

Healing Prayer

Heavenly Father I thank you for your living word. You said that your word is life to those who find it and medicine to all their flesh.  Today by the confession, I apply your word to my body by giving voice to it.

You said in Psalm 139:14 that I am fearfully and wonderfully made and that your works are marvelous.  I declare that I was created by you and that I am a marvelous creation.

I speak to sickness and disease today and proclaim that according to Phillipians 2:10 that they must bow down to the mighty name of the Lord Jesus Christ.  Every name in heaven, on earth, and under the earth must bow its knee to Jesus’ name.

Heavenly Father, I thank you that the same spirit that raised Jesus from the dead dwells in me and makes alive my mortal body.

I speak to my immune system and command it to line up with the word of God.  My immune system will destroy sickness and disease in my body and perform its job for this is what God created it to do.

I thank you Father that every cell in my body responds to your word.  Your word permeates my body from the top of my head to the bottom of my feet. I confess that the word of God is being made flesh in me.

Psalm 103:3 declares that you Father, forgave all my iniquities and healed all my diseases.  Father that is your confession and I make it my confession also.  I don’t judge by the sight of my eyes, I judge by your living word.  It is your word that lives in me and brings health and healing to every part of my body.

Heavenly Father, I rejoice at your promise of divine health.  You said it and I believe it!  Today I declare that I will see your promise of healing manifest in my body.

Healing is mine because Jesus paid the price 2000 years ago.  God so loved me that he sent his son to die on the cross so that I could experience life on God’s terms.  His abundant life manifesting in me, making me whole – body, soul, and spirit.

Amen.

Reflections

The following narrative was written by my daughter in 2016.  I discovered it recently and wanted to share her inspirational story.

I took a moment today to reflect on where i was five years ago today. I was in a wheelchair, going through rehab to combat the disorder that paralyzed me. I was going to physical therapy in the morning, high school in the afternoon, and spending my evenings doing homework for both. I was living in our home office like a stranger in my own house because my room was down 13 steps that I couldn’t climb. I needed escorts everywhere I went. I needed extensions and make up tests and equipment and a cocktail of 8 medicines just to keep myself going. 

And so many people thought i wouldn’t be able to do it. They told me I’d never walk again, that i wouldn’t graduate in 2011, let alone walk to get my diploma that very year. They told me i wouldn’t go to college the next year, let alone get my engineering degree four years later. And find a job right out of school. And find the love of my life before 21. And be able to pay my student loans easily.

But do you want to know the thing nobody saw coming? That i would start running races and biking and climbing and dancing. That i would run my first race only fourteen months after paralysis. That i would run further and further every year, each step pounding another “i told you so” into their faces. They didn’t believe it would happen. But I knew. And I told them to their faces five years ago that my God is more powerful than any disorder. They scoffed and handed me a cane.

I handed it back.

© 2017 Camel Larry

Theme by Anders NorénUp ↑