Two Years Later...

My Journey and Testimony...

 

I was trapped in a perfect storm of illness.  On one side, amyloidosis secondary to twenty three years on hemodialysis was eating away my ligaments, tendons, bones, and solid organs.  On the other side, Hepatitis C had ravaged my liver into the initial stages of cirrhosis.  I am reminded of  Job’s lament:  

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For the thing I greatly feared has come upon me.  And what I dreaded has happened to me.  I am not at ease, nor am I quiet; I have no rest, for trouble comes.    Job 3:25-26.

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My journey to this moment began on May 22, 1981.  I had just finished my first year of medical school at Howard University.  I suffered from focal and segmental glomerulosclerosis and my renal function had progressed from 90% to end stage in two short years.  After two days of peritoneal dialysis in the intensive care unit, an arteriovenous fistula was installed in my left arm.  Within two weeks I began hemodialysis at the Veterans Administration Medical Center in Washington D.C.  Three times a week I would report to the dialysis unit for a six hour treatment.  By the time August 1981 rolled around, I was starting my 2nd preclinical year of medical school.  I dialyzed on Monday, Wednesday, and Friday, attended class and laboratory during the day and traveled five or six blocks to the VA for dialysis.  No accommodations to my schedule were made for dialysis, nor did I want any special treatment.

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The clinical years of med school went quickly.  I was nicely acclimated to dialysis.  This is not the case for most dialysis patients.  Many suffer pain, dizziness, muscle cramps, venous access problems, diet problems and depression.  I ate what I wanted, avoiding mostly high potassium foods.  My energy level was good despite the fact that I was severely anemic .  This was before Epogen was available to treat anemia.  I loved the hospital rotations and if I had any free time, I usually went on rounds with Howard University Hospital’s transplant team.  The chief surgeon, would let me tag along and scrub for surgery.  I got to hold a retractor for three hours during a kidney transplant.

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The greatest event of my young life occurred during my first year on dialysis. when I surrendered my heart to the Lord Jesus Christ.  God had placed many special people in my path.  One was a dialysis nurse named Doris Browne.  Mrs. Browne was an evangelist and a servant of God.  She very gently led me to read the Bible and suggested a good Christian radio station.  My heart was hungry to know the truth.  Dialysis had broken down the air of invincibility that comes from being young.  The other person that made a difference was a friend and classmate.  She asked me if I believed in evolution.  I stammered, but could not come up with an intelligent answer.   Her question made me think about God and evolution.  Which did I believe and why?  Who was I?  Why was I here?  What did I have reason to hope for?

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Little did I know, I was about to be body slammed by the Lord.  Like Jacob wrestling with God at Jabbok, I was about to begin my struggle to earn new name.  A name written down in Glory.  The Lord had begun his assault on my heart, when I started regular dialysis treatments for kidney failure.  By pulling back His hand of protection and allowing my kidney ailment to progress, God marked me.  Not unlike the way He marked Jacob by touching him in the hollow of this thigh, God touched my body with dialysis.  Just as Jacob bore a noticeable limp for the rest of his life, so too do I bear the touch of God’s mercy in the needle marks dotting my left arm.

 

After graduation from med school, I took a year off to pursue a kidney transplant.  The workup was a disaster.  I was allergic to the principal drug used in Walter Reed Army Hospital’s transplant program.  It was too late to get into an internship, so I had to sit out the entire year until next July.  I spent a lot of my time reading Scripture and getting to know God.  I also reconnected with a friend from high school, Karen.  She had become a Christian and she invited me to attend her church.  As it turned out, Karen came down with a temporarily crippling condition and  was forced to go on disability.  As a result we were able to spend a lot of time together.  I drove her to doctor appointments, cooked for her and taped her favorite shows.  We really became better friends and unofficially began a courtship which resulted in my proposal of marriage in June of 1985.  Thankfully Karen recovered enough from her illness to return to her career as a Bank Officer.

 

 

Karen and I were married on September 21, 1985.  After our honeymoon in Los Angeles, we made our home in a small condominium in Adelphi, Md.  I was working in the first year of my Pediatric residency at D.C. General Hospital in Washington, D.C.  My on call schedule was every third night.  My dialysis schedule was Monday, Wednesday, and Friday evenings from 4-10:00pm.  Whenever my call schedule fell on a dialysis day, I would switch with a colleague and end up working an every other night call.  Pediatric call is no picnic, especially in a busy city hospital like D.C. General, otherwise known as Dodge City.  We saw everything and no one got any sleep on call.  A typical weekend would start with reporting to work at 8 am on Sunday, work all day, work through Monday till 3:30pm, sign out, drive to the VA for six hours of dialysis, drive home, climb into bed, and then up for work by 8 am on Tuesday.  Needless to say, my new bride saw very little of me for the first two years of our marriage.  When I had some time off, we would eat out or catch a movie.

 

Even in the midst of a medical treatment that throws most people for a loop, God had blessed me with a positive attitude, a willingness to take charge of my condition, a loving wife, a great Pastor, a supportive congregation, and my faithful parents.  I also had a terrific mother-in-law and great career in Pediatrics.  In 1987, God opened the door for Karen and me to have a home hemodialysis machine.  Soon I was sticking 15 gauge catheters into my own arm and together we would hook up to the dialyzer.  This was just what we needed.  Now we could arrange dialysis around my call schedule.  The only requirement was that I had to have three dialysis sessions in seven days time.  We rejoiced. This really made our life more abundant in many ways.

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Years went by quickly.  In 1988 we welcomed our first child, Zachary into the world.  We chose the name Zachary because it means ‘the Lord remembers’.  We waited so long to have a child.  We wondered if our medical conditions made us less fertile.  God in his mercy did remember us and blessed us with a son.  Meanwhile, I finished my Pediatric residency and fourth year as a Chief Resident.  My first job in the real world only lasted six months.  I was working for a struggling HMO and I was laid off after a new office failed to draw patients.  I felt terrible about being let go from my first Pediatric job.  Karen and I prayed that God would open another door and He did.

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After a month of moonlighting, God opened up a position with Patuxent Medical Group in Columbia, Maryland.  By God’s grace the chief of the Pediatric Department was leaving to practice Cardiology full-time.   The Chief, was a big fan of Apple computers and was happy to read on my CV that I also was a Macintosh enthusiast.  I began my Pediatric career with PMG on March 12, 1990.

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In 1994 our daughter Lael was born.  Her name is recorded in the book of Numbers.  It means “of God”.  Karen and I realize that given our history, Lael’s birth could be attributed to nothing else but divine provenance.  My patient load grew with each passing year.  My favorite part of Pediatrics is watching children grow.  I have patients that I have followed from birth to college age.  I now have patients that are old enough to bring their children to see me.  What a blessing.

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Over the next nine years I worked forty hours a week, dialyzed at home eighteen hours a week, and enjoyed my free time with my family.  Sometime in early August of 2003 my life began to spin out of control.  I developed nagging pain in both of my hips, and insomnia due to leg pain and restless legs.  An orthopedic work up revealed cystic lesions in my left hip and my right femoral neck.  X-rays of my shoulders and hands showed deposits of amyloid.  Amyloidosis is caused by a build up of a protein called beta-2 microglobulin was a side effect of long-term dialysis treatment.  Even though dialysis was keeping me alive from day to day, it was also slowly beginning to cripple and eventually kill me.  The only answer was a kidney transplant.

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On August 11, 2003 I began six months of short term disability.  During that time I saw more specialists and endured more medical procedures than in any other time in my life, not counting the current day situation.  In February of 2004 I found out that my longstanding Hepatitis C infection resulted in cirrhosis in my liver.  Now I would need a liver transplant as well as a kidney.  The news was devastating.  Sometimes I would find myself crying in the shower as I called to God for strength.  I remembered the prophet Habakkuk.  He lamented the destruction of the nation of Israel.  The crops failed, the livestock died, and no fruit was found on the vine.  Yet in the midst of sorrow and desolation Habakkuk found hope in the Lord. 

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Yet I will rejoice in the Lord, I will joy in the God of my salvation.  The Lord God is my strength; He will make my feet like deer’s feet, and He will make me walk on my high hills. Hab.3:18-19.  

 

Karen and I have been lifted by the prayers of so many friends, relatives, and acquaintances.  It has made all the difference in our ability to keep moving forward.  At the time, I was working three hours a week in the office.  It was a blessing to see some of my old patients.  I started a 48 week course of interferon, a medicine that hopefully would rid me of Hepatitis C.  Lord willing, I would be ready for transplant.  My younger brother expressed a desire to give me his kidney.  I would need another source for a liver.  Unsure of how it would all work out,  I knew that God was able. 

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So there I was, trapped in the perfect storm of illness.  On one side my liver was slowly failing, it could last six months or six years.  On the other side dialysis kept me going from day to day, while at the same time amyloidosis was quietly eating away my internal organs.  I thought of the apostle Paul who wrote,  “Who shall save me from this body of death?”  Who indeed.  When all is said and done I kept coming back to God’s still small voice.  He spoke to me through His Holy Spirit and comforted me. 

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Through the Lord’s mercies we are not consumed, because His compassions fail not.  They are new every morning: Great is Your faithfulness. "The Lord is my portion" says my soul, “therefore I hope in Him!”   Lamentations 3:22-24.

 

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The Eye of the Storm

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Typically a hurricane has a relatively quiet center, called the eye.  The eye is a still place, a place in limbo.  Here one can find respite from the swirling storm if only for moment.  I found myself in such a place in April of 2004.  I began a course of medicine called Interferon which was designed to kill the Hepatitis C virus in my liver.   Apprehension nagged at me as I contemplated the many possible side effects of the medicine.  I had to an intramuscular injection once a week for fifty weeks.  Even worse was the extremely low potential cure rate.   Usually the Interferon is combined with another drug called Ribavirin which increases the cure rate to 50%.  I was not able to take Ribavirin because it could worsen my severe anemia.  As a medical scientist, I felt that my chance of clearing the infection were slim.  

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To my surprise the first six weeks on the Interferon went very well.  My only side effects were some mild fatigue and itching.  After twelve weeks on the medicine, my lab work showed a good response to the Interferon.  There was no detectable Hepatitis C virus in my system.  However, by August, I suddenly developed double vision! For some reason the muscle in the left eye had become paralyzed and was unable to move to the right.  This caused double vision, two of everything!  Karen and I prayed that this was not a side effect of the medicine, because there was no other medicine to use for the Hepatitis C.  I needed to finish the course of fifty weeks.  We consulted with eye doctors and neurologists and determined that medicine was not the cause of the eye muscle paralysis.  The doctors said that the problem would resolve on its own.  By God’s grace, my eye completely healed by January of 2005.  Later, in April of 2005 I completed fifty weeks of therapy on Interferon.  Now I had to test my blood in July and October of 2005.  Hopefully, the virus would still be negative.

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Waiting is the hardest part.  How will God answer your prayers?  Are you praying in accordance with His will for your life?  Questions run through your mind.  I was reminded of the prophet Isaiah when he wrote,

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You will keep him in perfect peace, whose mind is stayed on You, because he trusts in You.  Trust the Lord forever.   Isaiah. 26:3-4. 

 

In October of 2005 I tested negative for Hepatitis C virus.  Against all odds the medicine had worked and I was cured from a virus that infected my liver for almost 21 years.  Glory to God in the highest!

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In November of 2005 the kidney transplant team at Johns Hopkins Hospital approved my addition to the liver-kidney transplant list.  Now I had to get approval from the Liver team.  Meanwhile I continued to suffer from the ravages of amyloidosis on my joints, bones and muscles.  In order to maintain some flexibility and range of motion in my extremities, I had to stretch at least twice a day.  I went to physical therapy once a week for my hands and large muscle groups and completed specialized exercises for my hands to combat the loss of sensation, strength, and flexibility.

 

 I was reminded of the words of the apostle Paul,

 

For Your sake we are killed all day long; we are accounted as sheep for the slaughter.  Yet in all these things we are more than conquerors through Him who loved us, for I am persuaded that neither death nor life, nor angels nor principalities nor powers, nor things present nor things to come, nor height nor depth, nor any other created thing, shall be able to separate us from the love of God which is in Christ Jesus our Lord.  Romans 8:36-39.

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In 2006 I received some good news from the liver doctor.  Even though I had some mild damage to my liver from the Hepatitis C virus, the chances were good that my liver could function well for years or even decades.  With God’s help my liver might even restore itself completely.  Therefore the liver team decided that I did not need a liver transplant at this time.  I could proceed with a kidney transplant as soon as one became available.  The arthritis caused by the amyloidosis was so severe that I was unable to work since 2004.  Thanks to God we were able to get by on my long term disability payments.

 

My brother returned from a tour of duty in Afghanistan in the Spring of 2006. and was ready to start the evaluation process in order to donate his kidney.  The process included blood work, X-rays, and interviews with the transplant team.  By January of 2007 the results were in and my brother was approved as good donor.  I was so excited to hear the good news that finally a transplant was in sight.  The surgery date was set for March 19, 2007. 

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On March 19, 2007 my entire world changed as my family assembled at the hospital for transplant surgery.  The waiting area brimmed with relatives and friends.  My brother and I were stretched out on two separate gurneys prepped and ready to go.  They came for him first in order to remove his kidney and ready it for transplantation.  I waved and smiled at him as they wheeled him from the holding area.  I’ve always been so proud of my brother John.  As a little brother he broke all of my toys and followed me around, but here in that moment he was saving my life!

 

After an hour or so it was my turn.  Quick kisses and prayers sent me down the hall to the Operating room.  I remember the sea of people, bustling machines, lights, being strapped onto the surgical table; then the face mask followed by a slow countdown from 100..99…98…97..

 

The soft voice of the anesthesiologist gently roused me back from the long sleep.  The Nurse said I did well.  They propped me up in the bed and headed for the recovery room. We pushed through some big doors into a corridor and as we turned I caught a glimpse of my family in the waiting room window.  They were laughing, crying, clapping and smiling.  I waved back and smiled.  Later I asked my wife about their reaction to seeing me in that moment.  She said that my smile was beaming and my face glowed like a halo. That was the first day of my life with transplant. 

 

All praise to God the father, who in the completeness of His own time brings each of us not to the desire of our hearts, but to the fulfillment of His will and glory. 

So teach us to number our days, that we may gain a heart of wisdom. Psalm 90:12

 

Thanks for reading my story.,

Butch