Patient Story

Mr. James Danhakl, Stem Cell Patient

I will never forget the moment that my life changed— June 30^th 2009.  I had slept in, and was looking forward to a leisurely stroll down the embarcadero.  As I lowered my feet down to the carpet I felt an odd tingling sensation in the balls of my feet, almost like a low voltage electrical charge.

I had always had robust health.  I spent much of the past 20 years as a Navy fighter pilot and had always taken care of myself.  That summer I had commenced an exercise program that involved weight training, aerobics and power walking 50-60 miles per week.   I had not taken a day off in several weeks.   I decided I would do one last hard day before I granted myself a day of rest.  I lifted weights for 2 hours, rode the bike then power walked a 26 mile marathon.   When I hit the bed that night, I felt a fatigue deeper than anything I had ever experienced. I had just “overdone it”.    I figured it would all be better with a couple of days rest. I was wrong.

Over the course of the next two weeks the tingling feeling changed to numbness and began to creep up my feet.  I felt a loss of coordination in my knees.  I was losing physical strength.  It wasn’t until the 3^rd week, when I began to feel the tingling in my fingertips that I became really concerned.  I realized that whatever was happening was systemic and not just a training injury. I went to my family doctor who referred me to the local neurologist.  It took two weeks before I could get an appointment.   The neurologist diagnosed me with Guillane-Barre Syndrome, (GBS) an acute autoimmune disease that demyelinates the peripheral nervous system.  At least they knew what was wrong with me.  It had a name.  We could treat it.

I was admitted to the hospital and spent the next five days receiving daily infusions of Intravenous Immunoglobin (IV-IG).    While in the hospital I researched GBS.  I was relieved to learn that most people who get hit with this awful disease recover from it.  Although, I also realized that my disease profile was different.  Where GBS strikes within hours and days, hitting its maximum within a week or two – my symptoms had been going on for over a month and were only increasing.  I read that if GBS symptoms persist, the disease can sometimes take on its chronic form – CIDP.   CIDP is more rare, and while usually not fatal, is also a permanent disease, much like multiple sclerosis (MS) where patients go up and down, but over time mostly down.

After I left the hospital, I continued to decline.   By the two-month point I was having difficulty just walking around the house.  I could no longer drive.  I was losing sensation in my arms, hands and torso.  My sense of taste was diminishing; everyday items began to feel heavy.  My world was becoming small.

I cannot begin to describe what it is like to lose so much so fast.  So much of our daily world is experienced by movement and by our senses.   It felt like I was being robbed of my very being. I would go to bed every night, telling myself that I would be better in the morning, but instead it was worse.  I could not sleep this away, pray it away, eat it away or “positive attitude” it away. I was being steamrolled, crushed. I had to find help.

I began to seek out “big league” doctors at major teaching hospitals.  But they had no answers either.  I looked for answers myself. I found a support blog online for GBS and CIDP patients.   Reading these personal accounts was devastating.  Most people over a period of years decline to a point of severe disability. Some die from complications.  All have their lives dramatically altered. There are no cures or even treatments that change the long-term prognosis.

I was beginning to despair when I found a thread titled “Stem Cell Transplant for CIDP”.   The thread chronicled the journey of “Alice” a CIDP suffer and her steadfast determination to undergo a new and possibly game changing experimental treatment for CIDP.  We spoke, and compared notes.  Our disease profiles seemed remarkably similar.  We also shared similar frustrations with the medical world and how little conventional medicine had to offer.  Finally someone who truly understood.   She was undergoing a procedure called autologous stem cell transplantation, (SCT) a process developed at Chicago’s Northwestern University by Dr. Richard Burt. In simple terms this process “reboots” the immune system much like rebooting a computer after it becomes too slow.

The process takes approximately 10 weeks from start to finish, 4 of those weeks in the hospital at Northwestern. From that moment on, I had a singular focus to get to Northwestern and have this procedure.  By this point I was four months into the disease, and had tried steroids, IV-IG and chemotherapy, none of which had any impact or slowed the disease at all.  In fact, my progression was unusually fast.  I was hitting disability wickets in weeks that most people take years to develop.  This decline looked like the rarest and most malignant form of the disease.   My loss of physical control was becoming pronounced.  I spent most of my days in bed.  Getting to the kitchen or bathroom was difficult.  I had a walker, but I would often pass out from just standing.

Regardless, my spirits were up.  My family members were immensely supportive and encouraging.   Despite my worsening condition, I now had hope.  I cannot tell you how important that was to me.  I felt a sense of total optimism about the prospect of a stem cell transplant.   The science behind the transplant was solid and it made logical sense to me. In simple terms, the procedure requires first harvesting a patient’s adult stem cells from his bone marrow and then killing the existing immune system using chemotherapy.  The stem cells are then reintroduced into the body which grows an immune system genetically identical to the one that you were born with, but with none of the memory or bad habits it picked up along the way.  Dr. Burt developed the protocol initially for MS patients, but found the procedure effective against many other autoimmune diseases such as lupus, Crohn’s, systemic sclerosis and thankfully, CIDP.

I was admitted into the clinical trial a month later.   I was in a wheelchair at this point, but in high spirits.  I was receiving IV-IG on a weekly basis to retain enough strength to make it through the procedure.   From the moment I arrived at Northwestern I knew I had made the right choice. I won’t go through all the details of the stem cell transplant.  But I went through the procedure and was taking my first steps within a couple of weeks.  Within six months I had 90% of my function back.   Within a year I had all my function back and today, three and half years out from the transplant I am as strong as ever.  There have been challenges along the way.  I did have significant pain during the first year following the procedure but most of that has thankfully resolved.

Although I have 100 percent of my strength back, I cannot run and cannot walk more than a few miles without taking a break.  But I live a full and complete life.  And from where I came from this is a miracle.   There were some psychological challenges.  When you get hit with a serious illness, it’s as though your body betrays you.  We are all imbued with a confidence in our physicality.  It enables us to function and take risks in life.  That confidence took a major hit, but over time has largely returned.  While I will never forget what happened, I consider myself cured, and that feeling is like being innocent all over again.  The best part about not forgetting is the enormous gratitude you get as a survivor.  Every morning I put my feet on the ground and stand, I am filled with gratitude, for just being able to do that.    I owe my life to Dr. Burt, my wonderful friend Alice who guided me through it, my family and close friends whose love support literally saved my life, and of course God for gracing me with a second chance.  What a lucky man I am.