Wednesday, May 30, 2012

With All My Heart

Contributed by Joshua Rice

Hello all. My name is Joshua. I’m a 34 yr old that has been battling Evans Syndrome.

My story begins back in 2005. I was working as a millwright in a foundry in Birmingham, Alabama, when I came down with my “problem”. It started like a stomach virus, so naturally I stayed out of work for a couple of days to rehydrate. When I didn’t get better, I decided to go to the Emergency Room for fluids.

When the receptionist called me back for my insurance info, she asked me if my color was usually yellow. I turned yellow as a school bus right in front of her, so they rushed me back and immediately did a CBC, and told me they were keeping me. Over half my blood was gone, and they couldn’t find out why. My wife and I were horrified.

Later, I was moved to a private room and was told I might have bird flu. I was quarantined, and all they would do for me was give me Tylenol for the major temp I was running. While all this chaos was going on, my whole family was called in, and were given no answers.

I ended up staying the night before I was transported to University of Alabama Hospital in Birmingham. It was a Sunday. I don’t remember much but the ambulance ride that day.

Early Monday morning I woke up short of breath. The color of my skin was pale-grey. My blood had hemolyzed to the point I had very little left. My hematocrit (blood volume) was 5. I remember the nurses getting a little blood but before they made it to the lab it would coagulate. They pumped me full of steroids and gave me what they thought was the best match in blood. Needless to say it’s a miracle I’m here today to write this biography. During this time, I felt the Grace of God surrounding me: It was a tangible presence. The next morning, the nurse came in and told me it was good to see me still here. After 5 days of working to get me stable, I was sent home with a diagnosis of hemolytic anemia, not knowing that my life would be forever changed. What I didn’t realize was that hemolytic anemia is not exactly a diagnosis: It is a symptom of a deeper problem.

After a couple of weeks of taking mega doses of steroids, my counts stabilized and became normal. I went back to work. After a month, I was given the option to work in Ohio or quit, so I just quit. My boss at the time was worried I would sue him, I guess.

It wasn’t long after that I found another job here in our town, and for a year I was going strong—all was good. Then I started waking up with nosebleeds. I thought maybe it was just sinusitis. I stayed fatigued and worn out all the time.

Finally, I decided maybe I should see a doctor. He did a CBC that showed my counts were dropping again. Back on the steroids I went, and it helped…But my platelets wouldn’t come up past 70. I still had no definite diagnosis, so I started looking for another doctor.

My new doctor did a bone marrow biopsy but still gave me no diagnosis. I felt like I was just floating along waiting to die for four more years, until 2009, when the steroids completely quit working.

I found another doctor, and had to go through the process all over again. That meant another bone marrow biopsy. This guy told me I had myelofibrosis, a disorder with a prognosis of about 5 years. All I could think of was, “At least I know what I’m facing now.”

In 2009, I slept in the hospital more than I slept in my own bed, and all my doctor would do was pump me full of steroids and transfuse me. Nothing was working, so my family doctor advised me to go to the Mayo Clinic in Minnesota to see Dr. Ayalew Tefferi. I agreed, so my doctor gave me three pints of blood, and told me “Good luck.” To be honest, I didn’t expect to come back.

My wife and I arrived in Rochester, Minnesota, in February. It was COLD! My appointment was at 10am, and we were both anxious. We walked into the clinic and were amazed: The first thing that caught my eye was a grand piano surrounded by women in wheelchairs and wearing do-rags on there heads. They were chemo patients. The pianist started playing a familiar song—Amazing Grace. As I watched the faces of those ladies beam with Glory, tears flowed down my cheeks and hope arose in my spirit. I knew all would be OK. After my wife and I collected ourselves, we went on to my appointment.

We walked into the doctor’s office, and he asked my name and what was going on with me. I described my medical history, and he listened with a concerned look on his face. He told me to get some blood tests and to see him in two days.

The morning after a day of testing, we arrived in Dr. Tefferi’s office hoping to hear any kind of news. He sat me down and told me it wasn’t myelofibrosis at all. I had Evans Syndrome, or I was in the beginning stages of aplastic anemia. We were glad that I would live longer, but we weren’t out of the woods yet.

After our conversation with the doctor, we went out of that office happier than we had been in a long time. We walked across the street to have a smoke. I looked into the heavens and asked God, “What are you doing?” While walking back across the street a green ball of light the size of a volleyball began to dance at my feet, and I knew all would be OK.

That year I was laid off from work and had to draw unemployment.  During that time, my counts dropped once again, and I was infused with a bag of platelets. From that bag of platelets I contracted e coli. It found its way to my back and destroyed half of my L5-S1, and obliterated a disk. I was paralyzed for two months. I am currently disabled.

The point of my story is not to scare or depress anyone. I want to encourage you: Never give up. Never loose hope. There is a light at the end of your tunnel. I had every reason to give up and call it quits, but I didn’t. Many times I wanted to give up and I would…for a while. But then I would find the faith to get back up and fight, and Grace just never, never gave up.

I love you all, and pray that you find comfort and peace in knowing you are not alone.

With all my heart,

Copyright © 2012 by Evans Syndrome Community Network. All rights reserved.