atypical Hemolytic Uremic Syndrome

Rare. Unusual. Uncommon. 4 in 10 million of the population per year. An estimated 5 people in my state of Washington.

I spent my life trying to blend in. Never wanting to stand out in anyway. In middle school, when my classes started issuing monthly academic awards, I promptly lowered my standard in completing my work as to not stand out amongst my peers. I worked hard at not drawing attention to myself.

In 2001, my world changed, and I became very weird, which caused me to stand out among everyone I know.

I drove myself to the emergency room, certain that I had a bad kidney infection. An hour into my time at the hospital, I learned my kidneys and liver were failing and my blood pressure was through the roof.

The doctor was talking about crazy things like inserting a catheter, starting dialysis, steroids, transfusions. What normal 25-year-old does all that? Get me out of here.

After about 24 hours, my doctor diagnosed  me with HUS (this later changed to aHUS: atypical Hemolytic Uremic Syndrome). I had a special catheter placed in my chest and I began plasmapherisis (removal, treatment, and return of  blood plasma from blood) and dialysis.

New Life

To say this was a scary time is the biggest understatement I can fathom. My body was in a constant trembling state.

That summer was spent at the hospital. Doctors said I would most likely never return to teaching again. Life as I knew it, seemed to be a memory.

I was living a whole new life filled with nurses, doctors, and medications.

Along with fear, I was also dealing with feeling like somehow I had failed myself. What had I done to cause this? And, why couldn’t I fix it?  I was weak and dependent.

Dependent on a freezer bag full of medications for daily blood pressure control. Dependent on tubes in my chest to receive medical treatment. Dependent on blood donations of others to sustain my life. Dependent on doctors and nurses.

Where was God in all of this?

At first, I distanced myself from Him. I remember one dark night, alone in my room, having this very real feeling that God or at least one of His angels was sitting in the corner of my room. He was sad. At the time, I thought He was sad due to my seemingly hopeless situation. I was in a pattern of trying different chemotherapies, receiving plasma exchanges 3-7 times a week, taking high doses of steroids, and watching my lab work virtually go unchanged. God must be as sad and depressed as I was. I was a pitiful sight.

The Lord never performed an overnight miracle in me. I have never had the experience of going to the doctor and hearing him declare, “We can’t explain it, but you are healed!”

He’s kept me close to Him by providing just what I need for the day. You know, “Give us this day, our daily bread…” He gives me enough energy to accomplish His will for the day. He gives me just enough kidney function to stay off dialysis, but not enough to forget my need for Him. He keeps my blood pressure steady, but gives me no way of controlling my blood pressure on my own. The Lord gives me what I need, no more, no less. 

No Overnight Healing

I have thought about the Lord’s sadness during the early years of my illness, when I imagined Him crying along with me. He wasn’t hopeless. He was longing for me to trust Him in my heartache. He was hurting with me, but He knew that I would one day find deep peace in Him, but I wasn’t there yet. He knew that one day, He would make me an overcomer, but for now I was weak. He knew that one day, I’d stop focusing on my illness, and focus on my Healer. 

In John chapter 6, Jesus feeds 5,000 men with only 2 small fish and 5 pieces of bread. No one can deny this miracle. But, as I reread the familiar story, I look for where Jesus says, “Hey, everyone! Watch this! I am about to perform a miracle. Everyone is starving and in need of food. Now abracadabra, (sparks flying) let there be food!” The disciples gasp, “Ooh, aah! Amazing!” No, instead I read, ‘”Jesus said, “Have the people sit down.” There was plenty of grass in that place, and they sat down (about five thousand men were there). Jesus then took the loaves, gave thanks, and distributed to those who were seated as much as they wanted. He did the same with the fish.”‘

 In the 15 years since my diagnosis, I have never experienced a flashy display of healing. Instead, I have experienced the faithful love, guidance, protection, teaching, molding, sanctifying, steady healing of My Savior. I have experienced mere men telling me I will never teach again, I will never be a mom, my kidneys will not last, and I have seen the Lord’s supernatural answer to mere men. You will teach! You will be a mom! Your kidneys will hang in there! And, I have experienced something far greater than physical healing, I have experienced soul healing. 

And, I have seen God’s answer to my problem of being unusual…He says, you are precious in My sight.

Read Part II here: Where Was God in All of This–Part II