Patient Stories

Tom’s Story

94 days.

I had gone 36 years since I last spent the night in the hospital. That all changed in 2015.

I had been infused about a 100 times since 2013 at the Mayo Clinic. But, I just wasn’t right. Shooting a basketball on Christmas Day 2014 I lost my balance and fell to the ground. From that day on — 2015 is a year to forget.

Selling my business, my mom passing away, our only child Megan, getting married, my dad dying — I all thought was stress–making me worse.  But, the IVIG was just not working anymore.

By summer I was just getting weaker. I now couldn’t walk. I received five days of Plasmapheresis the week before the wedding. On Friday some dear family friends picked me up in Jacksonville and drove me to Asheville for our daughter’s wedding the next day. There, I met my wife and daughter and family for the Friday evening Rehearsal Dinner. I had no appetite. It all starts to get foggy from here.

My brother in law drove me to get a haircut and shave at a old time barber shop in Asheville on Saturday morning.

At the Catholic Church in Asheville I attached my leg braces, got out of the wheelchair and grabbed the walker. As the doors opened … my daughter looked like a shining light. She grabbed my arm.

“No tears!”

She nodded.

I said “If I go down — let go or your going down with me.”

“I’m good dad!!”

Off we went. It was a beautiful wedding.

One week later I checked into Johns Hopkins. IVIG didn’t work. Plasma didn’t work. I just kept getting worse. My doctor, David Cornblath, gave me Rituximab.

Pneumonia, pneumonia again. Chest tube right side, chest tube left side. One feed tube. Two feed tubes. Ventilator. Bed sore.

Horrible ICU delirium. Day after day….

By mid November…I had turned the corner. On the 94th day in JHH I was released to rehab at 108 pounds. At 6’3″ I was skin and bones.

Over six months I received 6 treatments of Rituximab.

By the fall of 2016 I no longer use a  wheelchair, walker, braces or a cane. I can’t run but I can bike. I walk 2-5 miles a day.

I can’t thank God enough.

Or my family and friends for all I put them through. Or the folks that looked after me.

I pray for anyone going through this terrifying experience.