On 2/28 I went to Chicago to meet Dr. Richard Burt for the first time. I was so sick. A cold had taken me out completely – a cold that I still suffered from at the time of this writing. A cold is a simple enough sickness for most, but with MS all illnesses seem amplified. Coughing, congestion, headache and fatigue – add to that worsening balance and even more trouble walking. I was trying to save all of my PTO at work for my transplant, but on 2/27 I couldn’t get out of bed and I had to burn 8 PTO hours.
My wife, Erin, had arranged the details of my flight to Chicago to include wheelchair rides through the airport process and although assisted walking and wheelchairs hurt my pride, I never would have been able to make it otherwise. The trip up to Chicago was smooth and I arrived at my hotel by 11am CST. I checked in early and went right to bed. My appointment for the day was an MRI that night at 6:30pm and I intended to be rested and ready.
Sleep in a new environment is normally troublesome for me and I usually don’t really sleep in most hotels until night 2 or 3. But today I was exhausted and fell right to sleep until time for an early dinner.
I did a practice trip to Northwestern Memorial’s imaging lab to make sure I knew where it was and I retreated to a coffee shop for caffeine and a snack. I sat near some other tribe members that were loudly talking about synagogue and I thought about the recent uptick of anti-Semitic rhetoric on the news. I don’t know that I would be so brave.
After text conversations with my wife, son (Eli), and sister (Vicki), I went up to the imaging lab for my MRI. The folks there were so nice – explaining the process for the night and giving me some paperwork to fill out. Once I paid my $300 co-pay, they escorted me to the back where I changed my clothes and got my IV.
Once in the MRI room, the technician loaded me into the machine complete with the dreaded head cage for the test. I have had multiple MRI’s every year since my diagnosis, but this was the smoothest yet. The technician walked me through each step of the study as if I never had one before and it really answered the questions I’d had about these tests all along. “Is this machine constantly taking pictures or only when it’s making noise?” and “how much longer?” – among others. This experience started to make me wonder about the quality of service I’d been receiving in Florida this whole time – maybe it’s true what people up north say about my home state.
With CDs from the MRI in hand, I went to see Dr. Burt the next day. I was so nervous and excited. I was all bundled from the weather, but the moment I stepped into the hospital I was sweating like a beast. I made it up to the floor where I was to meet Dr. Burt and his nurse Rachel and took my place in the waiting room. My nagging cold and cough still were there and I began having a huge coughing fit. I couldn’t stop. It was terrible. I mean, here I am in the middle of the one of the best hospitals in the country sitting in there immunology department coughing up a storm – I felt like people were running for cover all around me. My stress was through the roof. I began popping cough drops like a crazy person until my entire mouth and throat were completely numb. With that handled, I was suddenly called back to have my vitals done. Sweaty, stressed and sick, my blood pressure was through the roof.
Finally came the time to meet Dr. Burt and I was placed in an exam room. I waited. I really had to pee and I was going back and forth in my mind if I should go or not. I didn’t want to miss my chance to meet the man I had traveled 700 miles to see. Finally, I gave in and found a restroom. Of course, Dr. Burt and Rachel came to the exam room while I was gone and in the time since they saw I was gone, Dr. Burt had moved on to something else. Ugh! Crap! Another nurse saw the look of panic on my face and calmed me down. “They’ll be back, honey”.
Rachel was first into the office and said hello – Dr. Burt was 5 seconds behind. There he was! The guy from all the YouTube videos and news reports – the guy giving talks all over the world about his work. It was like seeing a celebrity. He wasn’t rushed, but his vibe let me know that he didn’t have time for bullshit or whining. We ran through my MS history in record time – rapid fire questions one right after another. I was impressed that I remembered everything. Then he had me walk so he could observe me. He saw my limp and my foot drag. Then he had walk one foot in front of the other like in a roadside sobriety test and he had to catch me to keep me from falling. “That’s not happening”, he said. At that point he sat me down and said that I was a perfect candidate for this procedure, that I would benefit for it and that if I was willing to accept the .05% chance of death I was in! Yeah, baby!