Having no MS autoimmune attack on my nerves anymore has already unlocked my legs well enough to walk around a bit. Oh sweet mobility! Also, for the first time in I don't know how long, I am feeling my "core" abdomen muscles activate when I walk. MS had taken out my core muscle control years ago. I'm absolutely startled to feel these results so quickly. It seems too good to be true, but Dr. Burt says he's often seen this happen.
But the stem cells will still take time to engraft. Until then, I sit in this hospital room with no immune system. Biosecurity is infused antibiotics, oral antiviral/antifungals and a team of highly-trained nurses with certification designations well-beyond their "RN." I've always got a pressurized flow of HEPA-filtered presurized air at my back that goes out the door away from me. All this boosts my confidence in Dr. Burt's data that show the risk of death from this procedure, at this place, is less than 1%. Not the 20% my now-fired neurologist told me.
I'm actually allowed to get up and walk out my door into the general chemo ward. I could visit the six other Dr. Burt patients who are currently here. I don't. One patient found me online and asked for my room number for a visit. Good Lord.
Yesterday a young enthusiastic woman with a stack of activity flyers entered my room. And a teenage hospital volunteer has bounced through my door asking how she can help. To me, right now, those little helpers are potential angels of death.
If you follow the news at all, you've read about new strains of antibiotic-resistant bacteria. There's a resistant strain of CRE in a different Chicago hospital right now. It could be here and nobody knows it yet. With bacteria, new resistance can pop up at anytime, anywhere. MRSA is another one of the resistant devils the nurses here at Northwestern are on alert about. Their cleaning protocols are designed to prevent those bugs from getting a foothold. They watch my body temperature closely for signs of fever that might indicate a need to switch antibiotics. There are backup options of other antibiotics to switch to. I'm covered.
Maybe I am a little germaphobic paranoid because I fear death right now just as it's looking like I'm beating MS and getting my life back. But mostly I'm afraid of being the guy who screws everything up for the many future thousands of patients who stand to benefit from Dr. Burt's work.
Every day, Dr. Burt makes his rounds as a physician and visits me. With his pleasant bedside manner, it would be easy to forget that he is one of the world's most important academic medical researchers.
We chat briefly. I'm bleary from chemo, my brain is a bit shell-shot by my recent MS attacks. Although I try to put on a reporter hat and ask intelligent questions, I'm no medical reporter. Dr. Burt's answers are always interesting. I'm not going to repeat them here. He does not want me to. He's a true academic and no media hound.
It has been a long journey getting myself into this program as a patient. I'm much better to the HSCT cause as a patient success story than as a would-be reporter trying to get a "scoop."
Dr. Burt began all this 30 years ago in animal studies. His dedication has finally taken the research to a point where it is starting to help people. This is big stuff. I'm so lucky to be part of it.
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