It’s nighttime at Saint Mary’s hospital in the early morning hours of January 23, 2019. Everything is quiet inside my room as the polar vortex swirls outside my window on the 6th floor of Domitilla building room 292. I’m in the old part of the hospital, so peering out my windowpanes, I feel like I could be living in the late 19th century. I can’t even see Caribou Coffee or Canadian Honker on the street six stories below me because of poor visibility. I imagine the street would have few businesses in 1890 since we are far from downtown by 1800s standards.
“Saint Mary’s Campus is 10 blocks west of downtown Rochester. Rich in history, Saint Mary’s began in 1889 as a joint project between the Sisters of Saint Francis and the Mayo brothers and their father. It has grown over the years and now has 1,265 beds and 70 operating rooms. It is one of two Mayo Clinic hospitals in Rochester.” (Credit
Mayoclinic.org)
The dark wood window panels are original to this beautiful building, and I can imagine one of the first patients looking out such a window in this hospital on a Minnesota winter night. But if I were living then, I’d be dead. My disease wasn’t even known at the time this building was erected. Effective treatment was only discovered in the past 20 years.
My disease was first described by an American pathologist Ernest Goodpastures of Vanderbilt University in 1919. Anti-GBM disease as it’s known today, was originally named Goodpastures Syndrome (GPS) in honor of this doctor.
“GPS is caused by abnormal plasma cell production of anti-GBM antibodies. The major target of these abnormal antibodies is the non-collagen domain of the alpha-3 chain of type 4 collagen, which is mostly found in the basal membranes of glomerular (kidneys) and alveolar capillaries (lungs), explaining the obscurely specific symptoms of this condition. These antibodies bind their reactive epitopes (the part of an antigen molecule to which an antibody attaches itself) to the basement membranes and activate the complement cascade, leading to the death of the tagged cells”.
I was admitted to Saint Mary’s just 15 days ago. Today I finished my 14th day of plasmapheresis--my doctors abbreviate to PLEX (plasma exchange). The purpose of this treatment is to eliminate this disease from my body. The machine separates red blood cells from plasma. My plasma is almost completely removed and replaced with a “pasteurized” human plasma that is clean and free of the problematic “overachieving” antibodies that are rampant within me. This gives my kidneys a break from the barrage of the damaging misguided autoimmune response which is anti-GMB disease. I get this treatment every day so gradually the antibodies give up. I also take high doses of prednisone to suppress my immune system, slowing down and hopefully stopping the production of antibodies. My red blood cells go back into my body with the new plasma and the entire exchange takes about 75-90 minutes.
Today was originally supposed to be the last day of this treatment, but it’s been extended because my anti-GBM titer numbers only moved down to 4.0. I started at 8.1. This number quantifies the number of antibodies that are attacking my kidneys. The target is to be below 1.0 to be cured because anything below 1.0 is undetectable to the body. Today is a non-existent milestone day. No celebrations, no we’ve beat it! Just more of the same. I’m hitting a low that mimics the swirling vortex outside my window. The room is dry and sterile. I can only sleep with the aid of drugs. I look forward to my nighttime cocktail, but it doesn’t take me through to morning. I always wake around 2am. I look at the clock and it reads 2:37am. I’m alone with my thoughts and my mind goes to dark places. I try not to cry, but tears flow anyway. It doesn’t feel good. My body is uncomfortable from the extra 40 pounds of water weight I’m floating in. I can’t move easily, so nurses carefully help me position 5-6 pillows around my body. My legs get elevated on pillows, my back gets supported on one side, yet it’s still hard to get comfortable.
I’ve learned a trick that is brilliant. Because I hold so much stress in my facial muscles, I consciously let all the muscles go soft. I open my mouth, close my eyes, breath as deeply as possible, and I feel my entire body relaxing. It is only then I can fall asleep. But in the minutes before sleep comes, I’m alone with my thoughts and feeling physical and emotional pain. That is when my greatest comfort is the ability to give up control, and trust in my God. My only other companion is only the sound of my monitors humming and quietly recording my pulse, oxygen, and other vitals. I’m just trying to get through moments right now. I let go and let God do the heavy lifting so I can lay back and just drift to sleep. I don’t have strength to worry about the things I can’t control. I lean into my faith in God, and it delivers me many gifts: The gift of patience so I can just slow my thoughts down to one step, one moment at a time; the gift of others who care for me in compassionate ways, strengthening my connection to others and my faith in humanity; the gift of perspective that is hard to find when dealing with life and death; the gift of hope and joy that moves beyond my own life into something bigger—spiritual, away from my present situation. I am thankful for all these gifts.
Many years ago, I ran a marathon. The training I embarked upon during that time taught me a whole lot more than physical conditioning—it taught me about mental toughness, and how to keep going even when I felt like giving up. I learned how to create tapes (it was in the 90s we still had those then) with my mind running through the loop of the video where I kept crossing the finish line. When I finally did hit 26.2 miles, that experience was better than I could have ever imagined. The lessons I learned kept giving back to me throughout my life, perhaps preparing me for this biggest “marathon” of my life today.
