The beginning of August marks an anniversary for me. For the first time in 12 years, I’ve gone an entire year without being admitted to a hospital.
I have chronic lymphedema. It’s a condition where lymph fluid doesn’t properly circulate in the body and can pool in legs, arms and elsewhere. Those limbs can swell and are susceptible to infections such as cellulitis, a painful inflammatory skin infection. It is not contagious. And while lymphedema itself is not fatal, infections arising from it can be. There’s no cure but the condition can be managed.
In the United States, lymphedema is usually a complication of cancer surgery or other surgeries. I’ve never had surgery. A parasite in other parts of the world can cause it, but I hadn’t been outside the country until long after I developed lymphedema. I’ve seen too many doctors to count and they don’t know. For me, I believe it’s a combination of heredity, sustained injuries to my system years ago and obesity.
I have Stage III lymphedema, which is the worst kind. Despite a regimen that included exercises, bed rest and compression, I had regular infections. Some started with mild flu-like symptoms and other times it hit me like a freight train, with my left leg feeling like a python was squeezing it at the same time it was being overinflated.
In October 2003, I got sick the day before I was to drive my brothers down to San Diego for our father’s funeral. My doc advised me to go into the hospital, but I couldn’t miss my dad’s funeral. So she gave me antibiotics and I drove in terrible pain, while concealing it from my family. We Wades are stubborn like that.
At its worst, I was getting sick every five weeks.
Nine years later, in October 2012, I had one of the worst complications of cellulitis: blood poisoning, or sepsis. I was admitted to the Intensive Care Unit (for the second time). Up until that point, I’d always downplayed my hospital admissions to my brothers because I didn’t want them to worry. Afterward, I decided to be open about it with them.
I had to face the fact that my old nemesis staphylococcus aureus may eventually kill me.
A hospital stay early last year found me in an isolation room. Seeing staff suit up in masks, gowns and gloves to interact with me reminded me of the final days of my mom’s life, when I had to don those same precautions to see her as she battled methicillin-resistant staphylococcus aureus. Fortunately, I tested negative for anything contagious. But when you’re immune-compromised like me, you can be a sitting duck for pathogens that ride along my usual infections.
I pleaded with doctors for a year to go on a regimen that I thought could work to keep me out of the hospital. They disagreed. My friend Pam, who has a medical background, gave me advice on how to convince my doctors to try my idea. It worked. We compromised: I tried their ideas and they tried mine. Part of it was joining Weight Watchers and since May of last year I’ve lost more than 150 pounds. With an assist from a great cardiologist and an infectious disease specialist, Dr. Vinod Trivedi, we put together a supplement and medication combination that has me feeling better than I have in years.
While I still get sick sometimes, it’s far less frequent and it’s manageable without going in the hospital.
My girlfriend Cathi, who has stood by me through all this, didn’t want me to write this column for fear of jinxing myself. But that’s OK. I’m savoring life one day at a time. Peace.
Kelvin Wade, a former Fairfield resident, is the author of “Morsels” Vols. I and II and lives in Sacramento. Email him at [email protected]