Only two weeks after my SCI, I was loaded into an ambulance for a 200-mile ride from central California to a rehab hospital in the L.A. area. For the trip, nurses and doctors wanted me to drink plenty of fluids. They gave me a few cans of orange and grapefruit juice. When I arrived at the hospital, the nurse promptly took my last can away and told me it was one of the worst beverages I could drink, then educated me about something I’d never heard of — neurogenic bladder.
Fast forward at warp speed to more than 50 years later. A new primary care doctor concerned about my sodium level told me to drink less water — the opposite of what I had learned was best for bladder and kidneys. I was also taking a diuretic prescribed for high blood pressure and coronary artery disease that had the beneficial side effect of reducing edema in my legs, which were prone to swelling and pressure sores. He wanted me to stop taking the medicine along with drinking less water. He was so consumed with my low sodium level that he was willing to gamble with possibly raising my blood pressure and increasing my risk for lower extremity wounds. But who was he to gamble with my life?
Later that same doctor prescribed a pain medication that is contraindicated if you are taking an anti-clotting med called clopidigrel (Plavix), which is also critical to my coronary artery disease management. I told him an open wound I have might bleed excessively if I take it. I even sent him the study indicating that both the pain med and clopidigrel had an anti-clotting effect and taking both simultaneously is contraindicated. He said he didn’t think it would be a problem at the dosages I would take. So I took it — and the amount of bleeding shocked me. I stopped taking it. He said give it another try. I refused. I’m still in pain, but I think I’m doing the right thing — trying another way to control it.
Now I’m fighting a different wound that looks strange and not showing signs of healing. The Nurse Practitioner at a local wound clinic has diagnosed it as pyoderma gangrenosum, a rare autoimmune condition, but the doctor who runs the clinic, who seldom sees me, is telling me it is not PG. My home health nurses, who take orders from the clinic, are confused and frustrated. The two diagnoses require different treatment.