Surprise. It Might Have Been the Flu or Parkinson’s but It Wasn’t

Saturday began with my usual dialysis routine. About an hour into my four-hour session, I started feeling “different." During that normally boring time, my blood pressure dropped, and I began to hurt all over. My experience with Parkinson’s has been that any stress causes my symptoms to worsen, but severe pain isn’t one of my normal symptoms. As my speech and the pain worsened, the dialysis nurse suggested calling 911. I have had way too much experience with ERs and argued that I could tough out another half hour, and it was probably just the Flu. In retrospect, not my best decision.

Two technicians helped get me into the car, and Judy drove off for one of our usual lunch stops. I couldn’t say where I hurt and couldn’t hold my cup of chili. Judy drove home, and I was even less responsive, offering no help in getting out of the car, and was running a temperature of 99.9.

I thought I was going to die

I have no real memory of the next few hours. Judy drove to the ER, and the guard took one look and rolled me to the front of the line. The ER staff quickly assessed me, did a quick blood test, and diagnosed me with Sepsis/ Septic Shock. Sepsis is a bacterial infection of the blood that can often be fatal and is very fast and aggressive. At that time, my lactate was 5.5, which has a survival rate of less than 50%. Luckily, the ER already had the right strong antibiotics on hand. They said later that I came within ten to twenty minutes of organ shutdown and death.

When I awoke, I noticed an ER nurse sitting in the room. At that point, I realized that there was something serious going on as nurses in the ER seldom sit with a patient. He stayed until I was stable and had a Central Line installed and was released to the ICU. I spent the next four days in the ICU.

Parkinson's kicks in

Parkinson’s decided to take advantage of all the stress, and my tremors were back with a passion, along with major digestive tract issues. My speech regressed to the point where I was difficult to understand. My medications/dosages, etc., are registered with this hospital system, and the staff has been good about giving me my Parkinson’s medications on time, with some pushing/ supervision from my wife. Then a typical hospital thing occurred. Someone in the chain of the hospital pharmacy and doctors decided to take me off Ropinerol cold turkey and didn’t tell us. Many Parkinson’s patients take Ropinerol for restless leg syndrome and leg twitches. The confusion was over two letters: ER (extended release).

The pharmacist had regular but no extended-release, and decided not to send up the regular to the hospital. No one said anything to us. Ropinerol is an addictive drug, and one can suffer withdrawal symptoms. I started having monoclonal spasms for five or six hours each night while the nursing staff and my wife argued with the night on-call doctors. I was exhausted and sore. Finally, my wife called my daughter around midnight, and my daughter drove over to our house to pick up my Ropinerol ER and delivered the bottle to my wife. The staff insisted on sending it down to their pharmacy for approval. Judy gave me a pill first, and the bottle was sent to the pharmacist for approval.

I was finally dismissed and went home feeling I’d dodged a bullet or perhaps two.

Notes and lessons learned