It was the best of times; it was…Oh, cut the B.S…. My life had become H.S. It stunk, and, according to others, so did I. That was the problem. Other people were blaming my PCA for not doing a good enough job with my bathing. I called in a “Public Nose,” my case manager. We’ll call him “Tuesday” (because he does not work Mondays). (By the way, names have been changed to protect the innocent…and me too!) You can call me Ashley.

So, Tuesday came to my apartment and sniffed around. He talked to me about my medical conditions and then suggested that the problem was not hygiene, but medical. He told me that his daughter, Eve, who is a vegetarian, could smell a meat eater whenever one got onto a bus in Kyoto (while Eve was an exchange student in Japan). Tuesday wondered whether my weak kidney had gone over to the dark side. He had a theory that the other kidney, we’ll call it “Luke Warmwater,” was not able to keep up with the proteins that my damaged kidney was spilling into my bloodstream. He speculated that the smell was the proteins being excreted through my pores as sweat.

If you look in the dictionary under “Guinea Pig,” you’ll find my picture. I’ve had more surgeries than years in my life. Let’s just say that I’m 39+ years old. Because of how I was treated by doctors and hospitals as a child, I was reluctant to have any surgery. Tuesday pushed me to follow up on his hunch. I met with a urologist.

Eventually, I was convinced that I needed the surgery, but then there were problems of communication between the urologist and another surgeon who would do some other procedures. Months went by. The doctor’s office said they would get back to me to set up the surgical date, but they did not. When the doctor’s office was not responding to my calls, Tuesday called and told them that they had better get the surgery scheduled soon or my health insurance would run out.

Now, it gets serious. I had been able to start a job so that my insurance (Medical Assistance for Employed Persons with Disabilities or MA-EPD) would cover me. I thought that I would be able to be back to work in about a month. Can you say “Murphy’s Law?”

My cousin Levi (he’s the one with good genes), my home care nurse Ivory, and Tuesday waited as several hours passed beyond when the surgery was supposed to be completed. Finally, the surgeon came to tell them that the procedures were complete. The surgeon told them that everything that could have gone wrong had gone wrong. Mostly, Darth, the bad kidney, had disintegrated in the surgeon’s hands as he was removing it from my abdominal cavity. Being a bag of pus, it spread infection all over my intestines. The doctors had cleaned the abdominal cavity as best they could and had put an antibiotic solution all over the cavity. They also gave me more antibiotics through a tube.

I was not alert for many days afterward. They put me on a ventilator. I began getting kidney dialysis because “Luke” was not able to filter all of the poisons out of my system. My brother flew in from the Southwest.

I had not given my doctors an advanced directive (living will). Does the name Terri Schiavo strike you as familiar? Who would make the decisions regarding my treatment? Who would decide what “quality of life” would be acceptable to me? Who would decide whether to accept a lower quality of life or to “go for broke” with a procedure which was more likely to kill me, but had a 5% chance of getting me back to a reasonable life (in my opinion)?

Luckily, I became alert enough one day for my family and I to decide that my cousin Levi, who lives in the Twin Cities, would be my guardian angel. We drafted a living will and I granted durable power of attorney to my cousin so that he could protect my medical and financial interests until I recovered.

Levi and I had become very close as children. I treated him with respect and he would respectfully ask anyone, who was harassing the young woman in the wheelchair, to quit. Did I mention that Levi was 6 feet 3 inches when he was in junior high school?

Levi is now asking the doctors and nurses to explain everything that they are going to be doing to me (especially any new procedure). If I resist approving the treatment, they are to explain the treatment and the need for the treatment to him and he will take the time to explain the need to me.

I still cannot talk because of the ventilator and the tracheotomy (breathing hole in my neck through which the ventilator is attached), but “Luke,” my good kidney, has begun functioning again. I no longer need dialysis.

We are working on weaning me off the ventilator so that I can go home. I have been in the hospital for 90 days. If I had not established the power of attorney and the advanced medical directive, who would have authorized the follow-up surgery that has saved my life and has given me a chance to go home and to return to work? Levi is my hero!

I have been given an extended life term. I am working hard toward getting home. Hopefully, my insurance will remain in place until I can do so and can get back to work. (as told to Jai Byrd by Ashley and Levi)