The Diagnosis
I was discharged from the hospital. My hubby, Terry and I went home and waited. Waited for the 28th and the results of my kidney biopsy. Waiting to find out what my odds are because at this point, I knew it was something really serious.
Ironically, while waiting at home for the diagnosis, my Endocrine appointment was scheduled for March 26, 2012. I thought, well heck, I might as well go. Never can tell. Well, it was a complete waste of time and a $50 copay. Basically she told me that she would need to wait to see what the results of the biopsy was herself. She rescheduled me for early in April and sent me home.
Finally, the 28th arrived. We got there early. Like it would make a difference. Haha. Dr. Asshole came in and leaned against the counter. He had a small packet of information with him. One was my result. He gave me a copy and I started to read, but I didn’t know what I was looking at.
He started off with, “You have Nephrotic Syndrome. It’s when your kidney’s spill massive amounts of protein out into your urine, This same protein is also pooling in your interstitial tissues causing your swelling symptoms. The disease causing this is called Primary FSGS.” I gave him my sweetest, ‘what the hell is that,’ look. Had he been speaking Russian, I would have had a better chance of understanding what he was saying to me.
I glanced at Terry. Nothing. Not a clue.
Dr. Asshole kept going, “It’s incurable. And you have three options. Remission, Dialysis, and/or Transplant.”
All I heard after that was blah blah blah blah. I felt like I was in a Peanuts cartoon when the school teacher is talking to the class. It was all gibberish.
He finished by saying that the Primary portion of the disease meant that I didn’t have another disease causing the FSGS, like diabetes or lupus or cancer. Primary FSGS is harder to treat than the other because they don’t know what causes it. If I had had Secondary FSGS then he would treat the root cause, the actual disease that caused the FSGS in hopes of eliminating it. Lucky me. Always have to be original.
The word REMISSION got stuck in my head though. Remission is good. How do we get there? So I asked, “What is the treatment?”
He continued by saying that there were several treatments but one, prednisone was most effective and he wanted to start with that. Prednisone, of course has side effects. Great. Doesn’t everything? I’d actually taken Pred before with my lung and I was somewhat familiar with the side effects.
“I want to start you off on 60mg daily.” Holy crap. I’d never taken that much before. That’s a lot of steroids. “And I want to see you back in three weeks.”
I nodded. It was all I could do. Terry looked shell shocked. I was actually more worried about him than myself at that point. He was pale, his eyes were wide, and his mouth hung half open. OMG
Before we left, Dr. Asshole really reassured us by saying that my condition is rare. I don’t fit the demographic for having this disease especially with no prior family history or previous kidney issues. And because this condition is unusual, doctors don’t really have a sure fire way of treating it. And he passed me a handout that he printed off the internet about my disease.
We left the doctors office in silence.
Again, I wanted to get home with my little printed handout so I could power up the computer and do some surfing. At least this time, I had a name to my condition. Now I wanted to find my prognosis.