Summer 2012 - Remission
After only three months, in mid June 2012, I attained remission. I was on top of the world. I was alive. I was working. I was on massive amounts of medications, but things were looking up. I didn’t care because I was in remission.
Remission Remission Remission. What a glorious word.
Dr. Asshole decided to begin the taper of the Pred. I was to drop 10mg every two weeks. He warned me that this will be uncomfortable and that I will most likely experience significant pain. But I didn’t care. I wanted off this crap.
I wanted my life back.
I asked him, “Can I eat what I want?”
He replied, “Uh, no. You still have to stay on your diet.”
I asked him, “Can I stop taking the other meds?”
He replied, “No. And most likely, we’ll have to keep you on a small dosage of the Pred, even while in Remission to keep and maintain remission.”
I asked, “Will this bi-lateral flank pain go away eventually?”
He replied, “Probably not. You’ll always have some pain.”
I was confused. When cancer patients go into remission, they don’t have to do the chemo or radiation anymore. Their hair grows back and they can lead a normal life, somewhat. I mean, I know they have to go in periodically for scans to make sure if the cancer is still gone, but they can go on vacation. They can do all their normal activities, like before they got sick. How is this remission, if I can’t go back to my normal activities?
Remission doesn’t mean SHIT to someone suffering from Chronic Kidney Disease. You can’t go to an Asian Buffet. You can’t go on vacation without all your medications, blood glucometer, blood pressure kit, thermometer and eat whatever you want… no, it’s not like that for us.
Remission lasted approximately a month and a half. In early August, I got a stomach virus, became dehydrated and my NEW Primary Care Physician, Dr. Hokey (another well orchestrated nickname), put my ass in the hospital.
Oh… I was so not happy. By the time I got out 3 days later, I was up 20lbs in water retention from the all fluid diet he had me on while I was incarcerated.
When I visited with Dr. Asshole two weeks after my discharge, my levels were back up. He elevated my Pred dosage again – the Sadist. Another two weeks later, my levels continued to go up and it was mid September. He put me on Cyclosporine and Pred and I went out on Short Term Disability in an effort to get this under control. I was under so much pressure. I was in severe pain. My levels were going up and I was worried.
I also read online that someone with my level of Nephrotic Syndrome who goes into remission and relapses within the first six months on Pred stands a greater risk of progressing to ESRD and requiring a kidney transplant within 3 to 5 years.
Again, REMISSION is just a word. It doesn’t really mean anything to someone who has Chronic Kidney Disease. It’s a word that leads you into a false sense of security. It gives you a fake hope that you will one day be normal again. That you will one day feel good again. That you will go one day without thinking about your circumstances, wondering what your prognosis is and whether God is going to call you home.