So, once the leukemia treatments wrapped up in the spring of 2010, my creatinine number was still too high. I started seeing Dr. Frock monthly, with each visit showing the same thing. My kidney function was around 15%, and it wasn't getting better.
I was getting shots of Aranesp to help get my red blood count back up, but clearly my kidneys weren't helping with this. Another kidney biopsy revealed that something else was happening with my kidneys. I had Berger's disease, also known as IGA nephropathy. According to the pathologist that read this biopsy, I probably had this going on for 20-25 years.
Dr. Frock mentioned IGA prior to the beginning of my leukemia treatment. To his credit, he did a good job of discussing my situation with Dr. Tarantolo, so both doctors were in the loop on what I was getting for treatment. Dr. Frock was hoping that the leukemia was driving my issues, so we didn't focus too much on the IGA. At least not until after the treatments were finished.
Once it became clearer that I had the double whammy bonus of two things wrong with me, I heard the dreaded D-word. It was time to start thinking about dialysis. My heart sank when Dr. Frock mentioned this for the first time. Dialysis sounded like a death sentence to me at the time. I was too young, and in too good of shape to need dialysis. The stubborn part of my nature dismissed the need for dialysis. I was sure that my kidneys were just slow to respond to the leukemia treatments.
Again, Dr. Frock was patient with my stubborn ways, and agreed to hold off on pushing the dialysis. In the meantime, I started to make some changes in my diet. Treatment, while easy enough not to disrupt too much of my regular routine, did slow me down when it came to my exercise. The decadron I got each time also made me eat like I was going to the electric chair! So, when I got home from treatments each Friday afternoon, I was like the Tazmanian Devil rifling through the cupboards for food! Once treatments were done, I got back to better eating habits.
While in the hospital for the kidney biopsy, we met a dietician who gave us some good information on a renal diet. Armed with this information, I thought this would be another change I could make to help my kidneys.
By September of 2010 my kidney function had dropped to 11 or 12%. Dr. Frock brought up dialysis again, which I again waved off. I did say okay to giving my name and number to REI, so they could set up a time to educate us on dialysis. This I agreed to, but when the call came to set up an appointment, I didn't pickup, and I never returned the call.
I did agree to letting Dr. Frock prescribe blood pressure medicine for me. My bp was not improving either, so this was something else I could do help my kidneys.
September was my first month of maintenance treatments, and the plan was for me to come in once each week for four weeks. As I mentioned in a previous post, we changed that schedule going forward to a once every eight weeks program.
My first maintenance treatment was tougher than I remembered. I didn't feel as good afterwards like I did back during the initial treatments. I thought it was because there was less leukemia in me. Dr. Tarantolo corrected my thinking there, and prescribed compazine for me to take if I didn't feel well following treatment. I had taken this during my initial treatments, from time to time without any problems, so it seemed like a good idea.
What I didn't see coming was the train wreck about to take place in my body. I'll pick the story up there in my next post.
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