State Of The Kidney Address
Two weeks ago, I saw Dr. Light, Head of Transplantation at Washington Hospital Center, to answer the question, "Is there anything that can be done to protect the next kidney I get from recurrent MPGN?"
Answer: Not much. The one truth about MPGN is that the medical community doesn't know much about the disease. They don't know what causes it, they don't know how to treat it, etc. They have anecdotal evidence (ie. plasmapheresis worked in one case, a particular drug worked in one case...) but nothing concrete. The overwhelming evidence seems to be that MPGN will recur in any kidney I receive, however, the time frame varies.
The good news is that there is a new drug under development, Belatacept, that may turn off the immune system permanently, meaning I could take the drug for a year and then I wouldn't have to worry about taking medication for the rest of my life. So far the drug hasn't shown any nephrotoxic side effects.
Speaking of nephrotoxic, I went to see my Nephrologist this past week and he reduced my Prograf dosage to hopefully preserve some of my kidney function (my last biopsy showed some damage from the Prograf). He also put me on 5 mg of prednisone (Corticosteroid) once a day to reduce any inflammation of the kidney. I think the consensus is that I have about 1 year left with this kidney.
I'm getting my energy levels back. My hematocrit dropped to 26.1 around the time I got my first dose of EPO, but now it's up around 29 (The level I was at when I was put on EPO back in the 90s). It won't be long before I'm back in the 30s. I can definitely feel my energy returning though.