MPGN Update

Part of what I wanted to do with this blog was have a place that others with MPGN could go to see how someone else copes with the disease. I found nothing like that when I searched the internet. Mostly only doom and gloom.

I’ve neglected that side of my blog a little. The reason being-I just didn’t want to whine, or complain. I was determined to be as positive as possible. There were times positive just wasn’t in me. I should have been brave enough to show that. My excuse was the determination to fight the negative feelings as much as possible. I felt that was the most beneficial thing to do for myself. Yet, the fact remains—there are others out there with this disease. So…

Six weeks without prednisone. Yesterday I went to the doctor to find out if the treatment worked. Was MPGN beaten, on retreat, voted off? I had labs Friday, yesterday I learned the outcome.

Anxious, nervous, my blood pressure up (just what I didn’t want) I waited. I felt so much better. Yet, a few things still worrying me.

I reflect on the journey I’ve been on since January 2008. It took from January to June to narrow down my symptoms to kidney problems. Mid-June when I started treatment: a high dose of prednisone, aspirin, blood pressure medicine, a diuretic and medication for gout (which the diuretic caused), I went through the puffy face from the prednisone but overall tolerated the treatment well.

There were two episodes of hair loss: one blood pressure medicine caused the first, then again as I weaned off prednisone. My long hair—gone. I have a bob now. Not too bad, but there was and is a little grief about my hair.

But…

The results were wonderful. My creatinine-normal, protein-normal, iron-normal. A few results not perfect yet, but going in the right direction. We’re working on reducing the diuretic and medication for gout. I’ll be on aspirin the rest of my life.

Hey, I’ll take it. Happily.