Tuesday, May 23, 2017
You Got to be Kidney Me
I just got my latest lab results. Everything looks good. Darzalex continues to work like a charm. Thursday I see Berenson and I'm sure he'll give the go ahead to switch to maintenance, which means only monthly infusions. That will be fantastic and perfect timing for my retirement/embrace life future. I also take Pomalyst, an oral chemo drug. Not sure how that will work in maintenance. Note that this timing fits with the FDA guidelines for the drug., meaning that insurance won't have issues with it.
What's amazing to me is that as I soon as I started darzalex my kidney function improved dramatically. For at least two years, my creatinine hovered around 3.5 to 4, meaning I hovered around failure range. But for the past few months, my creatinine has been below 3 and with my most recent labs the number is 2.36. Recall that early on in my diagnosis, the number was over 8. I was on a strict renal diet and my kidney doc at the time wanted me to start dialysis. I even had a stupid fistula (surgically linking a couple of veins in my wrist to create a super vein) to be used during dialysis. I was not symptomatic for having failed kidneys, so opted not to do dialysis. Oh and I fired my kidney doctor, who was so gloom and doom it was depressing. The thought of dialysis scared the absolute shit out of me. It seemed much more daunting than chemo. And if I'm being truthful, the thought of doing dialysis along with chemo had me thinking fuck all of it and I'd pull a Marley and Me maneuver and I'd find a tree to a curl up under. But my kidneys hung in there and look at them now! Amazing and quite a relief.
John Oliver recently did an in depth look at the dialysis industry, including a look at Davita, a leader in providing dialysis. It's a scary ass story and scary ass industry. It makes me quite glad that I never did dialysis.
I recently met John, a fellow myeloma patient and advocate. He's involved in a program called Multiple Myeloma Journey Partners. Here...