My biggest fear since diagnosis has been my kidneys failing. Early on we were on the brink of failure. If you were to go simply by creatinine levels, they failed a long time ago. In fact I had a kidney doctor who, without consulting me, scheduled me for dialysis. I said no to that and changed kidney doctors. I have never been symptomatic of kidney failure. No swelling, no nausea, I've always been able to pee. So I have never done dialysis. My fears haven't been realized. I'm all for facing your fears. But this is one fear I want nothing to do with. Dialysis? #FTS
Since we have the myeloma under control, the creatinine dropped from the 8s to mid 3s. For the past two years, I have hovered in the 3s. When I was sick a few months back it bounced to over 4 and that gave us some concern that the myeloma was gaining strength. But I got healthy and the creatinine went back down. For my past two lab results, I've had 3.22 and 3.23. Record lows for me.
Also recently, my current kidney doctor gave me some flexibility on the food I can eat. I had been on a fairly strict renal diet, i.e. low potassium and low phosphorus. Now I can cheat a little. I still don't go crazy, but the flexibility is nice. This is especially true since I've cut out beef, pork and chicken. I need plant based sources of protein, and these often have a bunch of phosphorus or potassium.
My most recent labs are significant, because we can see the results of my expanded diet. And all is well. My potassium and phosphorus remain low. My kidneys are in their own kind of beast mode.
Gary Peterson is a fellow myleoma patient. He has a website that discusses myeloma survival rates; comparing doctors, hospitals, etc. It...
I no longer work, but I did work for over 6 years while managing my disease. For a while, I had some real challenges with human resources. I...