My myeloma impacts my kidneys. We track creatinin (or is it creatinine? (shit I don't know) to see how the kidneys are doing. At the height of myeloma activity, my creatinin was over 8. At that time my previous kidney doc wanted me to start dialysis. This was about 3 years ago. Once we got the myeloma under control, the kidneys started to improve. When doc Zoller scheduled me for dialysis, I opted to pass (and changed doctors, she was way too doom and gloom). To me, even though the numbers suggested kidney failure, my kidneys still worked. No swelling, I could still pee, no dry skin. Since then my kidneys have improved. At best, my creatinin has been in the low 3s. They are definitely damaged, so they'll never fully recover. Normal kidney function would translate to creatinin around 1 or less. Over 4 by definition means kidney failure. Low 3s translates to severely damaged. My kidneys likely have scar tissue, but they're still working. I take a blood pressure medicine (losartan) to open up the capillaries in the kidneys and help them bounce back. My blood pressure is always low. But the combination of low blood pressure and low hemoglobin, means that I often get real lightheaded when I stand up. I simply stop, put my hands on my knees and the dizziness passes.
Recently, my new kidney doctor loosened up my dietary restrictions. Generally a renal diet means no food with high phosphorus or potassium. No dairy, beans, nut, soy, spinach, bananas and so on. Because my phosphorus and potassium numbers were good, he gave me some freedom in my diet. In the past month or two, I've had nuts, ice cream, cheese and so on. I wasn't going crazy, but I was indulging. Two weeks ago my blood work showed my creatinin had snuck up over 5...back into failure range. My myeloma numbers were good, so the kidneys weren't showing the effect of strengthened myeloma. But something was going on. For the past two weeks, I've gone back to the strict boring renal diet. This morning was more blood work. Just got the call from Dr Phan's office. Results are in. And the creatinin is back to 3.9. Oh hell yeah, that's better. I wrote a long time ago that the thought of doing dialysis scared the daylights out of me. I've walked through a dialysis center and it's sad. Very sad. Chemo I can handle till the cows come home. But dialysis...nope, no, no way. So I gotta baby these things. They're all I got. One side note, myeloma patients generally are not eligible for kidney transplants. Because of the cancer, we're bad candidates. Anyhow, hopefully they remain under control. And I drink tons of water. Sorry California, gotta do it.
Here's a photo of me carrying my blood from Dr Phan's office to the lab. Because my veins don't work any more, we have to draw blood from my port. A nurse or the doctor has to do that. So I go to Phan's, get my blood drawn and walk it over to the lab. That's how we do it.
Chemo next week. Wrapping up another cycle of maintenance. Berenson early October.
My wife works in a dialysis clinic. Scares the hell out of me, too!ReplyDelete
Although certainly not a walk in the park, if you ever have to do dialysis, Matt, try peritoneal dialysis first. You are too young and too active to spend 3 days a week in center. If not PD, home hemo would be better. I still can't believe they didn't recommend this to you in the beginning before putting in a fistula. My creatinine hovers around 2.5-3.0. But my kidney function (GFR) is only 18-20%. I would have panicked if my creatinine snuck up to 5.ReplyDelete