Life on peritoneal dialysis almost becomes routine, but it does seem like there's always something. My iron level is too low, running out of supplies, power out for multiple days, but it is all survivable. In June, I went through a horrible, scary period where my blood sugars kept dropping, without explanation. In a period of 2 weeks, the paramedics were called for me 4 times because I was incoherent. After recovering from one of the episodes, a friend asked me, "Can you keep this from happening again?" I couldn't. I was scared. I had children to care for and no answers. Asking my nephrologist and doctors in the hospital wasn't helpful; they said they didn't know the diabetes aspects of it. I saw an endocrinologist who said the only way to stabilize was to get a continuous glucose monitor and an insulin pump, but she still couldn't tell me why it was happening. I was frustrated that to keep myself alive, I was expected to be an expert on both diabetes and renal failure, but none of the trained doctors treating me were. Ultimately, I was grateful to get through every day.
While my blood sugars were all over the place, I was having more and more trouble with the dialysis cycler at night. I got very little sleep as it was constantly alarming CHECK PATIENT LINE and LOW DRAIN VOLUME. Often I couldn't get it to stop alarming, and I had to simply shut it off. Somehow, through all this, my dialysis adequacy numbers stayed within range, but I was exhausted, and, again, just got used to being tired all the time. Eventually, I stopped being able to drain at all. Nothing would come out and nothing would go in. I tried manual exchanges, it worked for a couple days, but ultimately nothing. Something was blocking my catheter. My nurse told me I was going to need catheter revision surgery to diagnose and fix the problem.
Getting a consult appointment with the surgeon took over a week. At this time, I have not had a full round of dialysis in about 2 weeks and I can feel it. I do everything I can not to toxify myself any further. I eat very little, no meat(and I'm not hungry anyways) and I am trying to hold on and stay healthy until I can get my catheter repaired. I look up what happens if you stop dialysis, and the answer is clear: you die, within days or weeks. I am running out of time. While I am waiting to see just when the surgeon can actually do my surgery, my nurse calls me and tells me I need to have surgery to get a hemo catheter placed. I break down at the thought of this. A hole in my chest again? Last time the anesthesia did not work and I remember the radiologists, scared and apologizing, and the intense, unbelievable pain. I argue with her and let her know I can hang on a few more days, but ultimately, the PD catheter surgery will have to heal(maybe as long as a week) before I can use it/do dialysis again…I know I don't have that kind of time.
