So maybe we should back up a little bit in the story. About 5 years before I started having issues with my stomach, eyes and feet, my doctor had seen a slight decline in my kidney function. She put me on a low dose blood pressure pill that was intended to protect my kidneys. It didn’t sound serious; more of a preventative thing. As you get older there a range in which your kidney function is expected to fall between. Some people have higher function, and some people have lower. It’s expected to be lower for even a well-controlled diabetic as part of the nature of the disease but I guess it had started to decline a little faster than we had hoped. I wasn’t good about remembering to take them. They didn’t make me feel any different, and I’m not really sure I understood how they were supposed to be helping me.
So suddenly I’m in my doctor’s office and she’s telling me that my function has dropped significantly since my last blood work. She’s going to refer me to the chronic kidney disease (CKD) clinic. I started seeing them on a regular basis. I was assigned a nephrologist (kidney doctor), a nurse and a dietician. I could call them when I had questions or concerns about my kidney health. They really took care of their patients.
About a month before we left for our wedding I was scheduled to get a kidney biopsy. Let’s see what’s really going on here. At this point I remember it feeling a little more serious. I had been somewhat procedure free thus far, and I had a fear of going under the knife. I starting always bringing a support person with me to my appointments. I found it easier to hold it together if I knew I had to put on a brave face for whoever was with me. It also helped me remember all the details of the appointment. What should I be eating? What shouldn’t I be eating? What signs should I watch out for when it comes to real kidney failure?
Kidney failure. Could this be true? Shit just got real.
My father was the one to take me to my biopsy. It was my first procedure, and I was not really prepared for the list of possible complications. I later learned that the possibility of death is a pretty standard potential risk and they go over it for most things. I had to wait in the hospital for 4 hours after the biopsy to make sure there was no internal bleeding. There wasn’t, and I was happy to go home.
When I got the results back I believe my function was in the 20% range. Not great, but not urgent. I met with the CKD clinic often over the summer months and we monitored my function closely. I had a really great support system, and I had a really great job that was flexible with all the extra appointments.
On September 2, 2016 I had a regular follow up with my nephrologist. It was a morning appointment, so I had planned on just sneaking out of work for an hour or two and then coming right back. I didn’t bring a support person. I sat down in the office and Dr. Cheema touched my arm. Your function has declined again. I’m really sorry. You need a kidney transplant. I think I might have gone into shock at that moment. I smiled and said ok. She asked if I was alright, and I’m sure I said something like “it is what it is.” A saying I despise, by the way. She gave me a hug, and said that she would be referring me to the renal transplant program at the Foothills Hospital, and that she would continue to follow me until they could get me in.
I went back to work like it was nothing. I mean I guess I knew it would be coming. I actually remember joking with my coworkers that one day I might need one of their kidneys. We laughed about who would be willing to donate, and who wouldn’t. It suddenly wasn’t funny. I don’t remember working the rest of that day. I spent most of the hours wondering how I would tell my family and friends and to be honest, I don’t even remember having those conversations. I was worried that I’d be judged the same way I was judging myself for not taking care of myself. I should have tried harder all those times I said it would be different. I wanted to go back and start fresh so I could save face. How could I look my parents in the eye and tell them I screwed up? It took me a long time to come to terms with that part of my journey. I couldn’t live if I spent my time on the “what if’s” and the shame of all the years I lied about my health. They happened and I can’t change that. I also feel strongly that I started taking better care of myself at the right time in my life. I didn’t die. I overcame challenges that I haven’t begun to write about and I am a stronger person for it. If I had not taken charge, I wouldn’t have had been given the opportunity to fight for my life, and enjoy a life worth fighting for.
I sat on the couch and cried that night, not knowing what was ahead. I had my first appointment with the transplant team booked for the end of November. The goal was to try and preserve as much function as possible while I did the transplant work up, which I will tell you about in another post. We wanted to avoid having to go on dialysis, but were learning about the different kinds and their pros and cons. I was scared, but I vowed to remain as positive as I could, no matter what. Not to hide how I felt, but to keep me sane.
I really thought things were bad, but the next few months proved to be quite challenging. We will talk about them, because that’s part of the story and I am overwhelmed with the need to share. We have some heavy stuff coming up folks, so buckle up!
Kari's Kidney 