How long have you had this? Why? When did you know something was wrong? You don't seem sick... I hear these things frequently. Here's my story....
On Mother's Day weekend 2016 I traveled the 5hr journey to visit my parents in Georgia. I'd talked to my mother earlier that day. "Mom, I'm getting some kind of rash! My skin is so itchy, and I haven't eaten anything different." Mom in typical fashion lectured me about my Bath & Body Works addiction and urged me to stop using so many different things. Hours later my trusty sidekick, Snow White, (my black lab mix) and I arrived home. Whoah! I stepped out of the car and almost fell over. My feet felt like they didn't belong to me. I stumbled to the front door and into my brother's room. He was shocked as he looked at my swollen feet and ankles. He carried me to the living room, gave me Benadryl (still thought I was having an allergic reaction), and urged me to sit down and put my feet up. By the time I woke up the next morning, swelling was only a little bit better. I listed every item in my diet searching for my allergen. Mom made me promise to see the doctor as soon as I got back to Florida. She said, "It could be your kidneys..."
I sat in my doctor's office planning my day. I was only here because Mom told me to go, but I decided to use this as an opportunity to ask the doctor about my crazy heartbeat. I perform in an upbeat Sesame Street show at Busch Gardens, Tampa. During our outdoor performances, I would lose my breath. At night I felt I could hear my heart beating in my head. This was my second year in the show, and I assumed I was getting too old to perform like this. I just needed the doctor to confirm it. I kept having this thought/vision of me explaining to my bosses that I wouldn't finish the season. I LOVE this show and this job, but I couldn't picture myself continuing for some reason. The doctor said he was concerned about my blood pressure. It was off the charts! This explained the heart beat stuff and the headaches. He ordered blood work to find out why, at 32, I was experiencing hypertension. Oh wait, I thought, let me mention the swelling thing too. He wrote something down, explained a few things, and ended with "It could be your kidneys..."
Two days later I had just finished the first show of the day when I got the call. I was being admitted to the hospital. They were saying that my kidneys had failed or were failing. FAIL? There must've been some mistake. I stayed in the hospital for a week. I gasped at every question: Do you have itchy skin? Shortness of breath? Swelling? Yes yes yes all of this plus a horrible taste in my mouth and inexpiable fatigue. Simple things were becoming difficult. Instead of being alarmed for months, I had simply chewed gum or candy and pushed through my exhaustion. My nephrologist (yup, now I had a nephrologist) ordered a kidney biopsy and an ultrasound. He said it could be something acute where I would have to take meds or something chronic that would require dialysis and eventually a kidney transplant. For the biopsy, you have to lay on your stomach while a long needle goes in your back so they can get some kidney tissue. This is where is got scary. My back was numb so I couldn't feel pain, but I could feel pressure and hear scary sounds. I began to cry.
When I was back in the room, my dad and I made jokes about the pending results. We assumed that it would be acute for which one treatment would be steroids. We laughed imagining a big raging version of myself. The doctor came in and very calmly, very plainly stated "You have stage 5 chronic kidney disease." There are only five stages. "Your kidneys are functioning at only 5%, and they are 85% scarred. The only option is dialysis and a transplant..." I was in disbelief. I felt like I all of a sudden weighed nothing and could topple over at any second. I felt unsteady as a sat on the hospital bed. Just then my mom came and stood behind me so that her body was holding me up. She asked questions, nodded, and began making lists. The doctors explained that they believed that it was caused due to lupus (an autoimmune disorder in which your body basically attacks itself....traitor!).
So here I am a year later typing this at dialysis. I come here three times a week for four hours each session. A lot has changed, but thankfully a lot hasn't. I still perform in the same show, and I love it again. I take a total of six pills a day and have significantly changed my diet (more on that later too.) One constant has been my friends and family. The day I first went to the hospital my mom told me that she and Dad would be there before anything happened, and they were (no idea how, as I mentioned, it's a 5 hour drive). My parents and other family are so supportive with their reminders, unconditional love, and even jokes. My friends have always visited during hospital stays, driven me to the tough appointments, sat with me at dialysis, adjusted the menu, and babysat Snow White. God is also a constant. I strongly believe that He is a healer and a protector, and he has kept me for a reason. So that's it. That's why I "don't look sick" and never will ;)
I hope you made it through to the end of this long story and that you keep reading my following posts. I'll talk about my progress, share dialysis stories, and talk about some non-kidney stuff too (I promise).