What Being on Dialysis for A Year Taught Me
I go to the dialysis clinic 3 times a week for 3.5 hour sessions. I get 2 one-day breaks and 1 two-day break in between. However, my life pretty much revolves around being a dialysis patient. Doctors appointments, blood draws, prescription runs, grocery hauls, adult chores, and rest fill up my days. There’s also my cuddly pup Ginger to take care of, my girlfriend, and three kids.
I’ve been a dialysis patient for over a year and a half now. Here are some of the things getting hooked up to a blood — cleaning machine taught me.
Energy is precious.
There was a time where I was so drained that I needed a cane or a walker to help me get around. The first time I walked into Walmart with my cane, I was so ashamed. I was only 22, and I looked so ill even the preacher was scared I was dying right then and there. Apparently, I was extremely pale and frail. Every time I ate, I got terribly sick. So I stopped eating.
When I first got to Michigan, my adoptive parents would playfully tease me about how little I ate while trying to get me to eat more. They asked what I loved, liked, and couldn’t stand and didn’t hesitate to incorporate my likes into our meals.
At doctor appointments, they’d push me in a wheelchair if it was a long walk. The big event we went to right before we found out my kidney didn’t work was this huge Scottish music festival. Their three kids, my siblings, were in the Chelsea House Orchestra. Somehow, I walked around that whole college campus pretty well. However, for the next big event, we rented a wheelchair for me so I could get around easier.
Pain is one thing. High amounts of pain suck, and it’s hard to think straight when your body is constantly screaming. Fatigue is a whole other monster. It’s a hideous beast.
When it takes every ounce of energy you have just to walk to the bathroom, you’re in trouble. I found myself living for the days I felt “good”, which would most likely still have a healthy person curled up in bed hiding under the blankets. Now that I’m on dialysis, I have more “good” days.
Proper nutrition is a balancing act, but it’s worth it.
It took about 50 milligrams of Prednisone for me to eat three times a day. The first time I felt hunger again, I honestly wasn’t sure what it was. I’d gone a full year without a real appetite.
Due to not having a functional kidney, I have to follow a renal diet. I also am on a fluid restriction. I’m supposed to avoid potassium, calcium, but most importantly phosphorus. In addition to that, it’s recommended that I eat as much protein as possible because each dialysis treatment takes protein from my body.
I had my kidney transplant evaluation appointment recently. One part of it was a video call with a different dietician from the one I see at dialysis. She dived right into the tough questions. “Can you tell me what your diet is like? What did you eat yesterday?”
I racked my brain, knowing that I don’t eat much on dialysis days. I picked a different off-day where I thought I did pretty good. I went through the list of things I’d eaten. Do you know what I forgot? Vegetables. I was so focused on getting in protein that I didn’t add a nutritious vegetable side.
I think I’d eaten rice, but she was listening for a green vegetable. She sounded like my adoptive mom. I politely nodded and listened, but because I’ve had bad interactions with dieticians in the past I’d already had my guard up.
I’m still adjusting to the renal diet. I take phosphorus binders, which are common because phosphorus is in almost everything. I avoid dark soda like the plague (most of the time). Root Beer is the only dark-colored soda that doesn’t have phosphorous. Potatoes and cheese are what I used to live on and now I can’t have those as much.
There’s nothing wrong with not being productive.
When I first realized I wasn’t feeling good, I’d just taken medical leave from university. My anxiety and depression were at an all-time high. I was living alone on campus. While I’d made an amazing friend and had my emotional support puppy, I still battled thoughts of self-harm and suicide. I was scared I’d actually end things if I went back to school.
Since I wasn’t at school, I was trying to write full time. I was going full force on here. I couldn’t go back to my part-time job because they’d already replaced me. I wasn’t making much money, but I showed up every day. At some point, I realized I needed a nap in the middle of the day. I’d wake up around 7 to see my grandmother off to work, write for a couple of hours while she was gone, do a chore or two, take Ginger outside and feed her breakfast, and then be back under the covers by the time she got home at 11:30.
Neither one of us knew how sick I was, so she thought I was being lazy. It didn’t help that I kept going to the doctor and the emergency room and coming back with no answers. When I went to my kidney doctor, they ordered a biopsy because my numbers were slightly elevated. The biopsy went horribly and all they came back with was scar tissue that they couldn’t treat or stop from spreading. We now believe my kidney was rejecting then and they missed it.
I had to learn the hard way that I didn’t have to always be doing something productive. Sometimes the only productive thing I do is go to dialysis, which makes the body feel like you’ve just run a marathon. Sometimes it’s just going to the doctor, or a load of laundry, or taking Ginger for a walk. I’ve learned that I don’t have to give in to “hustle” culture. Following Garyvee’s “eat shit, work 24/7, and sleep as little as possible” mantra will literally kill me — and that’s okay. I had to learn that I’m supposed to listen to my body first and foremost.
It’s the little things that matter most.
This whole ordeal taught me who my friends were. Unfortunately, when I stopped having the energy to always check in first, I grew apart from some people.
I was literally fighting death. I scared the shit out of everybody on multiple occasions. One night, I was in the emergency room and it was 2 or 3 in the morning. I looked over to see Gwen trying to sleep in that ungodly awful visitor’s chair. I don’t know how many times I offered her the bed. The pain medicine had kicked in, but I wasn’t tired enough to fall asleep. She hadn’t eaten or drank anything, so I asked the nurse if I could walk to the vending machines. I spent about $12 just getting us both snacks and drinks, but the tired smile she gave me was worth more than I could have ever paid.
Simple rounds of a board game, movies, and family dinners became my favorite times. Just taking Ginger for a walk became enough to make my day, simply because I wasn’t in pain and had the energy to do it. There was a time where I would become temporarily blind countless times throughout the day. It was happening enough that I was at a high risk of falling. Then just being able to see long enough to finish an article made me happy.
The little things like a bottle of Root Beer, a slice of cheesecake, playing with the dogs, and a good nap are enough for me. I make sure to take some time to appreciate the little things more now.
A pair of noise-canceling headphones are a must.
Gwen let me borrow her pair of wireless headphones, and I used them the whole time I lived with them. One hour of listening to music with those and I was ready to kick my younger self for purchasing multiple pairs of Beats By Dre. These sounded just as good, if not better — and they were noise canceling.
One flick of the power button and I wasn’t at dialysis anymore. I couldn’t hear those dreadful machine beeps or someone calling for help. If I closed my eyes or got lost in a video game or book, it was like I wasn’t there at all. I’ve always used music to get lost in my own little world but having a pair of noise-canceling headphones make it that much better. I ended up buying the same pair for myself. I won’t ever be able to go back to the regular ones.
Bonus: It’s a war, not a battle.
When the doctor walked in and said my kidney wasn’t working at all, the life I knew was ripped away. When they talked me into going to the emergency room, I didn’t have insurance in Michigan. I walked out of there with Medicaid and a dialysis chest catheter. A nice social worker had fought tooth and nail for me to get put on emergency insurance. Do you know how much a single dialysis treatment costs? Me neither thanks to her.
I don’t even think I can list all the medical hurdles I’ve had to jump over myself. I can barely list all my prescribed medications. I’ve learned to take things one day at a time. One dialysis session at a time. Recently, I learned the average wait time for a kidney in Michigan is 5–7 years, and I’ve only got 1.5 under my belt. I know I’ll get to the front of the line, though.
This is a war I never signed up for, but I’m winning it regardless. The only other option is death, and I’m not ready for that yet. I’ve still got video games to play.