My Journey With Kidney Disease
I’m sure you’ve heard people joke about what they could get for selling their kidney on the black market. It’s something you hear in movies, on television, and maybe you’ve even made the joke that something would “cost you a kidney”. I’ve made that remark myself from time to time.
The truth is kidneys are one of the hardest organs to come by when they are needed. There are various methods of getting a kidney from someone; living donors, kidney swaps, or deceased donors. In any case the goal is the same, to allow someone who doesn’t have healthy, functioning kidneys a chance to live a normal life.
I never thought I would be a person waiting for a kidney, but here I am. I was diagnosed with Chronic Kidney Disease (CKD) in April 2024. My kidney function became an issue when I was in the hospital due to an infection in January of that year. It wasn’t just caused by the infection, I have a long history of type II diabetes and previous, serious, infections. Kidneys don’t tend to play well with some of the antibiotics they used on me at various times.
When I was told my kidney function wasn’t good, I didn’t believe it at first. I was still urinating, it didn’t hurt, I didn’t have back pain or anything else that I thought indicated something was wrong with me. I figured I would go to the nephrologist and they would put me on medication and I would be fine. The whole, I can’t see it so it can‘t be real ideology.
When I met with the PA from my nephrologist’s office I was hit smack dab in the face with reality. I was at a stage 3, and it was going down hill fast. I remember sitting with the PA and having the different types of dialysis explained to me, knowing that this was very real and very terrifying.
We went over peritoneal dialysis (PD), where a tube is surgically inserted into the abdomen and a sugary water is then introduced where it can stay for anywhere from one hour to overnight, depending on the doctor’s instructions. PD is considered the safest form of dialysis because it’s not as invasive as hemodialysis. The sugary solution works with the abdomen tissues to draw out toxins in the blood. At the end of the session, the abdomen is drained and the liquid is flush down the toilet or disposed of down a drain.
Hemodialysis is the typical type of dialysis people think of when they hear the word. It can be done at home or in a center, but the process is basically the same. A catheter or fistula is surgically added to the patient, and the machine is hooked up with two tubes, one to draw the blood out of the patient and the other to return it.
In all honesty neither sounded very appealing to me. I had heard horror stories about people on dialysis; the pain, the depression, the sickness and even death. At that point I felt my world crumbling and all I could think of was “this is a death sentence”. Once I got into my car, I cried but I knew I had to pull myself together because I had to go back to work.
I spent the rest of the afternoon trying to figure out how to tell my boss I was going to need some time off here and there, maybe for surgery, maybe for hemodialysis, but definitely for doctor’s appointments. I had just been hired in January prior to my infection, so I already didn’t leave the best impression on several people in my department. But when it’s your health, sometimes you can’t plan for it.
A few weeks later I met with my nephrologist and she explained to me the plan of action. She encouraged me to change my diet, no more salty foods, high phosphate foods, no dark colored sodas, and low potassium foods. She told me we would do bloodwork in another month, but dialysis was most likely in my future.
In June my kidney function was at a record low for me and it was time to discuss dialysis. My nephrologist decided we would try PD, so on the 3rd of July I had my PD tube inserted. I hoped that would be the end all be all and I could focus on getting on the transplant list. I knew, and still know, there are obstacles in my way.
I am, what the American Medical Association calls, Morbidly Obese. My weight is something I’ve struggled with my entire life. I was made fun of in school because of it, I’ve been treated poorly in relationships because of it, and I’ve even had doctors disrespect me, ignore legitimate complaints and refuse to give me treatment I need because, according to them, I “just need to lose weight”.
I’m not denying that loosing weight would improve my health, in fact I’ve tried ever diet out there; Nutrasystems, Weight Watchers, Keto, Adkins, Paleo, exercising until I can barely stand, not eating at all, little snacks throughout the day and even weight loss drugs. I’ve lost weight, gained weight, plateaued and given up so many times, that I thought this was my time to try gastric bypass surgery.
I found an insurance plan through work that would cover the surgery and I started the process. In the meantime my nephrologist was trying to figure out how this would affect my PD. She determined that I would need to get a chest catheter for hemodialysis as temporary measure until I was able to complete the surgery, then once my abdomen healed, I could go back to PD.
However, we all know that life doesn‘t always go the way we plan. During the transition from PD to hemodialysis I was unable to focus at work, I was exhausted, and I was constantly sick. I determined it was time for me to take short term disability from work to see if I could get my life back on track and fully process what was happening to me.
During that time I was still working with surgeons to work out my gastric bypass surgery and my catheter surgery. In October, I went in to have my catheter surgery which was one of the weirdest experiences of my life. The surgery is done under local anesthesia, which I had only had one other time in my life. I could hear the incision. I could feel the pressure and I could smell the blood. The surgery itself didn’t take long and I was home before 10am.
What really shocked me was how soon they wanted me to come in for hemodialysis, the next day. In my head I didn’t think that was enough time to recover from an incision in my chest, but I was surprised at how well the catheter worked.
How did my first hemodialysis treatment go? Find out next time!