My Story

No one ever plans for an organ to fail. I certainly did not. Even with father, who went through kidney failure, I didn’t think it would happen to me because he was a diabetic, and I am not. And the majority of my adult life I have done everything I can to avoid ending up like my dad. But unfortunately, my fate is the same as his. Starting around 847. My dad ended up in the hospital for kidney failure. And at 45 I two ended up in the hospital for kidney failure.

 

The first sign that something was wrong occurred one morning in 2017. I was in the bath-room starting my day and when I went to go urinate, blood came out. Anybody would panic if they saw that cause it’s a clear indication that that’s something is wrong. I can remember going to an urgent care facility in a panic and having several vials of blood taken to run some labs to figure out what was going on. And when the panel came back, it was determined that I had chronic kidney disease. My medical team immediately started drug therapies to con-trol the condition, but I continue to have problems that my doctor couldn’t understand and so we did a biopsy. The results came back, confirming that I had a rare kidney disease called focal segmental glomerulosclerosis. FSGS causes the scarring of the parts of your kidney to do the filtering of your blood. It is a degenerative condition that can only be managed, not reversed. And my doctor told me eventually I was gonna need a kidney transplant.

 

You have no idea how much begins to go wrong when your kidneys fail. The first noticeable thing I experienced was a lack of energy and a feeling of total fatigue all the time. Basic things like house chores doing laundry, cleaning all of that became unbelievably difficult because I just didn’t have the energy to do any of it. I was an acid weightlifter. I devoted the majority of the energy that I had to get into the gym and trying to stay as healthy as possible. I got a trainer, who also provided me with a nutrition plan, but in the end, none of it helped be-cause after each session, I felt like I was gonna collapse into a pile. And then my doctor told me that I was eating too much protein, and then I needed to cut back dramatically, which any weightlifter will tell you his death to any kind of progress you wanna make. But my doc-tors were concerned that if I didn’t cut back on the protein, eventually urea would make its way into my brain and calls me to start seeing things. The last thing I needed was to have to hallucinations. So I followed the doctor’s orders. Eventually, the energy demands of work-ing out and every day life became too much. I started sleeping extremely late into the day. Any kind of plans that I made for fun activities in the evening came at an extreme cost. So I begin withdrawing from friends, withdrawing from having a life outside of managing my kidney dysfunction.

 

It wasn’t until the 2024 / 2025 timeframe that things really started to go downhill. My energy level is crater and I was barely able to leave the house. Insomnia became a real problem. I just couldn’t sleep. I’d stay awake looking at the ceiling frustrated that I was extremely tired, but yet unable to go to bed. Kidney disease often leads to an electrolyte and balance, and I was not spared. When I finally got sleep, it was usually interrupted by the worst Charlie horses I’ve ever had. Just twisting my foot in One Direction or another could end up in the muscles, locking up and me being in pain. Another challenge came from my kidneys stop being able to clean out the phosphorus in my blood anymore. You’d be surprised how many foods have false in them. Not being able to get rid of the false for us means it starts to build up in your system, and then it causes your skin to become incredibly dry and itchy. I would lie awake all night, long twitching with cramps and itching my skin until I bled. I have blood stains on my sheet to prove it.