At barely three years old, my life changed. What would normally be found on a 20-week anatomy scan of a baby in this generation was a defect that wasn't caught until I became a toddler. I wish I could say that it was something that was discovered without much pain involved, but that wasn't the case. Vesicoureteral reflux, more commonly known as kidney reflux disease was the culprit. I had stopped eating, I refused to walk, and I had quickly become septic. The tubes connecting my kidneys to my bladder were misplaced, and fluid was quickly becoming backed up into my kidneys.
At 3 years old, I was diagnosed with grade V hydronephrosis via reflux in my left kidney and grade III in my right kidney.
A few days later, I was headed to the OR at Buffalo Children's Hospital to undergo an extremely invasive operation. My family's hope was that with the surgery to repair my renal system, my kidneys would heal and continue to grow.
That wasn't the case. My doctor said it was basically going to be only my right kidney that did the necessary work. Instead of healing, my left kidney became atrophic and stayed the size of a two-year-old's with little function. My right kidney grew larger than average due to the weight it was pulling for my left. Full recovery wasn't possible.
Now, here we are.
I get a lot of questions about what it's like living with CKD at such a young age.
Well, I guess maybe I'm simultaneously the best and worst person to answer these questions. I'm good at answering because it's the life I live. I'm bad at answering since this is basically all I've ever known. It became enmeshed in my identity. Maybe those answers would be better coming from someone who has lived a life with and without healthy kidneys.
The first question I get is usually about having one kidney instead of two. That isn't the case. I have two kidneys in my body, but my left kidney is always causing problems. Since it's generally weaker and much smaller, it's prone to infections, stones, and further damage. You'd probably expect that to be a fearful part of my life, and to some extent it is. Though, it doesn't rule my life entirely. My main goal isn't to keep that damaged kidney alive, instead, it's to keep my healthier kidney functioning longer. So, when my right kidney becomes infected or somehow problematic, that's where the fear is.
Truthfully, I'm always expecting my left and smaller kidney to fail. In fact, I'd probably feel a little better if it was just over already. Instead, it's a constant waiting game while it slowly deteriorates. But, I'll take what I can get — if I can get some function out of it, I'm not gonna turn that away. But, the thought of my atrophic kidney failing isn't something that plagues me. It's a reality, and people with chronic illness often have to experience a moment when they come to terms with reality.
For a while, it scared me, but that was before I accepted that at some point in my lifetime, one or both of my kidneys will almost certainly fail.
That leads me to the next most commonly asked question which is: will you need a donor? The answer? I don't know. I simply do not know. It could go either way. If and when my left kidney decides to call it quits, my right kidney will still be there to do the work it needs to do. Normally, people can live with a solitary kidney. In my case, the damage to my right kidney is what halts the question of a donor. I will admit, my biggest fear out of all of this is still with me despite accepting reality is that my healthier kidney will fail. That would be the worst-case scenario which would likely lead to me needing a donor's kidney. It scares me because almost everyone I know also has some sort of kidney issue. They run in my family so there goes my best chance at a match. Two of my best friends also have some sort of kidney-related health issue. In fact, when I met one of my best friends, Alex, we had no clue at the time that we both had the same disorder. Then, my best friend whom I grew up with developed acute onset kidney disease. Not that I would ever look at these people as "options," but reasonably, my statistics with donation became very grim.
Coming to this conclusion, I became very intrigued by processes such as dialysis and the work of creating bioartificial kidney devices. Of course, nobody would ever want to even consider dialysis but as a young person who is still in the stages of having kidney function, I wanted to educate myself as best as I could.
This usually leads to the third question I get. How do I live my life with this condition?
At first, I rebelled heavily. Instead of taking my medication properly and watching how I handled certain parts of my diet, I became reckless. I would drink a six-pack of energy drinks every day, which is kidney suicide. I'd drink heavy amounts of coffee, eat so much salt it makes my mouth water thinking about it, and ultimately stopped caring.
That happened until the day I experienced what will forever be the worst pain I have ever had: renal colic. If you've never had the misfortune of having renal colic, consider yourself blessed. Ever had a kidney stone? Cool story bro. This? This is the devil's version of a kidney stone. Renal colic is when your ureter, the tubes connecting your kidney to your bladder, begins to spasm around a large stone, rather than just passing it. Some even say that it's worse than childbirth — and I believe them.
As graphic as it became, it was an important day. I went from waking up in a little bit of pain to being on the floor in tears, gagging from the pain and screaming so loudly in the hopes that my neighbors would hear and call 911, which was to no avail. I was home alone, crawled out of bed without grabbing my phone, and I started to pray. I prayed to God that if he saved me from this, I'd take better care of my kidneys. I managed to take a muscle relaxer and fall asleep which felt more like blacking out from the pain. A few days passed and I got better, and I kept my promise. From that day on, I never touched another energy drink. I cut almost all soda and heavily caffeinated drinks from my diet, and took my medication religiously to help lower my blood pressure. It was a wake-up call to me that rebellion wasn't gonna do me any good. In fact, it would cut years off of my life span.
After that, the kidney infections became much less frequent (ironically one is happening right now as I'm writing this). The stones only came around once in a while, and I could rely on my kidneys a little bit more.
That didn't entirely fix it though.
I wish I could say that those lifestyle changes moved mountains. They didn't. Around 18 years old, my kidney issues became worse. No matter how exposed I am to the life of CKD, some things still manage to throw me off guard. I mean, if your kidneys started bleeding out of the blue, I'm sure you wouldn't be as calm and collected. Even though I was doing somewhat better, I stopped going to see my urologist. I couldn't do it anymore. I'm not invincible. It's a hard thing to face and it's even harder to hear coming from a doctor.
People around me were pushing me to go. I didn't want to, so I pushed back. Despite what you might think, it was the right decision for me. I happen to be the type of person who needs to be in control of their own life. I needed to be the one who made the decisions. So, I did all that I could do to keep myself healthy and I left the rest up to God and my body. There really wasn't much the doctors could do anyway. I couldn't handle the tests and the pokes and prods. I just wanted to live. Not rebel, but live. This was part of coming to terms with my disease. Sometimes you get stones and infections and sometimes you bleed and sometimes your kidney function drops. There are days when my kidneys work great and days where they don't. I struggle to see it as anything super far out of the ordinary as the people around me as they see it. That's kidney disease, that's just what happens.
I still struggle so much.
I'm strong, not invincible. I'm not numb. I'm sick. I have accepted my reality as fact, but it is not under any circumstances considered easy. Coming to terms with it isn't exactly like saying you're OK with it. It's more or less accepting the idea that there isn't anything you can do to change it. I still cry. I still get frustrated. I still sit in my bathroom and blankly stare at the walls while I let the realization wash over me. The realization that I am not normal. I am not untouchable. This disease, no matter how upbeat I can be about it, has killed a part of my soul.
Kidneys are one of your most vital organs. When you have a disease that can ultimately end your life, it causes a strain on you emotionally. Essentially, you're forced to face your own faults and weaknesses, your own mortality, more than any healthy person ever would. That is one of the heaviest weights to have on your shoulders.
Even if I'm not on dialysis or on the transplant list, it is something I have to think about every single day.
It isn't my life right now, but this disease forces you to consider the fact that it could become your future. It's not a far-fetched theory or an unwarranted fear, it's reality.
Often I find myself feeling alone. I have great friends and family who support me, but I have yet to meet someone who is in my shoes. Someone who I can relate to on a level of complete understanding. Someone who knows how many prayers are in a glass of cranberry juice. Someone who understands the middle of the night trips to the emergency room where they load you full of antibiotics. Someone who knows the sickly sweet smell of rubbing alcohol and what sound a sterile cup makes as its seal is being broken. Someone who will know for these things for the rest of their life.
It's lonely, but I'll be OK. I will be OK until I am not OK and then from there on, who knows? What I know right now is that this is part of who I am, and I want to help others who are struggling. You can help too.
If you or someone you know is interested in helping someone who needs a kidney transplant, please pass this message along.
A message from Sherry Wheatley of Medina, New York
"My husband Jack has had Lupus for 25 years, and is currently on dialysis and needs a kidney. Two donors were denied and we're asking for help again. Blood type is A+ and O. I love him so much! Is there anyone who can help us? Call Sherry Lanning Wheatley at 585-735-5135."