Living Behind Closed Doors of CKD by Karley Perez

The world is full of chronic illnesses, many people like to pretend like they don’t exist and live in a perfect world. However I’m sure most of us are pretty aware of how unrealistic that mindset is. I’m Karely, a not so typical 27 year old living with a chronic illness my entire life, along with other non-chronic but certainly traumatizing illnesses. My chronic illness is called Chronic Kidney Disease (CKD), meaning losing function in your kidneys. For some people it happens during a period of time it either take months or maybe even years. For myself however I was born with this disease, my specific condition was that my kidneys didn’t fully develop as a baby.

Unfortunately I was not diagnosed till I was 7 years old, the years before that consisted of common kidney failure symptoms. These symptoms include; nausea, vomiting, fever, loss of appetite, lower back pain, constant urinary infections, and very low energy, which are all the things I had as a child. This was in the early 90’s, my mom took me to any and every hospital possible but no luck in diagnosing me with the correct illness I had. Finally my mom ended up taking me to a whole known neighborhood family doctor who was also a psychologist. Just by my mom simply explaining to the doctor all my symptoms, he right away guessed it was my kidneys, so he sent me to get blood tests and sure enough I was Diagnosed with CKD.

My kidneys were no longer working at this point, so it seems like the doctor caught it just in time. I was sent to a hospital to see a Nephrologist which is a doctor that specializes in kidneys, so that I can begin a treatment called dialysis. Dialysis is basically a treatment that does the job an actual kidney would do, just not as efficient. I had what’s called a peritoneal catheter put in my stomach because that’s how I would get hooked up to the dialysis machine. This now meant I had to be careful in how I played, I had a strict diet because my toxins were not being cleaned out of my body since that usually happens when one urinates. That’s the job of a kidney to  collect the toxins you consume and empty it out by urinating.

The doctor had told my parents it was best if I had a kidney transplant as soon as possible for my benefit. At which point my mom decided to get tested to see if she could be a donor, since we are all or most born with 2 kidneys if your healthy enough and are a match you can donate one. The process of being tested to be a match takes months because they like to be very careful and sure that the kidney transplant will work out. Six months after I began the dialysis treatment I was able to receive my mom’s kidney. It was a success, the kidney was working perfectly and my mom stayed healthy. This was only days before I turned 8, I was discharged on my 8th birthday and ready to live a new life.

Things were not at all what we all expected, because with kidney transplants come anti-rejection medications that help keep your kidney going. However these medications had quite an effect in my physical appearance; I was always shorter than everyone else, I looked weirdly swollen and harry all over but especially in my face. You can imagine the hell kids at school put me through for looking so different from anyone else, constantly picked on and left out.

As bad as it was feeling or being physically ill, nothing scarred me more than the psychological trauma the kids in elementary school and middle school put me through. With my physical appearance being so different than everyone else’s I was pretty much the easy target. I still had a friend here and there throughout elementary school but it didn’t stop others, especially the little boys from calling me names. By my last year in elementary school finally one girl stood up for me when another was calling me names, that was the first time someone defended me because I was too afraid to say anything. I felt for that moment that some kids really did have a heart, especially since my teachers every year would explain my condition to the rest of the class.

Once I got to middle school I hoped to find the girl who once stood up for me, but I had found out she moved away. I ended up spending all of 7th grade alone with no friends at all, because I had reached the age where boys started noticing girls and of course I was the last person they would look at. Though the swelling from my face had gone down a bit I still had very hairy face, arms, and legs, so I would wear layers to cover it up. But once I had to change for P.E. with my shorts, and short sleeved shirts all eyes were on me, and not in a good way. I can hear the whispers and laughter from the other kids, I begged my doctor to give me a not so I wouldn’t have to do P.E. Which she did, but either way it was to late, everyone knew what I tried to hide, and I didn’t like talking to anyone about how much emotional pain I was in, no one was aware of what I was going through.

By 8th grade I had made a couple of friends that I would eat lunch with but eventually one decided she was too smart to hang out with us and the other one had to go to a foster family. I was found alone yet again; somehow I still made it through middle school and had my promotion. After 13 years of traumatic schooling experience, when I entered high school I isolated myself before anyone had a chance to push me away. Most of high school I spent missing days and weeks because I was constantly hospitalized. My transplant had failed after 4 years due to one of those side illnesses I had mentioned before. I restarted dialysis when I was about 12 years old.

In the eyes of the teachers and classmates in my high school I was just slacking off because I never told them about my health. I wanted to hide that part of my life and try to be normal like everyone else and maybe even be popular or have a boyfriend. That was a huge mistake that now as an adult I see, because even though yes it’s true that our illness does not define us but it is part of whom we are. I ended up dropping out of high school my junior year because it was basically impossible for me to graduate. I tried going to a continuation school but as soon as I turned 18 they kicked me out and lost all the credits I had earned.

/There were online classes I tried taking to earn my high school diploma but that same year 2007 I was called in for my second transplant. I was so happy and excited hoping things would change and I would feel better after this. Boy was I wrong, the donor was a deceased donor and the doctors committed negligence in not checking the kidney before putting it in me. I ended up almost dying while they were pumping me with fluids and strong medications.

I was hospitalized for almost a month and hardly remember much because the medications they gave me caused terrifying hallucinations. My parents and I were heartbroken because after waiting almost 7 years for another kidney it ended up not working though they still kept it inside my body. I was back on dialysis once again within a year or so, waiting once again for another transplant that would actually work this time. During this time I struggled to try and have a normal life and figure out a way to get my high school diploma because I really wanted to go to college. The online classes didn’t work, the counselor advised me to just get my GED.

My early twenties I spent mostly with my ex-boyfriend who I had settled for because my self-esteem at this point was lower than dirt. He was verbally and mentally abusive especially about my health, it’s like he wanted me to continue hiding that side of me. It seemed to annoy him when I was in the hospital or sick instead of being supportive. I lasted 5 years with this man helping him get out of drugs and alcohol abuse but in the end I was never accepted by his family or friends. Everyone told him I would die soon and he should be with someone prettier that didn’t have health problems.

I’m a firm believer in everything happens for a reason, the 2nd transplant I had that never really worked began bleeding one day causing blood clots and major pain. At that moment I finally opened my eyes and knew this guy was only going to bring me more anxiety and stress than I already had so I broke up with him before going to the E.R. My sister in law worked for a clinic with a doctor that worked in a local hospital so she convinced me to go to that hospital instead of my usual as she knew I was terrified of my old hospital after almost killing me. Once I was there, the doctor ordered some tests to be done and found out that the kidney had a loose artery that was bleeding onto my bladder. Unfortunately they don’t to big surgeries in that hospital so I begged them not to send me back to my old hospital.

Thanks to my sister in law, she pulled some strings and got me into one of the best hospitals in the state. There they had to remove my kidney which is a dangerous procedure that they don’t usually do unless it’s absolutely necessary. It turns out I stopped breathing during the procedure and ended up in a coma for like 4 days, I was on a breathing machine and my parents by my side afraid to lose their daughter. After those days I woke up with a tube down my throat and the doctors calmed me down and explained that they were going to remove it but I had to try and breathe. I ended up with the oxygen mask for a few days and no longer on the breathing machine, and eventually moved on to the oxygen they put through your nostrils.

After that experience I remained on dialysis for many years but I didn’t want to just live life on dialysis. I was determined to get my high school diploma not GED so I found out that there is a test to get the equivalency of a diploma and right away began hitting the books to study for it. It took me like 4 tries to pass, there are only 2 sections, English and math, I passed the English on the first try but math has never been my best subject. I just received my diploma in November 2016, feeling so proud that I never gave up.

I began going to a community college when I was 24 because they accepted me without the actual diploma as long as I promised to have it before finishing my college courses. I’m still going to that college now, I have been taking only a couple classes per semester because I knew with dialysis I would be missing a lot of classes.  I decided to major in Liberal Arts: Social Behavior, specifically getting certified to become a substance abuse counselor. So  far I’m doing great with a 4.0 GPA, and unlike grade school in college I decided to stop hiding part of who I am. I’m more open to telling people about my health and I have made so much friends that have been understanding and help me when I have to miss class.

Since the beginning of this year however I am not going to school because I just got my 3rd transplant on January 14th and its working great! I have never been happier than I am now and I finally feel free, it’s a feeling I have never felt before and I love it. I cannot wait to see what the future holds, and I really hope this kidney will last me the rest of my life. As normal as I would try to lead my life before by going out with my friends, or going to concerts and meeting my favorite country singer, I was never feeling all that great. It’s different now that I have a working kidney, I don’t have to fake being ok anymore, because I really do feel energetic and happy.

So here is my message for you reading this today, whether you have the same illness or a different one or maybe a similar one. Never hide who you are or part of your life from others out of fear that you will not be accepted into society. The people that are worth keeping around will stand by you even when they know the real you, every part of you not just the good. Don’t lose hope, don’t give up because as cliché as it might seem it really is true, what doesn’t kill you only makes you stronger and wiser. Don’t ever hide your emotional pain especially from your family because if there is something I have learned is that had I opened up to my parents, I could have avoided years of being bullied.

If you didn’t know much about my condition or had not even heard of it, I hope you understand it now. This way you can keep watch of any symptoms that might be abnormal such as the ones I had as a kid. Remember it can be fevers, loss of appetite, pain when urinating, lower back pain, not able to keep food in, losing energy or constant urinary infections. Keep in mind that a lot of people constantly have urinary infections and just assume taking antibiotics will fix the issue and that will be the end of it. However if it’s constant and many urinary infections or kidney infections it can at some point damage one or both kidneys to where they stop working. Take care of your body, and don’t be afraid to see a doctor because you don’t want to hear what they might say, that doesn’t magically make you better.

I have wanted to begin an online support group for a while because even though we all have supportive friends and family I know sometimes they don’t fully understand. I haven’t been able to gather enough people so if you are interested please feel free to let me know, let us be there for one another even if it can’t be in person. Sometimes just talking to someone online chats can change everything and turn things positive especially if they have been in your shoes.

1
Karley at age 8 after her first kidney transplant.
[Image shows a young girl laying in a hospital bed, wearing glasses and with dark brown hair.]
[Image on the left shows Karley standing outside a house, she’s got one hand on her hip and doing a thumbs up. In the image to the right is Karley sitting in a hospital chair post op attached to monitors and pumps.]

This is Karley after her 3rd Transplant.

 

Thank you, Karley, for sharing your story.

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