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.

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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.

Stop Suggesting Cures for the Chronically Ill/Disabled

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[Image shows three spoons on a laptop keyboard, overlaid is clipart of torn white notebook paper with a red paper clip. On the paper in black text reads “Stop Suggesting Cures for the Chronically Ill/Disabled” and includes a flat faced smiley face but without a smile, just a straight line.]

For some reason when you are chronically ill or disabled, people find it necessary to suggest advice, often unsolicited, on ways they think will solve all of our problems. Often times they come from a place of not knowing what else to say, or trying to be helpful, without realizing that this is what we have doctors for, or that if we were interested in holistic medicine, we would ask or look into it ourselves.

Of course sometimes you just have to laugh at some of the ridiculous things that are suggested at times. I asked people with chronic illnesses/disabilities to tell me some of the most ridiculous things suggested to them as cures, some of the answers were simple such as “Have you tried yoga?” to more out there suggestions such as exorcisms. Here are some of their answers:

  • “You don’t need a bottle that rattles. You just need sunshine and running shoes.”

                  -Becca Smith

  • “Homeopathy for a neurological tremor disorder.” -Calandra Moore 

 

  • “An exorcism….no joke.” -Jillian Marcaccio 

 

  • “Lose weight and quit smoking to improve my congenital deafness because both of those decrease blood flow….” -Brianna Ebeling Butler 

 

  • “Eliminate red dyes…. they legit told my mom to not give caffeine, chocolate, or red dye and it would help.” -Lexie Moore 

 

  • “Colloidal Silver. The stuff that turns you into a smurf.” -Jason Whackolas 

 

  • “Just think ~happy thoughts~.” -Ashley McKay Brash

 

  • “I’m not kidding, I’m not making this up, my manager thinks if I find my true love my heart problems will stop.” -Rosaline Clark 

 

  • “Getting pregnant and having a kid, ‘it just resets everything’.” -Liz Gardner 

 

  • “That my joints would hurt less if I stop wearing jeans.” -Allyson Marie Sutphin 

 

  • “Taking a bath would help ease my depression.” -Caleb Rose 

 

  • “The suggestion that the medicine itself is what is making me progressively sicker, and the suggested remedy is to “just stop taking your medicine.””  -Gretchen Meunier 

 

  • “Listen to music. Calm Down. Be Happy. (Depression)” -Haylee McNally 

 

  • “I was told that just getting over it and being happy would cure my PTSD, anxiety, and depression…” -Olivia Parsons 

 

  • “I’ve heard praying or as people have told me “you’re not praying and believing hard enough”, someone even told me I must not be a good enough or true Christian otherwise I’d be cured by now.” -Ari Dennis 

 

When you look at some of the things suggested, from people with no medical experience, it just seems bizarre. If you’re one of those people who swear your essential oils, or wraps, or multivitamins will cure people who doctors are unable to cure, please reconsider.

You are only playing into the stigma that chronically ill/disabled people are just not trying hard enough to be normal/healed, and that it is our fault for being sick since we refuse to try some of the ridiculous suggestions given to us. If there was science backing it up, I would give it a consideration, and maybe talk to my doctor.

Ultimately, I trust my doctor who went to medical school over someone who believes vaccines cause autism and that holistic medicine can cure anything and that “Big Pharma” is just hiding cures for things.

So before you offer unsolicited advice, even if you have good intentions, think about whether or not you are really helping, or just hurting. Thank you.

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“Ambulance Dollars – Feeding Tube Awareness Week” by Tyler Stagman

Today’s Tubie Guest Writer is Tyler Stagman:

 

“I was warned when I agreed to the gastric tube that many people would not know what it is or how it works. I was lucky enough the first few years I had it to have a place nearby where they knew how to care for the tube, including placing it and taking care of any problems or questions I had with it.

Now that I have moved, I have found that I constantly have to advocate for myself even more than I did before, because many of my doctors are not familiar with my disabilities or how my care needs to be more hands on than most people. Every time someone has to check my stomach, I show them where the tube is and tell them not to press on it or too close to it. Most people are accommodating, but others do not take the time to care.

I am constantly surprised how many medical professionals do not know what my gastric tube is let alone how it works. I was hospitalized recently, and during my stay I received antibiotics via feeding tube twice a day. I had to teach every nurse I had during my stay how to give my medications via gastric tube. Even though I was there to get better and be taken care of, I had to teach my care team how to care for me. Most of my nurses took it very gracefully and were willing to take the time to learn. I did have one nurse who became frustrated and wanted me to just do it myself. While I understood that it can be frustrating, I was also frustrated that while I could be getting some much needed rest between being poked, prodded, scanned, and questioned constantly about my health I had to take the time twice a day to explain how to administer a medication, something I could do easily in under a minute.

Since my diagnoses I have learned two very important things: You are your biggest advocate. Do not be afraid to advocate for yourself! You are not being rude, you are not being condescending, you are telling your care team how they can best care for you! Most people admire you for advocating for yourself and do not see it as rude. The second thing I have learned is that the best way to raise awareness for yourself and about your medical conditions is to educate others. Your doctor cannot help you if they don’t know what is going on or how to handle the problem! In the interest of education and raising awareness I have made a video demonstrating the basics about using a gastric tube.”

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[Image shows a lady to the left with short brown hair and straight bangs in a sweater, and a younger lady next to her with long brown hair in a purple-ish shirt with a brown over sweater, she is smiling and looking into the camera. They appear to be sitting at a table with white cups on the table and something that is red and white checkered.]

Feeding Tube Awareness Week: What Tubies Wish You Knew

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[Image shows three spoons on a laptop keyboard. Overlaid is a clipart of torn white notebook paper with a red paper clip. On the paper in black text reads “Feeding Tube Awareness Week” with an image of a red heart with an outline of a feeding tube. In the bottom left hand corner is the logo for Thee Crohnie Grace Blog]

This week starts off Feeding Tube Awareness Week, but for me I spend the majority of my time educating and bringing awareness to such things. So I will be discussing only briefly what feeding tubes are and what they do and then I will be giving some quotes from other Tubies on what they wish people knew about feeding tubes!

So what are feeding tubes? They are an alternative way to receive nutrition when it would otherwise be very hard for someone to receive nutrition through oral intake. There are various reasons as to why people need feeding tubes. Some reasons include malnutrition from Crohn’s disease, GI paralysis from various illnesses, Gastroparesis, inability to swallow from various causes, MALS, and many other reasons.

There are many different types of feeding tubes: Naso-gastric, Naso-jejunal, G tube, GJ tube, J tube and so forth.

A Nasal tube is inserted through the nose and either goes into the stomach (gastric) or further into the digestive tract and into the small bowel or jejunum.

[Image on the left shows a white silhouette of a man with his head turned to the side but body facing forward, it shows a feeding tube as a dark blue line going down the nose and esophagus and into the stomach, then shows a lighter blue showing where the nasal jejunal tube would be placed. Image on the right shows a white feeding tube coiled up on a grey background with a red end.]

With a nasogastric tube people are often able to insert the tube themselves and remove it. With a nasojejunal tube  they are often placed by a radiologist since they must be guided into the small bowl under x-ray.

With other tubes like a G, GJ, or J tube, they are surgically placed and inserted straight into the stomach or jejunal.

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[Image shows a tan silhouette of a person with their head to the side showing a simple doodle of the stomach and intestines. It shows a direct G-Tube leading into the stomach.]

With a GJ the G tube has an extension tube that goes into the jejunal. And with a J tube, it goes just straight into the jejunal.

So What Do Other Tubies Want You to Know About Feeding Tubes?

  • “Your throat can kill you if you have a simple cold… feels like something is rubbing raw against a cut open skin when swallowing.”

“People stare at you in public.”

“When you get your tube  caught on something and you try to save it by falling or ruining something cause you’d rather not have to go to [the ER].”

“Waking up in a puddle of bile and formula…while you sleep and it disconnects.”

-Sydney Rohmann

  • “It’s okay to eat in front of me even when I can’t and to invite me to hang out even if it is food-centered. I hate feeling left out simply because they don’t want to hurt my feelings or “make me hungry.” -Elizabeth Schmidt 

 

  • “Just because someone has a feeding tube doesn’t mean they can’t eat some things orally. In fact some people (not all people) can still eat a little bit orally even though they have a feeding tube.”

“I also wish people would just ask when they have a question instead of just staring. We are still normal people. We just have a medical issue…”

-Riley Skapik

 

  • You can have a feeding tube and not be dying.
  • Anyone of any age can have a feeding tube.
  • They are not always comfortable. For some people they can be quite painful.
  • They are life saving devices.
  • It is not a scary thing.
  • It is possible to throw them up if you’re not careful. And it is not enjoyable.

 

I am a college student who has had an NJ tube over a year now, and before that had an NG tube for almost a year. Soon, hopefully, I will be getting my GJ tube placed since my nasal passages have been developing more scar tissue which can make placement harder. But I am grateful for my feeding tube helping me maintain my weight and help me stay nourished.

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[Image shows me in a blue and grey striped shirt with my hair pushed back by my glasses, my hand is resting on my face. I have my feeding tube hooked up. At the bottom in the middle is a red heart with a feeding tube outline and in white text in the heart says “I am a tube”.]