Updated: Sep 17
Bleach Can't Cure This - Nichole's Kidney Disease Story by Taler B Gutierrez B.S, M.S.H.S for BuzzFeed: "This is a piece on my mother's kidney journey. I wrote this about 3 years ago from her eyes."
“Primary Care Physicians should implement chronic kidney disease testing into their patient’s routine physical. By passing the bill requiring the PCP’s to do this it can possibly save someone’s life. Additionally, there currently is no law protective Living Donors. Living transplant donors are not covered by insurance and are required to return to work immediately after having one of their organs taken out. Why? Why is this okay? Representative Grassley, I am asking you would you feel comfortable with your loved one being thrown back into work after having their kidney or their liver removed in order to save a life? No? I didn’t think so. Well Representative Grassley, this is what is happening each day in the United States. We, the members of the National Kidney Foundation are asking for your support on passing the Living Donor Protection Act as well as the support on the passing of the bill to mandate Primary Care Physicians to implement kidney disease testing in routine physicals.”
As I speak to Represenative Grassley I can’t help but think, how did I get here?
10 Years Earlier It was a dark and stormy night; no not really it was actually rather sunny, a very nice warm day in the middle of April in Texas. It was hot as hell. However, it wasn’t all glory indoors. As I lay on the cold hardwood floor in the hallway of my home, I hear a voice yelling faintly from the front of the house, “Mommy, Mom, Mom…”. It is my daughter Taler as she is returning home from school. I hear her voice growing louder and louder however I do not respond. She stumbles into the hallway and screams “MAMA?” as she rolls me over onto my back. I hear her clearly however I am in a dazed state as vomit is protruding from my mouth and now rolling down my neck. She has tears in her eyes as she is asking me what happened. At this point she raises me up and I ask her to help me onto the couch. I had thrown up and passed out onto the floor and the last thing I can remember before Taler walked in is watching Judge Mathis. Judge Mathis would come on the television at 1 o’clock every afternoon and Taler would usually get home around 4 o’clock in the afternoon. Here I am lying on the couch questioning myself if I had been on the ground laying in my vomit for three total hours. Taler is upset, she’s crying about her freaking biology book that apparently my throw up got on. I’m in and out of consciousness and she’s crying about a biology book. Girl, really?
My daughter Taler asked me to go to the hospital several times and called my mother, Mable to ask her to convince me to go to the emergency room. Once I declined over and over my mother decided to come to my home to clean up. Once she gets to my house her and Taler clean up my house and bleach the entire house down. My mother is an old school, black woman who believes bleach is the cure to everything. Bleach can kill germs, gets tough grease stains off pans, gets rid of infection and can even cure cancer according to Mable. My mother uses bleach for everything except its original purpose, to make white clothes more white. Mable is a short, curvaceous, copper skin woman with short white hair, hair as white as the white light I was about to travel into if she used any more of that strong scented bleach in my house. She kept saying “bleach will clear all that up. Back in my day mother’s mother would’ve had you put a cap full in that bath water and you would be fine. Matter of fact go get in that tub”. There was no way in 2003 I was taking a bleach bath to cure whatever was making me feel like crap for the last two weeks.
It wasn’t until later that night my step-father Jimmie Earl made my mother take me to the hospital. He said he watched the news earlier that day and people my age, 32 were dying of heart problems and that I am already probably well on my way to the grave since Mable did the overkill with the bleach. It was actually pretty amusing Jimmie encouraging me to go to the hospital being that he wasn’t a fan of hospitals. At the time, Jimmie had an elbow tumor the size of a golf ball and refused to go to the hospital to get it removed, yet he wanted me to go to the hospital due to his diagnosis of me having heart problems. Interesting.
Once we arrived at the hospital the nurse immediately admitted me because I was extremely lethargic. The nurse wanted to draw blood, however I hate needles. I really hate needles. I asked the nurse to find out what was wrong with me without needles. I offered her to take blood from a scab I had, take the liquid from my vomit, sacrifice a lamb, anything but poke me with that long needle. She decided not to take my offerings and poke me anyways. A couple of hours passed by and it is now 2 o’clock in the morning. I will never forget this moment, the doctor came in a pocket sized, young man with a cute little baby face. He asked “Ms. Jefferson, why didn’t you tell the nurses you had kidney problems?”. I looked as confused as Hilary Clinton supporters did when Trump won the election. I explained that I did not know of any pre-existing kidney problems. The doctor explained that my kidneys weren’t working and more tests would have to be run to get to the root of the problem.
By this time my little sister Kim arrived at the hospital and was along my bedside. When we were little Kim had kidney stones so she was the self-appointed spokesperson for all things kidney, however she was just as lost in the sauce as us all. When the doctor left my bedside, Kim said “Oh girl, you just have kidney stones. You’ll pass them and be alright come tomorrow.” I believed the self-appointed kidney spokeswoman of the Jefferson family, I mean she did have three whole kidney stones and a gallbladder surgery, so she would know.
The pint sized doctor returned a hour later, “Ms. Jefferson I regret to inform you but you are in the end stage of renal failure meaning your kidneys have completely lost function and you will need to start dialysis today. We will need to conduct a blood transfusion first.” I looked at the kidney spokeswoman, my sister Kim and asked “Kidney stones? Kidney stones with no kidneys, good job Kimmy”. Tears began to roll down my face as right then I knew, Bleach can’t cure this, and bleach may have done this.
Not knowing what steps to take I called my mother and two way called her younger brother David, who is the manager of our family, yet another self-appointed title. My mother stated that she was on her way back to the hospital as she left earlier once Kim arrived. My uncle David said he would book a flight to return home for the weekend, as he was living in Minnesota at the time. I was nervous that my family didn’t understand the severity of my diagnosis, so I called my grandfather, whom is my best friend. I told him “daddy, call in the troops. I am sick, I am really sick”, so he did. The “troops” all came and we cried, we cried together. How did I get here? How does a 32 year old working mother get sick all of a sudden and loses function in both her kidneys?
Over the next few months life was hard, life was very hard, but life had to go on. I underwent countless surgeries in order to determine if my kidney function would return. I underwent surgery to place a catheter in my neck. That damn bleach can’t cure this! I would have dialysis three times a week which was the process of filtering my blood and placing it back into my body. During each treatment the nurses would tug at the catheter on my neck when hooking me up to the machine. It hurt every single time. I screamed every single time. It wasn’t worth it. It wasn’t worth the pain. Each day I took dialysis I would feel lifeless and question why, why me? In the dialysis center’s most of the patients are elder people, and here I am 32, one of the youngest patients, how did I get here? Did I not use enough bleach? Life was once enjoyable and now just waking up every day is depressing. I wanted to die. This was not the kind of life I imagined for myself or my daughter. My daughter was watching her mother suffer daily and she saw the pain in my eyes. I was better off dead I thought.
During this kidney drama, my nephrologist was a man by the name of Dr. Hunt. He was the human version of the children’s book character Teddy Ruxpin, practically twins. I complained daily to him that I just couldn’t take anymore needles so he introduced me to peritoneal dialysis which is home dialysis. The process would be a tedious and very sterile process but would allow me to have my dialysis treatment at my home and without needles. Peritoneal dialysis was no cake walk however it was more comfortable than hemodialysis, with the needles. My daughter would “hook me up” to the dialysis machine at night before we went to sleep and I would receive my treatment for eight hours overnight. This dialysis was easier however I blew up in size like a blow fish. I gained so much weight and my appetite was out of this world. I started to crave things I never had interest in before, such as Chuck E. Cheese’s pink cotton candy. It had to be pink and it had to be fresh or I couldn’t stomach it.
About 4 years passed and life on dialysis is having its ups and downs. One day I feel like dying, the next day I feel like living and wanting to see my daughter graduate college. I was started to go into another depression and questioning my very existence, when the summer before my daughter’s junior year of college we receive a phone call in the middle of the night. The voice on the other end of the phone said in a rushed yet excited voice “Nichole, we got you a match. Get down here to the hospital now.” Taler called my mother and she rushed to my house to drive me to the hospital. Once I arrived to the hospital the nurses immediately prepped me for surgery and next thing I know I am waking up in so much pain, yet so much relief. In the recovery room with me was a man named Joe. Joe was an older, short and stocky Hispanic man that was accompanied by his daughter. He glanced over at me and said “so you’re now my sister, I received the other kidney last night as well.” So many emotions came over my body as I was happy, yet very emotional and sad. In this kidney journey I never wanted to receive a kidney from a person who died. How could I take something from someone that didn’t make it? My donor was a young woman I was told and that made it even more difficult to take. Bleach couldn’t cure the emotions I felt.
With my new kidney I started to take control over my life again. No more dialysis, no more weird cravings and most importantly no more needles, for the most part. I was even able to manage to lose 75 pounds and get to a size even smaller than I was before my chronic kidney disease. I got actively involved in the National Kidney Foundation and even returned to work. I was able to see my daughter graduate from college and even manage to start college myself. In 2013 I attended my first National Kidney Foundation Advocacy Summit representing the state of Iowa. I went to Capitol Hill to speak with congress about kidney disease and passing bills for prevention.
Bleach didn’t cure my kidney disease; however bleach did give me a better outlook on life. For every action there is a reaction, and just like bleach, kidney disease gave me a fresh start. Kidney disease allowed me to start life with a clean slate and take control over my destiny. I felt defeated so many times and wanted to give up, but life itself wouldn’t let me; just like bleach doesn’t let stains remain. Bleach didn’t cure my kidney disease but bleach gave me faith.
10 Years Later “Thank you Representative Grassley. We appreciate your support and I look forward to working with you and congress in the future. I will see you this time next year. Here is one of our pins, remember to donate life, you may save someone’s life one day. Have a wonderful day.”