No fair. No fair. It’s not fair.

Butterfly needles. IVs. Bedpans. Noisy medical machines. Gauze. Alcohol. Frigid stethoscopes.

There’s no rest, there’s no privacy and there’s no promises.

There is however worry, uncertainty, anger, and fear.

This. This is how it feels to be a perpetual, continual, regularized chronically ill patient.

 

You sit and lie in the hospital bed or emergency room for hours and hours on end waiting to get your vitals taken, your labs taken, keeping conversations with hospital staff at surface level, seeing other patients suffering. You wait for hours to talk to your doctor for 2 minutes reporting how well or inadequate your condition is and the limited options there are to fix it. Most of them being painful where you’re poked and prodded like a science experiment then wrapped in gauze and tape like a Christmas present. Thus, leading to self-doubt and self-questioning of if you were able to prevent this or what you did to deserve this. Your phone keeps lighting up from the messages and calls you receive from your loved ones asking about the most recent status and you may or may not have an answer. You get to lie there in the uncomfortable rigid bed staring at the ceiling as your loved ones continue looking for cures, they can’t provide. You continue to observe them helplessly fumbling around the room performing services to comfort you and occupy themselves knowing their head is filled with worries. You wish you could ease their pain too as you notice all the exasperating feelings, they’re trying to hide that you can’t comfort cause your body is too busy being in pain.

 

Test after test after test. Next are scans, then pre op, then you finally get to go into surgery. Where instead of a nice beach view or even the comfort of your own living room once was, you get to be in an incredibly freezing room, placed onto a stiff board, arms secured down and busybodies filling the room speaking medical jargon that just confuses you even more.

 

Being a human is not easy, surviving daily tasks can be demanding, but when your own body is failing, and you can’t do anything about it but be trapped in it is probably in the top ten worst betrayals to be in. We already have no say in what bodies we are born into and there aren’t days that you can just choose to not deal with it and do whatever you want. You’re never sure if today or the next day is going to be a good symptom free day.  Every single day is a battle and every single day you’re just wishing that you can survive and stay alive.

 

My name is Joana Mari Narvarte. A name derived from my loving parents. I am their first daughter, I am the oldest sibling, I am the first granddaughter and the first niece. I am the first chronically ill individual in my immediate family. And we don’t know why.

 

I can write about how unfair it is that my family and I are in this situation. I can write about how hurtful it is to constantly question why me. But instead, I choose to embrace this experience as an opportunity to show myself and others that life may not always be fair, no one said it was going to be. It is what we choose to do with it, who we spend it with and how we leave this earth that matters.

 

I have been sick since I was fourteen years old. Fourteen. A time where I should be developing my identity, beliefs, forming social connections and emotional growth. Instead, I’m gaining different diagnoses, seeing endless doctors, and suffering painfully lasting symptoms. I had my first seizure. A seizure of all things! I went from only having a cold once a year to a whole seizure. And this was only the beginning.

 

Over the next few years, I would become very familiar with emergency rooms, hospital stays and doctor visits. I experienced fainting spells, joints swelling, high fevers and gastrointestinal problems that led to meeting with 5 different specialists that consisted of a Nephrologist, Hematologist, Gastroenterologist, Neurologist, and a Rheumatologist each with their own prescriptions, treatment plans and many appointments. It was exhausting for my family and I. By sixteen years old I was experiencing my first surgery for my hemodialysis catheter to be placed as I was finally diagnosed with End Stage Renal Failure and Crohn’s disease. Ahh finally an answer and concrete solution to why I was feeling the way I was. Although it provided some relief to be given a condition, it just solidified how ill I truly was.

I remember my first dialysis treatment session. My nurse showed me the machines, walked me through the process and explained every step of the procedure. But I couldn’t focus on her words and felt my eyes wandering such unfamiliar territory. There were other patients there, patients younger than I, in worst conditions than I and I couldn’t help but feel guilt and shame all over my body. It was painful and heartbreaking seeing us kids in such a predicament. These were other people’s daughters and sons connected to machines in hopes they too would find a kidney soon to help them live. Once I was finally in the chair, and my catheter and machine became one, I didn’t move a single inch for the next three hours. My hands stayed folded, feet together and eyes hyper focused on the spinning machine. I sat there scared, I sat there with my thoughts, I sat there hoping this wasn’t going to last for too long. Oh how I didn’t know the loud beeping machine, the color of red in tubes and view of other suffering patients would become familiar territory for the next three years.

 

Moving time, oh how I loved moving. Moving meant new opportunities, new people, and new environments. My family and I were moving to California from Las Vegas as I had just finished high school and was now entering college. I was filled with excitement because college was a brand-new start, and I could be a brand-new Joana. I always had a strong interest in academics and enjoyed the challenge that courses brought. Even when I was a young girl, I knew my academic career was going to go far because I was going to put the effort needed to become successful no matter what. I began my first year and found myself unable to walk between classes efficiently. I was experiencing dizzy spells, my limbs feeling numb and my dialysis treatments not getting any better. I knew this meant another dreaded doctor’s visit. We were informed that my kidney function was now at 5% and a kidney transplant was vital or else I would have to insert a fistula into my frail arm. My family and I were devastated. It felt like we were backed into a corner but three years of 9-12 hours of treatment every week was finally enough.

 

On August 28, 2013, my mother graciously and selflessly donated her kidney to me at Stanford Medical Center. I was so grateful; my parents and family were so relieved, and we could finally breathe. No longer did painful symptoms consume my days, no longer did I anticipate the next sick day that would prevent me from completing my goals and no longer did I have to sit in that rigid chair to complete my dialysis treatments. This moment allowed me to live life again for the next 9 years. 9 years of not being ill, 9 years I put into my education and earned myself an associate degree, a bachelor’s degree, and a master’s degree. 9 years I was able to travel around the world, spend time with friends and family, and experience life outside the hospital room.

 

This all came to an end in March 2022 when I entered the emergency room doors for yet another symptom. It was there I was informed that my donated kidney, the piece of my mother that I carried, was now failing. I couldn’t believe it, I felt like a failure for not being able to carry my mother’s kidney longer. Now there’s no promise that a donated living kidney would last forever, all doctors ensure to tell their patients that and on average it could last 20-25 years from a living donor. I surely thought it would’ve lasted longer than 9 years. Next thing I knew I was immediately in surgery for a different type of dialysis called peritoneal dialysis where the catheter is placed in the abdominal cavity.  My days turned from being able to participate in many fun activities to 8-9 hours of treatment every single day, still working full time as a Marriage and Family Therapist and a Professional Clinical Counselor at a job that had me commuting 1.5 hours back and forth.

 

At first it was doable. I was able to juggle this demanding schedule and still try to be the bubbly upbeat Joana that everyone knew. Only my immediate family and close friends knew that I was chronically ill again while I continued to hide my illness at work. I always had an issue with others knowing I was sick because of the pity that I received and that wasn’t anything I wanted from others. Even when I was sick the first time around it was never a good feeling to be on the receiving end of sorrowful eyes and distressed change of tone once they found out. So, it was no better this time around. The peritoneal dialysis couldn’t keep up with how fast my illness was progressing and my condition became worse.

I experienced fluid retention that would swell up my legs, it made it hard for me to breathe and my blood levels were so low that it left me depleted. Instead of completing healing work with my clients I became a patient again. I would be at the hospital weekly, getting weaker and weaker requiring blood transfusions, a variety of medications and a repeat of testing. Every single day it was a gamble to see whether I was going to experience a handful of symptoms or few enough that I could experience a decent day. All I knew was that I was not getting better.

 

It’s hard to believe that I’m here for a second time. As if the first time was not enough to teach me lessons, to help me mature, to see life as challenging. Nope, here I was faced with End Stage Renal Failure, heart failure because my heart was overworked dealing with the ESRD and back on hemodialysis. This time I’m an adult, an adult with responsibilities and in a space where I am building a life, a career, and my future. I didn’t have time for all this illness, but who does? In order to keep moving on, I had to complete open heart surgery to fix my mitral valves and tricuspid, I had to insert a hemodialysis catheter in addition to my already placed peritoneal catheter and continue to take daily medications. Now I complete three-hour dialysis treatments 3-4 times a week.

 

It is no easy feat to try and look at this part of my life through a positive lens, but this time is different. Yes, my illnesses are more severe but now I don’t carry that same shame and guilt I did the first time around with those diagnoses. Now I welcome the love and support from others in asking questions and wanting to know what life is like as a kidney and heart patient. And now I try to face every day as it is and have a positive outlook because I know that I still have an amazing life despite this setback and that things could be much worse. This time around I’m not scared and want to use this experience to bring awareness and help to those who may be in the same predicament.

 

I choose to believe that this happened for a reason. Not everyone could deal or survive with this illness and yet I am still standing strong. There is purpose in the suffering because it’ll help me appreciate the joys of life that much more. I am eternally grateful that my mother was able to donate her kidney the first time around, and I’ll be just as appreciative when the second kidney comes. Whether the donated kidney comes from a living or deceased donor I would be lucky to even be considered for it.

 

People always ask me how I do it, deal with the sickness, deal with the demands of it and continue day to day and my answer is this:

 

Life may not always be what you planned it to be or be easy. We may not always be faced with what’s desired, or even born into what we imagined for ourselves. There is so much out of our control and as humans, we naturally do not like uncertainty. But we figure it out as we go, pushing through the fear, learning from our mistakes. It is not easy and it’s not always fun. But I choose to try and make progress where possible and find peace in the way I deal with each problem. I value all the things that bring me joy and try to not be so hard on myself because life is hard enough. Happiness is something you create. I must believe better for myself and not overthink the situation I’ve been placed in. My peace is more important than understanding why something happened the way it did, so I accept it for what it is. It’s better to be a good person with a good heart that can spread joy with others than to sulk in sadness for the situation I’ve been put in. I always carry an awareness that life could be a lot worse while still acknowledging that mine has its tribulations. I continue to fight my illness and carry all the faith that it will get better eventually.

 

I am spending time with my family as I recover and am slowly but surely returning to life with another new normal. My body is covered in scars, but I am proud of them as it reminds me of the strength it took to get here. I am honored to do my part in spreading awareness and educating those about these diseases and will continue to do so for the rest of my life.

My family and I continue to bring as much education and awareness to the community around us in hopes to help those who may be going through similar situations. If our story could even provide the smallest amount of optimism for an individual suffering from a chronic illness, then it would have made this journey worth it.

 

Thank you for spending a moment to hear from a patient and her journey.

Joana Mari C. Narvarte

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