‘90% of your kidneys are scarred.’ I was terrified and in denial. Somehow, my body had betrayed me.’: Man details journey with Stage 5 Chronic Kidney Failure, ‘I am a fighter’

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“My name is Ish Mendoza and I am 28 years old. I currently live in the southern suburbs of Chicago with my husband and two kittens, and I was diagnosed with Stage 5 Chronic Kidney Disease 6 months ago.

I recently started dialysis and have officially begun the process to get a kidney transplant. This is my journey toward the transplant and surprisingly, it doesn’t actually start with me. Kidney failure is nothing new to my family or myself. Unfortunately, we have dealt with it since 2004 when my mom’s younger brother was first diagnosed with kidney failure. At the time, he was only 15 years old and I was 12. We were so close in age he was actually like my older brother and my parents legally adopted him when he got sick.

Courtesy of Ish Mendoza

My grandparents were older, and my mom tried taking on some of the stress they were going through by adopting her little brother and taking care of him in regards to insurance, doctor appointments, and his own process of a kidney transplant. We used to share a room and he would do peritoneal dialysis which means he plugged himself in every night for 6 to 8 hours while a machine cleaned out his blood.

I have vivid memories of how sick he used to get during dialysis. He would get nauseous and get really bad cramps. I remember staying up late at night trying to make him feel better because he was so upset and in such discomfort he was unable to sleep. After seeing my uncle going through so much at such a young age, I remember thinking to myself, ‘If I ever experience kidney failure, I will not do dialysis and just let myself die.’ 15 years later and here I am, in a similar situation.

Courtesy of Ish Mendoza

Sadly, my uncle was not as physically healthy as I am and at the young age of 19 years old, he took his last breath. He was so close to transplant, but his potassium and phosphorous levels spiraled out of control, causing him to go to the hospital and he never made it out. Skip ahead a few years, one of my cousins (same age as me) is also diagnosed with kidney failure. He battled the disease for 3 years, but he too lost his battle, leaving behind his wife and son at the young age of 26 years old.

Unfortunately for my family, my uncle and cousin were not the only family members we lost to this disease. My oldest cousin was diagnosed in 2018 and died a year later at the age of 31. He too left behind a wife and kids. I know it sounds a bit too extreme so far there have been three deaths related to kidney failure in my family, but that’s not even all of the cases. I have two more cousins, brother and sister, currently on dialysis and also waiting for a transplant. Thankfully, they are doing better than our other relatives were, and I hope and pray all three of us will make it to our transplant.

Courtesy of Ish Mendoza

Surprisingly, the doctors working my case seem to be divided on the issue of whether or not its genetic. One doctor says, ‘If it were genetic, it would have affected all of them as children.’ With the exception of my uncle, all of my cousins and I got diagnosed in our mid-late 20’s.

In November of 2019, I started feeling a lot of pain on my right foot. At the time, I was working two jobs, one as a bartender and the other as a barista, so I just figured my foot was exhausted or hurt somehow from working 12 plus hour shifts. The pain eventually got a lot worse and I had to leave for 2 weeks. I went to a podiatrist and to my bad luck, I was misdiagnosed with bursitis. I was given a steroid shot and the swelling and pain went away after a few days. My foot was still sore for the next few weeks, then, after a few months, it felt normal. Then, in June of 2020, my family and I decided to go hike the Smokey Mountains. It was a very painful experience I will not forget any time soon.

Prior to hiking the mountains, I had been experiencing terrible cramps at night and while hiking, those cramps only intensified. It was a 12 mile hike that was only supposed to take a few hours, but instead it took about 9 hours due to how much pain I was in and how hard it was to walk. After getting home from the trip, my foot once again swelled up and this time, I decided to go see a different podiatrist. There, she told me, ‘You probably have gout,’ and sent me to get lab work done.

Courtesy of Ish Mendoza

The next morning, I got a voicemail telling me, ‘You have to go to the hospital because your lab work showed your creatine levels were ten times the normal amount.’ (0.7-1.2 mg/dL is normal, mine were 11.2 mg.) I was hospitalized immediately, and the doctors did a biopsy of my kidney. They found 90% of my kidneys were scarred and they were only working at a 6% GFR (filtration rate). In order to get on the transplant list, you need to be at least at a 15% GFR, and I had long ago passed that point.

At stage 5 of Chronic Kidney Failure, my nephrologist wanted me to immediately start dialysis. I was terrified and in denial, all I could think of was how miserable my uncle was while he was on dialysis. I refused to go on dialysis for a total of 3 months. I did so much research and switched my diet completely around and started following a vegan diet and quickly lost 25 pounds. I thought that would be enough to keep me out of dialysis but toward the end of September, I started having trouble walking.

I went to see my nephrologist and I decided it was time to start dialysis. I remember the day I went into the hospital to get the catheter in my chest. I sat in the car with my husband and I was crying. I was upset and I felt like somehow my body had betrayed me. I felt like my life was over and I was terrified just thinking about how once my family members went into dialysis they never made it to their transplant.

Courtesy of Ish Mendoza

The first week of dialysis was the roughest. I had just gotten out of surgery and they sent me straight into my first session. I got nauseas and overheated and, in that moment, all of my fears about dialysis were being confirmed. After leaving the hospital, I started doing my sessions at a clinic and the very first day there was also a rough one.

Thankfully I am doing so much better now. I go to the clinic three times a week and I get plugged into a machine through my chest for 3 and a half hours. I recently got a fistula put in my arm, which means they fused a vein and an artery together to create a super vein. Once my fistula matures, they will remove the catheter I have in my chest, since it’s super high risk and prone to infection.

Courtesy of Ish Mendoza

On December 7, I finally had my first appointment with the transplant team to get the process started. So far, I seem to be a great candidate for the transplant. I recently started a GoFundMe account since the team told me, ‘You will be taking medication for the rest of your life and it is very expensive per month.’ I also found out insurance won’t cover all of my bills, so I have to come up with the money myself. I have been off of work since June 2020 when I first went into the hospital. Starbucks is a great company to work for, they have given me a 6-month medical leave and helped me with some money. I am finally going back to work in January since my numbers are getting better and I am able to do more now.

One of the main things that has really helped me get through this is my art. I make pet and human portraits, but my most requested commissions are hand painted shoes. I love art, but I was always so busy working I never had the time to focus on it. I feel like, in a way, this disease has been a blessing in disguise. Ever since being home I was able to start my own business selling my art. It’s not much but it has helped me during these hard times.

Courtesy of Ash Mendoza

I have also become a lot closer with family and friends and I am beyond grateful for them. My parents and siblings have been so amazing and supportive, constantly checking up on me and buying me groceries or supplies I may need. My husband has been such an amazing support through all of this. He drives me to all of my appointments and helps me with picking up my medication and making my food according to my diet restrictions when I am unable to do so myself. In the beginning, he was also taking me to dialysis for all of my sessions but now I am better and strong enough to drive myself to and from.

Courtesy of Ash Mendoza

This year has definitely been rough, and it completely shook my life up, but it also taught me how strong I can be and how fortunate I am to have such an amazing support system. I used to think my biggest fear was to die on dialysis while waiting for a transplant, but I now realize my biggest fear is losing that fire to keep fighting. I am scared of feeling so helpless I see death as my only way out and unfortunately, I have seen this in the eyes of many other patients at the clinic. I am a fighter and I will not stop until I get my kidney transplant.

I hope to one day start a non-profit to help others like me who are trying to survive this illness. My uncle and my cousins didn’t get the opportunity to see this through, but for them and for everyone else that left us in the process, I will try my hardest to achieve my goal and survive Chronic Kidney Disease.”

Courtesy of Ish Mendoza

This story was submitted to Love What Matters by Ish Mendoza from Chicago, IL. You can follow his journey on Instagram. Submit your own story hereand be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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