Asking for Help is Hard.

Hello! For those of you who don’t know me, my name is Matt Sotelo. I’m a proud Arizonan and Sun Devil alumnus working in the nonprofit/community space. It’s been an amazing and rewarding experience for the past 15 years. I’m a proud military brat, as my parents served 20 years each in the United States Air Force. I wanted to create this blog to give friends, family, and strangers a glimpse into what I’m going through at the moment as a kidney patient. Please read on, and if I haven’t had the chance to tell you about my condition yet, I apologize. You’ll see it’s been quite the journey thus far.  

Some Background.

Like all of you, I’ve had my fair share of ups and downs throughout my 38 years of life. One event in particular impacted me than any other – the loss of my Mom due to a heart attack in 2011. She was only 55 years old, and I was 24. Being an only child and very much a “mama’s boy,” I was devastated. It absolutely fucked me up to be honest. I tried to cope responsibly and go through the grieving process: I joined a grieving group, talked to my friends, and checked in on my Dad frequently. However, there were many days that went the other way, which included binge drinking and spending the late nights sobbing to a friend or even a stranger. I quickly learned that grieving is not a step-by-step process and then you’re done, but rather something you do for the rest of your life, and the stages can come in any order. I’ve learned a great deal from this loss, but I’m thankful to have a guardian angel by my side who knows me best. And I’m so blessed to have my Dad with me along the way – he’s seen me grow so much, and I do my best to make them both proud.

Well This Sucks.

I thought I was done with big, scary life events until 2016 came around. Throughout my life, I had been told I had high blood pressure – I first heard the term when I did my physical for freshman football at Fountain-Fort Carson High School (Go Trojans!) in Colorado. I didn’t think much of it, but in 2013, my PCP at the time put me on medication for it. By the time 2016 came around, he told me that my kidney function was low for my age. Soon after, I was sent to a nephrologist, and they confirmed that I had chronic kidney disease. I was feeling all kinds of emotions – confused, sad, ashamed, and above all, deathly terrified I was going to die.

They provided an education class, which was helpful but still filled me with fear. There’s no cure for CKD, and the only thing that would help me live is a transplant, along with eventually having to go on dialysis. Dialysis uses a machine to manually do the work of the kidneys – you go to a clinic 3-4 times a week and sit for 3-4 hours at a time while hooked up to the machine. The machine pulls your blood out of your body, cleans/filters the bad stuff, and then pumps it back into your circulation. The process can make you tired and nauseous, and overall, it’s just not fun. There is an at-home version of the process as well, which allows for a little bit more freedom but also entails a lot of very specific standards and requirements. Essentially, you are stuck on dialysis for life until you receive a transplant. If a transplant never comes, well…you all know what happens.

I did some research, and using some of the resources from the class, I tried to make some changes to keep these bad boys going. I slowed down on drinking and tried to move toward a more vegetarian diet. I went from 1-2 pills a day to nearly 15 a day to try to maintain both my kidney function and healthy blood pressure. I won’t lie to you and say I didn’t have moments of weakness. I dealt with feelings of frustration if my function went down a few points, and as I mentioned before, the feeling of shame always hung around. I would have a couple more drinks than I should have, because in my mind (at the time), if I’m going to die, then fuck it, let me at least go out having a good time with my friends. And then the next day I would be full of regret and anxiety – YOLO was not going to work long term.

Fast forward to the fall of 2024 – my nephrologist had given me kudos for maintaining my function as long as I have, but something changed late last year. My labs were steadily going down and we couldn’t figure out why. I had been better with my diet, but the pattern was showing that it was too little, too late. Up to this point, I had informed my family and close friends about my condition. Telling people about being sick was a whole other barrier to overcome. That fucking shame monster was (and is) still around. As my function dwindled from 20% to 17, down to 12, I kept the faith that something would change. In the middle of this process, I underwent genology testing for CKD patients and found out that I was genetically prone to kidney problems. On December 7^th, 2024, I got a call that my function was critically low and I should check into the hospital. The fucked up thing about CKD is there is not a lot of symptoms. I felt fine, but the NP on the phone was telling me that if I didn’t get help, I was going to be in trouble. I went into the hospital, having packed an overnight bag for one night. I was accompanied by my beautiful partner in life, Cass. She’s a nurse and explained to me what to expect. Hopefully, they’d give me some fluids and I can be back home within a day or so. Little did we know that I wouldn’t make it home until December 27^th.

Extended Stay.

After 3 days of being on fluids to try to kickstart my kidneys, the docs informed me that my only choice was to go on dialysis. I had no choice, and December 12^th was my first day. While in the hospital, I was also treated for a bacterial infection. I felt like shit off and on during my stay, including not having much of an appetite. The docs were changing up my medications as my body adjusted to dialysis and that was causing migraines. In all, I lost 25 pounds during my stay. After 10 days in the hospital, they told me they couldn’t discharge me until December 28^th, the next time a chair would open at DaVita dialysis center. No Christmas at home. To add to the stress of it all, Cassie and I had just moved in together 10 days before I checked in to the hospital, and I felt like an asshole leaving her to unpack and organize things. She would work her shift then come be by my side every evening. She’s an absolute saint and I don’t know where I would be without her next to me. She even made me and my Dad (who had come down from Colorado to be with me) our annual Christmas Eve spaghetti dinner and brought it to me in the hospital. Like, are you kidding me?! It brings me to tears just thinking about it. I’m so, so, so, grateful to God and the universe for bringing us together. If you know her, you know she's beautiful inside and out. 

Today.

I finally made it home on the 27^th and started my outpatient dialysis on the 28^th. It’s been a huge adjustment, but I’m making it work, thanks to the love and support of Cassie, my Dad, and so many beautiful people in my life. So with alllllll of that background information shared (thank you for reading up to this point!), it brings me to the important point: Your boy needs a kidney transplant. The process of getting on the transplant list would need another blog post – it’s been a lot.

A couple of factoids about a transplant:

• -          A transplant doesn’t entail me swapping out a good one for a bad one – I keep my two kidneys and then the new one is transplanted in my body. It’s a pretty interesting process.
• -          A living donor transplant has the best chance of lasting 15-20+ years, compared to 10-12 years from a nonliving donor.
• -          I am O-positive blood type and can only receive a kidney from an O-blood type.

If you’re interested in getting tested, below are some numbers and resources. Even if you and I are not a match, I highly encourage you to get tested anyway and consider being a donor. There are so many others like me in need of a transplant to live!

Here are those resources:

•           Contact Winnie Cascon, Living Donor Transplant Coordinator at Banner University Transplant Institute, to coordinate how you can get tested, even if you’re not in Arizona: 602-521-5870 | Winnie.cascon@bannerhealth.com
•           I’m so grateful for the folks who have offered to get tested! But there are things to consider if you’d like to be a living donor. Find more info about the process here: https://www.kidney.org/kidney-topics/becoming-living-donor

Coming soon, I’ll be sharing a fundraising site to help pay for the surgery and other medical costs. Turns out, kidneys are not cheap! Any help would be greatly appreciated, and I would be forever grateful. In the meantime, feel free to join me at the Kidney Walk on Sunday, April 6^th, at Salt River Fields. I’ll do my best to update this blog along the way. If you could share it with your networks, I would be truly thankful – thank you for reading, and please keep me and my family in your prayers.