Hurry Up and Wait

 Hello! Welcome to my blog about living with kidney disease, and my hope is to find a transplant donor soon. It's been filled with ups and downs, and I'm just trying to hang on during this crazy ride. 

Some Updates

If you're all caught up to this point, you know that along with going to dialysis three times a week, I'm also dealing with several side effects of kidney disease. I've continued treatments for the spots and lesions around my ankles. It's still painful and annoying, but I've had some relief. As for my eye situation, unfortunately, not much has changed. I was told I need a lumbar puncture (spinal tap) so they can measure the pressure in my head to see if that's the cause of the swelling of my optic nerve. I was told I need it done ASAP and that the order would be sent in. Spoiler, it's been damn near 6 weeks and come to find out the doctor's office never submitted the authorization paperwork, so I am stuck waiting again. Yay, American Healthcare system! I'm hoping I can get it scheduled soon. I recognize my privilege in being insured and able to help with these specialists' costs, but if navigating the system is this difficult and I have to speak up for missed things, I can only imagine how hard it's for others who are uninsured or underinsured. My heart goes out to them, truly. 

#Dialysis-selfie

Another update is I've had a handful of family and friends get tested! A few have made it to some additional tests, and I'm humbled that they would even go through the process. I'm praying for a match and some good news, but it's a lengthy process. If you're interested in getting tested, please do feel free! Some folks might be a better match for me than others, and that only increases my chances for survival and sustainability of the new kidney. I can't thank those of you enough who have gone through the testing process! 

Extending the Search

When I was in the hospital back in December, I started the registration process for the Mayo Clinic list. It took about two months for the nephrologist's office to fill out the necessary paperwork for a referral. From there, it takes about 90 days for Mayo to review and decide that you can go through their evaluation process. So, finally, I was invited to do evals all day on June 5th. The day consisted of labs, EKG, ECG, a chest x-ray, and a meeting with a provider. The appointments took me from building to building and floor to floor. Let me tell you, Mayo is niiiiice! Not just the buildings and equipment, but the compassion and care the healthcare team emits. It was a pleasant experience, and I hope to hear an update from them soon!

Finding Joy...

Lately, I've been trying to ignore and mask the depression by returning to some of the things I truly enjoy. A few weeks ago, my friends invited me to the Kendrick Lamar concert in Los Angeles, and I just had to find my way there. I was able to find a plane ticket and was treated to an amazing show. Kendrick is one of my favorite artists, and I've gotten to see him perform several times throughout the years. Justin Bieber even made a cameo at the show, performing a duet with SZA. The next day, I headed to my older sister's place, where I got to hang out with her new German Shepard puppies. I didn't get to see her and my sister-in-law the first time I visited a couple of weeks before, so it was perfect! I enjoyed lunch with Frank and his wife, Irma, and just relaxed the rest of the weekend. It was a nice getaway, filled with family, love, and cooler weather. 

Before the Memorial holiday, our Hispanic Leadership Institute - Phoenix class graduated! I oversee the program, and I couldn't be more proud of this 2025 cohort. It was a great evening of celebration, and a welcome distraction from what I've been going through. Arizona has some amazing emerging leaders who will make a positive impact in our communities! 

Next, I went down to Tucson to see my goddaughter perform at her ballet recital. This is the 5th year or so of her performing and she is so damn majestic. She and her little sister (who is also a ballerina) are my world, and I'm grateful for every chance I get to see them. The bonus is getting to catch up with their parents, my cousin Charles, and my comadre Anabell. 

Nino tings

This past weekend, I treated myself to a comedy show in Tucson and caught up with a great friend from college. The next day, I decided to go to the Phoenix Mercury game. Although they lost, it was a great opportunity to spend time and catch up with one of my best friends and fraternity brothers - shout out to Mac Ice! Finally, on Sunday, I did a quick round of golf (9 holes) with friends. It wasn't too hot out yet, thankfully. In the evening, Cassie and I went to the Tyler Childers concert, thanks to a great friend who gifted us their tickets. It was a terrific show, but a little warm outside at the venue. 

...But in Moderation

Monday came around, and I went to dialysis. Everything went smoothly until after I got disconnected. I was gathering my things when I felt dizzy. I felt myself about to faint and I tried to lean forward, but it was too late - I fell backward, bumping the back of my head on the floor. I came to after about 5 or so seconds. The team of nurses was great in checking if I was okay. I felt embarrassed more than anything. They called the fire department, and the guys were super nice. They checked my vitals and did the tests, and I was doing okay. The conclusion was that I was dehydrated, and mixed with dialysis, my body had taken a toll. I'm thankful to be okay and grateful for Cassie being able to pick me up and keep me in concussion protocol to make sure there was no damage done. It's a great lesson that my body doesn't work like it used to anymore, even if I want to do the fun stuff to better my mood. I need to be more mindful. It's okay to rest and slow down; in fact, it's necessary for me. I'm feeling better now, and today's dialysis went on without a hitch. 

As always, thank you for following along on this ride! I'm grateful for the well-wishes, the kind texts and phone calls, and of course, for the donations. I'm truly humbled, and what a great example of how blessed I am. Thank you all! 

Resources

If you're interested in getting tested to see if you're a match for me or to see if you're a match for someone else, reach out to 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. Also, if you're considering being a living donor, check out the link below for more information to consider: https://www.kidney.org/kidney-topics/becoming-living-donor. 

And now that I'm in the process of being listed at Mayo, you can visit here to go through their process: bit.ly/3T8D56R. 

Lastly, if you are able, you can donate to my future surgery and medical costs here: https://gofund.me/ca3e0359. If you'd rather, you can donate to my Venmo: @Matty1786. Sharing my blog and the GoFundMe link are also options to help spread the word. I'm forever grateful for your love and support, and I will keep you all updated again soon!