Keep it Pushing

 Hi friends! Thank you for coming back to read my blog about my journey with kidney disease and (hopefully) my transplant process. My name is Matt (or Matty) and the past few weeks have been a lot, so let me fill you in. 

More Side Effects

If you've read my previous entry, you heard about my biopsy on my ankle to get treatment. The biopsy came back inconclusive (because of course it fuckin did), but my dermatologist was confident it was his initial diagnosis. Essentially, I have a buildup of calcium in my blood vessels, leading to the red and purple dots. Some of these areas have flared up and caused lesions. It's very painful, but thankfully, treatments have started, which include an injection while I'm on dialysis. I've only had a couple of treatments thus far, but I'm hopeful it'll start to bring me some relief. In addition, I had an MRI recently to determine why my optic nerve may be swollen. This has caused a random blurry spot in my eye that comes and goes. I still have my sight, but my eyes have become a little more sensitive to different lighting. Luckily, the MRI showed no tumors and structural issues. However, because it didn't give us answers, it was suggested I do a spinal tap to measure the pressure in my body. It's all just one thing after the other, but I keep telling myself to tackle one thing at a time to prevent being overwhelmed. But I'm not going to lie...It feels fucking overwhelming. 

Another side effect of CKD can be a low hemoglobin count. Mine has been low since before dialysis, and I was going into my nephrologist's office for injections to treat it since last summer. I now get a new injection while on dialysis every two weeks. In late January, my dialysis center called me to let me know my hemoglobin number was too low and I was not allowed to go in. Instead, I was told to go to the emergency room for a blood transfusion. I went, got charged nearly $3,000, and was able get back on my regular dialysis schedule. It happened again in March, and I was frustrated. Why am I getting these injections if they're not working? I can't afford to go to the hospital all the time. The solution was to up my dosage of the injection. Fast forward to this week, and on 5/14, I get a call from the dialysis center saying I can't come in because of low hemoglobin. FML. I checked in at the hospital at 10:20am and didn't get discharged until 11:15pm. It was a busy, slow day, I guess. I got put into a room around 11:30am and didn't get an update until 2pm. I hit the call button asking for an update, and they let me know they were waiting for a time to take me to dialysis so I can get my blood transfusion at the same time. And 45 minutes later, I was transported down. 

Another reason I'm so thankful for Cassandra is that she has been pushing me to be my own advocate. Going into appointments with questions, not being afraid to ask who, what, why, and holding not only myself accountable, but also the professionals working on me. I no longer dread new appointments - I go in feeling empowered. Did I mention how amazing Cassie is? Because holy shit, I won the lotto with her. 

Anyway, I was done around 7:30pm, but of course, my BP was high (classic), and they kept me a few hours longer. I'm thankful to the staff at the hospital for always providing great care, but damn, what I would do for a normal week! 

Finding Some Peace

Last weekend, I decided to drive out to California to spend time with my biological father and his family. I needed a getaway, and took my dog, Lucky, along for the ride. As I mentioned in a previous post, I was lucky enough to meet my biological father, Frank, back in late 2018. I got to meet the rest of my cousins and tias and to later in 2019. We've all been close ever since, and it's been such a blessing. For the last few years, Frank, his siblings, and my older sister, Steph, have made the 5.5 hour drive to Phoenix to visit me for dinner on my birthday. They're truly amazing, and I can't believe the love they constantly show me. We were all strangers 7 years ago! And now, I get invites to family gatherings and celebrations. Life is fuckin crazy but I'm grateful. 

So I made my way out to Cali and had a peaceful evening Friday watching my DBacks blow another lead with Frank, my tia Liz, and my cousin Skye. On Saturday, I was determined to take Lucky to the dog beach in Huntington. It was a weekend of firsts for my little guy: the longest road trip he's been on and getting to experience the beach. Spoiler: he fuckin hated the beach lol. We were surrounded by dogs living their best life, playing in the sand, jumping in and out of the water, and my dude was just at my feet, not wanting to go near the water. I did get us close enough to get his feet wet - there was no way I drove a total of 6.5 hours for this fool not to get his damn paws wet.

That evening, family and friends came over and Skye whipped up an amazing shrimp and crawfish boil. I got to catch up with cousins and learn more about my biological grandparents. Lucky was a good boy, and was asleep in my arms by the end of the night. I hit the road Sunday, though it was hard to leave. It was a great, relaxing trip, and for 48 hours, I felt just a little bit normal again. 

To wrap up, all I can do is say THANK YOU once again to all of you. Whether we're family, friends, coworkers, or strangers to one another, I'm incredibly grateful for your kindness and generosity. In two weeks, I'm nearly halfway to my GoFundMe goal, and it's because of YOU. I'm in disbelief, but what a beautiful reminder of human kindness that exists. Thank you!!

Frank, me, my tio Eddie, and tias Liz, Carmen, and Vickie.

My cousins to my right, and my younger sisters to my left. 

Lucky kinda-not-really enjoying the views. 

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. 

Lastly, if you are able, you can donate to my future surgery and medical costs here: https://gofund.me/ca3e0359. 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!