Helping others through their transplant journey

Hello everyone. I thought I’d start filling up my blog more and show everyone exactly what I’ve been doing over the last year. It’s been a year where I’ve personally have been incredibly lucky with my issues despite having increased joint pain and still managing my mental health through everything. I’ve had my creatnine go up throughout the year, but still in a manageable sense. I go get labs tomorrow morning and see my Nephrologist on Monday so we’ll see where I’m at when that time comes. But all in all it’s been a building year. I’ve built a good few new friends in the kidney community and been helping a good few folks with guidance on their journeys. It’s not all good news either, and maybe that’s a point I need to get across on here for many readers who are unfamiliar with just how random and tough this life can be for all of us struggling with different forms of transplant or transplant related illnesses and issues.

Let me start by telling everyone how I find these folks. I do a ton of networking through Facebook when it comes to finding people. It’s where I put out all my info when I was looking for a donor myself so I know that’s honestly one of the best places to find folks to help. I’m in a position where when I am feeling okay and not dealing with my personal issues too much in order to “help” folks by listening to either them or the parents of the children who are facing if not exactly what I had, something very similar. I start off just listening which is something many people don’t get. If you haven’t personally dealt with a particular issue you’re rarely going to have an inside view to their world, their problems or feelings. But since I have, It gives people a sense of understanding in a world where 99% of everyone around them doesn’t. I’ve been told many times in private messages how much I’ve given hope to folks who had little. I can’t even describe the feeling or purpose that gives me which is why I do it so often despite juggling my issues with theirs. So let me tell you some stories about a few of them.

There was a young women here close to where I live in Bastrop. She was born with PKD which slowly destroyed her kidneys. Her name was Kendall Alverado. I went to a fundraiser for her in Bastrop in 2017, she had an amazing support group and family. She had a great awareness team. She was on dialysis for 9 years and was hoping to find a kidney but unfortunately she passed away only 2 months after I had met her. That was the first time in my life I had helped someone and just as soon as I knew them they were gone. It messed me up I won’t lie. It wasn’t until that moment in my life I started really reflecting on just how lucky I had been my entire life. And I still to this day carry a little bit of that sense of why me? Why am I still here to tell my story and so many who are so young don’t even make it to half my lifetime. It definitely makes you think I’ll leave it at that.

Another person I’ve tried my best to help is a young man named Ezra. He is to this day the only person I’ve known to have been born with PUV like me. Which just goes to show how rare it is. He’s also just turned 8 by the way and had to be in the hospital for that. He just received a kidney transplant last year and is now dealing with pretty much a copy of my journey unfortunately. He’s having to worry about rejection and now PTLD just like me. But I watch his journey and he reminds me so much of myself. No matter how much crap it seems like the world wants to dump on him he has a smile and great attitude through it all. His mom and family are just as much troopers for having to cope and deal with all this as he is. It hurts to sit on the sidelines and not be able to do more, but I suppose that’s exactly how my parents felt through it all and now I get that perspective more and more. His story is just one of a few I know where I’m starting to see the resilience in people like myself. I see so many kids who fight so hard just to be here like everyone else does. And I know those kids will have a very unique perspective on life that many can’t even fathom.

Another incredible kidney warrior I’ve gotten to know in the last year is an amazing young women named Katy. She’s been through hell and back and still knows how to keep those around her smiling. She has an attitude about things I have almost never seen in a person. Despite having to go through dialysis all the time and having to put up with the extra health issues that have popped up alongside she just keeps the best attitude about everything I’ve ever seen. Like everyone else I’ve known to deal with this she has the most amazing support group and family keeping those spirits high. Her mom is incredible and reminds me of my own. We talk a good bit about everything and it makes me feel better to also know someone who’s seen and dealt with much of what this transplant world entails. Katy is truly an inspiration and I always pray she finds a kidney soon!

Another young little man who’s been through the ringer is Conrad. I little boy no older than 3 but has captivated many into helping his family out with his kidney transplant. He’s been on Good Morning America and several other TV programs trying to get his story out. I’m so relieved to say he received his kidney transplant on March 15th of this year, my 35th birthday. His parents have reached out to me after I’ve contacted them and they say this exact blog has given them immense hope for little Conrad. And I hope and pray that continues.

Another young man I’ve helped support over the years is known around as Mason the Mighty. He received his transplant in 2019 via the exchanged pair program. I’ve talked many times with his parents, Erica and Rich and they’re just another incredible couple with a little one who needed support to get his story out and to continue in good health. They’re just another couple out of many I talk to on a frequent basis to try and raise awareness.

Another great person I just met last year was Matt. He was looking for a kidney transplant here in my own hometown of Elgin. We got along right away and meet up once a month to discuss our health, drs, whats exciting in the world etc. He finally received his 3rd kidney transplant in February of this year. I was beyond happy. In the last year alone several people I know finally got the gift of life they had been waiting years for. We still talk often and will hopefully be lifelong friends. He’s still to this day the only other person I’ve ever met in my life personally who had a kidney transplant.

So there’s just a few examples of people I’ve been helping besides worrying about my own health problems. I know there will be a time where I’m not going to be feeling great half the year and going to need support again myself. So I’m just trying to pay my gift and knowledge forward for now while I am in a better position. I know things can change in an instant as well so I never truly have a feeling that everything will be fine. I know I’ll need my knee replaced soon. I know AVN is lurking somewhere else if not a few places. I don’t feel as if my cancer will remain in remission forever either. I’m living on borrowed time, always have been. But as long as I’m here I’m gonna keep helping and spreading my story to help others. I’ve done all of this site myself besides the banner my great friend Will put together for me. I’m still self teaching myself how a website works. I pay for it all despite being on disability. I spend much of my time helping someone if I myself am not swamped with insurance and Dr calls or appointments. This is what I spend most of my time doing. It’s a stressful experience but well worthwhile. I’d also like to remind everyone that this blog and my story are in the book Slow it Down CKD 2022 by Gail Rae-Garwood.