Brian Lizana
I was born with a hereditary chronic kidney disease called Autosomal Dominant Polycystic Kidney Disease. I did not know growing up if I had it but, shortly after I graduated with my bachelor’s degree, I got my answer. A routine medical exam for a job revealed some irregularities, and while it needed to be officially confirmed, I immediately knew what was going on.
My treatment, and generally the impact on my life, started easily and minimally enough as just some monitoring of labs and scans. Over time, though, symptoms got worse, and it started to look like I may eventually need a kidney transplant. Several years ago, a sudden and severe onset of symptoms prompted several trips to the hospital, and I had an emergency radical nephrectomy performed with what was likely just hours to spare. I also had an appendectomy and other small procedures completed to repair the damage the kidney had done before it was removed.
With just the one (diseased) kidney left, my already reduced kidney function dropped even lower, and I was told I would probably need to start dialysis within one month. I was fortunate that did not happen, at least not then, and I started going to much more frequent medical appointments, keeping a very close eye on all my numbers. As the conversations with my nephrologist began to turn more to dialysis and transplant, another round of hospitalizations revealed that things suddenly were much more urgent. I enrolled with the Ochsner Multi-Organ Transplant Institute and began the long and arduous process of transplant recipient evaluation.
I was eventually approved for listing as a recipient candidate and began to read about the relatively small percentage of people who register for organ donation, and the shockingly large number of people waiting on a life saving transplant.
Being actively listed for an organ meant even more medical appointments and lab work, just to maintain my listing. All the while, my kidney function continued to decline, which added more appointments and treatments to manage all the secondary problems a failing renal system causes. Trying to keep what little kidney function I had, and maintaining my status on “the list”, became what felt like another job in addition to my actual full time job; just about every single day I had off from work was dedicated to something kidney related.
Everything going on was significantly affecting my ability to work, in any capacity, but certainly in my line of work. It became clear to me I would need to try to find a living donor. Despite the obvious need, this was a difficult decision for me to make; it meant giving my health problems some publicity. I am an inherently private person, and the thought of not only putting my personal medical information out there, but also having to ask someone to do something so personal and so significant, was deeply upsetting. Even typing this up is outside of the norm for me, but it is a story worth telling, especially if it encourages people to register to be donors.
My campaign to find a kidney started in earnest and some friends helped design a flyer to post on social media. The flyer started making the rounds there but also through a professional organization at work with members across the state. I was contacted by several people who very kindly decided to at least inquire about the testing process. Over a period of a couple of years, I had three people who had the blood test done and were found to be compatible. Unfortunately, each of them was disqualified/removed during the secondary phase which, among other things, requires a lot of additional medical screening.
I was and am still thankful for each of them being so thoughtful and willing to give the process a try, but each disqualification/removal was very tough. Throughout all of this, my kidney function crashed to critical levels. Aside from all the physical pain and other symptoms, which I’m not trying to dwell on, my health was a significant contributing factor in a major career advancement not only being halted, but actively undone. I was able to finish my master’s degree, which I had started about a year before I lost my first kidney, but my work itself took a big hit right alongside my health. It was all very disheartening, to say the least.
My nephrologist and I started to make plans to start me on dialysis. I was still looking for a donor, but the ability to “just wait a little longer” was coming to its end. Dialysis was a deeply upsetting thought for me. It can help keep you alive, but it is certainly no guarantee, and the quality of the life it helps you maintain can be minimal. Aside from dialysis itself not being a pleasant thing to go through, the physical implications and the scheduling of the procedures were both all but guaranteed to have an impact on my job that could not be worked around. Starting dialysis seemed like it would be the last strike to my career that would completely remove me from my line of work.
A couple weeks before my appointment to get set up for surgery to install a dialysis access port, and as I was leaving an Ochsner facility after one of my many lab appointments, I got a phone call. It was one of my coordinators at the Transplant Institute, and she had some news: my friend, Colton Emerson, had been approved to donate one of his kidneys to me. I was confused at first. Colton was one of the people who reached out when my flyer went live on social media, and I had sent him the information to do the blood test, but never heard anything else. I thought the coordinator meant he had just done the initial blood test and he had been found compatible, but that wasn’t the case. It was that and so much more.
Unbeknownst to me, in between the second and third of the three people who got tested for me and could not proceed through the second phase of testing, Colton had done the blood test and was found to be compatible. He continued through all the secondary stuff for months (it’s a lot!) without ever telling me anything. Ochsner of course was not going to tell me someone else’s medical information, so I had no idea whatsoever. It was only after he completed all the rounds of testing, was approved, and gave Ochsner his final agreement and commitment to donate, that they called and told me.
So, after my third potential donor could no longer continue in the process, and as I was preparing myself for dialysis and all the cascading effects it would have on my life, I got the call with news that changed my life. I don’t think I have ever sent so many text messages and made so many phone calls so quickly.
Things actually went downhill two days later. The transplant was still good to go, but my remaining kidney completely bottomed out. I had technically been in Stage V, or End Stage Renal Failure, for a very long time, but I had been holding on to just barely enough kidney function to keep me off of dialysis. Barely. The few weeks of planning my nephrologist and I thought we had left were suddenly no longer an option. I ended up hospitalized and on dialysis. But, the whole time, I knew how lucky I was and that the transplant was coming up.
After what felt like the longest month ever, I went to Ochsner’s main campus and had surgeries in quick succession to remove my remaining kidney and implant my new one. Now all my labs are great, and things have never looked better for me. My life has improved immeasurably in every way. I feel better than I have ever felt in my entire life. All that time so many years ago, when it seemed like the “kidney thing” was something to monitor and nothing else, was worse than I thought. It was the only normal I knew, at the time, and only now do I know how bad things really were.
I feel like the luckiest person. I’m doing great and my career is back on track! I am so thankful for so, so many people. I am thankful for my friends, coworkers, and family, who have helped me so much throughout all of this. I am thankful for the skilled hands and sharp minds of the doctors, nurses, and others at Ochsner who have dedicated their lives and careers to making stories like mine have such great resolutions. The people in the transplant clinic, the surgical staff, the nurses, and all the people who took such exceptional care of me and Colton in the Transplant Stepdown Unit have my deepest gratitude.
BRIAN GIVING THE THUMBS UP, WITH COLTON STANDING BESIDE HIM.
But most of all, I am thankful for Colton. His selflessness, his decision to do something so extraordinary for me, is something for which I will never be able to express enough gratitude. Ever. I don’t know if I could truly explain to him the impact his decision has made on my life. Every personal and professional opportunity I have in my life, every achievement, every accomplishment, and even every challenge or setback I have, I will be around to experience them all because of him.
He saved my life that day, and he has been saving it every day since.
I know my story is not the most common type seen on the recipient section on LOPA’s site, since I received a living donation. But both Colton are I are happy to share it, if it helps spread the word about donor registration. We are also including a couple photos: one from the day after surgery, and a carefully planned, extremely quick, COVID-friendly picture we took after a recent transplant anniversary milestone. I included a lot of details here not to garner pity or to complain, but to help demonstrate just how much of an improvement Colton’s incredible gift has made in my life. I hope after reading my story, people will give donor registration some serious thought.
