At 48 years old, I am in a race against time, desperately seeking a kidney transplant to reclaim my life from Polycystic Kidney Disease.
Personal Info
I have been married for 28 years to my wife Jessica. We have three young adult sons and a small Yorkiepoo named Jasper. I work remotely from home as an Assistant Vice President of Data Engineering for a healthcare company. My interests include cooking, woodworking, investment strategies, and working on computer software related projects. Unfortunately, my condition often leaves me feeling drained of energy and time, making it difficult to pursue my hobbies and interests.
For the past 5 years, our family life feels like it has been halted. My health issues have taken up most of our time and dialysis has made it nearly impossible to go on any family vacations or even a simple weekend getaway, not to mention the energy it requires to do those things. We also can’t travel too far from home while waiting on the transplant list in case I get a call.
About My Condition
I was diagnosed with Polycystic Kidney Disease (PKD) at the age of 26. PKD is a genetic disorder characterized by the growth of numerous cysts in the kidneys, often leading to kidney failure. I inherited this disease from my mother, who suffered for many years on dialysis until she passed away in 2019 at the age of 67. For the majority of my life, PKD didn’t affect me much other than the need to take medication for high blood pressure, but that all changed in 2020.
At the age of 43, my kidney function began to rapidly decline. I had multiple episodes that year where a kidney cyst burst, leaving me in severe pain and urinating blood for weeks at a time.
In February 2021, my kidney function had deteriorated to the point of needing dialysis. I underwent an outpatient procedure to get a catheter inserted into my abdomen, and I started peritoneal dialysis (PD) at home soon after. I have had multiple complications while on dialysis, which include: a hernia repair surgery, two PD catheter repositioning surgeries, a life threatening peritoneal infection called peritonitis (which left me hospitalized for a week and took me months to recover), three blood transfusions caused by low hemoglobin and chronic bleeding from my kidneys, and finally having both kidneys removed because of persistent pain and bleeding for over 7 months.
In July 2023, I had a fistula surgery on my right arm to make an access point in preparation for hemodialysis. After my kidneys were removed, I had to go on hemodialysis because my PD catheter had to be removed during the surgery. Hemodialysis required me to be at a dialysis center for 4-hour sessions, only 3 days a week, which was not frequent enough to properly clean my blood and pull off extra fluid buildup. The days that I went to hemodialysis left me feeling completely wiped out for the rest of the day, and over time it felt like my life was being sucked out of me.
In February 2024, my wife and I did training to do hemodialysis at home. Home-hemo is less harsh on your body than in-center hemo. However, on days that I have to do longer sessions, it still makes me really tired. No matter how it’s done, dialysis is a very time consuming process and doesn’t compare to having healthy working kidneys, so it is not a good long-term solution. The average life span on dialysis is only 5-10 years because of the toll it takes on your body; I have been on dialysis for four and a half years now. Ultimately, my best outcome would be to receive a kidney transplant as soon as possible.
I have been on the kidney transplant list at Ascension St. John Medical Center in Tulsa, OK, since September 2022. I am also in the process of joining the transplant list at the University of Arkansas Medical Sciences in Little Rock, AR. While the wait time for a cadaver donor is uncertain, a living donor could significantly speed up the process, potentially leading to a transplant within 3-4 months by bypassing the transplant list entirely. Not only that, a living donor kidney offers the best outcome, often lasting longer than a kidney from a deceased donor.
The Search for a Donor
Ideally, I am in search of a live kidney donor with O+ or O- blood type; however, there is a way for me to receive a donor kidney from someone that doesn’t have those specific blood types. This is called a Paired Kidney Donation. It’s like a “kidney swap” where two pairs of people who can’t directly donate to each other trade donors. This way, each person needing a kidney gets a compatible one, and both receive a life-saving transplant.
In addition to the blood type requirements, donors also need to meet certain health requirements. They need to have a BMI of 32 or less, be a non-smoker, no history of diabetes, and in general good health. The transplant will be done at UAMS Transplant Center in Little Rock, AR. Donors will undergo a series of health evaluations to ensure their suitability for donation.
How to Help
If you wish to be evaluated as my potential donor, below is the link to fill out the living donor prescreening:
https://apps.uams.edu/LivingDonor/prescreen
Once you have completed the prescreening, if you meet the criteria you will be directed to another page that will allow you to create a login and password to complete the living donor application.
If you prefer, they can mail you an application, please contact:
Jamoyne Ellington, RN
Living Donor Coordinator
501-686-5403
Detailed Donor Requirements
Below is a list of the initial qualifications one must meet to get started with the donor evaluation process:
- Age needs to be between 18 and 59.
- Cannot have a diagnosis of diabetes.
- If the donor is hypertensive, their blood pressure must be controlled on 1 medication, which may vary by individual.
- Cannot smoke or use any nicotine products. If using currently, you must stop and be tested after 6 weeks of not using any nicotine products (including vaping).
- Body mass index must be 32 or less.
Closing Message
I try to remain positive and take life one day at a time, but the last 5 years have been very difficult for me and my family. If I can get a kidney transplant, I am hopeful for a future where I can regain my normal life and energy levels, resume my hobbies, and enjoy my family. It would significantly improve my quality of life and hopefully allow me to live longer so I can be there when my sons get married one day and be able to see my grandchildren.
Thank you for your consideration for becoming a potential donor or if you know someone who may be interested. May God bless you for your kindness and generosity, it means the world to us!
The Burton Family