Mubo Ojo: Thriving beyond diagnosis

I went through end stage kidney failure and was on dialysis for eight years. The initial diagnosis sent me into a two-year denial where I almost lost my life. But I had a compelling WHY to live which were my two little kids.

During the eight years of dialysis, I received my degree in Cybersecurity, and started a motivational speaking career as a coach. I have since received a new kidney, my second chance, and I wrote an eBook.

I’m a witness that one is able to thrive beyond diagnosis, and it doesn’t have to be the end of our existence. We have a whole life ahead, but we have to align our minds to believe that.

Tony: My kidney donation story

I donated my kidney to my daughter, Matilda, just after she turned 2 years old. The one really surprising thing I learned through this process was that an adult male’s kidney can be donated to and fit inside of a toddler. Many people we speak with about our story have been shocked by this fact.

Matilda was in the NICU for her first 100 days of life, and we knew the day after she was born that her kidneys were not functioning and she was going to eventually need a transplant. It was a long 2 years of hospital stays and dialysis. But I knew early on I wanted to be the one to save my little girl’s life, as long as I was a good match. We had to wait 2 years for Matilda to grow and meet minimum size requirements for transplant and grow big enough for my kidney to fit inside of her abdomen.

I was very relieved to find out I was a match for Matilda. I was grateful to be in good health and approved to donate my kidney to my daughter and get her off of dialysis. She was on dialysis for over 2 years for 10 hours every night. It started when she was a few months old up until transplant in June 2023.

We are really happy to not have to do the dialysis anymore and to be able to give her a more normal life. We are now able to travel and take her places and no longer have to worry about dialysis.

Her recovery post-transplant is going very well. The kidney is working great and she thankfully hasn’t had any major issues. She’s really thriving post-transplant and she has grown significantly, eating much better and has an appetite, and her words and vocabulary have improved dramatically.

My recovery was good as well. I was discharged from the hospital within two days of surgery. The pain I experienced was not as severe as I anticipated and I felt fully back to “normal” after just a few weeks. I actually had another unrelated surgery on my arm a few weeks ago; the pain and recovery for that was significantly worse than the recovery from the kidney surgery. It took me longer to recover from arm surgery than the kidney donation surgery.

I live an active lifestyle, so one thing that was tough for me was not being able to lift weights or run for six to eight weeks after the transplant. Once the six-week mark came, I was able to work out as normal and play golf again.

Living kidney donation is a life-saving act and is life-changing for the recipient. I would urge anyone who is considering living kidney donation to go through the evaluation to see if living donation is a possibility. Currently, there are about 1,200 pediatric patients waiting on a kidney transplant in the United States. You could change the life of a child. Not everyone is lucky enough to have a parent as a match. Your generosity can make a significant difference in someone’s life, and can even save a child’s life.

Jared’s story: 4 kidney transplants in 30 years

In 1990, 19-year-old Jared Rumbo’s kidneys failed. He received a kidney transplant that year – the first of four he’d receive over the next three decades.

Jared’s first new kidney lasted five years. The second, which he received in 1995, did not work. In 1996, Jared’s younger sister volunteered as a living kidney donor. He resisted her offer for some time and begrudgingly accepted when his health took a turn for the worse. That kidney lasted 20 years, until 2016.

For the next two years, Jared underwent regular, ongoing dialysis sessions – an experience he describes as akin to a full-time job. “I was strapped to a dialysis machine three days a week,” Jared recalls. “There is only one option if you don’t do it, and it’s not a very good one.”

When Jared’s local hospital in Tyler, TX, dissolved its transplant program, UT Southwestern transplant doctors reached out. Our team worked with Jared’s local kidney doctors to provide the care he needed close to home. “It meant the world to me that the doctors came to me,” Jared says. “I would have had to stay at another hospital for two months until I got my transplant.”

Jared’s story is both hopeful and complex. Let’s begin with the elephant in the room: How can one patient qualify for four kidney transplants in a lifetime?

“In the 1990s and earlier, donor organs simply didn’t last as long as they do today. Our processes, approaches, and medications have improved substantially. As such, the need for repeated transplantations today is reduced.”

Parsia A. Vagefi, M.D.

What factors go into recipient selection?

When matching patients waiting on the kidney transplant list to available donor organs, we factor in a patient’s age, overall health, and urgency of need. Jared has struggled with kidney disease for most of his life. Aside from that, he is healthy, which makes him a good candidate for transplant procedures due to the likelihood of positive outcomes.

In the 1990s and earlier, donor organs simply didn’t last as long as they do today. Our processes, approaches, and medications have improved substantially. As such, the need for repeated transplantations is reduced. However, there is no threshold for the total number of organs a patient can receive in a lifetime

How to Save a Life ... or 8: The ABCs of Organ Donation

Did you know a single organ donor can save eight lives? Learn how as Parsia Vagefi, M.D., Chief of the Division of Surgical Transplantation for UT Southwestern, discusses the advances in organ transplants during our Facebook chat for National Donate Life Month.

Fourth transplantations are complex

I performed Jared’s fourth kidney transplant in September 2018. The procedure was complex – he had already had two kidneys placed in his right side and one in his left, so we had to find room to add the fourth. Additionally, his body had built up a high volume of antibodies over time, so finding effective anti-rejection drugs was challenging. 

However, Jared won the figurative transplant lottery the fourth time around. His donor was a “perfect match,” meaning the kidney matched Jared’s body tissue remarkably closely. Perfect match kidneys are more likely to function well long term. As we had anticipated, the new kidney began to work right away after the procedure. Jared went home three days later with a normally functioning kidney.

Jared Rumbo in February 2019.

Getting back to normal

Four months post-transplantation, Jared’s new kidney shows no sign of rejection. Twice a day, he takes a customized anti-rejection medication to prevent his body from shutting down the kidney.

Jared’s life is slowly returning to normal. He is eager to attend his children’s school events this spring and return to his career as a heavy equipment field mechanic. Through the highs and lows of his transplantation story, a determined and positive mindset is key. If you or a loved one are waiting on the kidney transplant list, Jared offers this sage advice: “Never give up. There are moments when it’s pretty tough, but it does get better.”

To make an appointment with a specialist at the UT Southwestern University Hospital Kidney and Liver Transplant Clinic, call 214-645-1919 or request an appointment.