Receiving a New Kidney Through Living Donation

Patient Story: Richard Smith 

After a routine physical at Massachusetts General Hospital, Richard Smith was diagnosed with focal segmental glomerulosclerosis (FSGS)–a rare type of glomerular disease that causes severe scarring of the kidney and prevents it from effectively filtering out toxins.  

Only 26 years old at the time, Richard’s Mass General care team determined the cause of his FSGS was high blood pressure (hypertension), a complication that resulted from obesity, and they prescribed a care plan aimed to manage the disease, prevent it from progressing, and avoid the need for dialysis. 

“To me, it was as bad a diagnosis as it gets,” he says. “I felt like I knew at a young age how I was going to die. My doctors went to great strides to normalize the diagnosis for me so I could get away from a catastrophic mindset.” 

Coping with a Chronic Condition 

The disease was manageable at first. Within the 10 years following his diagnosis, Richard married his now-husband, launched his own software consulting company, and routinely traveled cross-country for work and pleasure. During this time, he and his husband joyfully adopted five sons. 

However, despite the careful management of his chronic condition with his care team, Richard’s health slowly declined. The most disruptive symptom was significant, persistent fatigue. 

“I was tired all the time. I would need nearly 10 hours of sleep during the week, and I would sleep all weekend,” he says. Accustomed to a full schedule of work, parenting, and many other tasks, his waning energy alarmed him. 

And then, his doctors gave him the news they’d been hoping to avoid—at 38 years old, Richard needed a new kidney to survive. 

Finding a Living Kidney Donor 

For Richard, a major contributing factor to the high blood pressure that caused his FSGS was his weight. To ensure the best possible outcomes for a new kidney, he worked with the Mass General Weight Center to successfully lose 150 pounds through gastric bypass surgery. 

In his spare time and with the little energy he had left, he researched the options that the kidney transplantation care team provided for how he could acquire a new kidney. He decided a living kidney donor would provide him with the best chance of long-term health.  

“I knew that the time it could take to receive a kidney on the deceased donor waitlist was significantly longer than if I were to receive one through living donation,” he says. “Not to mention, living donation meant we could plan the timing of the procedure down to the hour. But it seemed like a tremendous favor to ask somebody to go through an unnecessary surgery for me.” 

Often, living donation means patients can avoid the need for dialysis and receive a new kidney quicker than if they were to wait for a deceased donor organ. Also, a kidney received through living donation usually functions right away, lasts longer, and results in an immediate and long-lasting improvement in the patient’s health. The living donor’s remaining kidney enlarges to take over some of the function of the removed kidney, ensuring their continued health and quality of life. 

Despite Richard’s reluctance to ask those close to him to donate a kidney, many of his family members volunteered to be evaluated, including his husband and brothers. To determine candidacy for becoming a living kidney donor, they completed blood work, a physical examination, and met with the various members of the Mass General living donor team.  

At Mass General, if donors and recipients are found to be incompatible, the donor can still help their loved one receive a new organ by donating their kidney through the National Kidney Registry’s (NKR) paired exchange program. In the paired exchange, the donor would donate to a compatible, unknown recipient and their loved one would receive a transplant from a compatible, unknown living donor as part of a swap. 

But as it turns out, his brother was a compatible match. 

After Surgery 

On the day of surgery, everything went according to plan and Richard woke up feeling like a new person. The newfound energy after surgery is what surprised Richard the most. 

“I didn’t realize how sick I had been until I felt all of this energy surging through me after surgery,” he says. “I felt present in my own life again, no longer on the sidelines.” 

One of the benefits to receiving care at Mass General, he says, was the integration of a transplant psychiatrist on his care team, John Taylor, MD. With Dr. Taylor’s guidance, Richard employed a variety of techniques and treatments for the mental and physical transformation that comes with a kidney transplant. 

Today, Richard shows no signs of FSGS recurrence. As part of his new lease on life, he and his husband have made it a priority to travel more. As a recipient of a kidney transplant, Richard is naturally at higher risk of developing a sickness. To enable his travels, he worked with Camille Kotton, MD, transplant infectious disease specialist, to create plans that help mitigate his risk for infection and ensure he has all the medication he needs while abroad. 

“I feel utterly grateful that I get to live,” Richard says. “Not only does Mass General have compassionate providers, but I also received care from some of the smartest people I have ever met, all of whom were willing to meet me where I was to make me feel comfortable and empowered in my choices. It really does make a difference.”