This story was told to me by Maryetta via Facebook and the video linked to below.
Last year, 2015, Mary’s husband of thirty-six years, John, received a kidney from Sharon, a dedicated donor activist who chose to donate her kidney to a stranger. Until then, Mary had administered each of John’s dialysis treatments. You can watch a video of their story here.
Before the transplant, life was very different for John and Mary. John was on a type of dialysis called peritoneal dialysis. In short, the peritoneum is a membrane that lines the abdominal cavity and acts as a conduit for blood vessels and nerves in the abdominal organs. This type of dialysis essentially passes two liters of artificial fluid through the membrane where it filters the blood and then gets flushed out with a separate fluid. Both fluids flow into the body through a permanent catheter inserted into the stomach. The whole process takes about nine hours.
It seems trivial to say, but in a certain way, John was lucky. Some peritoneal dialysis patients have to go through a manual process called “Continuous Ambulatory Peritoneal Dialysis,” which means that four to five times a day, a patient has to fill the peritoneal cavity with the fluid, let it sit for a few hours, then drain it and start over. Each preparation/drainage takes about forty-five minutes. John, however, was on automatic peritoneal dialysis. Each night, he connected to a machine that automated the process for him while he slept. But even this type of dialysis comes at a heavy cost.
“He can’t even sleep next to his wife,” Sharon, the donor, tells us in the video of their story. “There’s no freedom. He can’t get up to go have a weekend getaway or anything.”
With all that needed to be done to keep John alive, it sounds virtually impossible to leave the house, let alone hold a job. But John did just that, thanks to the automated overnight dialysis process. Every morning, he’d go to work with two liters of fluid in his belly. “Sometimes,” he said, “you have to move around a little bit to get the fluid to drain properly or fill up properly, and you can feel that in there. But you get used to it…It can make you look poochy because you got two liters of fluid in there. It might even feel a little heavy to you, or it might feel a little bit harder for you to breath. But after a certain amount of time, you adjust to that.”
At some point, Mary decided to take a different course of action. She began to look for living donors who might match with John. She came across Sharon on Facebook. They hit it off right away. Sharon says, “I would have donated to anyone, but I really feel like God put us together. Maryetta and I are really similar. She and John have three great, wonderful kids, wonderful grandkids…I know the risks are minimal, and what we get out of it is me getting to lay in bed for a few weeks and watch some shows I need to catch up on anyway while I heal, and John gets to no longer have to be hooked up to a dialysis machine and he doesn’t have to be exhausted all the time and he gets to live and be here for his grandkids and watch them grow. It’s worth every minute, and I’m so grateful that I get to do that for him.”
Just before the surgery, John had to have a stent put into his heart, which delayed the transplant for ninety anxious days for Maryetta. After those ninety days, though, the surgery went off as planned, and John now has a healthy, functioning kidney, and a life that is relatively back to normal.
The experience mobilized Maryetta. She is now an ambassador for Donate Life TN, spending her days “paying it forward.” She takes people for testing to be listed or to be a living donor. She stays at the hospital with people who don’t have any one. She sets up information tables wherever she can. She and John even open their home to anyone who wants to come to the area to be tested at Vanderbilt.
“I feel like it’s my calling,” says Mary. And a worthy calling, it is.
Maryetta’s story is the sort that most kidney donors, recipients, and caretakers hope to end up with. There were few to no complications short of the heart stent, and despite the massive intrusion dialysis was on his life, John’s story is generally indicative of the lives of so many transplant recipients. They go out into the world, live as normally as possible, and only behind closed doors do we see what has to be endured. Stories like John’s are the impetus behind this project: to bring to light how difficult, how frustrating, and how awful life with renal failure is.
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