I never thought about kidneys until one day in late April 2010. In fact, kidneys were, to me, beans in a can or sometimes the shape of a swimming pool. Then my not so smart cell phone rang just as I left the subway station.
“Mom, you better get home quick. Sean’s on his way to the hospital in Reno. There’s something wrong with his kidneys,” his older sister reported frantically.
I knew that Sean hadn’t been feeling well. When he stopped by to spend the night a few months earlier, I’d heard him vomiting one morning.”
“Did you have too much to drink last night?”
“No, I didn’t have anything to drink. I just throw-up sometimes.”
I also noticed that his six foot frame wasn’t a meaty 200 lbs any more. He had definitely lost weight.
“I think you should go to the doctor and get a check up. And you’d probably better see about getting some health insurance soon, because in April when you turn twenty four, my insurance won’t cover you anymore.”
In his near twenty four years, Sean hadn’t had any health problems. He was never sick with flu or a cold. The worst he’d faced was a broken collar bone at thirteen from a snowboarding accident. He had grown into manhood to be both a snowboarding and mountain biking enthusiast. He took off the winter quarters during college to work at mountain resorts where he’d always found a job cooking to support himself. Then after graduating from university he chose to live in the Sierra Nevada Mountains so he could pursue the winter and summer sports he loved.
Now, I felt panicked. What could be so wrong that Sean was going to the hospital in Reno?
My husband and I converged at home both reeling from the news.
When we arrived hours later and found Sean in a hospital gown with an IV in his arm, he explained that he’d been to the acupuncturist in the early afternoon. The acupuncturist insisted that he go immediately to the emergency room at the small, local hospital. From the emergency room, he’d been told to go to Reno—in fact, they insisted on taking him in an ambulance because his creatine count (creatinine is a waste product that is produced continuously during normal muscle breakdown which the kidneys remove from one’s blood) was so high, he was in danger of a heart attack!
From this news, things went from bad to worse. At the hospital we learned that his kidneys had been severely compromised due to a malfunctioning bladder. A nephrologist told us that Sean would have to begin dialysis right away. Because he was so young and his kidneys weren’t working, he should register for a kidney transplant as soon as possible.
Our family was plunged into the theatre of kidney failure, a drama about which I had known nothing previously. Unlike cancer, possibly the most publicized and researched disease affecting Americans, kidney failure remains relatively invisible. At present there is no known cure chronic kidney disease . Our kidneys must work 24/7 to clean the body’s blood and perform a variety of other complex, essential functions. Once, the kidneys can no longer do these tasks adequately, the body becomes poisoned with toxins. People with kidney failure have only two options to continue living: begin regular dialysis or get a kidney transplant.
In 2017 there are more than 600,000 people on dialysis. Most do something called “hemo-dialysis” at a clinic between 2 and 4 times weekly. The dialysis process, whereby one’s blood is circulated through a large “cleaning machine” over a period of 3 to 4 hours leaves patients feeling weak, frequently with intense headaches, itchiness and other unpleasant side effects. Of course, this is preferable to dying. Dialysis makes holding down a job near impossible when half a day three or four times week has to be spent at a dialysis clinic. The other dialysis option is called peritoneal, which can be done at home every night for nine to ten hours. After a month a hemo-dialysis, Sean chose the peritoneal option, so he could keep working.
Meanwhile, we began the arduous process of looking for a kidney transplant. We learned that there are many barriers to getting a kidney transplant which for a young otherwise, healthy person like Sean, would be much better than remaining on dialysis. First, there is the question of finding a compatible kidney. As his parents, we were both willing to donate one of our kidneys. Fortunately, we humans can live quite normally with just one kidney. The screening process for kidney donation is detailed, takes time and each of our cases did not yield a transplantable kidney for Sean, or for anyone else. We were devastated, when we were both rejected as donors, for different reasons.
Sean’s next option was to get a “deceased” donor kidney which is a healthy kidney from someone who has died either by accident for another unrelated cause. Fortunately, Sean had been listed for transplantation just a few months after his diagnosis. Unfortunately, the list of persons waiting for a kidney transplant in northern California grew longer and longer. Years began to pass with no possibility of a kidney transplant on the horizon.
In desperation, we began to look for other options. I had begun to scour the internet for information on kidney transplantation and possible alternative treatments for kidney failure . Four years into this saga, I discovered a website: The Kidney Project (https://pharm.ucsf.edu/kidney) at the University of California, San Francisco. The website described a project devoted to developing an artificial kidney that was well on its way to clinical trails. My husband and I contacted the project director, Dr. Shuvo Roy. He explained The Kidney project’s objective is to develop an implantable “bio” artificial kidney which would be available to anyone suffering from kidney failure. The advantages of the bio-artificial kidney over a transplanted human kidney are several: First, and foremost, availability. There would be no need for live or deceased donor, heros and heroines who are in very scarce supply by comparison with the exploding need. Second, the bio-artificial kidney uses nephrons (kidney cells from the recipient embedded on a silicon screen . This eliminates the need for costly immune suppressant drugs that all transplant recipients must take daily for the rest of their lives.
Why do recipients of someone else’s kidney need to take immune suppressants? Because our body recognizes and tries to reject any foreign organic matter which is not its own. Therefore, people receiving someone else’s kidney must take a twice daily cocktail of heavy drugs to suppress their body’s response to the life saving kidney. Taking immune suppressants comes with a host of its own problems. That’s why at present, the two treatments for kidney failure, dialysis and kidney transplants are treatments not cures. The bio-artificial kidney, however, approaches a cure by eliminating the need for immune suppressants.
How far is The Kidney Project from realizing its goal? That depends. At present it is $ 10 million from completing the clinical trials. While the project has been funded by the National Institute of Health, as well as the University of California, San Francisco , the additional funds will permeate Dr. Roy to test the bio-artificial in multiple persons simultaneously. With the additional ten million dollars, this life saving medical device could be available as soon as the early 2020s.
While, thankfully, our son received a deceased donor kidney in February of 2017, making him dialysis free and able to live the active life he cherishes, he is only thirty one. He will need another kidney down the road. I want to spread the word about The Kidney Project. More financial support is essential in order to speed up the final stages of the bio-artificial kidney’s development. It promises to produce a cure for kidney failure that will become available to people everywhere facing kidney disease.