This is a printer-friendly version of an article from Zip06.com.
03/30/2022 08:31 AMEvery nine minutes, someone is added to the organ transplant waiting list in America. For kidney donations, there are close to 100,000 people on the waiting list at any given time, but only about 20,000 transplants are available a year. Madison resident Tom Lauher is one of those waiting for a kidney donation and his plight shines a light on how critical the need is and how debilitating those in need actually are.
Lauher, 65, has been on the list for two years after being diagnosed with Stage 5 chronic kidney disease, or end stage renal disease, and his condition truly brings home how difficult life can be for those at the mercy of a waiting list. In Lauher’s case, though he will only need one kidney to regain some level of his functionality, his situation only becomes more dire as time passes.
“Physically I feel pretty lucky. I’m not terribly sick and I’m pretty functional. I have low energy and some effects of the blood toxicity, but it’s not very bad at this point,” Lauher said. “I have not been forced into dialysis as of yet, so I don’t have that burden, which is really a life changer.
“This is a chronic illness and there is no cure for it,” he added. “It can be treated by dialysis or transplant, but neither of those are a cure for the underlying disease. They extend life, but don’t correct the people. It is a burden to carry.”
Lauher says the unknowns of a wait list can compound a diagnosis such as his. The mental pressure and stress of the wait can also affect the physical health and further complicate treatment for those on the list.
“As far of the mental aspect, this can really wear on a person,” said Lauher. “The uncertainty is certainly a factor, like many other illnesses. It truly effects a person.”
According to Lauher, creating awareness of the transplant crisis in this country is something that has become important for him. Being so personally involved in the issue of donation has actually helped him cope with his situation, Lauher said.
“We are trying to get the word out that its possible for a healthy individual to bring life by donating,” Lauher said. “Whether a kidney or liver transplant, both are highly successful in live donor transplant,” said Lauher, who underscored the need for living donor transplants. “The wait time for a deceased donor is an average of five years, sometimes five to eight years.”
According to Lauher, here in the Northeast the wait can be even longer due to demographics and the number of people in need and the availability of organs. Lauher said he knows of several fellow wait list patients who felt compelled to move to other states to increase their chances of a donation.
“I am aware of some kidney patients who relocate, who move to Florida, for example, because the wait time is a little shorter,” he said.
According to the National Organ Donor Registry, an organ donation from a living donor has a better success rate and longevity rate than an organ donated after death. However, there is still a critical need for organ donation and all donations are extremely critical for someone waiting on a donation list.
“My best hope is for a living donation,” said Lauher. “From a family, friend, or altruistic stranger. I think that’s my best bet.”
Lauher has mounted social media campaign after advice from medical professionals that this method has shown to be an effective technique for some potential recipients. According to Lauher, he is very encouraged by his campaign and holds out hope that he will be able to locate a matching donor.
“I would suggest for readers to call the Yale Transplantation Center to make their initial inquiries if they would like to find out more about the process,” Lauher said. “It’s 100 percent confidential. The staff is incredible and not onerous at all. This is a great first step for anyone interested.”
Lauher said he is currently stabilized in his health and that his doctors are cautiously encouraged, but those on waiting lists are often in constant flux with their condition.
“I’m optimistic that I will be able to find a donor, but you know, without hope, what’s the point?” said Lauher. “I would have started dialysis months ago, but my doctors have told me numbers are holding steady so I am not exhibiting side effects or other symptoms. So, my doctor is satisfied that I don’t have to start dialysis imminently, but that would be the next step.”
Lauher also encourages everyone to become an organ donor via the DMV or other organizations and make your donation wishes known to family members or loved ones.
Some other sobering statistics on organ donation in the U.S., according to organdonor.gov:
• There are more than 106,000 Americans on the National Transplant waiting list; of those, more than 90,000 are waiting for a kidney donation.
• Every nine minutes another person is added to the transplant waiting list.
• 17 people die each day who are on the transplant waiting list.
• More than 40,000 transplants were done in this country in 2021.
Some myths about organ transplantation and donation are:
• Most faiths consider organ donation to be a generous and thoughtful act. There are very few religious institutions that do not support organ donation.
• Some people have reservations about donating, fearing that doctors won’t save them in an emergency because their organs could be used for others; medical professionals would never withhold care from someone who was sick or injured just because they are an organ donor. Medical professionals swear an oath to render lifesaving assistance to all patients; medical professionals do not even know if a person is a donor or not, and frontline medical professionals are not involved in the organ donation process.
• The myth that members of the LGBTQ+ community are not eligible for donation; anyone who identifies as LGBTQ+ can donate and receive organs on an equal basis with any other citizen.
• There is no cost to a donor or donor’s family should someone become an organ donor whether via a living or deceased donation.
To be considered as a possible living donor or for more information about donation, contact the Yale Transplantation Center at 866-925-3897.