Seven years ago, Jeff Kepner became the first person in the United States to receive a double hand transplant. Today, the 64-year-old says the transplanted hands were never functional and if he could, he would have them removed.
"From day one I have never been able to use my hands," he told TIME in an interview. "I can do absolutely nothing. I sit in my chair all day and wear my TV out."
Kepner had his hands amputated in 1999 as the result of a sepsis infection that started out as a case of strep throat. He used prosthetics for the next 10 years, and they worked well enough that he was able to drive and keep a job.
But that changed after he underwent a nine-hour procedure at University of Pittsburgh Medical Center (UPMC) to attach hands from a deceased donor.
Kepner knew of the risks involved with the transplant surgery -- including that his body could reject his new hands -- but assumed that he could get them removed and go back to the prosthetics if things went awry.
However, it turns out that option isn't so easy.
Dr. Vijay Gorantla, the administrative medical director of the Pittsburgh Reconstructive Transplant Program at UPMC, who is overseeing Kepner's case, told TIME that it's not certain if Kepner would be able to use prosthetics if his hands were removed. He also said rigorous physical therapy would be required.
"We believe that additional, minor surgical procedures -- and commitment to more physical therapy -- could improve the function of his hands to help him with activities of daily living," Gorantla told TIME in an email.
For Kepner, who has already been through so much, more medical intervention doesn't seem worth it. "I am not going through all those operations again," he said.
Dr. W.P. Andrew Lee, the surgeon who led the transplant in 2009, called the operation a "complex surgery" that does "not produce uniform results for everyone."
"Mr. Kepner's transplanted hands do not function as well as those of other hand transplant recipients," said Lee in an email to TIME. "Our team has performed bilateral hand/arm transplants in four patients to date, including Mr. Kepner. The other three patients have had significant functional return in their hands and have been able to resume completely independent living, including driving, working, and going to school."
Kepner is one of a growing number of Americans to have undergone experimental non-life-saving transplant surgeries in recent years. Such operations also include face transplants and the first penis and uterus transplants -- the latter of which failed amid complications earlier this year. While the procedures are not matters of life or death, they are meant to greatly enhance quality of life.
Unfortunately, Kepner's experience illustrates that it doesn't always work out that way.
His family has set up a GoFundMe page to help cover some of the expenses resulting from his years of medical issues.
"We are also asking, and praying, for your support in helping to defer some of the expenses we have incurred in the past due to Jeff's original illness and are still working on," the page reads.