Nine months after Paul Kelley was told he needs a kidney transplant, a month after a neighbor was cleared to be a live donor once they found a match, and a week after he was placed on a national registry, Kelley and his wife, Corinne, got a phone call — but not the one they wanted.
The call was from Intermountain Healthcare, informing the Kelleys that Paul would be temporarily taken off the registry — because Utah’s largest hospital system could not guarantee him a bed after surgery, due to the surge in COVID-19 patients across Utah.
“I was really, really angry,” Corinne Kelley said Tuesday. “It’s been such a long process to get where we are now, with so many setbacks already. We found out that we had a donor in August — just a little bit of hope came into our life, and it just felt like it was quickly taken away.”
The Kelleys, who live in the Logan suburb of River Heights, got the call on Friday. That was the same day Intermountain’s CEO, Dr. Marc Harrison, announced the system would be postponing hundreds of “urgent... but not life-threatening” surgical procedures at 13 of its hospitals in Utah, starting Wednesday.
The hospitals’ intensive care units were hitting or surpassing 100% capacity, Harrison said, because of an influx of COVID-19 patients — and had to prepare for those patients, and save space for trauma victims, such as people in car accidents or those suffering strokes or cardiovascular emergencies.
Harrison stressed that the procedures that would be delayed weren’t just “minor procedures that are trivial, that are purely elective.” Some people, he said, will have waited a long time already for surgery, but because they’re not in immediate danger of dying without the procedure, they will be forced to wait.
“The pause in surgery is going to be a challenge — for you, your family, your friends,” Harrison said at the time. “It’s going to make people unhappy, and it’s going to make people scared, and in some cases it’s going to make people miserable.”
Harrison said the postponed surgeries could number in the hundreds. A spokesman for Intermountain did not return a request for clarification Tuesday on how many procedures so far had been rescheduled or delayed.
Two days after the Kelleys got the call, Corinne Kelley said, someone at Intermountain called back. “She called Sunday, saying that she thought that was a mistake,” Corinne said. “They called back Monday, and confirmed that there was a mistake and that all of our patients are going back on the National Kidney Registry.”
Corinne Kelley noted that in the two days between the first and second calls, she did tell people on social media about what happened.
Even with Paul back on the registry, Corinne said, their doctors said that if a match was found right now, they would have to pass because Intermountain doesn’t have the staff available to perform the surgery.
The Kelleys found out in December that “my kidneys were shot,” Paul Kelley said. Paul, now 39, was diagnosed with IgA nephritis when he was 19, he said. Right now, his kidney function is at about 5%.
Since then, he’s been getting dialysis daily, using an at-home device — about the size of a suitcase — that takes about nine hours every night, mostly while he sleeps, to filter out the toxins that the kidneys would normally remove from the blood. The dialysis device is portable enough that he’s been able to take it on vacation this summer, even plugging it in to an RV on a camping trip the Kelleys took with their three children.
While dialysis brings his kidney function up to about 20%, it’s not a permanent fix. “It’s just enough to keep you alive,” Paul said. “It’s not really a long-term solution.”
Doctors told the Kelleys it could take between two and six months to get a transplant, “with everything going perfectly, and not everything really went perfectly in our situation,” he said.
Several friends and relatives went through the screening process, but were weeded out early for various reasons. One close friend, though, was found to be healthy enough to donate a kidney — but wasn’t a perfect match for Paul. So the friend was put in the National Kidney Registry, under what’s called a “paired exchange.” In essence, the friend’s kidney would be matched with someone else in need, while the registry would try to find a match for Paul.
“If they find a match for both him and me, then it’s usually about two weeks [until surgery],” Paul Kelley said.
Paul Kelley said he understands the position Intermountain is in. “They’re making really hard decisions in a really tough situation,” he said, noting that the reason for the strain on ICUs is the number of people who have not been vaccinated against COVID-19. (The Kelleys are both vaccinated, they said.)
“It sounds weird that a kidney transplant is an elective surgery, but since we have a live donor, the kidney is safe in our donor, and it’s not going to expire.”
When an organ comes from someone who dies, such as a car-crash victim, the window to transplant that organ is only open for a day or two.
“A kidney transplant is not a non-urgent surgery, it’s a life-saving surgery,” Corinne Kelley said. “Every week that goes by is important.”
The Kelleys say they hope their situation shows those who have not been vaccinated against COVID-19 that “it’s not affecting just themselves. It’s affecting other people’s lives, too.”