VIRGINIA — Rob Alger and his family will compose special letters of thanks in the coming weeks.
The correspondences will be unlike any Alger, his wife, Jen, and their 12-year-old daughter, Delia, have ever penned.
It’s difficult to know exactly what to say; nearly impossible to find the words to express the overwhelming feeling of gratitude, Alger said on a recent day.
But he and his family, of Virginia, want the family of a complete stranger out there, somewhere, to know the impact of what their loved one did.
That person gave the greatest gifts of all to another human being — the gift of life and the gift of more time.
“It’s a race against the clock,” Alger said last spring, while seeking to find a living liver donor before his bile duct cancer spread and he would no longer be eligible for a transplant.
The clock was ticking and, although typically a private person, Alger shared his story and his plea with the community.
“You’d not only be saving a life, you’d be helping my daughter keep her father, and a wife keep her husband,” Alger had said on a public Facebook post. “I’m not particularly afraid of dying, but leaving my family without me is what terrifies me and keeps me up at night.”
Alger, an accountant at Fortune Bay Resort Casino near Tower and a former longtime EMS first responder, had been diagnosed in May 2018 with cancer, which likely stemmed from autoimmune conditions he has struggled with for most of his life.
Alger was diagnosed a decade ago with an autoimmune disease called Primary Sclerosing Cholangitis (PSC). The chronic liver disease slowly damages a person’s bile ducts, gradually destroying liver cells and causing cirrhosis.
People with PSC have a 10% chance of developing bile duct cancer, called cholangiocarcinoma. Essentially, Alger’s body attacked his own cells as if they were an intruder, causing bile to back up, leading to cancer.
Alger underwent chemotherapy and radiation and was put on the transplant list.
Nearly 14,000 people are on the waiting list for a liver transplant in the United States as of August 2018, according to the United Network for Organ Sharing. More than 1,400 people die waiting for a liver transplant annually.
Alger’s best chance at the time was to find a living donor. The liver is an organ that regenerates itself, making living donation possible.
Alger’s wife and daughter, who both have ulcerative colitis, were not eligible to be donors due to the condition.
As days, weeks and months went by, Alger battled the effects of chemo and other symptoms: Neuropathy in his hands and feet, extreme fatigue, itchy and jaundiced skin and yellow eyes caused by high bilirubin in his blood from a malfunctioning liver.
A benefit held for Alger at the end of May “boosted my spirits for a while,” he said. “It was overwhelming. It was incredible.”
But as more time passed, “I was on edge.”
Alger kept his phone on, ringer up, day and night, answering every call, even solicitors, just in case.
But as the end of September neared, he began losing hope that a living or deceased donor would be found — in time.
Alger remembers Sept. 27 well. He was at work and “feeling the lowest I ever felt,” he said. “The most despair. I was at my worst point.”
A little after 1 p.m., his phone rang.
Alger had messaged his care team at the Mayo Clinic in Rochester earlier that day and assumed the 507 southern Minnesota area code “was them calling me back to calm me down.”
Rather, it was a nurse who said she had news.
“They had a liver that would be a great fit for me, and they said to come down.”
Alger’s response is not printable, but started with the word “holy,” he said with a smile.
His wife’s response was a bit different. “I called her and she said, ‘No, really?’”
The couple picked up their daughter from school and packed at great speed.
Knowing there was a possibility that doctors would later determine the liver was not suitable for transplant and the situation would be considered “‘a dry run’ … I was a little nervous” during the roughly four-hour drive, he said.
Alger arrived at the Mayo at 7 p.m. The liver, from a deceased donor, was a good match, and the transplant surgery took place the following morning.
“It seems like it was just yesterday,” he said.
“I was able to tell the surgeon my liver joke,” Alger noted. Humor, after all, was what had got him through many dark days.
Alger told the surgeon “it was OK for me to be scared.” Why? “Because I’m yellow-bellied.”
But Alger was not jaundiced for long.
The six-hour surgery was a success. The new liver was functioning well. And Alger was up and walking the next day.
The effects were immediate.
“My liver level was down. It was the first time I’d had normal liver levels in years,” he remembered. The neuropathy disappeared. “My feet were no longer on fire.”
But what stood out most, he said, was that his skin was no longer yellow, nor were the whites of his eyes.
“Holy … this really happened,” was his reaction to seeing his reflection. Alger, his wife and daughter, shared a moment of tears together in the hospital room. Alger smiles, remembering that moment. Of course, he said, that’s right when the doctors making the rounds entered the room.
Alger has high praise for the team at the Mayo Clinic. “They have been fantastic.”
He was in the ICU for a short time before being transferred to the transplant wing at the hospital. He later resided at the Mayo’s Gift of Life Transplant House. His dad stayed with him as his caregiver.
Twenty-one days after arriving in Rochester, Alger returned to Virginia on Oct. 18.
Daughter Delia told her dad, thanks to the scar on his belly, he could be Frankenstein for Halloween.
“Family life is better now,” Alger said. For a long time, “we were all on edge.”
But Alger’s medical journey continues.
“The Mayo did a great job educating me on ‘the rest of my life,’” he said.
That includes a daily regime of anti-rejection medications, frequent labs that will taper off with time, many future tests and scans.
The medications suppress his immune system, requiring extra care to avoid germs and sickness along with precautions, such as wearing sunscreen daily, to prevent cancer.
“My endurance is not very good,” Alger said, adding he has experienced digestive issues, a poor appetite and few other issues since transplant.
But they pale in comparison to his life pre-life-saving surgery.
“One of the biggest changes,” he said, is “I get a normal tired. Before, the fatigue was always there, whether I was sitting down or walking.”
Alger expects to return to work next month.
“I can’t thank anybody enough,” he said, including his employer.
“I especially want to thank my wife and daughter. They are going through this, too. I wouldn’t have made it without them.”
And there is someone else out there — a stranger yet to thank.
“I want the donor family to know what they did for my family,” Alger said. He, Jen and Delia will each write an individual letter. “If they don’t want to communicate, I understand. They lost someone,” he added.
Initial correspondence between recipient and donor families is anonymous (first names only) and coordinated through a transplant center.
“I can worry about other things now,” Alger explained. “I can enjoy other things now,” without a constant feeling of a clock ticking, time running out. “The stuff you take for granted when you’re healthy, like thinking I’ll die when I get old.”
And, “I can be there for my daughter’s basketball games and swim meets.”
Alger attended his seventh grade daughter’s first basketball game of the season Tuesday evening, and with great enthusiasm relayed that her Virginia team won.
“I have more time to be a good father and a good husband,” he said, tears in his eyes.
“The clock has been reset because of that family, and I couldn’t be more grateful.”