A Marylander, and his parents, wait and hope for a transplant from a living donor

Parminder Ghuman hasn’t been missing many phone calls lately. He can’t risk it — a stranger might be on the other end willing to donate part of their liver to his son.

“My phone is my best friend right now,” Ghuman recently told The Baltimore Sun, after picking up a call after a single ring.

Ghuman’s son, Harvir Ghuman, is a 21-year-old rising senior at the University of Maryland, College Park, where he studies mechanical engineering. He grew up in Severn, where his parents still live, and likes playing soccer with his friends, being outdoors and watching basketball — his team used to be the Cleveland Cavaliers, but now he just watches for fun.

He’s also one of nearly 10,500 Americans waiting for a liver transplant.

In the world of organ donation — where 17 people die every day waiting for a transplant — the sickest in line are prioritized when an organ from a deceased donor becomes available. People waiting for a liver are given a score from 6 to 40 that corresponds with their level of need, with 40 reserved for the most gravely ill patients. Harvir, whose liver isn’t actively failing, but could develop cancer because of a rare congenital disorder, has a 27 on that scale.

He’s a patient at Johns Hopkins Medicine’s Liver Transplant Program, where upward of 400 people could be waiting for a transplant on a given day, said Dr. Andrew Cameron, director of liver transplantation at Hopkins and Harvir’s doctor. While the sickest patients might have to wait only a week for a transplant, those with the lowest scores could wait indefinitely, Cameron said. Most people on the Hopkins waitlist go months or even years without a transplant.

“There’s not enough organs to go around,” Cameron said. “It can be a really tough game to play — to wait until you get very sick to finally get the lifesaving organ transplant you need.”

Waiting could be dangerous for Harvir.

The right lobe of his liver is covered with lesions similar to those caused by focal nodular hyperplasia — a condition most common among women between ages 20 and 50. While tumors caused by that condition are benign, Harvir’s lesions have an atypical cell structure that his doctors say make them more prone to become cancerous.

If that happens, and the cancer spreads to a nearby organ like his colon, he wouldn’t be eligible for a transplant.

For obvious reasons, Ghuman doesn’t want his son to have to wait for a deceased organ donor.

There’s another option, though it constitutes less than 10% of liver transplants conducted each year in the United States. Just like how healthy adults can donate one of their kidneys, they also can donate part of their liver to someone with a compatible blood type. That’s because livers can regenerate — when half of a healthy liver is removed and placed in a patient’s body where a sick liver used to be, both halves will “happily regrow” to a normal size in as little as a few weeks, Cameron said.

The procedure can be done safely, Cameron said, and living donors are typically well enough to leave the hospital within a few days.

According to the Mayo Clinic, the recipient’s insurance typically covers all medical services related to the donation, including the donor’s evaluation, hospitalization, surgery, follow-up care, and treatment of any surgical complications.

Hopkins does about 30 transplants from living donors per year with “excellent results.” But since the procedure involves some level of risk, doctors typically reserve the option for patients who are very unlikely to receive a transplant from a deceased donor and badly need a liver. They also need a living donor who is healthy, has a compatible blood type and understands the risks of the operation.

Ghuman wishes he could donate part of his liver to Harvir. But his blood isn’t type O — the blood type Harvir needs from his donor. His wife and daughters also don’t have the blood type.

That’s how the idea for a flyer came about.

In April, after Hopkins officially added Harvir to its waitlist, Ghuman created a Google Voice phone number. He then put that phone number and his email address on a flyer with information about his son’s medical situation and the Hopkins liver transplant program.

“We are reaching out to all our communities to find a generous donor who can help save our brilliant and sweet son’s life,” reads the flyer. To the left of the text is a smiling illustration of a liver that’s clutching a tiny red heart in one hand and waving with the other.

In the past two months, Ghuman said he has distributed the flyer to churches in the Severn area, as well as community organizations like Rotary and Lions clubs. His brother-in-law posted it on his Facebook page, and his friend paid for an advertisement on Instagram. One recent Sunday, Ghuman paid for the flyer to run in The Sun.

He hopes the flyer and advertisements put his family in touch with a willing donor, but also that they raise awareness for living liver transplants.

Your liver, a football-sized organ that lives in the upper part of your abdomen, has a lot of important jobs, Cameron said. It makes a lot of proteins that your body needs and gets rid of toxins that your body doesn’t need. So when it starts to fail, bad things happen. You might bleed very easily or vomit blood. You might become very confused and disoriented, since your body isn’t able to get rid of toxins from food and liquid you ingest. Your belly may fill with fluid. End-stage liver failure is one of the most common causes of death in the country.

Liver transplant recipients tend to do well at Hopkins. Cameron said 98% of Hopkins’ patients are alive and well one year after the procedure, compared with 90% nationwide.

“That’s pretty miraculous, given how sick you have to be to get a liver transplant,” he said.

Once transplant patients get a liver, the organ tends to last indefinitely, Cameron said. Patients also tend to require fewer immunosuppressive medications in the long run than other transplant patients, like those who receive a heart or kidney. But the operation is complicated and can last anywhere from four to 10 hours. Some patients lose a lot of blood.

The recovery also can be challenging for transplant patients, especially those who were very sick before the procedure, Cameron said. Some stay in the hospital for months before they’re well enough to go home.

That likely wouldn’t be the case for Harvir, who is young and relatively healthy, Ghuman said. He’d likely be in the hospital for a little over a week, then come home to complete his recovery. It could be up to two months before he is back to full health, but Ghuman and his wife are ready to take care of him. They have plenty of leave saved up at work.

That’s the “small stuff,” Ghuman said. Waiting for a call — either from Hopkins or someone who saw the flyer or advertisement — is much harder.

“Every day you go through this. You wake up in the morning, every week goes by, and I worry about his health,” he said. “What if his lesions turn into, you know, the C?”

He doesn’t like to say the word cancer.

The wait has been frustrating for Harvir. He wanted to go to San Diego for a conference, where research he worked on would be presented, but — in case a transplant becomes available — he has to stay within a couple hours’ drive of Hopkins.

Harvir is hopeful, though. If he gets a transplant soon, he might be able to return to the University of Maryland in the fall to finish his undergraduate degree. For now, he’s working part time at the Naval Research Laboratory in Washington. There are soccer tournaments he’s looking forward to watching this summer, and he has plenty of plans to hang out with friends and go hiking.

Meanwhile, Ghuman will be by his phone, waiting for it to ring.