The gift of life

Gary Garcia is alive because of a change of policy that allows people with HIV to receive organ transplants

DAVID TAFFET | Senior Staff Writer
taffet@dallasvoice.com
When Gary Garcia was diagnosed with HIV in 2007, the original anti-retroviral medication was, he said, “harsh.”
A year later, he began having issues with his gall bladder. So he had it removed. Doctors warned him then to watch out for non-alcoholic liver disease since, without a gall bladder, every toxin in his body would be filtered through his liver.
“I couldn’t sleep,” Garcia said. “I was put on meds to help me sleep, and two weeks later I was not feeling well.”
Instead of starting him on 10 mg of the medication intended to help him sleep, doctors prescribed 100 mg. It was too much for his weakened body to handle. “With all the meds, it put me into liver failure,” Garcia said. “I woke up one day, and I was yellow.”
He went to the doctor, who was sure Garcia must be using drugs. But Garcia insisted the only time he “shot up” was when the nurse gave him an IV. “You have two weeks to live,” the doctor told him.

At the time, Garcia and his husband lived in San Diego. Their medical coverage was through a Kaiser HMO, and they could only seek treatment through a Kaiser physician and only go to a Kaiser hospital if they wanted insurance to cover it. That specific hospital did not offer transplants, Garcia said, and to get the surgery he needed elsewhere, he had to get a referral.
Garcia was told he had to “go through the process,” something that would take months, even though his doctor gave him only weeks to live. “The process” included Garcia going to AA, even though he didn’t drink.
“They look at you like you’re a drunk and an addict,” Garcia said. “I learned to be an advocate for myself.”
Garcia’s doctor told him he needed a transplant, but “they don’t give transplants to people with HIV.”
“Who made you God?” Garcia demanded of his doctor before insisting on getting a second opinion.
The second doctor asked him, “Why aren’t you on the transplant list?” Getting on the transplant list would take about six months.
Then his life was disrupted again: Garcia’s husband was transferred to Texas. The move turned out to have both advantages and disadvantages.
Among the advantages: His insurance switched from HMO to PPO, allowing him more flexibility in choosing doctors, and the waitlist for a liver transplant was shorter. On the downside, he had to start the process of getting on the transplant waitlist all over again.
In October 2014, Garcia and his husband bought a house in Haslet, just north of Fort Worth, and Garcia went to Baylor All Saints Hospital in Fort Worth for care.
By January 2015, transplants were becoming more common for people with HIV. Often the donor organs were coming from other people with HIV. Dallas Methodist Hospital was the first in the area to perform those transplants, and Baylor quickly followed. Many of those early surgeries were kidney transplants, because early medications for HIV affected kidney function more than anything else.
But with Hepatitis C running rampant and drug usage high in the gay community, liver transplants were also becoming more common. Garcia had neither problem.
In order to get on the transplant list, he needed his HIV to be undetectable.
When he met with his transplant team, his doctors diagnosed him with a bile backup that caused Garcia to often be confused. He began going to All Saints every other day, having as much as 14 liters of bile drained each visit.
While they got his HIV under control and he got placed on the transplant list, his team of doctors told him, “We don’t do HIV transplants here.” He’d have to go to Baylor in Dallas.
Although he lived in Haslet, when Garcia got the call that a liver was available, he’d have to be at Baylor within an hour. That meant always keeping a bag packed and a full tank of gas in the car, ready to go at a moment’s notice.
Garcia’s MELD score — the Model for End-Stage Liver Disease that prioritizes people on the transplant list and goes from 6 to 40, with a higher number indicating more severe illness — got as high as 37. That score would have placed him high on the transplant list.
Then Garcia went to the doctor with a stomachache. He thought it was his appendix. Doctors thought it was his gall bladder. When he told them his gall bladder had already been removed, they decided it was just a stomachache but did an ultrasound that proved Garcia right.
Garcia said he wasn’t sure if his doctors appreciated how in tune he was with his body and what was wrong or if they were more annoyed that he could tell them precisely what was going on.
After recovering from his appendectomy, he was finally on the transplant list and in September 2016, was No. 2 on the list.
In October, he got a call from Baylor Dallas. They had a liver from a 19-year-old and were flying it in.
But a liver needs to be taken from a body quickly. If the liver’s valves close and the organ loses oxygen, it can’t be used. Garcia said the doctors told him this donor had died too slowly to use his organs.
In November, doctors called to tell him they had a 45-year-old man’s liver. But when they looked closer, they found pus under the gall bladder. So that liver couldn’t be used, either.
“On Dec. 4, I got a call at 3 a.m.,” Garcia said. He had to be at the hospital in an hour. The doctor told him they had the liver from a 33-year-old male.
“We think it’s a go,” they told him.
Surgery took eight hours. His transplant was the first one done by an all-female transplant team at Baylor, he noted proudly.
“My husband waited next to my bed,” he said.
Although still heavily sedated, he remembers his husband telling him, “You made it through.”
Garcia recently passed a year with his new liver. Most rejection takes place in the first six months, so he passed that milestone. His doctors changed his HIV medications to ones that work better with the anti-rejection meds that all transplant patients must take.
He did have one setback — a hernia — in September this year. Doctors told him later that hernias are common with liver transplants.
Garcia said recovery from the hernia operation was more painful than recovery from the transplant.
“I prayed a lot,” he said, adding that his pastor, the Rev. Carol West, prayed with him. “I feel blessed for that second chance.”
He wrote a letter to the family of the organ donor thanking them for saving his life. “I want them to understand his legacy,” Garcia said.
The transplant organization would have delivered the letter to the family after six months, and it’s up to them if they would like to meet. Garcia said he hasn’t heard from them yet.
He also wants people living with HIV to know that, when needed, organ transplant is an option available to them. While not every hospital has experience with transplantation to people with HIV, it’s becoming more common.
And people with HIV can donate their organs, too. Organs taken from people who had HIV are transplanted into people living with HIV. With anti-rejection medication and the right HIV meds, the person receiving the organs can recover from organ failure and remain undetectable.
Since recovering, Garcia has been devoting his life to telling his story to make a difference.
“I want people to know they can live a normal life,” Garcia said.