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Hmong patients 'suffering needlessly' from kidney ailments
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Dr. Andrew Portis had hoped for a textbook surgery to remove kidney stones from his patient Peter Xiong. But he says once he got into the kidney it was hard to move around it, because the organ was so damaged. (MPR Photo/Lorna Benson)
A Twin Cities physician is trying to figure out why the Hmong patients he sees appear to be more prone to kidney stones than his patients who are not Hmong. Dr. Andrew Portis also is hoping his research will shed light on why many Hmong patients refuse treatment until they have reached a crisis.

St. Paul, Minn. — If you've never had a kidney stone, they hurt a lot.

"It's worse than giving birth to twins without an epidural," says Dr. Andrew Portis. "It's worse than putting a nail gun through your hand. It's worse than breaking your leg. And one guy told us it's worse than cutting off his finger with a buzz saw." But despite that kind of pain, many Hmong patients resist getting early treatment and are more likely to need surgery.

Peter Xiong is on his belly, unconscious, his tan back slathered with deep red, germ-killing iodine. The 46-year-old Hmong man is undergoing his second kidney stone surgery.

His first was almost 30 years ago, when he moved to the U.S. from Laos. He was a teenager then and his left kidney was clogged with more than 100 stones. Xiong doesn't have near that many this time, but the stones do appear daunting to his urologist Andrew Portis.

"We're down looking at the large stone that he has. It looks like it's pretty packed in there. Just as it's shaping up now I'm kind of suspicious we're going to need a laser to break this thing up."

The large stone is actually rather small. It's about the size of a kernel of corn. But it's big enough to cause some serious problems. Recently it became dislodged and passed out of Xiong's kidney. Now it's stuck in a tube that drains urine into his bladder.

But it turns out the laser isn't necessary. Portis is able to grab the stone with a device that grips it with tiny threads of wire. Portis knows he has at least three more to go, according to Xiong's CAT scan.

Without this surgery, Portis says Xiong would have lost his kidney within a few months.

It sounds dramatic, but it's actually not an uncommon outcome for some Hmong patients. It's a trend that Portis noticed as soon as he moved to St. Paul five years ago. The city is home to most of the metro area's 40,000 Hmong residents.

In his new practice, Portis saw a lot of Hmong patients with kidney stones. It seemed unusual to him, but he didn't want to draw any conclusions about what might be happening without some hard data. So Portis reviewed two years worth of his clinic's records. He looked at the medical charts of some 200 Hmong patients.

"We found that somewhere between 6 to 8 percent of the patients that we saw needed to have a kidney removed. At least that many -- maybe double that number -- had already lost the kidney's function," according to Portis.

That turned out to be four to five times the rate of kidney removal for his clinic's non-Hmong patients.

"I think we've taken out about three kidneys for stones in the last few years from the entire non-Hmong population. So, I mean it just never happens. It never should happen," he says.

Portis also found that Hmong patients are not only more likely to lose a kidney, they're also more likely to have kidney stones. He says nearly half his Hmong patients have been diagnosed with stones, compared to about 11 percent of his non-Hmong patients.

And when lab technicians analyzed those kidney stones, Portis says they found that Hmong people have a predisposition toward forming a certain type of stone.

Dr. Portis found that Hmong patients are more likely to have kidney stones. He says nearly half his Hmong patients have been diagnosed with stones, compared to about 11 percent of his non-Hmong patients.

"They clearly make an unusual type of stone; the stone is made of uric acid, which we see in half of Hmong patients, and only see in about 7 to 10 percent of non-Hmong patients," says Portis. "So they're off the charts for that. They have the highest incidence in the world of this particular kind of stone."

Portis says the uric acid stones are often bigger and jagged, and potentially more dangerous to the patient, because their shape makes them more likely to get stuck. He doesn't know why Hmong people make more uric acid stones. But he does know that a normally effective treatment doesn't work for them.

Portis and a colleague are studying whether the Hmong diet causes the stones. He also wonders if there's another reason that dates back to Hmong survival techniques in Laos.

"Having come from an area where particularly the people who are in the outlying villages didn't have fresh running water, and there were a lot of water-borne diseases, they're very careful about the water they take in," says Portis. "And that may be something that may decrease their overall fluid intake."

People are at higher risk for kidney stones if they don't drink enough water.

Even though Portis doesn't know yet how to stop these stones from forming in his Hmong patients, he says it's clear that he can treat them long before they end up in an emergency room. But he hasn't had much luck in getting his Hmong patients to cooperate. He says that's definitely the case with his patient Peter Xiong.

Portis says he discovered that Xiong's stones had come back two years ago, during an exam. Portis wanted to remove them immediately, but Xiong didn't. Xiong's case is typical of the Hmong patients Portis sees.

Xiong explained his reluctance a few days before his surgery. He says a doctor once warned him not to get more than three surgeries.

"Too much damage your body. I say, 'OK, I try anything else if I could,'" says Xiong.

But Portis doubts that any western doctor would tell a patient they had a three-surgery limit for kidney stones. He says he thinks a lot of Hmong patients are getting medical advice from shamans and herbalists.

Peter Xiong admits that's his preference. Shortly after he was diagnosed with more kidney stones, Xiong says he sought out an herbalist.

"I use what I call a Chinese medicine, the root medicine. I took for maybe about a week. I passed two of them out. So I said, 'OK, maybe all come out,'" he says.

Xiong says he was fine until a few months ago when the pain returned. Still, it wasn't too uncomfortable. So he picked up more herbal medicine.

"I try, try for a couple months. Until right now I still drinking some Chinese medicine. This doesn't help because maybe they stick, stick in my kidney too hard. I cannot get it out this way, so I decide to remove it," Xiong says.

Back in the operating room, Dr. Portis finally gets the chance to remove the last of Xiong's kidney stones. The first one was easy to find. But the remaining three are trickier. They're buried deep in the kidney, and one in particular is firmly attached to the kidney wall.

Portis uses ultrasound to break up the stone. But soon he calls it quits and says the procedure has not gone that well.

"We're having more bleeding than we expected and we're not very confident that we have all the stones out, but right now we can't really see well enough to get anything else," Portis says.

Portis had hoped for a textbook surgery, but he says once he got into Xiong's kidney it was hard to move around it because the organ was so damaged.

"It's very frustrating not to be able to do the best that we can," says Portis. "In the end, we end up getting hung up and we hate to get hung up, so we're going to be mad for a day."

Portis is most frustrated by the fact that his Hmong patients appear to be suffering needlessly. He says stones usually don't cause kidney damage if they're detected early.

But Portis says this situation is not simply a matter of early diagnosis. He says it's clear that western medicine has some hurdles to clear with the Hmong population.

"Hopefully you know we can reach a stage where we overcome all of these cultural barriers, and no longer end up with problems that are of behavioral making and we're just dealing with problems of physiology," says Portis.

"Although it sounds kind of daunting to cure all their stones, that I can wrap my mind around. How we're going to cure all of the cultural things, I have no idea," says Portis. "It may just be until the Hmong people have been here long enough, and become comfortable enough, and we're able to help them better."

Portis suspects there may be many more Hmong patients out there who haven't had their kidney stones removed and are addressing their condition with dialysis instead. He's hoping to learn more about the extent of the problem by collecting information from dialysis centers around the Twin Cities.