‘Why can’t I get dialysis here?’

‘Why can’t I get dialysis here?’

Posted: Friday, Dec 30th, 2011
By Ken Curley, The Brookings Register

John Gustafson is still making daily trips to Sioux Falls for dialysis, despite an ongoing effort to secure treatment locally. Gustafson is a candidate for a heart-kidney transplant. Register file photo

• Brookings patient fights for care in his own community

John Gustafson is a medical marvel. He’s got wires running from his chest to a couple of battery packs he carries with him at all times, a hog valve in his heart – his kids call him “Robopig” – and a pump implanted below his heart that pushes blood directly from his left ventricle into the aorta. It dramatically improves the function of the heart.

The Brookings Realtor also needs dialysis six times a week because his kidneys have failed, and he’s a candidate for a heart-kidney transplant.

But right now, the problem he can’t seem to fix is not his physical condition – it’s the brick wall he’s run up against in his treatment.

Gustafson lives just four blocks from the Brookings hospital, which is home to the Prairie Lakes Dialysis Unit, a six-day-a-week treatment center.

The problem is, the owner of the Brookings outpatient dialysis unit – Prairie Lakes Healthcare System of Watertown – refuses to treat Gustafson in Brookings.

Consequently, he’s forced to rely on volunteers to drive him to Sioux Falls every day but Sunday – two hours round-trip on the interstate and another four hours undergoing the blood-cleansing routine.

Prairie Lakes – which leases space from the Brookings Health System – has a legitimate reason for refusing to treat Gustafson. Its staff nephrologist, Dr. Tina Melanson, has ruled that it’s just too risky to treat an LVAD patient like Gustafson without on-site specialists to monitor the procedure.

That’s because there are too many unknowns with the LVAD – the left ventricular assist device – he carries in his chest. It’s relatively new technology – there are only six of them currently in use in the state, 180 nationally, according to Gustafson.

What’s particularly frustrating for Gustafson, though, is that Sanford Health will treat him, both in Sioux Falls and in Madison, and Avera officials have said they’d treat him as well. (Ironically, Dr. Melanson was until recently a staff specialist for Avera.)

Moreover, both Sanford and Avera have indicated they’d provide oversight of Gustafson’s treatment in Brookings, but Prairie Lakes has declined to cooperate.

The healthcare system’s reluctance to treat Gustafson in Brookings is particularly baffling to Dick Peterson, owner of the Cinema 5 theaters in Brookings and a lifelong friend of Gustafson – they were wrestling buddies on the Bobcats’ state championship team in the late 1960s.

When Peterson first learned of Gustafson’s health problems, he got involved by becoming the “Wednesday driver” for his friend’s dialysis treatment.

“Then I started checking. Since we have dialysis here, I wondered why we couldn’t do it here,” Peterson recalls.

Some roadblocks cleared

An anonymous donor offered to provide any special equipment needed for Gustafson’s local treatment, but Peterson discovered that his friend didn’t need a special machine – only a regular dialysis unit.

“Wow, I thought. That took care of that roadblock.”

Then it was training. Prairie Lakes said the dialysis technicians had to have special training to deal with Gustafson. The Mayo Clinic on Nov. 22 and 23 sent in a specialist who trained the local staff at no cost.

Another roadblock down.

Then, when nephrologists from both Avera and Sanford offered to oversee Gustafson’s treatment, everybody thought the problem was solved: even John’s doctor at the Mayo Clinic told him “it looks like you’ll be getting your dialysis in Brookings soon.”

That took care of the third roadblock, or so the Gustafsons and Peterson thought.

Prairie Lakes balked. They still wanted a cardiologist and a nephrologist on site for Gustafson. Otherwise it was no deal.

“Why keep putting out these carrots if it’s not going to happen?” Peterson asks. “But they kept telling us these are the things we need to overcome (to have John treated locally), and we have overcome every one of them.”

“We’ve driven 19,000 miles since July 1 taking John to Sioux Falls, and the volunteers have spent roughly $3,200 in gas – they’re not paid and they’re not reimbursed. And John lives four blocks from the hospital and can t get dialysis there. That’s why I keep banging my head against the wall … if it hadn’t been for the roadblocks.”

“(Prairie Lakes) slammed the door shut,” said Dawn Gustafson, John’s wife. “Dr. (Rick) Holm sat us down last week and told us that Tina had given a presentation to the doctors and hospital staff. She flat-out said that dialysis units do not take LVAD patients on an outpatient basis, and that’s not true. She said even the Mayo Clinic says that, and it’s not true.”

Catch-22 for transplant

Here’s the real Catch-22 for Gustafson. Right now, some of his medical numbers are a little too high for him to actually be placed on the transplant list. An adjustment in medications will help that.

But the specialist who treats him also wants Gustafson in an exercise class, which he feels will not only make his Brookings patient stronger but will qualify him for a transplant.

But a six-hour-a-day dialysis regimen – with two hours on the road – prevents Gustafson from starting. Not only do the hours in dialysis crowd his schedule, the daily travel exhausts him to the point he doesn’t feel he could handle the added rigors of a daily workout.

The issue would go away if he could undergo dialysis locally.

Gustafson says there has to be more to Prairie Lakes’ reluctance to treat him in Brookings. “I go to Sanford now – it’s the only hospital that would take me at the time (when he started dialysis). At most, I see the nephrologist once a week, sometimes once in two weeks. And the Sanford nephrologist has agreed to come up here if needed.”

Gustafson explains that it’s not necessary for the specialist to be at the dialysis, but he does read and analyze every medical printout taken during dialysis. And in six months of daily treatment, Gustafson has never had a problem in Sioux Falls.

“Some days it’s very depressing,” Gustafson admits, “no question about it. I’d like to get on with my life and get healthier. I can’t work. I’ve got a senior in high school, a junior in high school, a sixth grader – it’s not like I don’t have a young family. I need to do whatever I can to support them and love them. But I’ve been a burden to my family. It’s (his illness) totally changed our family our life, what we do. We were hoping we were heading into our golden years.”

Way to help other patients

Still, Gustafson sees his illness and the struggles he’s currently undergoing as a way to help other heart and kidney patients who follow in his footsteps. In Rochester, he nearly died – several times. During one of those early episodes, he had an experience – a religious experience – that changed him:

“When I came to, I told Dawn, ‘I don’t have to worry anymore – they told me I’m going to be OK.’ I really feel that God, at that time, had a purpose for me to be alive and help other people. … That’s my role right now.”

So what’s next? The Gustafsons and Peterson say they’ve been blessed with good roads and a mild winter, but if the weather turns foul and the drivers can’t make it to Sioux Falls, John’s life could be in danger. “If we’re stuck here, homebound for even a day,” says Dawn, “John’s in trouble. He gains 20 pounds of fluid in a day, and that affects his breathing.”

What Peterson and the Gustafsons want now is to get the story of John’s struggle out to the public.

Community pressure

And they’re frank about asking the community to pressure Prairie Lakes to reconsider its decision. They can’t escape the feeling they’re pawns in a medical power struggle between Prairie Lakes and the other care providers.

“Dawn and I really feel bad about this – we know the pressure is going to make the Brookings hospital (by association) look bad, and that’s not what we’re trying to accomplish. We think the service we get here is terrific. We believe in our hospital. But we would like them to force the nephrologist to take me on,” John says.

“Or maybe it’s time the nephrologist and the Watertown group be given an ultimatum. We can tell them to vacate. … Sanford, Avera would love to come into Brookings and set up a dialysis unit. Both of those nephrologists have said they would take me on, and I wouldn’t be here talking to you (the reporter).”

Peterson and the Gustafsons want their community friends to call and write city council members and the hospital board to show their support. Peterson has even set up a website – wecareaboutjohn.com – that tells John’s story and seeks community involvement. (It also includes a sign-up calendar for volunteer drivers for John’s trips to Sioux Falls.)

Both Dawn and John emphasized that they don’t want the Brookings Health System – which only leases space for the dialysis unit – “to look like the bad guy.”

“They’ve really gone to bat for us, and we thought the Watertown group would give in,” says Gustafson. “I thought, ‘this is going to be the greatest Christmas present I could get.’ I was looking forward to it, and so was my whole family.”

Contact Ken Curley at kcurley@-brookingsregister.com.

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