By Susan Detlefsen, Marketing Manager
“When you hear hoofbeats, you look for horses, not zebras.” That’s an expression that Bob Heuermann became familiar with during a very unexpected situation over the summer. Doctors use that expression when searching for the cause of a patient’s symptoms. Another version of this is known as ‘Occam’s razor’, “The simplest solution is usually the correct one.” As Bob can testify, looking for zebras saved his life.
Heuermann has served as Executive Director of the Catholic United Financial Foundation since 2012. He regularly meets with individuals and organization leaders on charitable gift planning, legacy strategies and donor advised funds. He doesn’t charge for his expertise at these appointments; it’s all part of the non-profit mission of the Foundation. People may recognize Heuermann from his many appearances leading charitable giving workshops held around the five-state area.
Unfortunately, Bob hasn’t been helping Members with their charitable gifts or leading legacy planning workshops since July. Instead, Bob spent the summer fighting for his life against a mysterious and previously-unknown condition. “I started feeling not well. With COVID and influenza and other things going on, I assumed I caught a virus.” Health professionals ran tests looking for a usual list of horses: COVID, influenza, pneumonia, viruses. Bacteria, even a fungal infection was considered. There were hoofbeats, but no familiar horses in sight yet, and Heuermann’s condition wasn’t improving. His personal care physician suspected Bob had a nasty case of pneumonia, ran a chest X-ray and CT scan and sent him home with medicine.
The next day, Bob’s wife Wendi told him she wanted to take him to the hospital. Bob resisted. She took out a pulse oximeter they had bought during the pandemic; the finger-worn device measures oxygen saturation in the blood. They agreed that if Bob’s oxygen saturation was below normal — less than 92% — they would go. Once placed on his finger, the device read 74 percent. “I told her, ‘That’s wrong. It’s broken,’” Bob recalled. Wendi slipped it on her finger and got a 97 reading. They switched the device between fingers a couple of times and got the same readings – 74 percent again. “I said, ‘Let’s go to the hospital.’”
“I wasn’t in a lot of pain, but I was not getting the oxygen I needed. I was getting more and more tired and wanted to sleep basically forever.” In the ER Hudson Hospital, doctors put Heuermann on oxygen but the oxygen saturation of his blood, already dangerously low, was still dropping. Heuermann was transferred to Health Partners Lakeview Hospital in Stillwater, Minn. Within minutes, doctors had him intubated, placed on a ventilator and sedated to try to save his life.
During the next two weeks while he was unconscious, doctors scrambled to discover what was killing Heuermann. “It had gotten to the point where they had tried everything they could. They were at a loss of what to do. They had looked for every horse they could find.” Doctors left the familiar herd behind and started looking for zebras. They found a very rare but recognizable animal—an autoimmune disease called ANCA vasculitis. Only about 15,000 cases of the disease are known in the U.S. An autoimmune disease is what happens when the body’s immune system, designed to fight invaders like viruses and bacteria, starts to attack the body itself. Normally when the immune system detects a foreign invader it creates antibodies to fight it off. ANCA vasculitis causes the body to create something called autoantibodies that attack healthy cells.
(A functioning ECMO machine similar to the one that helped Robert Heuermann
heal when an autoimmune disease attacked his lungs and kidneys in July)
“Basically, my own immune system was attacking my healthy lungs and my kidneys like it would a virus.” Bob was given a 30 percent chance of survival; he was not expected to live. One of Heuermann’s Lakeview doctors had recently attended a seminar about the new ECMO program at HealthPartners Regions Hospital in St. Paul, Minn. ECMO stands for “extracorporeal membrane oxygenation.” It is a machine that pumps blood outside of the body, removes carbon dioxide, adds oxygen, warms the blood and then returns the blood to the patient’s body. The doctor appealed to Regions Hospital to take on Bob’s case. ECMO was a new technology that had not yet been tried on a patient with ANCA vasculitis.
However, Regions only had three ECMO machines. If one wasn’t available, the next closest ECMO program was located more than four and a half hours away in Madison, Wis., – a trip that Bob likely wouldn’t survive. Regions had an opening that evening. Bob was transported to St. Paul and tubes called cannulas were inserted into his femoral artery and jugular vein to pass blood to the ECMO machine. The machine essentially took over the functions of Heuermann’s heart and lungs. Heuermann attributes this alignment of circumstances – the timing of the doctor’s seminar and his assignment to Bob’s case, and the ECMO being available less than 30 minutes away – to Divine Providence. “God didn’t want me to go yet because everything that could have gone right went right,” Bob said. “Everything was available at the right time and people knew the right things when they needed to know them to save my life.”
After the ECMO machine and chemotherapy drugs to suppress his overactive immune system, Heuermann was slowly beginning to recover, but he had a myriad of conditions that required a month-long hospital stay. He had a chest tube from a collapsed lung, a feeding tube, a ventilator was breathing for him, a port for kidney dialysis, multiple IVs. Small victories came with each step of his recovery and removal of the tubes and medical devices.
The treatment of Heuermann’s ANCA vasculitis through the use of ECMO will likely be published in a medical journal in the future. “I’m going to be a proof of concept that this is a way to save the lives of people that normally wouldn’t have survived,” Bob said. He has already signed a medical release so his case could be made public. “I don’t want to use the term ‘miracle’ because I don’t think you should ever use that term lightly,” Bob said. “Everything I presented with to the doctors made them look for the simplest answers. And here it was, something that most doctors never see in their careers.
To have everything in place to save my life was providential.” At the time of this magazine’s printing, Bob is in what is considered the “active phase” of ANCA vasculitis. “It is a chronic condition I will have for the rest of my life. I will be on maintenance, drugs, prescriptions and treatments,” Bob said. “I will be continue to be immunosuppressed the rest of my life, so I need to be careful.” Bob’s has been able to return to his work at the Foundation. Unless his condition flares up, he hopes to be in full remission of the disease by January.
The experience has led Heuermann to self-reflection and confirmation of his Foundation work. “I said to myself and to Wendi and others, ‘Why me? Why am I still here?’ I understood that most of the people that got to my level of disease didn’t make it. So, why me?” Bob asked. “Maybe my future is to evangelize about end of life, estate planning, and charitable giving. I spent 12 years telling people you’ve got to do these things. You never know when you’re going to walk outside and the big yellow bus is going to run you down. I did not see the big yellow bus of vasculitis coming at me. Nobody did and I was not prepared. I did not heed my own advice.
So maybe my job now is to continue what to help people to be able to fulfill not only their end of life and estate needs, but also the transfer of their gifts to the next generation, be it family, friends or charitable organizations like the Church.” “My goal is to use the experience to help others even more than we already do. That’s what is my future and my prognosis as long as I am healthy enough to do it.”
Sources: https://unckidneycenter. org/kidneyhealthlibrary/glomerular-disease/anca-vasculitis/ https://www.mayoclinic.org/tests-procedures/ecmo/about/pac-20484615, https://www.hopkinsmedicine.org/health/ treatment-tests-and-therapies/extracorporeal-membrane-oxygenation
