Tom Heisler was on his last legs when he arrived at Mayo Clinic in September 2024. He had a dire and complicated medical history, and his health was rapidly declining. After nine months of misdiagnoses and unsuccessful treatments, he received the correct diagnosis and a new lease on life in just nine days at Mayo Clinic. 

Tom Heisler was in good health. The retired psychologist lived an active, vibrant lifestyle — regularly playing golf, writing poems and keeping up with his many other hobbies. But when he contracted COVID-19 for the third time in November 2023, his health began to decline.

He had a persistent cough that wouldn't go away despite multiple courses of antibiotics, and he began to experience additional symptoms: significant weight loss, weakness, loss of appetite, blurred vision and gait disturbance, among others, which continued to worsen. 

Over a nine-month span, Tom saw several specialists in his hometown. He received multiple diagnoses: bacterial pneumonia, crypto-organizing pneumonia and cryptococcal pneumonia — all treated without success. His symptoms continued to worsen, and he developed swelling near his salivary glands. 

His daughters, Bess and Lauri, and his four grandchildren reluctantly refrained from visiting Tom because they didn't want to risk spreading germs that could make him sick. When Bess visited him in June after not seeing him for some time, she was alarmed at how unwell he was. 

"I didn't really know how serious it was until I saw him. His eyes were completely glassy. He had lost a lot of hair and weight. He could barely walk, and his voice was getting weaker and weaker," says Bess. "It was really scary seeing my dad, who's always vibrant and full of life, in such a state of despair."

Bess knew her dad desperately needed help. She asked her colleagues for recommendations, and Mayo Clinic was frequently suggested. 

After another CT scan in August showed his treatment wasn't working, Tom was ready to visit Mayo Clinic. On Sunday, Sept. 15, 2024, Tom, Bess, and Lauri flew from Little Rock, Arkansas, to Rochester, Minnesota, desperate for answers and hope.

"I thought he was dying," says Bess. "Before we left for Mayo Clinic, I told Dad, 'I don’t know what's going to happen and what we're going to find or not find, but I love you and I'm honored to be your daughter.'" 

Reassessing assumptions and starting from scratch

Over the next week, other diseases had to be ruled out: lupus, myeloma and other forms of cancer, and cryptococcal pneumonia. On Monday morning, Tom and his family advocates had their first appointment at Mayo Clinic with Dr. Pritish Tosh, an infectious diseases specialist. Dr. Tosh suspected that Tom's diagnosis of cryptococcal pneumonia was incorrect. 

"In situations where people have cryptococcal lung infection with relatively normal immune systems and no evidence of meningitis, I would have expected the oral antifungal medicine he was given to have been very effective. However, despite several months of being on the right antifungal medicine, he was feeling worse, the lesions in his lungs were progressing, and he was developing kidney injury," says Dr. Tosh. "Rather than assuming that all his symptoms were related to cryptococcal disease not responsive to antifungal therapy, I thought that, at that point, it was more likely that the cryptococcus was just a bystander in his lung not causing any disease and that his symptoms were being caused by something else entirely. It was time to reassess our assumptions and start from scratch."

Tom then had appointments with Dr. Nadine Abdallah, a Mayo Clinic hematologist/oncologist, and Dr. Wigdan Farah, a Mayo Clinic pulmonologist. They reviewed Tom's symptoms and history, and then ordered a series of tests to narrow the diagnosis. Dr. Abdallah wondered if Tom might have an underlying autoimmune disease.

"In the outside world, you meet with a specialist and they'll give you a diagnosis within 15 minutes, and then you have to wait three or four months to see if the treatment for that diagnosis works. At Mayo Clinic, you see multiple doctors a day and receive countless tests because they don't want to give you a diagnosis until they are very satisfied and confident it's the right one," says Tom. "Everything works seamlessly and rapidly. Mayo's system is brilliant and, I think, as pivotal as the quality of the doctors."

A diagnosis in the details

On day four of Tom's Mayo Clinic journey, he met with Dr. Wisit Cheungpasitporn, a Mayo Clinic nephrologist. During his appointment, Tom mentioned that he felt much better after receiving a steroid for his gout attack. 

"If Tom was taking the steroid at the time of his suspected lung infection, the steroid should have made him feel worse, not better," says Dr. Cheungpasitporn. "With that small but important detail, and given the multi-organ involvement, progressive nature and lack of full response to antifungal therapy, IgG4-related disease (immunoglobulin G4-related disease) became a strong consideration."

IgG4 is a type of antibody that helps regulate the immune system. However, in some people, IgG4 becomes overactive and starts attacking healthy organs, causing inflammation and fibrosis (scarring). This leads to IgG4-related disease (IgG4-RD), which can affect different parts of the body, such as the lungs, kidneys, pancreas, bile ducts, salivary glands and lymph nodes. If left untreated, it can cause organ damage over time.

IgG4-related disease is tricky to diagnose because it mimics infections, cancer and other autoimmune diseases. A combination of factors is considered, including symptoms, blood tests, imaging such as CT, MRI or PET scans, and a tissue biopsy, which is the most definitive test in diagnosing the disease. 

"When Dr. Cheungpasitporn said IgG4 might be causing all my symptoms, I almost levitated off the couch. My family and I were close to tears," says Tom. 

Tom had a bronchoscopy scheduled the following Monday. Should they wait for the results of the bronchoscopy and lymph node biopsy, or move forward with a kidney biopsy?

"Given how his symptoms were progressing, I had a detailed conversation with Tom and his family about the risks and benefits of each approach. They put their trust in me, and we moved forward with the kidney biopsy," says Dr. Cheungpasitporn.

The renal pathology team was instrumental in confirming Tom's diagnosis of IgG4-RD. 

"Mayo Clinic has the very best kidney pathologists. Dr. Sanjeev Sethi helped interpret the kidney biopsy finding, ruling out other conditions. Dr. Loren Herrera Hernandez played a key role in reviewing the pathology and ensuring an accurate diagnosis. Dr. Lynn Cornell, Mayo's IgG4 expert, identified the classic features of IgG4-related kidney disease on the biopsy," says Dr. Cheungpasitporn. 

Answers, a plan of care and hope

During Tom's bronchoscopy, his family received a phone call from Dr. Cheungpasitporn confirming the IgG4 diagnosis. 

"Delighted doesn't even come close to describing what we were feeling. There is no doubt in my mind that my dad would have passed away before Christmas had he not been seen at Mayo Clinic," says Bess. "We are forever grateful and are extraordinarily lucky that we walked away with answers, a plan of care and hope."

IgG4-RD responds well to treatment when caught early. Tom immediately began treatment, and within weeks, he made a complete transformation.  

"When my kidneys and lungs improved, when the blurring in my right eye substantially dissipated, when I gained my weight back and reclaimed my energy, and when my blood markers looked so much better, I'm not sure who was more excited and proud — Dr. Cheungpasitporn or my family and I," says Tom. 

It has been nearly one year since Tom's diagnosis. He is feeling great and is back to doing the things he enjoys. 

"Any doctor can treat a condition. It's the diagnosis that counts, and Mayo Clinic is the best diagnostic place in the world," says Tom. "If you don’t know what's going on and your treatment isn't working, you need to go to Mayo Clinic."

Fiercely investigative and integrative

Tom's follow-up care is coordinated through his local physician, and Dr. Cheungpasitporn continues to monitor Tom's response to treatment and the results of his blood work every two weeks. 

"My care coordination works beautifully. Any time I have a question for Dr. Cheungpasitporn, he responds within a day or so, which, given the load of patients in our modern medical delivery system, might be considered nothing short of a miracle," says Tom.

Reflecting on their whirlwind nine days at Mayo Clinic, Bess says it was a moving experience full of memories that they will have forever. 

"Every single doctor, nurse, secretary and scheduler was absolutely lovely," says Bess. "We were made to feel valued and part of their fiercely investigative and integrative team."

Most importantly, Tom has his life back. 

"I can say, without reservation, that Dr. Cheungpasitporn saved my life," says Tom. "In the august and ancient tradition of healers, he is one."

Watch: Leaving Mayo Clinic with answers, a plan of care, hope

Related Articles