Sharing Mayo Clinic

Stories from patients, family, friends and Mayo Clinic staff

Share this:
October 15, 2018

Surviving and Thriving After Life-Threatening Illnesses

By SharingMayoClinic

Within the past six years, Devender Tulla developed two serious conditions that could have ended badly for the politician from India. But thanks to his Mayo Clinic care team, Devender was able to fight back. Now he's returned to work representing his constituents.

Within the past six years, Devender Tulla developed two serious conditions that could have ended badly for the politician from India. But thanks to his Mayo Clinic care team, Devender was able to fight back. Now he's returned to work representing his constituents.


For 30 years, Devender Goud Tulla, of Hyderabad, India, easily maintained the active schedule of a career politician. Long days filled with speeches and public appearances required Devender to stay healthy by keeping a strict schedule of daily yoga, home-cooked meals and ample sleep.

But in October 2012, life as Devender knew it changed. During a political rally, he experienced an episode that looked like a stroke and sent him to the emergency department. It also set the wheels in motion for a journey to Mayo Clinic that spanned two oceans and several continents. At Mayo Clinic's Rochester campus, Devender received care for life-threatening conditions not once, but twice.

In November 2012, physicians at Mayo Clinic treated Devender for a rare condition known as autoimmune encephalitis. Five years later, in early 2017, Devender returned to Mayo to receive treatment for an aggressive form of non-Hodgkin's lymphoma.

"Because of Mayo Clinic and the love and affection of people there, I am here," Devender says. "I'm really thankful to Mayo Clinic and its people. They do a great service to humankind."

Today, Devender is back to work representing the people in his political district, and he has written an autobiography titled My Journey.

Sudden symptoms

Devender's health problems surfaced while he was at political event attended by 2,000 people. Suddenly dizzy and confused, he was unable to speak.

"He wasn't coherent to the people around him," says Devender's son, Vinayender Tulla, who was called immediately. A medical doctor, Vinayender suspected his father was experiencing a stroke and directed that he be taken to a hospital. There Devender received an MRI. It revealed Devender hadn't had a stroke after all.

"He had some kind of lesion on his cerebellum," Vinayender says. "That was shocking for us because right up until then, he was absolutely fine."

Complicating matters, Devender was undergoing treatment for tuberculosis at the time. His physicians were unable to pinpoint whether his symptoms were related to the tuberculosis treatment. However, to lessen the tissue inflammation surrounding the brain lesion, Devender's medical team recommended he begin taking corticosteroids.

"There was a lot of confusion, and no one could really pinpoint the diagnosis," Vinayender says. "Then one of our doctor's here in India said that, since we were unable to diagnosis him here properly, we should go to Mayo Clinic."

Disconcerting diagnosis

The family took that advice. At Mayo Clinic, Santhi Swaroop Vege, M.D. — who knows one of Devender's doctors in India — did an initial evaluation. Dr. Vege then assembled a team of specialists from the Department of Neurology and Department of Cardiovascular Medicine, among others, to hone in on Devender's illness.

Allen Aksamit Jr., M.D., a Mayo Clinic neurologist, recommended Devender be weaned off the steroids, and the team would monitor how his brain responded. That would help inform his medical team about his diagnosis. In the meantime, he was able to return home.

Back in India, Devender had another MRI in January 2013. "The inflammation actually came back," Vinayender says. "So we contacted Dr. Aksamit and told him that the disease had come back."

The family learned that the only way to confirm the nature of the lesion at that point was through a biopsy of the brain tissue. In April, Devender and Vinayender flew back to Mayo Clinic for the brain biopsy.


"He started the drug, and he started getting back to his life. 2014, 2015 and 2016 were good."

Vinayender Tulla

Neurosurgeon Fredric Meyer, M.D., joined Devender’s team to perform the biopsy. Done via stereotactic radiosurgery, the procedure involved making a small incision in the left part of Devender's cerebellum and removing a tissue sample. An evaluation of the tissue revealed the reason for Devender's lesion: autoimmune encephalitis. The condition occurs when the body’s immune system mistakenly attacks healthy brain tissue.

With a definitive diagnosis, Devender began treatment. In late 2013, he started receiving daily immunosuppression therapy to prevent his body's immune system from attacking his brain.

"He started the drug, and he started getting back to his life," Vinayender says, noting that "2014, 2015 and 2016 were good."

Additional issues

Devender returned to politics and resumed his usual activities. But near the end of 2016, he began experiencing a stuffy nose. He treated his symptoms, but by January 2017, he still couldn't breathe properly through his nose. Devender sought medical care from an otorhinolaryngologist, or ENT physician, who ordered a CT scan and an MRI. The imaging revealed that Devender had a mass in his nasal cavity that extended into the sinus cavities on either side of his nose.

"It was a huge mass, and we understood that we needed to do a biopsy of it," Vinayender says. "[The physician] suspected it to be some sort of fungal mass or nonmalignant mass. He removed the whole tumor mass and sent it for biopsy.”

The biopsy revealed Devender had diffuse large B-cell lymphoma — a form of non-Hodgkin's lymphoma where there’s a defect in the formation of antibody-producing B-cells.

The new development in his father's health prompted Vinayender to call Dr. Vege.

"We told him that there was a new diagnosis, and he asked us whether we would like to be looked at by Mayo Clinic," Vinayender says. "We didn't think twice about it."

Aggressive action

Back at Mayo Clinic, Devender again met with Dr. Vege, who had recruited Mayo Clinic hematologist Stephen Ansell M.D., Ph.D., to Devender’s medical team.

"Patients with autoimmune diseases have an ongoing inflammatory process, and when the process persistently activates the immune system, they can develop other issues related to lymphocytes," Dr. Ansell says. "In this case, it was lymphoma."

To treat the lymphoma, which had spread into nasal bone, to surrounding lymph nodes and to the testicular area, Devender was scheduled to receive six rounds of chemotherapy, followed by radiation therapy.

"Unfortunately, things didn't go according to plan," Vinayender says.

The first few days of chemotherapy, Devender seemed fine. But on the sixth day, he developed a cough with sputum. That evening, he developed a fever that rose to 103 degrees around 2 a.m. Vinayender called the care team and was directed to bring his father to Mayo Clinic Hospital — Rochester. In the Department of Emergency Medicine, Devender's blood was drawn, and his chest was X-rayed. His medical team started giving him intravenous antibiotics.

"His oxygen saturation began to fall. His vitals started to fall. His pulse increased, and his blood pressure started falling," Vinayender says. 

Extreme effects

Devender was transferred to an intensive care unit to be cared for by critical care specialists.

"He started to deteriorate really quickly, and they had to ventilate him quickly," Vinayender days. "His blood pressure fell, and they had to take corrective measures. At one point, we were really scared because his lactic acid was shooting up."

Results of blood tests showed Devender had developed numerous infections as a result of the chemotherapy weakening his immune system. On March 18, Devender's fourth day in the ICU, he became even more ill. His blood counts, especially his white blood cell count, were extremely low. The infections gripping Devender's body showed no sign of loosening.

"I was very scared. As a doctor, I knew what was happening, and it was very difficult for me to tell the same things to my brothers and mother," Vinayender says. "It was very emotionally draining because I could see that we may actually lose him because of his counts and the infection."

Making the rapid decline in Devender's health even more emotional, it was the day before his birthday. And in India, when it's the birthday of a public figure like Devender, a community of revelers gathers to celebrate the occasion.

"He's remembered well on his birthday. But here he was in the ICU, and so a lot of people were panicking and wondering what was happening," Vinayender says. "Things were very gloomy, and Dr. Vege came in and talked to me for a few minutes and encouraged me to have hope."

On Devender's birthday, the family received a special gift. His body began to fight back. His blood counts increased and signs of infection diminished. Over the next two days, Devender's team weaned him from the ventilator.

Personalized medicine

When Devender finally opened his eyes and gave a thumbs-up, his team threw him a small birthday celebration. "It was because of the people's love and affection that I could recover," Devender says.

After several additional days in the ICU, where he became more alert and active, he was transferred to a regular hospital room. Devender regained his strength, and three days later he was discharged.

After that, it was decided Devender should wait two weeks before beginning the second cycle of chemotherapy. He received that chemotherapy without incident, and he remained stable for the next six days. The seventh day, however, brought another fever and another hospitalization.


"It was because of the people's love and affection that I could recover."

Devender Goud Tulla

"But this time, it was not so serious," Vinayender says. "He did not go to the ICU. The antibiotics were given, and the very next day, the fever subsided."

Devender was given the option to return to India for the rest of his treatments. But he and his son decided it would be best to receive the third round in Minnesota, in case there were complications. That round of medicine caused a slight fever but no other effects.

"That's when we knew he was responding to the chemotherapy, and for the next cycle we went home," Vinayender says.

Ideal outcome

Back in Hyderabad, Devender completed the remaining three rounds of chemotherapy. Shortly after, he began receiving radiation therapy. When that had concluded, Devender underwent a PET scan to check for any lingering cancer. That test came back negative. Six months later, a follow-up PET scan also came back negative.

Devender Goud Tulla and Santhi Swaroop Vege, M.D.

Devender will continue to be observed and undergo regular scans to check for a cancer. But at this point, the disease is in remission.

"At Mayo Clinic, we have an integrated care process," Dr. Ansell says. "The fact that the pathologist, radiologist, radiation oncologist and hematologist are all in close proximity and work together well, along with good integration from Dr. Vege, who facilitates the care, really helped the patient get the best treatment."

If not for the support of Dr. Vege, his father likely would have had a very different outcome, Vinayender says.

"Dr. Vege has been the fulcrum for us. He introduced us to Mayo Clinic and has been not only a doctor, he's become a good friend to my father," Vinayender says. "Without him, I'm sure we would not have had the experience we had."


HELPFUL LINKS

 

Tags: Dr. Allen Aksamit, Dr. Fredric Meyer, Dr. Santhi Swaroop Vege, Dr. Stephen Ansell, Hematology, International, Neurology & Neurosurgery, Non-Hodgkin’s Lymphoma

Please login or register to post a reply.
Contact Us · Privacy Policy