Betsy Hornbuckle is counting her blessings these days.
Less than two years ago, she went to an urgent care center near her home in central Florida after coughing up blood. When the radiologist saw something suspicious on her chest x-ray, he sent her for a CT scan, which showed a bigger problem than they had thought.
“That,” she says, “is when they referred me to a pulmonologist. “Fortunately, he knew that I had to have a bronchoscopy as soon as possible.”
He scheduled the procedure for the following week, when he also did a “lung wash.” After the bronchoscopy, the doctor told Betsy that she had Bronchiectasis, her infection “looked like” Tuberculosis, and the specimen was being sent to the state lab for further testing.
“They told me to stay inside at home as much as possible,” she recalls. “And then I could only sit and wait to hear.”
Betsy’s test results showed that she in fact had m. abcessus, and she was referred to an infectious disease specialist. Not knowing much at all about the disease she had been diagnosed with, Betsy hit the information superhighway in search of answers, and found NTMinfo.org, the NTM Info & Research website.
“When I first logged on, I read a lot on the message boards about delayed diagnoses,” she says. “I feel very lucky that my infection was caught early.” During her initial research, Betsy had come across Shands Hospital in Gainesville at the University of Florida, which treated NTM patients, but when she contacted them, they said they were only taking HIV-positive patients with NTM at the time. Meanwhile, the infectious disease specialist she had been referred to by her pulmonologist said that there would be a two-month wait before Betsy could be seen. Feeling that it would be unwise to wait two months, Betsy’s pulmonologist suggested that she see another infectious disease specialist.
“At first, the I.D. specialist was going to prescribe oral antibiotics only, but I knew enough from my research to ask about the cavitation that had shown up on my lung scans,” she states.
Which is when the doctor actually read the report.
He said the course of treatment would be intravenous antibiotics, including Amikacin, for a two-month course of treatment. Still, Betsy felt that something didn’t seem right. Her own research had suggested that a prolonged course of treatment was necessary for m. abcessus.
Once again, she turned to NTMir’s website for help. Looking at the Physician Referral List on the website, she saw a new name: Dr. Kevin Fennelly, at the University of Florida. Taking it as a sign, she called him to see if they were accepting Bronchiectasis patients, and she was told by his nurse, Denise, that they could see her the following week.
“As it turned out, Dr. Fennelly had joined the University of Florida earlier that month, and I was one of his first Florida patients,” says Betsy. “My husband, Bob, and I were very impressed with Dr. Fennelly’s credentials and with his wealth of knowledge on bacterial diseases.
“He and his staff had a way of making us feel as though, finally, we were on the right path. We were so blessed to have found them when we did.”
Dr. Fennelly put Betsy on four more months of intravenous drugs including Primaxin and Amikacin, as well as Biaxcin and Cipro orally. Bob became Betsy’s in-home health care provider, learning everything that was needed to administer the IV medications. All but one of their four sons lived out of state, and through their phone calls kept up with Betsy’s progress and kept her spirits up with their encouragement and support.
“Everyone kept a level head through every step, which helped me stay focused on my treatment,” she said.
As Betsy’s treatment continued, Dr. Fennelly had her screened for Alpha-1 Antitrypsin Deficiency, which can predispose patients to pulmonary NTM infection. Her test came back positive.
“It’s good to have that answer, but it is a bit of a ‘chicken and the egg’ scenario,” she muses. “I’ve always gotten winded more easily than most. Do I have Bronchiectasis in addition to Alpha-1, or because of it?”
Betsy considers herself lucky to have found a doctor like Kevin Fennelly. Last August she had hip replacement surgery – already a daunting prospect without the complication of NTM. To ensure the procedure went as smoothly as possible, Dr. Fennelly collaborated with Betsy’s orthopedic specialist to make sure she was on the right antibiotics to help keep infection at bay.
“There is a great deal to learn from my experience,” she says. “Do trust your instincts. Do ask for a second opinion if you are unsure. Don’t stop asking questions, and do communicate with your doctor.”
Though she still takes oral antibiotics today, she hasn’t been on IV drugs in more than four months.
“I still cough a lot and I am tired more than I used to be, but the night sweats are gone and I don’t feel sick,” Betsy says.
“I just consider it all such a blessing. Everything could have been so much worse.”
"NTM Info helped save my life." Read Laura's story and learn more about how you can help save lives.
When Aventura, Florida resident Laura Rubinoff first heard about NTM Info & Research, she had no idea the organization was in her own backyard.
At 37 years of age, Laura doesn’t fit the typical profile of an NTM patient. A natural athlete, she used to figure skate competitively, and had no history of lung disease. That changed ten years ago when Laura had a series of pulmonary emboli which left blood clots lodged in her lungs, restricting her breathing and raising her blood pressure. She and her doctors were able to manage her condition until three years ago, when she was diagnosed with pulmonary NTM disease.
“It was a real shock. I couldn’t believe I had yet another serious lung problem – as if one wasn’t enough,” said Laura. “I went from being athletic to barely being able to walk through a shopping mall. Even worse, some of my friends and co-workers couldn’t understand why I just didn’t want to go out anymore. They didn’t understand that I couldn’t do many of the same things they did anymore.”
Her pulmonologist and an infectious disease specialist began treating her for the NTM infection, and Laura went to the worldwide web to get more information. Though she found NTM Info online, it would be a couple of years before she realized they were her neighbors.
“One of my doctors, whose field is completely unrelated to pulmonology or infectious diseases, told me about a patient of his who works for this group based in Miami called NTM Info & Research,” recalled Laura. “He gave me her work number and encouraged me to call them.”
A week later, Laura reached out and spoke with that person, and they decided to meet for dinner.
“We enjoyed ourselves so much that evening that we decided to get my parents together for dinner with the co-founders, Fern and Philip Leitman, as well,” she chuckled. “My parents were so thrilled to meet them.”
While Laura and her parents were eager to get involved and help the organization any way they could, Laura’s pulmonary hypertension had worsened. Philip referred her to a specialist who deals with complex cases.
“Laura’s case is particularly difficult, and at that point, the priority was getting her seen by a doctor who would be up to such a challenge,” said Philip. “Laura’s health was the only priority at that point.”
Philip referred them to an infectious disease specialist at the University of Miami Miller School of Medicine.
Once Laura was under the care of her new team of doctors, she and her parents decided they were ready to mobilize for NTM Info. They spent months poring over their address books, compiling a list of names for a fundraising mailer.
“We had nearly 300 names on our list, and it took us a long time to compile it, but we wanted to make it as effective as possible.”
It worked. In two months’ time the Rubinoffs’ family, friends and colleagues donated more than $11,000. Unfortunately, Laura’s health continued to deteriorate, but thanks to her doctors, new hope was on the horizon.
“We knew we had found the right doctor when he called in a colleague of his who specializes in pulmonary hypertension to evaluate my case,” she said.
That doctor knew about a surgical procedure that is being performed in San Diego to remove blood clots from lungs. There was a catch, though – they are reluctant to take patients with other significant complications – such as pulmonary NTM infection.
Fortunately, Laura’s doctors knew how to treat her and over the next several months, her NTM infection improved – so much so that in April, she found out that she would be able to have the surgery she needs in San Diego.
“My heart was feeling the strain. It had been working overtime because I couldn’t breathe and the pressure was too high,” said Laura. “I had to be on oxygen full-time, even though the infection improved. This surgery was difficult and the recovery time was long, but it was my best hope.”
In June 2012, Laura flew to San Diego and had the surgery. At the time, she had been given two years to live. After a nine-hour procedure in which doctors removed the clots from her lungs, Laura’s pulmonary pressure stabilized, and less than three weeks later, Laura was home in Miami, recovering from the surgery, with a new outlook on life – and a normal life expectancy.
“NTM Info is always taking calls from patients, concerned relatives of patients, doctors… they’re a real lifeline for so many, just like they’ve been for me,” she said. “They’re not doctors or a hospital, or even a research facility. They’re just a group of people trying to help NTM patients. The time and attention they give really helps, not just medically, but mentally too. You just feel better after you’ve talked to them.”
“There’s no doubt in my mind that their hard work is the reason so many more people know about this now, and with the new patient registry they’re funding, they’ll make it easier to find patients for clinical trials of drugs that can help people like me. We’re really glad we found NTM Info & Research.”
The feeling is mutual.
If you would like to learn more about how you can help us make progress and fund research, please email Susan Wisliceny at firstname.lastname@example.org or call 305-667-6461, ext. 26.
Donnarae Aiello doesn’t like to back down from a challenge.
Easygoing and athletic, Donnarae has always enjoyed going on long walks, whether close to home or as far away as the Alps.
Six years ago, the New York resident started having night sweats. By 2007, the hiking she so enjoyed had been interrupted by a persistent cough and shortness of breath. Her doctor ordered a chest x-ray and compared it to one taken four years earlier, then sent her to see a pulmonologist.
And so began her journey as an NTM patient.
The pulmonologist Donnarae saw suspected one of three culprits: NTM, Tuberculosis or – because she had hiked extensively throughout the Southwest – Valley Fever. A bronchoscopy confirmed that she had m. avium complex (MAC).
So far, Donnarae had been fortunate to have doctors who knew about NTM and how to diagnose it. Her good luck continued when she saw an infectious disease specialist, who patiently answered all of Donnarae’s questions about the disease and treatment options and informed both Donnarae and her husband that they were about to embark on “a Kafka-esque journey.”
“There was so much that was unknown, so many different pieces of the puzzle to fit together.”
At the time, Donnarae’s doctors decided that she did not need active treatment for the NTM infection in her lungs. Over the next year, that changed drastically. Dramatic weight loss was followed by an increase of the infiltration of the disease in the lungs and an abscess. She weighed 93 pounds and needed to sit on a pillow in order to be able to sit comfortably.
Her infectious disease specialist recommended antibiotics, an 18-month commitment that Donnarae and her husband wanted to think carefully about making.
For several days, Donnarae surfed the Internet in search of more information and answers. During her research, she found ntminfo.org, the official website of NTM Info & Research.
“That was just a game-changer, for both of us,” she states.
Within one day she had made contact with a support group leader in her area, who welcomed her warmly and encouraged her and her husband to attend a meeting.
“This is such a hard disease to wrap your head around because so much is not known about it,” says Donnarae. “It can be an isolating experience, so it was comforting to be around people who had been dealing with pulmonary NTM for years. Their depth of experience and their willingness to share it was an amazing gift for us.”
Jon Bernhard lives for adventure. Whether climbing uncharted mountains in Alaska, El Capitán in Yosemite, or skiing, “the journey is the destination.”
Jon’s journey with pulmonary NTM disease started back in 1985. He had been competing in bicycle races throughout the U.S. That spring, he started having breathing problems, tightness in the chest, limited pulmonary function, and other symptoms. For two years he visited every internist, pulmonologist, and asthma doctor west of the Mississippi. Finally, a visiting Infectious Disease doctor at the University of Arizona suggested sending his case for review to National Jewish Health (NJH) in Denver, Colorado.
During Thanksgiving dinner in 1987, Dr. Mike Iseman called Jon to inform him that he had Mycobacterium avium intracellulare. He was one of only 5 diagnoses that whole year. Jon spent 28 months on a regimen of 6 medications, and spent the following three years fighting to regain his fitness. During his month-long stay on 2 Goodman at NJH, he researched NTM disease and questioned every NJH staff member in depth about his condition.
Luckily, Jon found rock climbing (or it found him). This outlet let him pace himself back to renewed strength and enjoy being able to breathe. For 11 years he chased dreams and achieved grand heights even with limited lung function.
In 2001, CT scans discovered new infected areas in Jon’s lungs. After a 14-month round of medications, he turned his attention from his own passion of climbing to meeting, working, and building a future for all NTM (MAC) patients. Now more than 20 years later, Jon realizes he’s not alone in this journey, rather NTM patients are one big family trying to make things better for each other.
“Thanks to the folks of NTM Info & Research, I have found an avenue to share and help others,” said Jon.
Jon still climbs, bikes, skis, travels, and seeks friends everywhere he goes.
“My desire to inspire along with making other NTM patients smile and feel at ease with this disease is all-important to me,” he added. “Through our patient group efforts in DC and Denver I have found ways to remain passionate about helping others.”