In March of 2020, Jill Ottow was a healthy 66-year-old; “I was very healthy my whole life. I was active. I hiked and walked and did yoga two to three times a week.” Then, she got a case of COVID.
“It was mild; other family members got it more severe. I got over it; it was fine. And then five months later, I got large blood clots in my lungs, pulmonary emboli.”
While at Mass General Hospital dealing with the blood clots, it was discovered that she had an autoimmune disease called Sjogren’s Syndrome. The main symptoms of Sjogren’s are dry mouth and eyes. It can also attack joints and lungs.
“In the summer of 2021, I was at a regular checkup, and my doctor heard some sounds in my lungs and referred me to a pulmonologist.” Jill was then diagnosed with interstitial lung disease or ILD. “It was mild but definitely related to the Sjogren’s. They call it autoimmune-related ILD.”
By the end of 2022, Jill needed a mild oxygen supplement during periods of exertion. She used a portable tank that administered oxygen in a pulse rather than a continuous flow. “So we continued to travel, things were going okay. But it is a progressive disease. And my doctor said some people go a really long time without any progression.”
But by November 2023, things had unfortunately progressed. “My doctor said there was now fibrosis scar tissue developing in my lungs. By January 2024, he did another CT scan and said it was even worse.” Now, Jill was using oxygen all of the time except when asleep. “With any kind of talking or moving around, I had to use it. And so my doctor said my only option was lung transplant or I was gonna die. So, I said, ‘okay.’ I didn’t hesitate, I don’t know why,”
“I’m glad you didn’t.” Interjected Eliza, her respiratory therapist at Whittier Rehabilitation Hospital-Bradford.
Care-taking sparks an invention to help future patients
At this time [January 2024], Jill was on an oxygen concentrator, which is a machine used at home by people with breathing issues, and which can be very loud. “It had a 50-foot cord. And I had to have the flow changed when I did different things. If I was sitting on my computer or watching TV, I could have it set at one or two. But if I had to go to the bathroom or something, I needed to put it up to six or eight.”
Since the oxygen concentrator could not be next to Jill, she had to call her husband, John, for help everytime she needed it adjusted. So, John invented a device that is a remote control for an oxygen concentrator. He mounted a second flow valve near the concentrator, with a camera pointing to it. Jill used an app on her phone and the camera to look at the gauge and raise it up and down with a remote fob as needed.
“Mass General has gotten behind him, and they want to help him develop this device.” John is working with Aliaa Barakat, Ph.D, of the ILD Collaborative, and a researcher at the Department of Pulmonary and Clinical Care Medicine at Mass General. The ILD Collaborative is a network of patients, clinicians, and investigators that enable and work on discoveries that improve pulmonology patient outcomes. They have now put together a team of nine people working with John, including a Projection Manager, a legal advisor, a marketing professional, and software and production engineers. They are expanding the device to be able to be completely digital and be able to collect data on blood oxygen levels, alarms and more.
The road to a lung transplant and to pulmonary therapy at Whittier
Jill had to go through a lengthy evaluation to make sure she was the right candidate for a double lung transplant. This took almost a year, and she had a few hurdles that slowed the process down. She was having GI issues due to her Sjogren’s, and then they found a mass in her heart.
“And they said, ‘You’re out.’ because it could be cancer. And I kind of refused to accept that.” Jill then went to a cardiologist at Brigham & Women’s Hospital to get the mass looked at. Luckily, it was not cancerous. “So then they put me back into the process… and you see pulmonology, you have endurance tests and CAT scans and x-rays and a lot of blood work. You see cardiology, you see psychology, social work, nutrition, infectious disease, and GI. Everybody looks at everything.”
During this time, Jill’s husband was re-diagnosed with prostate cancer, which had been in remission for three years. ”We had moved to Boston during that time to be near Dana Farber Cancer Institute. So he was managing my oxygen and my needs because I was so weak, while going through radiation treatment for two months.” Jill’s husband is now back in remission.
On September 20th, 2024, Jill was approved for a double lung transplant and was placed on the waiting list. “And they said get a bag packed, but it could be a year.”
Three days later, Jill got the call that they had found lungs for her.
“The call came at about 10:30 at night while we were watching TV. We had bought a “burner phone,” a lung phone, because both of our phones were dropping calls, and if you didn’t take the call, you could get moved down the list. I call it a burner phone because, you know, when this is done, we’re gonna smash it on the sidewalk and throw it in the river.” [laughs]
“So it rang, and my husband went and answered it, but I didn’t connect that it was the lung phone because we weren’t expecting it [so soon], and he handed me the phone, and the man on the other end said he was calling from Nevada and that they had some lungs that they think are a good fit and I needed to be at Mass General the next morning at seven o’clock. And I was like, “Yeah. Okay.” And he said, “Well, do you have any questions?” I said, “Oh, no, John, do you have any questions?” And my husband said, “Who the hell is that?!” [laughs]
Jill and her husband live in a close-knit community in New Hampshire, so the following day at 5:30 am, the police chief met them at their house and escorted them onto 495, where he had arranged to meet a Massachusetts state trooper. The two policemen then escorted them to Mass General.
“It was rush hour, and when we got down to the Storrow Drive exit, we were in the far left lane. They crossed us over four lanes, and it was like parting the red seas,” Jill laughed. “Everybody moved, and it set the stage for the whole experience. It was like a movie.”
Jill’s surgery started at 8:00 in the evening and went on for nine hours. Jill was intubated and sedated for four and a half days after her operation. “On the fourth day, I woke up, but I was very delirious for still another couple of days. Then it was three and a half weeks in the hospital.” Jill and her husband felt she wasn’t ready to go home, but she was doing some PT [at Mass General] and was using less and less oxygen. “They said, ‘It’s the best place for you to heal. You’re going to do fine.’ And I did.”
Jill could not be left alone for the first month she was home. She and John found an incredibly supportive community where they live. Meals were brought in, groceries and prescriptions picked up and rides provided to appointments. Relatives came to give John a caregiving break, and monies were raised from across the country to help support expenses.
“A lot of the work Eliza and Donna do [at Whittier] is through support, encouragement, and cheerleading.”
Jill was receiving around 8 liters of oxygen per minute when she came to the Pulmonary Rehabilitation team at Whittier Rehabilitation Hospital – Bradford preoperatively starting in the summer. She was coming twice a week to help strengthen herself because that is one of the prerequisites for a lung transplant.
She started back up with pulmonary therapy at Whittier on October 29th, just over a month after her operation. Her twice-weekly therapy consists of using the treadmill, hand pedaling, and foot pedaling. Therapists Eliza and Donna increase the duration, speed, and incline on each where applicable. “I had great improvement on my last 6-minute walking test with them from the one I had when I started last summer.” She increased by 109 meters! Starting in January, Jill also uses weights and resistance bands at home to work on her strength.
At the time of this interview, Jill was four months out from her operation. “I’m not a hundred percent, and it’s gonna be a good year to get to some kind of baseline. But I don’t use oxygen. I don’t cough. I had a debilitating cough for four years. I’m doing my pulmonary rehab with my amazing therapists, and I’m walking a little more than a mile and a half now. I’m doing some housework and laundry and cooking and I drive myself now.”
Eliza adds, “If we were having this conversation six months ago, you wouldn’t have been close to talking this much.”
Jill, all of us at Whittier are so happy to have been a part of your amazing story!
Photos: At top, Jill Ottow on the exercise machine in our pulmonary therapy room, with lead pulmonary therapist Eliza LoConte, RRT. Inset above, Jill’s daughter presented respiratory therapists Donna and Eliza with this lovely painting, which they have displayed in the pulmonary therapy room.
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