It took a global pandemic to make ventilators a trending topic of discussion, but for thousands of people, they were part of daily life long before COVID-19 and coronavirus entered the common lexicon. Loa Griesbach started using one 18 years ago because swelling on her brainstem after a C5-6 injury impaired her breathing. Chris Tango’s vent life also began 18 years ago after an uncommon non-traumatic demyelinating event at the base of his brain. Jesse Collens joined the club 11 years ago when a botched front flip left him with a fractured cervical vertebra. Unlike the common images on the news of sickly people confined to hospitals or nursing homes, all three of these vent users have figured out how to get out and about and enjoy their lives, and while COVID-19 has slowed their roll, they are looking to getting back to making the most out of life with a vent.
Owning the Vent Life
Before everything changed and the nation went into quarantine, Griesbach was sitting in the Hawaii sun with her family, celebrating having spent half her life as a wheelchair user. Paralyzed in a rollover accident 10 days after her 18th birthday, Griesbach had decided to celebrate her 36th birthday and the 18th anniversary of her injury in style. “I’m so thankful that we got to do that before all this COVID stuff happened,” she says. “I’ll always have that memory.”
The vacation also gave Griesbach time to reflect on all she accomplished since her injury, including her mastery of the ins and outs of vent life. It’s rare to find someone with a C5-6 injury using a ventilator, but when it became clear that complications from her injury were going to necessitate one, Griesbach accepted the new reality quickly. She remembers the nurse recommending a trach and trying to relieve any concerns she might have about scarring. “He knew I was a girl, and he thought that scars would be an issue for me,” she says. “I was like, ‘Yeah, do it as soon as possible.’ And he said, ‘What?’ I told him, ‘No. I’ve got to get this tube out of my throat.’”
That same practical approach guided Griesbach’s early days adjusting to the vent. “I did what I needed to do to get to the next moment. And as things got easier, and I was adjusting and stabilizing, then I looked further out and started planning more,” she says. “It was sink or swim. You do what you need to do.”
Griesbach got right back to doing what she needed to do — speaking at her high school graduation despite still being in rehab and going on to earn two bachelor’s degrees. Since then she has mixed an active social life with work and volunteering. The vent doesn’t stop her from finding time for fitness, and a standing frame and e-stim bike at home allow her to stay healthy and strong.
Several years after her injury, Griesbach learned glossopharyngeal breathing, or frog breathing, a technique where you gulp large amounts of air. It allowed her to breathe on her own for a few hours at a time. Now she can stay off the vent for several hours and doesn’t have to be quite as worried about power outages or equipment failure. “Being able to breathe on my own for short periods of time has given me a lot of independence and freedom to do more,” she says. Griesbach had some anxiety the first few times she went without the vent but gradually grew more comfortable.
Like Griesbach, Tango can breathe on his own for limited periods of time. Rapid demyelination at his brain stem paralyzed most of his body when he was 14 but left some chest muscles intact. With some control, but not enough to breathe entirely on his own, he switched from being intubated to a trach before heading to rehab.
He keeps his chest muscles strong by breathing in sync with the ventilator as much as possible. Because of this, he can breathe on his own, for up to four hours if needed. As he explains, the extra effort helps his lungs regardless: “I’m pretty good about breathing while the vent breathes to keep healthy, and I haven’t had a respiratory infection because of that.”
Putting in that hard work was part of a long adjustment process that included learning to train his staff to properly use the ventilator and finding his own comfort zone. Now, at 32, it has paid off. “I don’t even notice the vent now when I go out. It’s just kind of there,” he says. “I don’t want it to stop me from doing things.”
Collens’ C1 injury doesn’t afford him the off-vent breathing luxuries Griesbach and Tango enjoy, so he is on his vent 24/7. He was unable to secure satisfactory care where he was living at the time of his injury, so he moved to Washington. He fought for extra supplies and home care from government programs, and eventually secured a solid equipment setup and round-the-clock nursing assistants. Like Tango, Collens mastered the ins and outs of maintaining, repairing and using his ventilator. “I’m gonna know more about my equipment and my settings than anyone else,” he says. “That’s important to me.”
Collens enjoys getting out in nature and spending time with friends, but spends most of his time at home and in the neighborhood to ensure help is close in case of an emergency. As an example of why, he mentioned a solo roll around the neighborhood that didn’t go so well. “I was at the end of the street and the ventilator came disconnected,” he explains. “I rolled home just in time, went up to the door, and the nurse heard the ventilator alarm and got to me before I passed out.”
Cuffs and Vents
A year and a half ago, Collens switched to a cuffed tracheostomy, in part because he wasn’t getting enough oxygen during his sleep. The cuff controls inhalation and exhalation, and a fully inflated cuff prevents the user from speaking, while a cuffless trach can make breathing less smooth but allows for easy communication. Collens slightly deflates his cuff midday so he can speak with friends and family (and writers), but keeps it fully inflated at night. “I’ve adjusted to it, but it’s not the best,” he says. “Getting people’s attention when I sleep is difficult. I sleep with a baby monitor, so I just make noises and click to get attention.” Once he has an attendant’s attention, he has to mouth words and use his eyes to point for what he needs.
Griesbach and Tango both use cuffless setups, a choice made easier by their ability to breathe on their own. Griesbach appreciates the freedom the cuffless trach gives her, while Tango says that having an inflated cuff makes him “feel like I’m drowning.”
Tango uses two LTV 1150 ventilators. He keeps one plugged in bedside at night, and the other works off a battery on his wheelchair. He just recently switched to the bedside 1150 when they stopped making parts for the older model he had relied on since returning from rehab in 2002. “I’ve always liked the old vents,” he says. “The old technology is just simpler. I like to over-ventilate so I can talk when I want to, and it’s easier to manipulate the older technology. Just feed me air.”
Griesbach used to use an LTV too, and shares Tango’s dislike of many newer models, noting that what type of vent you use can have a huge impact on how you feel and what you are able to do. Many models she tried “couldn’t be adjusted in a way that made me comfortable and actually disrupted my cognitive ability,” she says. “I was totally foggy and tripped out. I couldn’t think. I couldn’t focus. And I felt like hell.” She points out that not all ventilators work well for all types of abilities.
Now, she uses a VOCSN, a multifunction ventilator that combines ventilation, oxygen concentration, cough assist, suction and nebulizer — functions historically done by five separate devices — into one portable 18-pound unit with easily swappable batteries. She helped test the VOCSN during development and now serves as an ambassador for Ventec, the company that makes it (see sidebar, page 22). She says VOCSN’s combination of multi-functionality and portability has been nothing short of life changing. “It makes it so much easier to be mobile without needing to schlep all the devices and cables and batteries and all kinds of stuff,” she says. “It’s really amazing.”
Collens isn’t as in love with his vent, a Trilogy 100. He liked his old LTV, but when Medicare rotated the older models out, he had limited options. “I chose this one because it was quiet,” he says. “What I don’t like about it is the sensitivity to leaks and such is not there.”
As members of the oft-cited “most vulnerable populations” in the era of COVID-19, Griesbach, Tango and Collens have had to adjust to a new reality of heightened isolation, danger and, of course, monotony. With different home situations, medical needs and available resources, each has adjusted in their own way.
Collens’ dry sense of humor is evident when he says things have been “interesting.” A month or so into the quarantine, a buildup of fluid on one of his lungs landed him in the ICU for a 13-day stint. The cause is still unclear, but it was not COVID-19-related.
He’s back home with a PICC line and antibiotics, in as good spirits as possible. He’s been down the same road before and is hopeful this incident will resolve soon. Dealing with serious medical crises has a way of putting things like quarantine-living in perspective.
“Honestly, not too much has been that different during the quarantine,” he says. “I don’t leave my house too much normally because of neck pain, so I had been staying home, doing a lot of computer gaming.”
Outside of a few trips for medical needs, Griesbach has spent the last two months at home, tanning, reading and enjoying her mom’s cooking. “I used to be pretty active and leave my house a lot,” Griesbach says. “Now I hardly go anywhere.”
Still, she says having her nurses and caregivers coming and going, and having more time to ride her exercise bike has kept the quarantine from being insufferable. “I’m actually riding my bike a lot more, which is the best thing I can do right now, because I go off the ventilator when I exercise. I’m strengthening my respiratory health and my cardio health and my overall health.
“I still see people, so I don’t feel too trapped. My life has changed, but it doesn’t totally suck,” she says. “It is very different but, it’s not horrible.”
Tango lives at home with his parents in a town of about 20,000 outside of Boston. He spends his typical quarantine day watching Netflix, reading and trying to keep his mind busy. “I’m taking it day by day,” he says. “I was a little bit concerned about some of the worst-case scenarios that were floating out there at the beginning. When you go to the hospital overnight, you’re either on a bed floor or you’re in the ICU, and all those beds were taken by COVID patients. That was really the only concern. But it seems to be coming back down to a manageable amount.”
In good times, where he goes depends on whom he’s with. “I could get out with someone who is loosely trained, like a friend or PCA — someone who is not a full-blown nurse — and I go out all the time,” he says. Yet even with ability to go out, Tango usually stays close to home. ‘If I’m not with someone who is properly trained, I stay in town,” he says.
One area where they’ve all felt the impact of COVID-19 is staffing and making sure they have enough people to take care of their medical needs. Collens lives independently with a staff of five nurses who work 12-hour shifts. He had worried about filling an opening during the pandemic, but says it proved no more difficult than normal. His mom lives an hour away and occasionally comes for short periods.
During non-COVID times, Griesbach manages a group of around 10 nurses, caregivers and family members who help her. Some work in hospitals full- or part-time, others work multiple caregiving jobs, but all have had to change their routines. She has had to tell some caregivers not to come because they’ve been exposed or work in environments that are too high risk. “We’ve basically told anyone that’s exposed to not come at all,” she says. “And everyone that’s coming isn’t exposed.”
“It’s really hard to tell people, ‘Hey, thanks. But, no, you can’t come. Sorry, you’re not going to get paid,’” she says. “I really don’t like having to be the heavy. It’s not fun. And it’s not fun, or easy, to figure out what level of exposure is OK, what level isn’t and deciding where to draw the line. It’s a lot of stress.”
The lost shifts and hours tend to mean more responsibility is falling on family members. Griesbach’s sister and parents have picked up some of the harder-to-fill additional weekend and evening shifts, and she has prioritized covering nights with outside staff.
Tango has faced a similar situation, as all but one of his regular nurses work in hospitals. Normally they’d work for him on off days, but the risk of exposure is too high now. “I was just talking to one of my nurses yesterday,” he says. “I can’t have her come back. She works in an ICU that is all COVID. She said she’s like a leper right now.”
For now, Tango is relying solely on his parents. “My mother and father are the only humans I’ve seen for over two weeks, they’ll likely be stuck doing my care by themselves for weeks or months” Tango wrote in an essay for NEW MOBILITY last month. At the time this issue went to press, Tango was hoping to have nurses return June 1.
An Uncertain Future
While the current situation is far from ideal, Tango manages to draw out positive outcomes for the future. “I guess the silver lining is that there is going to be a lot of people who know how vents work,” he says. “Hopefully, nursing will be easier to find.”
Griesbach is already thinking through the protocols she will need for returning staff who have been out in the world. “Right now, the status quo is kind of easy to deal with,” she says. “I’m actually more stressed about when things open up again.” What if there is a spike in cases or a second wave? What does a balance of outside and family care look like post-COVID? “Anticipating that transition back to normal is stressful, and I feel like the transition period is going to be the most difficult and stressful. I want to just close my eyes, skip over that and go back to normal.”
Collens is also worried about the logistics of the transition. “I try not to think about it too much, but of course, it’s there,” he says. “I see myself staying isolated for an extended amount of time, just because I don’t know what’s going to happen. I don’t see myself jumping to go hang out with everybody, unfortunately.”
When and what the future will be remains to be seen, but Tango is ready for it. “When stuff opens up again with social distancing, I’m going to go — I’m not going to be a hermit,” he says. “I won’t be reckless, but I’m definitely going to try to be kind of normal.”
One of the things that became clear in reporting this article is that vent users would welcome innovation that makes their breathing and their lives easier. Multiple users expressed frustration or disappointment with many of the newer ventilators, and a desire to keep using older models for as long as possible. They cited overly-complicated controls, loud mechanisms and, most concerningly, uncomfortable and inadequate ventilation, among other complaints.
At the same time, the news has been flooded with stories of innovation around ventilators as some of the world’s brightest minds have teamed up with businesses and governments to try to address the shortage of ventilators predicted by many experts.
Knowing these two realities, it seems reasonable to ask: Will these collaborations lead to innovation and positive change that will directly help people who rely on ventilators? As with seemingly everything pertaining to COVID-19, the answer is uncertain.
Count longtime vent user and C5-6 quadriplegic Loa Griesbach as skeptical. She points out that not all ventilators work the same, and the needs of full-time users living active lifestyles are very different from hospital patients recovering from infections. The Ventec VOCSN ventilator she uses is an expensive, highly-portable, multi-function device that is just as well suited for an ICU as all the needs of a mobile wheelchair user. Many of the new designs emerging as a response to COVID-19 are the polar opposite: small, cheap to manufacture and singular in purpose.
One of those models is the brainchild of Dr. Albert Chi, a trauma surgeon at Oregon Health Sciences University in Portland, Oregon. The 3D-printed ventilator design he and his team have submitted for FDA approval is about the size of a soda can, requires no electricity and can be printed in three to 12 hours (depending on printer speed) for as little as $10.
Chi and his team started working on the product in February as concerns of PPE shortages grew, and by mid-April they had a working model. Chi acknowledges that his vent isn’t the solution for full-time users, but sees it playing a vital role in the global system and helping underserved communities attain a needed lifeline. “In these hospitals, not only is electricity a problem, but maintenance is overlooked and not all of the vents are functional,” he says.
Not all the ventilator innovation is on smaller scale. This March, Ventec, the company behind the VOCSN, partnered with GM to design a new model, the VOCSN V+Pro, and build 30,000 units for the federal government by August. The V+Pro doesn’t have the multi-functionality of the VOCSN base model, but is certified for the International Standard and FDA-approved for hospital use. Less than one month after the initial contact between GM and Ventec, the first V+Pros were delivered to two hospitals.
Mark SooHoo, Ventec’s vice president for marketing and communications, applauded the industry-wide innovation and noted the need for different types of solutions. “Frontline medical professionals need the level of control and support that critical care ventilators such as VOCSN offer, and not all devices or projects meet this need,” he says.
Griesbach is hopeful all the innovation and attention helps her and others like her. “COVID has brought attention to this market that was really only considered before by people that were acutely affected by it,” she says. “Nations around the world are now aware of ventilators, and how important they are. Maybe they’ll have a different outlook when they see somebody that is using a ventilator.”
— Ian Ruder
** This post was originally published on https://www.newmobility.com/2020/06/spotlight-on-vent-users/