VOLUME 35, NUMBER 5

CONNECTING

VENTILATOR USERS,

HEALTH PROFESSIONALS,

AND INDUSTRY

This development punctuated my evolving experience of post-polio syndrome. I contracted polio as a child in the mid-1950s, just before the polio vaccine was approved. I ended up in the hospital for nine months. For part of that time, I had a tracheotomy and lived in an iron lung. Ultimately, I was successfully weaned and breathed without assistance for many years. I had received a PhD in psychology, married, moved from Chicago to Los Angeles, and was raising a teenager when I learned that, again, I needed technology to help me breathe.

​

It was not a complete surprise. I was already dealing with fatigue and muscle weakness. My ability to walk – achieved through years of childhood physical therapy – was becoming increasingly effortful. Following a fall that fractured my ankle, I had started using a wheelchair more and more. But a ventilator? I was shaken by images of being “tied to a machine” and “extraordinary” measures associated with the end of life. Public opinion polls showed that most Americans would rather die than accept such treatment.

​

Luckily, through various organizations, I had met a vital community of people with neuromuscular conditions, including polio, who had significant life experience in this area. They assured me that using a “vent” was “no big deal” and advised me to see doctors at Rancho Los Amigos, a hospital known for working with ventilator users.

​

I followed their advice and found a wonderful pulmonary specialist who respectfully educated me regarding my condition and treatment options. He taught me that I needed adequate movement of air in and out of my lungs rather than simply relying on passive oxygen treatment which could dangerously lull my body into believing it was getting sufficient oxygen despite shallow breathing. The doctor suggested that I try a CPAP device at first to see if it would be sufficient to keep my airway open during sleep. It seemed to help a bit but not enough. He then prescribed a PLV-100 ventilator. He patiently collaborated with me to determine the vent settings and nasal mask that would be most comfortable and effective. Long story short: I ended up using the PLV-100 for over 20 years. My fear of mechanical ventilation faded away as I experienced the reliable, comfortable support of that friendly machine.

​

But my relationship with the PLV-100 was not destined to last forever. New technology emerged and it became hard to find services and parts for my vent. When our son left the nest, my husband and I moved back to Chicago, and I connected with new pulmonary physicians. They preferred ventilators with advanced technology, so I reluctantly retired my friendly old workhorse PLV and took up with a slim, colorfully-lighted LTV 950.

​

The new ventilator was sleeker, but it did not feel in sync with my breathing in the way I had come to expect from my boxy PLV. My doctor felt that we could achieve the same effect by adjusting the settings, but somehow my experience of the LTV remained different. When I discussed this with other ventilator users, some told me they had had a similar experience. I also talked with respiratory therapists who agreed that the two vents performed differently because of mechanics, i.e., the PLV was piston rather than turbine driven. Given my paltry knowledge of motors, I can’t weigh in on this debate, but I know many persons with neuromuscular conditions have clung to their PLVs for years, exchanging tips on how to get them fixed.

​

I tried some other vents, but none seemed to fit my needs. Eventually, my doctor switched me to a Trilogy, which was very portable and gave the doctor recorded respiratory data. I soon learned, however, that it would not allow me to stack enough breaths to cough effectively. On my old vent, I could hold air in my lungs between breaths until the lungs felt sufficiently expanded, and then I would cough. I could do this effortlessly throughout the night without having to switch to another device, such as a cough assist machine. In contrast, when the Trilogy sensed resistance in my post-polio chest, it stopped delivering air. Adjustments didn’t help. It felt as though the machine decided it knew better than I did what was right for me. Not only was this frustrating, but I also worried about maintaining good respiratory health without freedom to expand my lungs and clear my airway as needed on my own.

​

In time, I began to experience another decline in respiratory functioning. Now I was having trouble during the day. I became short of breath and had difficulty doing activities such as eating or brushing my teeth without having to stop and take breaths, sometimes using frog breathing (glossopharyngeal technique). My pulse oximeter readings showed lowered blood oxygen levels. I worried that I was heading toward a tracheotomy. I turned to my old friend, the PLV-100, using it periodically during the day to expand my lungs. My doctor and I discussed the possibility of using a ventilator during the day that could be mounted on my wheelchair and deliver breaths whenever I felt the need.

​

Biden Administration Proposes $150 Billion for HCBS

As part of its proposed $1.75 trillion reconciliation bill, the Biden administration has included $150 billion for Medicaid home and community-based services to help get people with disabilities off of waiting lists and address issues plaguing the nation’s workforce of direct support professionals.

​

While significantly lower than the initial promise of $400 billion, the new figure still represents “the most transformative investment in access to home care in 40 years, when these services were first authorized for Medicaid,” the White House said.

​

The framework also sets aside $1 billion for direct care workforce competitive grants, plus $20 million for hospice and palliative nursing programs. It would also make permanent the Money Follows the Person program. But noticeably missing is any sort of paid leave program, another priority of disability advocates.

​

Still, it remains to be seen whether the Democrats have the votes to get the reconciliation bill passed. 

Survey Finds Disability Service Providers On The Brink

Newly diagnosed with COPD? Here from those who have been living with COPD about some of the things they wish they knew as they were starting out. The post also included links to a number of helpful resources. Join the conversation on COPD360social.

Celebrate Respiratory Care Week

This week is Respiratory Care Week. Driven by the AARC, President Ronald Reagan issued a proclamation on September 18, 1983, declaring the last full week in October as National Respiratory Therapy Week. The proclamation spelled out why this week is so important. “Chronic lung diseases constitute an important health problem in the United States. They afflict nearly 18 million Americans and cause nearly 70,000 deaths each year."

​

Are you a respiratory therapist? Share your stories and photos that show how your team celebrated and raised awareness in your community by including #RCWEEK21 on your social media posts.

Though CHEST 2021 was recently concluded, on-demand sessions are still available for viewing and will remain so until October 1, 2022. For more information, go to https://chestmeeting.chestnet.org/. Plus, you can sign up for updates about CHEST 2022, which will take place next October in Nashville, Tennessee.