My Sister’s Fight for Air

My sister Sylvia climbed up the three flights of stairs to my condo and had to stop to catch

her breath.

It was an awful sight to see. She just couldn’t breathe. She sat there for more than five minutes, heaving in her struggle to get air. I was horrified.

I remembered the time years ago when I woke up in the middle of the night unable to breathe for almost a minute, shortly after getting a kitten for my German Shepherd (RIP, Tiger B. and Nico). I learned then that being unable to breathe was the worst feeling in the world. 

Sylvia would also struggle to breathe after five minutes of walking her dog or shopping in a store.

Then, at last year’s CROI, I heard Kristina Carothers, MD, of the University of Washington in Seattle, talk about COPD (chronic obstructive pulmonary disease), and myocardial infarctions (MIs, or heart attacks) in HIV.

It seems that many individuals living with HIV and COPD have their respiratory illness undertreated. For example, they may be given short-term treatments when they probably should use long-acting medications. They may need two medicines for their COPD, but receive only one.

I sat in a press conference listening to Dr. Carothers discuss the findings of her research team, and it scared the hell out of me. My sister has been living with HIV since the early ’80s and was diagnosed with AIDS in 1993. I suddenly realized that Sylvia’s pulmonologist (her lung doctor) probably doesn’t know what she goes through. He doesn’t see her struggling to get air. Never mind a heart attack. My sister can’t breathe. She was probably not receiving adequate care for her respiratory problems.

This is a woman who always says she has “bad lungs.” She had three episodes of pneumocystis jiroveceii pneumonia (PCP) back in the 1980s. Her lungs must be scarred.

After hearing Dr. Carothers, I asked Sylvia if she had ever been diagnosed with COPD. She had. She took medicine for it.

Months later, after seeing a new pulmonologist in the town in Wisconsin where she was now living, she was put on a new medication. She started using long-acting Anoro Ellipta (umeclidinium and vilanterol inhalation powder). “It releases 24 hours of medication relief to my bronchioles, every 24 hours. It’s an inhaler.”

And just like that, my sister could breathe.

All it took was running out of her old prescription refills, a trip to the emergency room, and her insistence while in the ER that something was wrong despite normal test results.

The crisis

More than a year ago, Sylvia had moved from one Wisconsin town to another. She still had refills for her COPD medication from her pulmonologist in the previous town, so she continued using them. She had paid $80 a pop for her rescue inhaler, because, she said, Medicaid wouldn’t pay for something that was not considered necessary but simply a “rescue.”

In January, however, before she could renew her COPD medication prescription or see her pulmonologist, she experienced a medical crisis while at home. Her heart was pounding. She felt dizzy. She lost her balance.

“I thought I was going to have a heart attack,” Sylvia said. It was enough for her to go to the emergency room.

There in the ER test results came back normal.

She knew, however, that something was wrong. The hospital needed to keep looking, she thought.

“It’s not my imagination,” she said. “I have a hard time walking. I have a hard time breathing. So I said, ‘Something’s not right.’”

Sylvia said that’s when a nurse took heed and measured her oxygen level, putting one of Sylvia’s fingers in a small plastic device, called a “fingertip pulse oximeter.” It measures blood oxygen levels.

The nurse found that Sylvia’s oxygen levels dropped by half when she walked. Something was wrong.

Sylvia was referred to a new pulmonologist, who was local. He put her on Anoro Ellipta. She continued using her previous rescue inhaler once a day.

She said that she still couldn’t walk and talk, but she could walk. “When I can’t breathe, it makes it hard for my heart to pump blood,” she said.

At first, she thought she wanted a higher dose of Anoro. But then her Anoro ran out and her symptoms of diarrhea went away. She needed a new drug.

She was scheduled for an ECHOgram, “to see if my heart is doing its job. They’ll compare it to the ECHO I had a year ago.” She was also getting a CT scan of her lungs. Her new doctor will be coordinating efforts with her HIV specialist, Dr. Ron Gonzales at Northstar Medical Center in Chicago.

Dr. Gonzales told Sylvia that he didn't want her to go back on Anoro, because he didn't want her on a steroid. As of press time, she had not seen her pulmonologist. Her breathing was less of a problem because she was staying home due to the COVID-19 outbreak.

Sylvia says she was off her HIV therapy for nearly a year when she went to the ER. “Dr. Gonzales has really tried to talk me back onto HIV meds. But [if I had] three months of being healthy and able to do what I want vs. pain and agony—I’d rather have three months. It’s so uncomfortable, all this fat around my torso and my back. I can’t function. It was hard to clean myself. That in itself was enough for me to say enough.”

Now her T-cells hover around 200 and her viral load is around 2,000. She’s being very careful about COVID-19.


From Ken Kunisaki, MD, MS, pulmonary staff physician at the Minneapolis VA and Associate Professor at the University of Minnesota:

HIV increases a person’s risk for developing COPD.

We don’t know exactly how HIV does this, but if you are living with HIV, the best way to reduce your risk for COPD is to avoid smoking.

In people with HIV, previously having a very low CD4 count and past pneumonias might also increase COPD risk.

Cigarettes are clearly the strongest risk factor for COPD, and although we don’t know as much about vaping and marijuana effects on COPD, any inhaled substance entering the lungs can cause lung problems.

If you have a chronic cough, or regularly cough up sputum, or have shortness of breath, you should talk to your provider about getting a lung function test, which is the way we determine if someone has COPD.

Many people think having COPD means you need to use oxygen tanks, which is not true. Supplemental oxygen can be life-saving for people with very advanced COPD, but most COPD patients do not need oxygen tanks, especially if we make an early diagnosis and take interventions to preserve as much lung function as possible.

If you have COPD, it is treatable with things like inhalers and pulmonary rehabilitation programs that help improve daily function.

Respiratory infections can be troublesome for people with COPD, so vaccinations are recommended against things like the flu and pneumonia. Good hand hygiene and avoiding contact with people who are sick also helps COPD patients stay as healthy as possible.

Dr. Kunisaki’s research interests are COPD, obstructive sleep apnea (OSA), and HIV-associated lung and sleep disorders.