Disabled in the time of Covid-19
Published in the Winter 2022 edition of the CF Roundtable
THE SEASONS OF THE PANDEMIC
We spent the spring of 2020 nesting: my husband created a bright nursery with a playhouse in the eave and a bar in the basement with a handcrafted poker table. I worried about the world, my pregnancy, and my life. There were no late night runs to the store. My pregnancy craving of Oreos was only abated after a three-week wait for our Peapod order. While others were making sourdough, cravings led me to get an ice cream attachment and I spent the spring learning how to make ice cream. To distract us, we traveled through the screen to learn about coffee in Columbia and followed a plague doctor through Prague in the Middle Ages. We explored Lisbon, Portugal, made Crepes in France, and learned to make a delicious pineapple fried rice in Hawaii.
THE SUMMER
The summer brought our long-awaited little one. A girl named Rose. With a calm and gentle nature like her father, and bright eyes and a drive to match her mama. After getting home, we fully immersed ourselves in life with a newborn. The transition to the slower pace of family life eased into by the protective quarantine that had become our norm. We spent our first date nights learning how to make a Moroccan dinner and explored Argentinian wine country with a sommelier, all through Zoom.
THE FALL
We spent the fall walking in the woods, making homemade gifts for the upcoming holidays, and celebrating the harvest by exchanging our homemade goods with friends. My husband created a 16-foot table for the yard to accommodate a safe Thanksgiving and Christmas celebration, we used it for Christmas as well—rather chilly but gratefully together.
THE WINTER
The Winter is slow and quiet, but warm...the glow of the fire logs in the hearth, a bit of peanut butter whiskey sipped by the fire-pit with snow falling around us. We wore our ski gear—not on the slopes but to keep us warm in the yard. Two vaccines get emergency approval and we start to think we may get to have a Spring and Summer with others. We kept ourselves occupied with experiences through Airbnb—the virus may have kept us off of airplanes but we are able to connect with the world through Zoom. We learned how to make Indian cuisine, French macaroons, Mexican tacos, and now that I could drink again—took classes in Sake, Mezcal, Georgian wine, and Gin cocktails. The Spring brought us to a full year of living with the virus. Vaccines are now available in limited amounts and we see a light at the end of the tunnel.
THIS YEAR HAS BROUGHT UP FEELINGS OF RESENTMENT AND ANGER
What I hear is that those with illness are expected to rot away, die, and let others continue their lives. That perhaps if they need a ventilator—they shouldn't even have access. The deaths of those chronically ill appeared to not even count. That we live in a country that prioritizes the individual above all else - that independence allows you the right to not do basic things like wearing a mask that help to protect others. That we are incapable of sacrifice. That we have a lack of ethics and morality in our political system and government. That we shape the narrative to serve our own interests and that we learn very little from history. That we will continue to prioritize work and not the worker. I know we can do better. Resentment builds because we couldn't also make decisions based on desire rather than the necessity of safety. In these moments I breathe deeply and know that I matter, that we will do everything we can to get safely through this, and that we have a wonderful life. I have peace knowing that I brought no sickness to anyone during this time. Yet, more importantly and within my locus of control—this year has also brought peace and a slower pace of life—one I am going to have a hard time giving up. A year with my little one...a year of cuddling, of presence, connection, and growth. A year of development as a couple and as new parents. A year of new recipes that we will carry with us. A year of change, of adapting, creativity, patience, struggle, and resilience. So a choice is before us—to remember the fear, the anxiety—or something else. I was cooking up dinner in the kitchen, the weather was warm and the door was left open - soaking up the sun. The sound of the sizzle in the skillet interrupted by sound wafting up the stairs, drawing me in. I head downstairs and see that my husband has the sound system placed and the sounds of the 1960s are pulsating through the space. He takes me in his arms and we float around the room, encompassing my pregnant belly with our embrace. We laugh with joy at this spontaneous moment of connection before I run back upstairs to check on the food on the stove, before I set off the fire alarm...again. This is what I will choose to focus on.
Katherine Lockwood
Katherine Lockwood
LETTERS
In matters of COVID awareness, ‘underlying condition’ is a hurtful phrase
Updated July 15, 2020, 7:15 a.m.
Why is it apparently OK for people with underlying conditions to die?
Is it more palpable hearing that, for example, a 32-year-old wife, mother, and educator who died of COVID-19 had a lung condition? Categorizing patients as those with underlying conditions as opposed to those without becomes a way to condone irresponsible behavior. When a deceased COVID patient’s age doesn’t match as predicted, the question becomes “What’s the preexisting condition?”
Knowing that someone has diabetes, asthma, or another condition shouldn’t make the so-called healthy feel that the danger of the coronavirus doesn’t apply to them. Health is a privilege. Use your privilege to protect others while maintaining your own health. Don’t diminish the value of those with chronic illnesses. Wear a mask. Think deeply about your choices and its implications for others.
I am an educator with chronic illness. The risk of COVID-19 has completely isolated my family since early March. In order to protect me, my husband cannot work. The three reopening phases are meaningless for my family. I have no assurance that I will be able to work from home if schools move forward in reopening.
Our ability to enter the “new normal” relies on your actions.
Someone’s underlying condition didn’t kill them — this virus did. Collectively, we must act responsibly toward one another.
Katherine Lockwood
Sandwich
In matters of COVID awareness, ‘underlying condition’ is a hurtful phrase
Updated July 15, 2020, 7:15 a.m.
Why is it apparently OK for people with underlying conditions to die?
Is it more palpable hearing that, for example, a 32-year-old wife, mother, and educator who died of COVID-19 had a lung condition? Categorizing patients as those with underlying conditions as opposed to those without becomes a way to condone irresponsible behavior. When a deceased COVID patient’s age doesn’t match as predicted, the question becomes “What’s the preexisting condition?”
Knowing that someone has diabetes, asthma, or another condition shouldn’t make the so-called healthy feel that the danger of the coronavirus doesn’t apply to them. Health is a privilege. Use your privilege to protect others while maintaining your own health. Don’t diminish the value of those with chronic illnesses. Wear a mask. Think deeply about your choices and its implications for others.
I am an educator with chronic illness. The risk of COVID-19 has completely isolated my family since early March. In order to protect me, my husband cannot work. The three reopening phases are meaningless for my family. I have no assurance that I will be able to work from home if schools move forward in reopening.
Our ability to enter the “new normal” relies on your actions.
Someone’s underlying condition didn’t kill them — this virus did. Collectively, we must act responsibly toward one another.
Katherine Lockwood
Sandwich
Can't you smell the skunk?
Published in the CF Roundtable in 2019
Close the window…Katie…close the window! A skunk – can’t you smell it? No – I can’t.
Well, if I try…maybe a little. Not enough to freak out about a window being open. Sometimes I
even pretend to smell things…it’s easier than explaining why I cannot. Smell this Katie, isn’t it
amazing…Yes, it’s wonderful. I am sure.
The truth is, I have Cystic Fibrosis and I haven’t had a good sense of smell or a normal
sense of taste since six months from my second sinus surgery when I was 21 years old.
Throughout my life, I have begun my morning by coughing up all the post nasal drip that
accumulated during the night. I keep a stockpile of good tea to soothe my throat, including
Throat Coat and Cold Care by Traditional Medicinals and Hot Cinnamon Spice by Harney and
Sons. Highly recommend!
My first surgery was a few years prior to the other one and was somewhat helpful…for
a while. After the second sinus surgery, there was six months or so after they removed 20 or so
grape sized polyps from my sinus cavities that I could smell and taste everything. It was
overwhelming! My favorite food is any kind of Chinese food and for those six months, I found it
overpowering.
As someone with relatively mild lung issues, my sinuses are one of my biggest
headaches. While I may have been slightly relieved when the benefits of surgery wore off and I
could go back to enjoying my Chinese combo plates, the sinus pressure and the pain returned
as well. I find some sinus relief by taking 600mg ibuprofen; doing daily sinus rinses with a
netipot with a saline solution. While I am probably overdue for another surgery, I didn’t find it
especially helpful and anesthesia makes me anxious so I plan on holding off if possible. It is
impossible to fully separate out CF symptoms but I prioritize my self-care.
For me that takes the form of taking a bath every evening to decompress, reading daily,
getting a $35 ½ hour massage weekly (includes facial massage), a minimum of 8 hours sleep,
and visit with family and friends weekly. I am very excited for the new CFTR modulators from
Vertex to be available. In addition to the wonderful opportunities for PFTs, there is also the
potential for this medication to lessen sinus symptoms which would be awesome!
Well, if I try…maybe a little. Not enough to freak out about a window being open. Sometimes I
even pretend to smell things…it’s easier than explaining why I cannot. Smell this Katie, isn’t it
amazing…Yes, it’s wonderful. I am sure.
The truth is, I have Cystic Fibrosis and I haven’t had a good sense of smell or a normal
sense of taste since six months from my second sinus surgery when I was 21 years old.
Throughout my life, I have begun my morning by coughing up all the post nasal drip that
accumulated during the night. I keep a stockpile of good tea to soothe my throat, including
Throat Coat and Cold Care by Traditional Medicinals and Hot Cinnamon Spice by Harney and
Sons. Highly recommend!
My first surgery was a few years prior to the other one and was somewhat helpful…for
a while. After the second sinus surgery, there was six months or so after they removed 20 or so
grape sized polyps from my sinus cavities that I could smell and taste everything. It was
overwhelming! My favorite food is any kind of Chinese food and for those six months, I found it
overpowering.
As someone with relatively mild lung issues, my sinuses are one of my biggest
headaches. While I may have been slightly relieved when the benefits of surgery wore off and I
could go back to enjoying my Chinese combo plates, the sinus pressure and the pain returned
as well. I find some sinus relief by taking 600mg ibuprofen; doing daily sinus rinses with a
netipot with a saline solution. While I am probably overdue for another surgery, I didn’t find it
especially helpful and anesthesia makes me anxious so I plan on holding off if possible. It is
impossible to fully separate out CF symptoms but I prioritize my self-care.
For me that takes the form of taking a bath every evening to decompress, reading daily,
getting a $35 ½ hour massage weekly (includes facial massage), a minimum of 8 hours sleep,
and visit with family and friends weekly. I am very excited for the new CFTR modulators from
Vertex to be available. In addition to the wonderful opportunities for PFTs, there is also the
potential for this medication to lessen sinus symptoms which would be awesome!
Cystic fibrosis patients losing a connection
With new guidelines urging them to stay apart, patients are forced to choose between community and isolation
By Dr. Daniela J. Lamas Globe Correspondent,November 18, 2013, 12:00 a.m.
Cystic fibrosis has not been easy for Katie Lockwood.
But, along with a regimen of chest physical therapy to keep the sticky mucus from building up in her lungs, frequent doctor visits, and the emotional burden of an uncertain future, the disease also brought with it a community. When she was 4, Lockwood spent a week at a summer camp just for CF patients. While growing up, she attended at least five CF fund-raisers each year, enjoyed annual ice-skating and dance parties to raise money for research, learned public speaking at a young age, even met actress Rosie O’Donnell.
Lockwood, now 25, remembers these connections as “the only good part of having a disability.”
In many ways, life will be different for those now growing up with the genetic disease. Children born with cystic fibrosis three decades ago weren’t expected to live much beyond college graduation; now, average life expectancy for the 30,000 Americans with CF approaches 40. The first treatment to target genetic anomalies that cause CF is now on the market.
“I used to go to a lot of funerals of 6- and 7-year-olds — now we’re going to weddings of 25-year-olds,” says Dr. Henry Dorkin, the director of Boston Children’s Hospital Cystic Fibrosis Center. “I like this a lot better.”
But along with the medical advances comes increasing isolation: Doctors now know that contact between one person with CF and another can be deadly.
Most recently, the Cystic Fibrosis Foundation, the national nonprofit that funds research and accredits hospital centers that treat CF patients, announced its recommendations for stricter infection control guidelines. At outdoor CF Foundation events, patients shouldn’t come closer than six feet from each other. At indoor events, only one CF patient can attend at a time. Gone are the summer camps and dance parties of Lockwood’s youth.
“It’s another loss in a lifetime of being compromised by the disease. It’s just one more thing that makes them feel different,” says Elaine Low, Katie’s mother. “But as a parent? I understand.”
In the 1980s, when Lockwood was born, physicians knew that certain bacteria, generally harmless to normal lungs, can devastate the lungs of people with cystic fibrosis. But they didn’t know how easily the bugs could be spread. But in the early 1990s, using new techniques of molecular testing, researchers found that the exact same strain of a particularly dangerous bacteria, Burkholderia cepacia, had been passed from child to child at CF summer camps. By the mid-1990s, the summer camps were closed. Lockwood never returned for her second summer.
Infection control efforts ramped up, focused primarily on Burkholderia. The bacteria is commonly found in soil and water, but the strains in the natural environment are usually different from the strains found in CF patients. For people with CF, many infections with Burkholderia can be deadly. As a result, those found to have Burkholderia in mucus from their lungs were scheduled to have clinic visits at different times so as not to spread the bug in the CF clinic. They were asked not to attend the CF Foundation’s indoor events, due to the risk of infecting others.They were, essentially, “microbiological pariahs,” said Dr. Lisa Saiman, a professor of pediatrics at Columbia University Medical Center who heads the CF Foundation’s committee to update infection prevention and control recommendations.
Caitlin O’Hara, a graphic designer living in Boston, was terrified of Burkholderia. Even before the current guidelines, the 30-year-old remembers, her mother was intensely preoccupied with infection control, and went above and beyond the regulations that were in place at the time. When transient flares of her lung disease would force O’Hara into the hospital for brief stints, her mother would arrive with cleaning supplies. O’Hara was careful to ask doctors and nurses to fully don their gowns and gloves before examining her.
While the medical team would do what they could to “appease” her mother, O’Hara remembers how people would roll their eyes, exasperated. “They acted like we were paranoid, and that’s a terrible feeling,” she said. “I didn’t like being in the hospital because I felt like I was being exposed,” remembers O’Hara. “We were so vigilant in the face of everyone, back then, not being quite so vigilant.”Despite her vigilance, O’Hara contracted Burkholderia cepacia after a hospital stay at age 16. Since then, she says, her lung function has declined – she’s now undergoing evaluation for lung transplant.
Around that time, Saiman was asked by the CF Foundation to review evidence of CF person-to-CF person transmission of bugs other than Burkholderia. Although patients with Burkholderia were segregated from others with CF at that time, everyone else still freely mingled. The 2003 guidelines Saiman and her team published were a significant shift: Cystic fibrosis centers were asked to minimize contact between all patients — not just those with Burkholderia — at clinic visits and in the hospital. CF patients were encouraged to stay three feet away from each other, they were discouraged from socializing outside of the hospital, and were even cautioned to avoid attending the same school as another CF patient.
But perhaps even these recommendations weren’t enough. An event in the early 2000s led Boston Children’s Hospital to adopt even more stringent guidelines. Sure, CF patients in the hospital were under strict instructions to stay away from each other, but it wasn’t unheard of for one patient — bored and alone — to sneak into someone else’s room at night.This changed when doctors started to identify a new bug, called Burkholderia dolosa, in the lungs of their CF patients. The bug was nearly impossible to treat, even with the strongest intravenous antibiotics. Lung function plummeted. Patients died. While some remained stable, others alive today are waiting for lung transplants. An epidemiologic hunt began. Doctors ultimately drew a chain of connection that linked patient to patient through indirect encounters at various clinics, in the hospital, at a Super Bowl game. As a result, “We took Draconian measures,” said Dr. Ahmet Uluer, the director of Brigham and Women’s Hospital and Boston Children’s Hospital Adult Cystic Fibrosis Center. The cystic fibrosis team did away with communal waiting rooms. Patients would wait in washed and disinfected exam rooms instead. Physicians wore gowns and gloves to examine each patient. When patients were admitted to the hospital, they could leave their rooms only with an escort — again, to limit the chance for contact with others. Webcasts and online streaming of live events became the new way to disseminate information, rather than in-person gatherings. There hasn’t been another case of Burkholderia dolosa at Children’s Hospital since.
Children’s wasn’t alone. Epidemiologic studies have described other bugs that have moved from patient to patient in CF centers throughout the globe. Researchers have also learned that less virulent bugs can cause more long-term lung damage than previously thought. And experiments have proven that germs can travel farther through the air than doctors once thought — not just three feet, maybe twice as far.
Which is why, Saiman explains, it was time to update the infection prevention and control guidelines. The CF Foundation got together another committee of doctors, microbiologists, social workers, parents of children with CF, and an adult with CF. Two years, countless conference calls and meetings later, they voted on an extensive set of recommendations. The new knowledge about how droplets can travel means that CF patients at outdoor events shouldn’t come closer than six feet from each other. As many different bugs — not just Burkholderia — can cause lung damage, and pass from patient to patient more frequently than previously thought, only one person with CF should attend an indoor event sponsored by the CF Foundation or CF centers at a time.
“We can’t quantify the risks, but we don’t want to take any risk with somebody’s life,” Saiman explains. She acknowledges, of course, that adults are still free to take whatever risks they choose in their everyday lives. These aren’t laws; the guidelines can’t keep two CF patients from going out to the movies, or dinner, or falling in love, but in the interest of safety, they’re certainly discouraged from doing so.
For CF patients, the reception has been mixed; some, like O’Hara, are relieved, others view the recommendations as unnecessarily paternalistic. “It’s their job to cure me, not to protect me,” said Lockwood. When Kayla Small received a letter from her doctors about the new recommendations some months back, she felt “defeated.” Small, now 29, didn’t grow up with friends who had cystic fibrosis. Her family wasn’t particularly active in the CF Foundation. But in her late adolescence, she started to wonder what it might be like to find a community of others who shared her experience with the disease.
One afternoon back in 2006, Small met a boy with cystic fibrosis in the clinic waiting room. They went out for drinks. Their hands touched. She was breaking the rules. But when he told her that Burkholderia cepacia was growing in his sputum, Small was not willing to risk her health. They never saw each other again. These days, years later, Small will occasionally seek out online cystic fibrosis message boards. She felt a spark of jealousy recently when she read about five cystic fibrosis patients who are all close friends after receiving lung transplants.
But to find support, Small — like those growing up with CF today, without summer camps or communal waiting rooms — finds that she must look outside the world of cystic fibrosis. “To have people know about you having CF is of immense value, and to have it in the open is of immense value,” she said, “But that doesn’t mean they have to have the same experience.”
Dr. Daniela J. Lamas can be reached at [email protected].
With new guidelines urging them to stay apart, patients are forced to choose between community and isolation
By Dr. Daniela J. Lamas Globe Correspondent,November 18, 2013, 12:00 a.m.
Cystic fibrosis has not been easy for Katie Lockwood.
But, along with a regimen of chest physical therapy to keep the sticky mucus from building up in her lungs, frequent doctor visits, and the emotional burden of an uncertain future, the disease also brought with it a community. When she was 4, Lockwood spent a week at a summer camp just for CF patients. While growing up, she attended at least five CF fund-raisers each year, enjoyed annual ice-skating and dance parties to raise money for research, learned public speaking at a young age, even met actress Rosie O’Donnell.
Lockwood, now 25, remembers these connections as “the only good part of having a disability.”
In many ways, life will be different for those now growing up with the genetic disease. Children born with cystic fibrosis three decades ago weren’t expected to live much beyond college graduation; now, average life expectancy for the 30,000 Americans with CF approaches 40. The first treatment to target genetic anomalies that cause CF is now on the market.
“I used to go to a lot of funerals of 6- and 7-year-olds — now we’re going to weddings of 25-year-olds,” says Dr. Henry Dorkin, the director of Boston Children’s Hospital Cystic Fibrosis Center. “I like this a lot better.”
But along with the medical advances comes increasing isolation: Doctors now know that contact between one person with CF and another can be deadly.
Most recently, the Cystic Fibrosis Foundation, the national nonprofit that funds research and accredits hospital centers that treat CF patients, announced its recommendations for stricter infection control guidelines. At outdoor CF Foundation events, patients shouldn’t come closer than six feet from each other. At indoor events, only one CF patient can attend at a time. Gone are the summer camps and dance parties of Lockwood’s youth.
“It’s another loss in a lifetime of being compromised by the disease. It’s just one more thing that makes them feel different,” says Elaine Low, Katie’s mother. “But as a parent? I understand.”
In the 1980s, when Lockwood was born, physicians knew that certain bacteria, generally harmless to normal lungs, can devastate the lungs of people with cystic fibrosis. But they didn’t know how easily the bugs could be spread. But in the early 1990s, using new techniques of molecular testing, researchers found that the exact same strain of a particularly dangerous bacteria, Burkholderia cepacia, had been passed from child to child at CF summer camps. By the mid-1990s, the summer camps were closed. Lockwood never returned for her second summer.
Infection control efforts ramped up, focused primarily on Burkholderia. The bacteria is commonly found in soil and water, but the strains in the natural environment are usually different from the strains found in CF patients. For people with CF, many infections with Burkholderia can be deadly. As a result, those found to have Burkholderia in mucus from their lungs were scheduled to have clinic visits at different times so as not to spread the bug in the CF clinic. They were asked not to attend the CF Foundation’s indoor events, due to the risk of infecting others.They were, essentially, “microbiological pariahs,” said Dr. Lisa Saiman, a professor of pediatrics at Columbia University Medical Center who heads the CF Foundation’s committee to update infection prevention and control recommendations.
Caitlin O’Hara, a graphic designer living in Boston, was terrified of Burkholderia. Even before the current guidelines, the 30-year-old remembers, her mother was intensely preoccupied with infection control, and went above and beyond the regulations that were in place at the time. When transient flares of her lung disease would force O’Hara into the hospital for brief stints, her mother would arrive with cleaning supplies. O’Hara was careful to ask doctors and nurses to fully don their gowns and gloves before examining her.
While the medical team would do what they could to “appease” her mother, O’Hara remembers how people would roll their eyes, exasperated. “They acted like we were paranoid, and that’s a terrible feeling,” she said. “I didn’t like being in the hospital because I felt like I was being exposed,” remembers O’Hara. “We were so vigilant in the face of everyone, back then, not being quite so vigilant.”Despite her vigilance, O’Hara contracted Burkholderia cepacia after a hospital stay at age 16. Since then, she says, her lung function has declined – she’s now undergoing evaluation for lung transplant.
Around that time, Saiman was asked by the CF Foundation to review evidence of CF person-to-CF person transmission of bugs other than Burkholderia. Although patients with Burkholderia were segregated from others with CF at that time, everyone else still freely mingled. The 2003 guidelines Saiman and her team published were a significant shift: Cystic fibrosis centers were asked to minimize contact between all patients — not just those with Burkholderia — at clinic visits and in the hospital. CF patients were encouraged to stay three feet away from each other, they were discouraged from socializing outside of the hospital, and were even cautioned to avoid attending the same school as another CF patient.
But perhaps even these recommendations weren’t enough. An event in the early 2000s led Boston Children’s Hospital to adopt even more stringent guidelines. Sure, CF patients in the hospital were under strict instructions to stay away from each other, but it wasn’t unheard of for one patient — bored and alone — to sneak into someone else’s room at night.This changed when doctors started to identify a new bug, called Burkholderia dolosa, in the lungs of their CF patients. The bug was nearly impossible to treat, even with the strongest intravenous antibiotics. Lung function plummeted. Patients died. While some remained stable, others alive today are waiting for lung transplants. An epidemiologic hunt began. Doctors ultimately drew a chain of connection that linked patient to patient through indirect encounters at various clinics, in the hospital, at a Super Bowl game. As a result, “We took Draconian measures,” said Dr. Ahmet Uluer, the director of Brigham and Women’s Hospital and Boston Children’s Hospital Adult Cystic Fibrosis Center. The cystic fibrosis team did away with communal waiting rooms. Patients would wait in washed and disinfected exam rooms instead. Physicians wore gowns and gloves to examine each patient. When patients were admitted to the hospital, they could leave their rooms only with an escort — again, to limit the chance for contact with others. Webcasts and online streaming of live events became the new way to disseminate information, rather than in-person gatherings. There hasn’t been another case of Burkholderia dolosa at Children’s Hospital since.
Children’s wasn’t alone. Epidemiologic studies have described other bugs that have moved from patient to patient in CF centers throughout the globe. Researchers have also learned that less virulent bugs can cause more long-term lung damage than previously thought. And experiments have proven that germs can travel farther through the air than doctors once thought — not just three feet, maybe twice as far.
Which is why, Saiman explains, it was time to update the infection prevention and control guidelines. The CF Foundation got together another committee of doctors, microbiologists, social workers, parents of children with CF, and an adult with CF. Two years, countless conference calls and meetings later, they voted on an extensive set of recommendations. The new knowledge about how droplets can travel means that CF patients at outdoor events shouldn’t come closer than six feet from each other. As many different bugs — not just Burkholderia — can cause lung damage, and pass from patient to patient more frequently than previously thought, only one person with CF should attend an indoor event sponsored by the CF Foundation or CF centers at a time.
“We can’t quantify the risks, but we don’t want to take any risk with somebody’s life,” Saiman explains. She acknowledges, of course, that adults are still free to take whatever risks they choose in their everyday lives. These aren’t laws; the guidelines can’t keep two CF patients from going out to the movies, or dinner, or falling in love, but in the interest of safety, they’re certainly discouraged from doing so.
For CF patients, the reception has been mixed; some, like O’Hara, are relieved, others view the recommendations as unnecessarily paternalistic. “It’s their job to cure me, not to protect me,” said Lockwood. When Kayla Small received a letter from her doctors about the new recommendations some months back, she felt “defeated.” Small, now 29, didn’t grow up with friends who had cystic fibrosis. Her family wasn’t particularly active in the CF Foundation. But in her late adolescence, she started to wonder what it might be like to find a community of others who shared her experience with the disease.
One afternoon back in 2006, Small met a boy with cystic fibrosis in the clinic waiting room. They went out for drinks. Their hands touched. She was breaking the rules. But when he told her that Burkholderia cepacia was growing in his sputum, Small was not willing to risk her health. They never saw each other again. These days, years later, Small will occasionally seek out online cystic fibrosis message boards. She felt a spark of jealousy recently when she read about five cystic fibrosis patients who are all close friends after receiving lung transplants.
But to find support, Small — like those growing up with CF today, without summer camps or communal waiting rooms — finds that she must look outside the world of cystic fibrosis. “To have people know about you having CF is of immense value, and to have it in the open is of immense value,” she said, “But that doesn’t mean they have to have the same experience.”
Dr. Daniela J. Lamas can be reached at [email protected].
Living with hope and cystic fibrosis. Published in the Cape Cod Times in 2011.