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Last month, I attended the funeral of my uncle who died at age 88 from pulmonary fibrosis, a condition that he battled for more than a decade. Having the honor of delivering a tribute to his life during the ceremony, I included an explanation of the basics of the disease to the audience that had packed the church located in an upscale neighborhood in the Chicago suburbs.
Afterward, I wondered if medical science and we as medical providers are making any real progress in fighting this relentless fibrotic interstitial lung disease. After all, I had watched him gradually decline, first plagued by an endless nonproductive cough, then exertional dyspnea, exertional hypoxia, and followed by hypoxia at rest. Eventually, he was short of breath with moving from his bed to the bathroom – even on high flow supplemental oxygen. It was a slow, gradual process of asphyxiation.
He had every resource available to him. He was seen by the best subspecialty providers in his community and saw experts in major medical centers across the country. He had been given the seemingly usual trial of corticosteroids initially, and then for unclear reasons, several inhalers. Maybe because his doctors didn’t have much else to offer. He was then treated with pirfenidone, and later switched to nintedanib when the side effects were too much for him to handle. Lung transplant was considered and then ruled out. With more respiratory symptoms, and despite my caution against it, he even tried experimental therapy with stem cells – an unproven treatment with additional potential for untoward consequences. At that point, he considered my suggestion to hold off, shrugged, and indicated that if he had the wherewithal and means to try it, why not?
Besides watching the desperation of finding that elusive therapy that will somehow erase the progressive symptoms of shortness of breath and cough, what I realized from being on the “other side of the gurney” with a family member is that sometimes obtaining basic treatments like supplemental oxygen can be more challenging than obtaining the more expensive pharmacologic therapies. And, that having to use supplemental oxygen is like being tethered, especially if your portable oxygen delivery device is unreliable or battery power is questionable. I’ve thought about folks with lung disease who do not have a “best practice” resource that includes unlimited medical direction and access to care. What about the people who can’t afford experimental therapies, who cannot easily navigate the medical maze, or who do not have someone to phone and call to help them when their portable oxygen concentrator develops a fatal hardware error?
I pondered the reality of his illness. Yes, at some point all of us will die. But in the end, were his treatments a success? What exactly does success look like when it comes to treatment of idiopathic pulmonary fibrosis? Did we as a medical community slow down his inevitable decline in lung function? Did we make a meaningful difference? Ultimately, does it matter if someone has a better FEV1, or trek 30 feet farther on a 6-minute walk for a few more months? Maybe. Then, as I traveled with my uncle on his medical journey, I realized that, yes, even the small things really do matter, retrospectively.
I think in my uncle’s case, his eventual demise came, but only after great successes by the medical community. The inevitable was delayed for several years at a minimum. He remained comfortable. He was able to do things on his “bucket list” that he would not likely have been able to enjoy without treatment. It allowed him to take an Honor Flight to Washington, DC, to be remembered for his heroic service in the Korean War. It allowed him to attend the 150th annual convention of the American Legion last summer, as he completed his service as the Commander of his local post. On a personal and maybe more selfish level, it allowed me to be able to enjoy dinner with him on two or three occasions while visiting Chicago during CHEST business meetings at the headquarters location. How much value do we place on being able to hear a few more family stories, to watch someone who you know is going to die smile and laugh, and share memories together for what could be the final time?
Through this experience, I have been reminded to recognize that there are many small, silent victories for our medical community in the war against devastating disease. We need to celebrate even the tiny advances. The medical community did not let him down. It rallied to give him the best we could offer with the tools we had at hand. And, keeping in mind those yet to develop this condition, it’s time to keep working hard to make a difference. Whether doing basic research, creating the medications of the future to treat respiratory illness, diagnosing conditions earlier and more accurately, or providing compassionate, patient-centered care, let’s keep our focus on crushing lung disease -- a little bit at a time.
Last month, I attended the funeral of my uncle who died at age 88 from pulmonary fibrosis, a condition that he battled for more than a decade. Having the honor of delivering a tribute to his life during the ceremony, I included an explanation of the basics of the disease to the audience that had packed the church located in an upscale neighborhood in the Chicago suburbs.
Afterward, I wondered if medical science and we as medical providers are making any real progress in fighting this relentless fibrotic interstitial lung disease. After all, I had watched him gradually decline, first plagued by an endless nonproductive cough, then exertional dyspnea, exertional hypoxia, and followed by hypoxia at rest. Eventually, he was short of breath with moving from his bed to the bathroom – even on high flow supplemental oxygen. It was a slow, gradual process of asphyxiation.
He had every resource available to him. He was seen by the best subspecialty providers in his community and saw experts in major medical centers across the country. He had been given the seemingly usual trial of corticosteroids initially, and then for unclear reasons, several inhalers. Maybe because his doctors didn’t have much else to offer. He was then treated with pirfenidone, and later switched to nintedanib when the side effects were too much for him to handle. Lung transplant was considered and then ruled out. With more respiratory symptoms, and despite my caution against it, he even tried experimental therapy with stem cells – an unproven treatment with additional potential for untoward consequences. At that point, he considered my suggestion to hold off, shrugged, and indicated that if he had the wherewithal and means to try it, why not?
Besides watching the desperation of finding that elusive therapy that will somehow erase the progressive symptoms of shortness of breath and cough, what I realized from being on the “other side of the gurney” with a family member is that sometimes obtaining basic treatments like supplemental oxygen can be more challenging than obtaining the more expensive pharmacologic therapies. And, that having to use supplemental oxygen is like being tethered, especially if your portable oxygen delivery device is unreliable or battery power is questionable. I’ve thought about folks with lung disease who do not have a “best practice” resource that includes unlimited medical direction and access to care. What about the people who can’t afford experimental therapies, who cannot easily navigate the medical maze, or who do not have someone to phone and call to help them when their portable oxygen concentrator develops a fatal hardware error?
I pondered the reality of his illness. Yes, at some point all of us will die. But in the end, were his treatments a success? What exactly does success look like when it comes to treatment of idiopathic pulmonary fibrosis? Did we as a medical community slow down his inevitable decline in lung function? Did we make a meaningful difference? Ultimately, does it matter if someone has a better FEV1, or trek 30 feet farther on a 6-minute walk for a few more months? Maybe. Then, as I traveled with my uncle on his medical journey, I realized that, yes, even the small things really do matter, retrospectively.
I think in my uncle’s case, his eventual demise came, but only after great successes by the medical community. The inevitable was delayed for several years at a minimum. He remained comfortable. He was able to do things on his “bucket list” that he would not likely have been able to enjoy without treatment. It allowed him to take an Honor Flight to Washington, DC, to be remembered for his heroic service in the Korean War. It allowed him to attend the 150th annual convention of the American Legion last summer, as he completed his service as the Commander of his local post. On a personal and maybe more selfish level, it allowed me to be able to enjoy dinner with him on two or three occasions while visiting Chicago during CHEST business meetings at the headquarters location. How much value do we place on being able to hear a few more family stories, to watch someone who you know is going to die smile and laugh, and share memories together for what could be the final time?
Through this experience, I have been reminded to recognize that there are many small, silent victories for our medical community in the war against devastating disease. We need to celebrate even the tiny advances. The medical community did not let him down. It rallied to give him the best we could offer with the tools we had at hand. And, keeping in mind those yet to develop this condition, it’s time to keep working hard to make a difference. Whether doing basic research, creating the medications of the future to treat respiratory illness, diagnosing conditions earlier and more accurately, or providing compassionate, patient-centered care, let’s keep our focus on crushing lung disease -- a little bit at a time.
Last month, I attended the funeral of my uncle who died at age 88 from pulmonary fibrosis, a condition that he battled for more than a decade. Having the honor of delivering a tribute to his life during the ceremony, I included an explanation of the basics of the disease to the audience that had packed the church located in an upscale neighborhood in the Chicago suburbs.
Afterward, I wondered if medical science and we as medical providers are making any real progress in fighting this relentless fibrotic interstitial lung disease. After all, I had watched him gradually decline, first plagued by an endless nonproductive cough, then exertional dyspnea, exertional hypoxia, and followed by hypoxia at rest. Eventually, he was short of breath with moving from his bed to the bathroom – even on high flow supplemental oxygen. It was a slow, gradual process of asphyxiation.
He had every resource available to him. He was seen by the best subspecialty providers in his community and saw experts in major medical centers across the country. He had been given the seemingly usual trial of corticosteroids initially, and then for unclear reasons, several inhalers. Maybe because his doctors didn’t have much else to offer. He was then treated with pirfenidone, and later switched to nintedanib when the side effects were too much for him to handle. Lung transplant was considered and then ruled out. With more respiratory symptoms, and despite my caution against it, he even tried experimental therapy with stem cells – an unproven treatment with additional potential for untoward consequences. At that point, he considered my suggestion to hold off, shrugged, and indicated that if he had the wherewithal and means to try it, why not?
Besides watching the desperation of finding that elusive therapy that will somehow erase the progressive symptoms of shortness of breath and cough, what I realized from being on the “other side of the gurney” with a family member is that sometimes obtaining basic treatments like supplemental oxygen can be more challenging than obtaining the more expensive pharmacologic therapies. And, that having to use supplemental oxygen is like being tethered, especially if your portable oxygen delivery device is unreliable or battery power is questionable. I’ve thought about folks with lung disease who do not have a “best practice” resource that includes unlimited medical direction and access to care. What about the people who can’t afford experimental therapies, who cannot easily navigate the medical maze, or who do not have someone to phone and call to help them when their portable oxygen concentrator develops a fatal hardware error?
I pondered the reality of his illness. Yes, at some point all of us will die. But in the end, were his treatments a success? What exactly does success look like when it comes to treatment of idiopathic pulmonary fibrosis? Did we as a medical community slow down his inevitable decline in lung function? Did we make a meaningful difference? Ultimately, does it matter if someone has a better FEV1, or trek 30 feet farther on a 6-minute walk for a few more months? Maybe. Then, as I traveled with my uncle on his medical journey, I realized that, yes, even the small things really do matter, retrospectively.
I think in my uncle’s case, his eventual demise came, but only after great successes by the medical community. The inevitable was delayed for several years at a minimum. He remained comfortable. He was able to do things on his “bucket list” that he would not likely have been able to enjoy without treatment. It allowed him to take an Honor Flight to Washington, DC, to be remembered for his heroic service in the Korean War. It allowed him to attend the 150th annual convention of the American Legion last summer, as he completed his service as the Commander of his local post. On a personal and maybe more selfish level, it allowed me to be able to enjoy dinner with him on two or three occasions while visiting Chicago during CHEST business meetings at the headquarters location. How much value do we place on being able to hear a few more family stories, to watch someone who you know is going to die smile and laugh, and share memories together for what could be the final time?
Through this experience, I have been reminded to recognize that there are many small, silent victories for our medical community in the war against devastating disease. We need to celebrate even the tiny advances. The medical community did not let him down. It rallied to give him the best we could offer with the tools we had at hand. And, keeping in mind those yet to develop this condition, it’s time to keep working hard to make a difference. Whether doing basic research, creating the medications of the future to treat respiratory illness, diagnosing conditions earlier and more accurately, or providing compassionate, patient-centered care, let’s keep our focus on crushing lung disease -- a little bit at a time.