lung gangrene :: Article CreatorYankees Legend On Father's Rare Disease: 'We Didn't Know What Was Wrong'
Bernie Williams, a former Major League Baseball star turned advocate, has made a lasting impact on the lives of many through his work in raising awareness about interstitial lung disease (ILD). His advocacy journey is deeply personal, rooted in the experience of losing his father, Bernabé Williams Sr., to a rare form of ILD known as idiopathic pulmonary fibrosis (IPF) in 2001. Williams' story is not just one of triumph on the baseball field, but of perseverance and compassion off the field, as he helps others navigate the challenges of living with this disease.
A Personal Battle: Losing His Father to IPF
Williams' father was a pivotal figure in his life, from teaching him how to play baseball to nurturing his love for music. In his prime, Bernabé Williams Sr. Was active, energetic, and fully engaged with life. But as Williams recalls, everything changed when his father began exhibiting unexplained symptoms.
"He was very active. But at some point, we noticed he was getting a lot more tired than usual and developed a dry cough that wouldn't go away. He started feeling fatigued, and all the things he used to do without a problem became a struggle," Williams tells BlackDoctor.Org.
They initially attributed it to age, but as the abnormalities continued, they knew Williams Sr. Needed to see a doctor.
The journey to a diagnosis was long and fraught with frustration. It took five years for doctors in Puerto Rico to correctly identify that Williams Sr. Was suffering from idiopathic pulmonary fibrosis, a form of ILD that causes scarring of the lungs and progressive respiratory decline. This delay in diagnosis meant that Williams Sr. Spent years being treated only for his symptoms, without a clear understanding of the disease itself.
"Not many people knew about it there, so it was by chance that one of the doctors thought to test him for it. Unfortunately, by the time we found out he had IPF, we had been dealing with symptoms for a long time without addressing the actual cause," Williams shares.
From there, Williams began educating himself on the condition. "We didn't know much about idiopathic pulmonary fibrosis, and that was part of the struggle—finding the right information to help our dad," Williams shares.
Realizing that his condition was progressive and that he wasn't going to get better was heartbreaking for the Williams family. However, they decided to focus on making sure their father's quality of life was as good as possible.
Advocacy and the Birth of "Tune In to Lung Health"
After his father's death, Williams was determined to turn his pain into purpose. He became an advocate for lung health, specifically raising awareness about ILD and the importance of early diagnosis. His experiences led him to partner with the "Tune In to Lung Health" campaign, an initiative aimed at educating patients and caregivers about ILD.
The campaign seeks to not only spread awareness but also offer emotional and psychological support
"The program is all about education. We want to make sure people have the right information so they can make informed decisions about treatment and resources," Williams says.
Music as Medicine: Healing Through Sound
Music, a lifelong passion for Williams, has also become a key component of the initiative. Through the program, patients and caregivers are encouraged to use music as a way to cope with the isolation, anxiety, and emotional toll of dealing with a chronic, life-threatening illness.
"Music can be a powerful tool in dealing with these emotions. We also have breathing exercises led by Eric Vetro, which are helpful for patients dealing with breathing difficulties caused by the disease. Plus, we've put together a playlist of some of my favorite songs, and we have educational content featuring interviews with Eric, myself, and patients. The idea is to raise awareness and lead people to the website, TuneInToLungHealth.Com, for more information," Williams shares.
A Return to Puerto Rico: Reconnecting Through Performance
In a touching tribute to his father and his heritage, Williams recently returned to Puerto Rico for a special performance near his hometown. The event was not only a homecoming for the former Yankee star, but also an opportunity to raise awareness about ILD in a community that may not have had access to the right information.
"It was amazing—a dream come true. It gave me a chance to reconnect with my roots. The performance was not far from where I grew up in the northern part of the island, and I saw many people I hadn't seen in years. My friends were part of the band, so it was special on many levels," Williams adds.
The performance was a way for Williams to bring his advocacy full circle.
"It was a great opportunity to spread awareness about the disease. Some people there may be suffering from the disease without even knowing it, so it was important for them to hear this information. For me, it was a great way to reconnect with my roots and honor my father through music," Williams notes.
Lessons from a Caregiver: Advice for Families and Patients
Reflecting on his role as both a son and advocate, Williams shares some key lessons for other caregivers and patients facing ILD.
Education is key. "Having the right resources can make all the difference in understanding what you're dealing with," Williams says. If you're a caregiver, remember to take care of yourself. "For caregivers, it's important to take care of themselves as well. My brother and my mom were the ones who took on the brunt of caregiving because I was often away playing baseball, but staying in communication and taking care of their own well-being was important. As a caregiver, you don't want the patient to pick up on your stress or fatigue, so maintaining a positive outlook and utilizing all available resources is essential," Williams adds. Keeping His Father's Legacy Alive
When asked about the most rewarding part of his advocacy work, Williams spoke about how proud he knows his father would be.
"I know he's looking down, feeling proud of what I'm doing. Turning something tragic into something positive has been rewarding. It's been important for me to share my story and put a face to this disease, but what's really rewarding is meeting patients and hearing their gratitude. Whether it's children or elderly people dealing with the same condition, it makes the work we're doing feel worthwhile," Williams concludes.
For more information on idiopathic pulmonary fibrosis and interstitial lung diseases, and to learn how you can get involved, visit TuneInToLungHealth.Com.
These Early Signs Of Lung Cancer Are Often Missed, Oncologists Say
Lung cancer is the second-leading cause of cancer death in the United States after skin cancer, according to the American Cancer Society. The disease is to blame for about 1 in 5 cancer deaths, and the ACS estimates more than 125,000 people will die from it this year.
These statistics are grim, but there's a reason why lung cancer often progresses past the point where it's treatable: Early signs of lung cancer are often missed (or nonexistent).
"Most patients may not have symptoms unless it has spread or unless there is evidence it is metastatic or there is involvement of major structures," says Dr. Amna Sher, a medical oncologist at Stony Brook Cancer Center.
Early diagnosis can significantly improve a person's chances of survival. For instance, the five-year survival rate for the most common type of lung cancer, non-small cell lung cancer, which includes adenocarcinoma, squamous cell carcinoma and large cell carcinoma, is 65 percent if diagnosed while it's still localized (in other words, it hasn't spread elsewhere in the body).
Those numbers drop to 37 percent if it spreads to structures near the lungs, like the lymph nodes, and just 9 percent if it spreads to more distant areas of the body, such as the brain.
It's a lot to take in. But the bottom line is this: "If lung cancer can be diagnosed at an early stage, the patient will have more treatment options and a better chance of remission," says Dr. Xiuning Le, a V Foundation clinical scholar at the University of Texas' MD Anderson Cancer Center. "It is extremely important to detect lung cancer as early as possible."
But how? Doctors shared commonly missed early signs of lung cancer and what to do if you're concerned.
Commonly missed sign
A persistent or worsening cough is a commonly missed early sign of lung cancer, Sher says.
"It warrants an evaluation if someone has a new or persistent cough … which has been ongoing for several weeks or months, especially in a high-risk patient with a strong history of smoking," she says. "For example, you got a course of antibiotics, but it's been two months, and you're still coughing — seek medical attention."
Sher says doctors often see patients come in with months of a persistent cough, but an abnormal X-ray prompts a deeper dive into the cause of the issue.
Easy to dismiss
Le and another expert agree that a chronic cough is an easy-to-miss sign of lung cancer. Part of the problem: Chronic coughs are often similar to other diseases, including those at a higher risk for lung cancer — primarily smokers — may already have.
"Most — but not all — cases of lung cancer are associated with a prior tobacco smoking history," says Dr. Brett Bade, the director of the Lung Cancer Screening Program at Northwell Lung Insitute in New York. "Tobacco smoking is a risk factor for both lung cancer and lung disease. Chronic obstructive pulmonary disease, for example, can also cause a chronic cough and shortness of breath. People may attribute their symptoms to their lung disease or prior tobacco use."
In other words, patients may be used to coughing and consider it normal.
Even people without a history of smoking or lung disease may chalk a persistent cough up to something else, and usually, something less severe.
"Patients may think it's just an upper respiratory infection or virus," Sher says. "It may be seasonal. Patients have allergies. If you're around patients with kids, you're exposed to all these viruses and may think you just didn't get better."
Other overlooked signs
A persistent cough isn't the only early sign of lung cancer that's easy to overlook.
"Since the lungs don't have many pain receptors, most symptoms of lung cancer are related to the tumor's involvement of a local structure or another organ," Bade says. "For example … shortness of breath may develop if the tumor involves the airway. Similarly, if the tumor spreads to a bone, the involved bone becomes painful."
Bade says that other common signs of lung cancer a patient may not recognize include: fatigue, hoarseness, chest pain, bone pain, reduced appetite and weight loss.
Diagnosis, treatment
Doctors will biopsy the involved site to diagnose lung cancer.
"Frequent biopsy sites include the lungs, lymph nodes in the neck or chest or drainage of fluid from around the lungs," Bade explains. "If other organs are involved, your doctor may recommend a biopsy of those sites; examples might include the liver, the adrenal gland or a bone."
Le says that several factors determine a patient's lung cancer treatment plan, mainly: the type of lung cancer, the cancer's stage, and genetic and immunological features of the specific patient.
"In general, surgery, radiation and systemic therapies are all effective treatments for lung cancer," Le says. "There are many different options within the (therapy) class."
A care team will work with a patient on the best option for their specific case.
If you're concerned about lung cancer, talk to your doctor.
"Early recognition and early treatment is the key to longer lung cancer survival," Le says. "If you have new symptoms or suspect you are eligible for lung cancer screening, you should discuss it with your doctor."
Incidence And Risk Factors Of An Invasive Fungal Lung Infection Among COVID-19 Patients
New research reveals that COVID-19-associated pulmonary aspergillosis (CAPA) affects 0.4%–2.7% of severe COVID-19 patients in Japan.
Study: Incidence and risk factors for coronavirus disease 2019-associated pulmonary aspergillosis using administrative claims data. Image Credit: CI Photos/Shutterstock.Com
In a recent study published in Mycoses, researchers from Japan investigated the incidence and risk factors for COVID-19-associated pulmonary aspergillosis (CAPA) in severe and critical coronavirus disease 2019 (COVID-19) patients.
They found that the incidence of CAPA ranged from 0.4% to 2.7%, and CAPA was associated with increased mortality in these patients. They further identified several risk factors associated with CAPA, including age, gender, chronic lung disease, and immunosuppressant and steroid use.
Background
CAPA is a serious complication of COVID-19, with reported incidence rates ranging from 3.8% to 35%, depending on country, medication use, and study methods. In Japan, smaller studies have reported varying incidence rates: 4.1% in a single-center study by Ogawa et al. And 0.54% in a country-wide survey by Takazono et al. However, these studies had limitations, including facility bias and underreporting.
To better understand CAPA's epidemiology in Japan, a larger, more reliable study using data from the Diagnosis Procedure Combination (DPC) system was conducted. In the present study, researchers aimed to assess the incidence, mortality, and risk factors associated with CAPA in patients with severe and critical COVID-19. They aimed to assess the impact of the condition on Japan.
About the study
The present study used administrative claims data from Japanese advanced treatment hospitals. Medical Data Vision (MDV) provided data from over 460 hospitals, covering approximately 26% of such hospitals in Japan. The data included patient demographics, diagnoses, medical procedures, and survival status.
The study focused on 33,136 patients with severe or critical COVID-19, defined by respiratory status. Those who did not progress to severe/critical COVID-19 or had a prior diagnosis of CAPA before severe disease progression were excluded from the study.
Severe and critical COVID-19 were defined according to the National Institute of Health (NIH) clinical spectrum, with critical illness including patients requiring admission to the intensive care unit (ICU), non-invasive positive pressure ventilation, high-flow oxygen therapy, or invasive ventilation. Severe illness refers to COVID-19 patients receiving oxygen but not meeting the criteria for critical illness.
A subgroup of 14,720 patients with critical COVID-19 was also analyzed. In both populations, the mean age slightly exceeded 65 years, with over 60% of the patients being male. Notably, more than 90% of COVID-19 cases in these groups were reported after November 2020. The prevalence of comorbidities in these populations was as follows: hypertension (44.9–47.7%), diabetes (21.6–24.5%), dyslipidemia (18.0–18.9%), lung disease (24.8–28.8%), renal failure (7.0–7.6%), cancer (7.8–10.2%), and organ transplantation history (0.1–0.2%).
CAPA diagnosis was based on two definitions: a broad definition including suspected or diagnosed CAPA within two months of COVID-19 progression and a narrow definition that required both a CAPA diagnosis and antifungal medication use. Mortality analysis was conducted within two months of severe or critical illness progression. Various demographic and clinical data, such as age, comorbidities, and admission to the ICU, were analyzed to identify risk factors. Statistical analysis involved the use of time-dependent propensity score matching, Cox proportional hazards regression, competing risk analysis, and multiple imputation for missing data.
Results and discussion
The incidence of CAPA was found to vary between 0.4% and 1.7% in the severe or critical COVID-19 population and 0.5% to 2.7% in the critical COVID-19 subgroup. The median time from COVID-19 progression to CAPA diagnosis was 17 days for both groups.
Voriconazole and micafungin were the primary medications used for treating CAPA, accounting for over 80% of the treatment regimen. Significant risk factors for CAPA were identified, including older age, male sex, chronic lung disease, steroid and immunosuppressant use, ICU admission, blood transfusion, and dialysis.
The study found that compared to those without CAPA, patients with CAPA showed increased mortality, with hazard ratios of 2.367 and 1.955 for the severe and critical COVID-19 populations, respectively.
The study calls for regular monitoring of CAPA in severe and critical COVID-19 patients, given its impact on mortality and prognosis. However, the study is limited by its reliance on physician-diagnosed CAPA, incomplete comorbidity data, lack of analysis on newer SARS-CoV-2 variants, exclusion of non-severe COVID-19 cases, and inability to assess prehospital medication use or detailed steroid and immunosuppressant effects.
Conclusion
In conclusion, CAPA is a serious complication in severe as well as critical COVID-19 patients, with risk factors including older age, chronic lung disease, steroid use, immunosuppressants, ICU admission, dialysis, and blood transfusions. CAPA significantly worsens patient outcomes and should be closely monitored.
The findings highlight the need for targeted strategies to mitigate CAPA in high-risk COVID-19 patients, contributing to better clinical decision-making and healthcare planning.
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