Life Hacks that Help Me to Live with PH - Pulmonary Hypertension News
Life Hacks that Help Me to Live with PH - Pulmonary Hypertension News |
- Life Hacks that Help Me to Live with PH - Pulmonary Hypertension News
- SNUH team finds method to detect pulmonary arterial hypertension early - Korea Biomedical Review
- Remembering that It's OK to Not Be OK: PH and Mental Health - Pulmonary Hypertension News
- For Blake: Global kindness movement honors East Lansing native's young son - Lansing State Journal
- Urinary NT-proBNP Has Potential as Biomarker for PH in Premature... - Pulmonary Hypertension News
| Life Hacks that Help Me to Live with PH - Pulmonary Hypertension News Posted: 31 Jan 2020 07:00 AM PST We don't always have a choice about what life throws our way. But our response to challenges is something we can control. Living with pulmonary hypertension (PH), I don't always have control over my body. With that lack of control comes frustration. However, I've found some coping strategies that improve my quality of life with PH. A chronic illness like pulmonary hypertension can affect someone in a variety of ways. Daily life with energy-depleting symptoms is taxing. Through trial and error, I have found some hacks that can help make life with PH a little simpler for me. When discussing energy within the rare disease communities, we often mention that we are out of "spoons." For those of you unfamiliar with the "spoon theory," it comes from an essay by Christine Miserandino in which she describes how she explained to a friend her limitations while living with lupus. Like Miserandino, some days I wake up with no spoons. My main objective is to conserve my energy so that I can complete tasks planned for a particular day. But as you all know, even the best-laid plans can change. While using these life hacks, I have noticed that I tend to have more productive days. Who doesn't like checking items off their to-do list? Some of my life hacks have proved to be beneficial while I try to balance life with PH. I set alarms on my phone as reminders to take my pills. Currently, I have four pill alarms and a pillbox that I organize each week. I started cooking dinner as a young tween for my parents and sisters. Cooking for my family has always been an enjoyable experience for me, but the physical demands of PH have forced me to develop some strategies to continue to do that. A small foldable stool in the kitchen helps me when I'm prepping and cutting vegetables. I sometimes buy prewashed and cut fruits and vegetables if I find them at a good price. Another favorite cooking hack is my Instant Pot. This is like your grandmother's pressure cooker, but much better. I use mine to make soups, beans, chili, and shredded proteins for the week. My local H-E-B grocer offers free, next-day delivery. Kroger stores also deliver, and they may offer coupons for a free service. If you're fortunate to be an Amazon Prime member, you can order almost anything from there — if you have a local Whole Foods, look for prime savings. When I feel up to going out to the store, whether it's the supermarket or warehouse, I take advantage of the electric carts that are usually available. I haven't always been so open to using these carts. However, after a few attempts to shop without them, that ended in frustration and my walking out with no groceries. I gave in. Following are other hacks that help to make my life with PH easier:
What life hacks help to make PH life a little easier for you? Please share in the comments below. *** Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.  × Latest Posts  | ||
| SNUH team finds method to detect pulmonary arterial hypertension early - Korea Biomedical Review Posted: 14 Jan 2020 12:00 AM PST A Seoul National University Hospital (SNUH) research team has developed a molecular image analysis method that can detect pulmonary arterial hypertension at an early stage.
The team, led by Professors Lee Seung-pyo, Park Jun-bin, and Pang Jin-chul at the hospital, said that their method could evaluate the pulmonary hypertension inflammatory response, which may be used for the early diagnosis of pulmonary hypertension and confirmation of treatment response. Pulmonary arterial hypertension is a disease in which the pulmonary artery narrows for no particular reason. Its symptoms include pressure rise and the fall in the patient's right ventricular function. Such symptoms lead to the blood not flowing from the heart to the lungs smoothly and can cause shortness of breath, heart failure, and even death. Despite the steady development of medical technology, the five-year survival rate for pulmonary arterial hypertension is only about half. Due to the prognosis of the disease, early diagnosis and treatment are essential. To develop an early diagnosis model, the researchers focused on the inflammatory response in the pulmonary blood vessels of patients. The researchers hypothesized that if they visualized and quantified the inflammatory response, they could confirm the development of pulmonary arterial hypertension. The team determined the inflammatory response through the degree of macrophage invasion. To confirm their theory, the SNUH researchers injected a 68Ga-NOTA-MSA compound into the body using a marker. After a positron emission tomography scan, the expression of this marker increased as the macrophage infiltration became more severe. "In other words, the marker was used to colorize the inflammatory response associated with pulmonary arterial hypertension," the team said in a press release. "In actual clinical trials, patients with pulmonary hypertension showed significantly higher color expression than the healthy control group." The team stressed that the significance of this study was that it opened the possibility of early detection of pulmonary arterial hypertension. "The main symptoms of pulmonary arterial hypertension are shortness of breath and dizziness," it team said. "It's a relatively common phenomenon in everyday life, so people tend to ignore it or treat it as another disease." That explains why treatment for the disease was often delayed, the team added. According to the Korea Centers for Disease Control and Prevention, the average time to diagnose pulmonary hypertension accurately was 1.5 years. Accurate diagnosis also requires a costly examination by inserting wires into the body. However, the newly developed imaging technique is noninvasive and is simpler than the existing test. "Early diagnosis of pulmonary arterial hypertension is vital, and efforts have been made to diagnose it at an early stage of the disease," Professor Lee said. "We expect the study will contribute to the early diagnosis and prognosis of pulmonary arterial hypertension." American Journal of Respiratory and Critical Care Medicine published the results of the research. corea022@docdocdoc.co.kr <© Korea Biomedical Review, All rights reserved.>  | ||
| Remembering that It's OK to Not Be OK: PH and Mental Health - Pulmonary Hypertension News Posted: 24 Jan 2020 07:00 AM PST Since my pulmonary hypertension (PH) diagnosis, others have told me repeatedly how strong I am. But on some days, I don't feel as strong as they think I am. Even the strong grow weak and weary. But that doesn't mean I'm not strong as I battle my PH. I have my days, just like anyone else. Society tells us to be strong all the time. But I'm here to inform you that it's OK to not be OK! It has taken me years to acknowledge that, and even now I continue to work on it. When my daughter was a young child, I remember telling her, "Smile and the world smiles with you." But we quickly learned that this was not always the case. I should have taught her, "Cry and you cry alone." Dealing with a chronic illness like PH is tough. There are no rainbow sprinkles. I have days when I break. Yes, me. As a matter of fact, I often cry. Talking about these feelings and allowing my body to feel these emotions rather than holding it all in helps. Keeping feelings in and stopping myself from crying when I need to can wreak havoc on my mental health. Mental health is often relegated to the back burner as we go about our daily lives. Nevertheless, I think mental health is more in the spotlight now than it previously was. It used to be a somewhat taboo subject, something most people didn't want to discuss. Because I work in nursing, I know that many patients and their families felt uncomfortable when topics related to mental health came up. More often than not, they would change the subject. So, let's talk about it. Last year, I started seeing a therapist to help me find new ways to balance my life, along with coping mechanisms that work for me. She was shocked to learn that I was diagnosed with PH in 2005 and additional chronic illnesses in the following years. Now, she reminds me during each visit that I am dealing with more than most people, in addition to the normal stresses of daily life. Anyone would have difficulty balancing all of this. It is normal for people to feel sad. Sometimes life just sucks, and there is no other way to put it. Additionally, it is common to feel sad, frustrated, or anxious when you or a loved one is diagnosed with a life-threatening illness. While I continue to have bouts with my emotions, I attempt to move forward and focus on the positives as I realize that remaining in these difficult emotional states can be harmful. People living with chronic illnesses often have a higher chance of developing depression. According to the Cleveland Clinic, an estimated one-third of individuals who live with a serious medical condition have some symptoms of depression. Depression is more than just feeling sad or anxious; it is an illness that needs to be treated. The National Institute of Mental Health shares some common symptoms of depression. I tend to struggle with anxiety more often than with depression. But I realize that I do experience some of the symptoms of depression at times. Thankfully, it isn't a constant battle for me. Dr. Noah Greenspan discusses this topic in one of his podcasts. I think that you might find it useful to listen to. What coping mechanisms have you found helpful? Feel free to share in the comments below. *** Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension. × Latest Posts  | ||
| Posted: 23 Jan 2020 07:00 PM PST CLOSE  SAN DIEGO - Leah and Rob Davis never intended to create a kindness movement around their son Blake's diagnosis of pulmonary hypertension. But the rare condition of high blood pressure in the blood vessels that line the lung struck suddenly, with no warning. The couple's seemingly healthy boy lay unconscious in a bed at Rady Children's Hospital in San Diego, just days after he'd stopped breathing at a park near their house. Leah and Rob, who grew up in the Lansing area and graduated from East Lansing High School, watched as Blake, 1, lay listless, a tube down his throat helping him to breathe. "What can we do to help?" friends and family asked. "There wasn't something that would make it better," Leah Davis, 40, said. So they asked people to help them surround their child with positive energy. Go do good, the couple asked. Do it for Blake. At first "For Blake" was a Facebook page, a place where family and friends wrote about the random acts of kindness they'd done that day for Blake. Leah and Rob Davis sat inside their son's hospital room in those first few weeks reading the posts to Blake. They believed he could hear them. They read him stories about good deeds in honor of a little boy fighting a serious condition. In the months that followed #ForBlake became a hashtag used by strangers telling Blake's story to other strangers after a kind act. Blake died in December 2018, suffering a heart attack on the day his parent's learned he'd been added to a lung transplant list. Earlier this month the Davis family launched forblake.org, a website used to track and share the kindness Blake still inspires. The site, created to mark the anniversary of his death, catalogs the hundreds of good deeds people have done in his honor. They span 24 states and five countries. Kindness is now a way of life for the Davis family. #ForBlake is helping them to share it with the world. "It was a terrible chapter for us, but his death has also created this beautiful wave of light and love, of positivity," Leah said. "As terrible as our story is, we're so happy that we have that side of it. It keeps him and his legacy alive." A new normalRob Davis, 40, remembers watching Blake resist one July afternoon in 2017 as Leah strapped him into his car seat after an afternoon spent playing on the slide and swings with his sister Scarlett. His son didn't want to leave the park that day, Rob Davis said. He bucked, thrusting his hips forward as Leah secured him into the seat. Davis watched from the other side of the car, as he buckled Scarlett, then 3, into her seat. He remembers seeing Blake's head suddenly drop to his chest. His body went limp in an instant. "Is he breathing?" Rob asked Leah. Before that afternoon, the pulmonary hypertension Blake was born with had never showed itself to anyone. Blake was an active, happy little boy until he stopped breathing that day. What followed was a three-month hospital stay filled with moments of dread and discovery. The Davises watched Blake stop breathing more than once there. They also documented milestone moments, taking video of Blake sitting in a wagon flanked with medical equipment, the first time staff let him leave his room. JoAnn Perrault, Rob's mother, who flew from Michigan to California after Blake was hospitalized, said her grandson's diagnosis was a shock to everyone. "He was so full of energy and life," she said. "He never cried. He just adored life." When Blake left the hospital his family began to live a life filled with medical appointments and treatment. "We called it a new normal," Rob Davis said. As the Davis family learned to navigate that they embraced the #ForBlake movement, making good deeds a part of their life. A year after Blake's hospitalization they returned to the park where Blake had collapsed to hold a community event to collect 180 toys for Rady Children's Hospital. Rob Davis remembers how Blake never asked for a single toy they collected that day. "He understood it was for something bigger," he said. "We took it all to the hospital together. I like to think he had an understanding of what we were doing and why we were doing it." "This became our way of life," Leah Davis said. "It wasn't just everybody else doing it. We wanted to be doing good deeds to create good energy for him, so he was part of it." READ MORE: U-Haul proposes $10M renovation of vacant Kmart building Lansing area baker to compete on Food Network Anna's House coming to Meridian Twp. A legacyLife with pulmonary hypertension meant constant vigilance, said Rob Davis, but by December 2018 he said the couple felt like Blake had taken a turn toward better health. Then Blake suffered a heart attack after he'd stopped breathing in the family's living room. The Davis family didn't see it coming. "Life was normalizing for us," Leah Davis said. "We had gotten used to his medical management." Rob Davis said his son put his hand to his chest and said "Ow," before he stopped breathing. He ended up back at Rady Children's Hospital before being transported to Texas Children's Hospital. Leah and Rob Davis were in the room with their son when he died. In the wake of Blake's death, good deeds in his honor and use of the hashtag #ForBlake surged. At restaurants and drive-thru lines across the country, people paid it forward, picking up the tab for a stranger's meal or coffee order. Others planted trees in Blake's honor, or stopped to help a stranded motorist. They handed out gloves on busy street corners and donated to nonprofits in his name. Random acts of kindness came fast and furious, and were documented on the "For Blake" Facebook page, which now has 1,500 members. In the year since Blake's death the good deeds haven't stopped. "People have been a part of this movement from the beginning and after his death they doubled down on acts of his kindness in his memory," Leah Davis said through tears. "It became a flood." The website forblake.org went live Jan. 2. It offers a closer look at Blake's story and the hundreds of kind acts people have done in his honor. They are marked on a global map and visitors are encouraged to add their own good deeds. Blake has been honored throughout California, in Florida, Michigan and all along the east coast. The website offers downloadable "kindness cards" that can be printed out and handed out by anyone doing good. "Across the country and beyond is a movement of kindness born from the struggle of this little boy and his family," the cards read. "He recently received his angel wings, but the miracle of Blake has forever changed the world as we know it. Join the wave of positivity and pay it forward with your own good deed #ForBlake." The positive force that surrounded their son in his hospital bed more than two years ago is alive and well with #ForBlake, Leah Davis said. "He is actually continuing to make an impact," she said. "We do want to foster that because it keeps his spirit alive. We are hoping that it perpetuates, and that it builds in momentum. Everybody and anybody can join in. We are all so connected. We really ought to be treating each other better as humans." Learn moreLearn more about #ForBlake on Facebook at "For Blake," and at www.forblake.org, where anyone can document random acts of kindness in honor of Blake Davis. Contact Rachel Greco at rgreco@lsj.com. Follow her on Twitter @GrecoatLSJ. Read or Share this story: https://www.lansingstatejournal.com/story/news/local/2020/01/24/blake-global-kindness-movement-honors-east-lansing-natives-young-son/4540073002/  | ||
| Urinary NT-proBNP Has Potential as Biomarker for PH in Premature... - Pulmonary Hypertension News Posted: 24 Jan 2020 07:30 AM PST Measuring the levels of the N‐terminal pro B-type natriuretic peptide (NT-proBNP) — a validated and widely accepted prognostic marker of pulmonary hypertension (PH) — in the urine of babies born prematurely is feasible, and may facilitate the screening of PH, a study suggests. The study, "Urinary NT-proBNP as a potential noninvasive biomarker for screening of pulmonary hypertension in preterm infants: a pilot study," was published in the Journal of Perinatology. Bronchopulmonary dysplasia (BPD) is a lung disease that may compromise the survival and normal development of premature infants. Statistics indicate that 14–37% of babies with BPD develop PH, which is associated with increased morbidity and mortality. The diagnosis of PH usually is confirmed through a procedure called cardiac catheterization, in which a long and thin tube (catheter) is inserted into an artery or vein in the groin, neck or arm, and threaded through blood vessels until it reaches the heart to measure blood pressures. Because it is a highly invasive procedure, cardiac catheterization is not always feasible in infants. Consequently, non-invasive tests, such as echocardiograms (ECHO), usually are preferred. However, ECHOs also have limitations, including their cost, availability, and interpretation. Therefore, there is a need to identify biomarkers that allow for a timely diagnosis and management of PH in young infants. B-type natriuretic peptide (BNP) and its inactive version, known as NT-proBNP, are released from heart cells in response to heart strain. Recently, there has been increasing interest in exploring the utility of NT-proBNP as a screening tool for PH in preterm infants. In fact, some studies have demonstrated its diagnostic utility for both BPD and PH, with promising initial results. Now, researchers at Indiana University and the University of Texas Medical Branch conducted a pilot study to determine whether measuring the levels of NT-proBNP in urine samples of preterm very low birth weight (VLBW) newborns would be feasible, and if NT-proBNP could be used as a non-invasive biomarker for PH. The study included preterm infants who were born with less than 1,500 grams (about 3.3 pounds), and had less than 30 weeks of gestational age (the time elapsed since conception). Researchers performed urinary NT-proBNP measurements and ECHOs in infants at 28, 32, and 36 weeks of gestational age. A total of 36 infants were included in the final analysis of the study. From these, six had BPD and PH (BPD-PH group), 20 had BPD only (BPD group), and 10 showed no signs of having these disorders (control group). Results showed that the levels of NT-proBNP in urine were higher in infants from the BPD-PH group, compared to those from the BPD and control groups, at all time-points of gestational age. Using a cutoff value of 2,345 pg/ml for the levels of NT-proBNP in urine, investigators found that at 28 weeks of gestational age, NT-proBNP had a sensitivity of 83.3% and a specificity of 84.2% as a marker to identify infants with BPD-PH. At later time-points of gestational age, the sensitivity remained higher than 80%. (A cutoff value is a value over which a child would be diagnosed with PH; sensitivity refers to the ability of a test to correctly identify those who have a disease, while specificity is the ability to correctly identify those who do not have a disease.) Researchers also noted that there was a decreasing trend in urinary NT-proBNP levels over time, which was accompanied by a reduction in sensitivity and specificity. This potentially could mean that NT-proBNP levels are more sensitive at an earlier gestational age rather than later on. The researchers concluded: "Urinary NT-proBNP measurement is feasible in preterm infants, and appears to be a good noninvasive screening tool for PH." The team emphasized, however, that "further studies are needed to validate this work and identify any correlation between plasma [blood] and urinary levels of NT-proBNP for PH."  Iqra holds a MSc in Cellular and Molecular Medicine from the University of Ottawa in Ottawa, Canada. She also holds a BSc in Life Sciences from Queen's University in Kingston, Canada. Currently, she is completing a PhD in Laboratory Medicine and Pathobiology from the University of Toronto in Toronto, Canada. Her research has ranged from across various disease areas including Alzheimer's disease, myelodysplastic syndrome, bleeding disorders and rare pediatric brain tumors. × Iqra holds a MSc in Cellular and Molecular Medicine from the University of Ottawa in Ottawa, Canada. She also holds a BSc in Life Sciences from Queen's University in Kingston, Canada. Currently, she is completing a PhD in Laboratory Medicine and Pathobiology from the University of Toronto in Toronto, Canada. Her research has ranged from across various disease areas including Alzheimer's disease, myelodysplastic syndrome, bleeding disorders and rare pediatric brain tumors. Latest Posts  |
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