Chronic Lung Disease

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    Community Voices
    Community Voices

    For whoever needs to hear this.. #Lupus #Depression #ChronicIllness #ChronicLungDisease

    Not sure who said this but I loved it. "When a flashlight grows dim or quits working, do you just throw it away? Of course not. You change the batteries. When a person messes up or finds themselves in a dark place, do you cast them aside? Of course not! You help them change their batteries.
    Some need AA...attention and affection; some need AAA...attention, affection, and acceptance; some need C....compassion; some need D...direction. And if they still don’t seem to shine...simply sit with them quietly and share your light."
    Share with someone who needs to hear this.

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    Chris Karl

    The Power of Positivity: My Micro-Preemie

    I awoke into a nightmare. Ideally, and if given the option, I’d invariably choose to have it the other way around. Although subjectively unpleasant, I can at least grasp the concept of allowing my brain to play out its delusions of a menacing haunting or unnerving phobia while being safely tucked away in the realm of unconsciousness. Yet regardless of my desires, it was quickly becoming apparent that this was not going to be how my night would play out — the dreadful dream that I hoped I had arrived in was rapidly morphing into a full-blown reality. The lone light in the darkness emanated from our bathroom. It bounced off the walls and pierced my retinas. The exclusive soundtrack of the night was provided by my wife who composed a symphony of cries and sobs intertwined with panic-stricken screams. Blood and tears painted the stage and completed the scene as the smell of anguish solemnly lingered in the air. I knew what was happening; my awareness was heightened and crystal clear. Our biggest fears were coming to fruition. Still, I could not convince myself it was real. There was no way this could be happening to us. My daughter made her dramatic arrival into the world a few days later, but not before several long and stressful days in the hospital; not before various difficult discussions with doctors and other medical professionals. On that fateful June night, the placenta had ruptured which set this whole chain of events into motion. We were only 22-weeks along in the pregnancy. There were statistics and numbers thrown at us. There was an aura of negativity attempting to overtake our whole vibe —  it was insidious. The consensus was that of no hope for viability whatsoever if we could not make it to 23-weeks before giving birth, and even then, the outlook appeared grim. It was conveyed to us that even if our baby survived the rigors of birth at such a fragile stage, the likelihood of her experiencing a rather poor quality of life was imminent. There were choices to be made; hard choices; choices no person should ever be tasked with making, let alone about the fate of a child; their child. Yet no matter how difficult the circumstances, we held up our heads, stayed optimistic, and did everything within our control to provide and maintain an atmosphere of positivity to shine through those dark, stormy clouds. I paced nervously outside the operating room. I was not allowed inside due to the serious nature of the procedure. My wife had held our daughter in as long as she possibly could. We had narrowly passed the 23-week milestone and it was determined that the best course of action was to undergo an emergency C – section. The lives of both my wife and baby girl were now out of my hands and an overwhelming feeling of helplessness washed over me. I had to muster up some faith; faith that things would be as they were meant to be; I had to let go — and after a little back and forth battle in my head, I did so to the best of my ability. After what felt like an eternity, the doors to the operating room dramatically swung open and I laid eyes on my baby girl. Time stood still. She weighed in at a skosh over one pound and sprawled out from head to toe at only 12 inches long. She lay motionless inside a plastic bag — it was the only way to ensure her tiny body’s temperature would maintain itself. She had tubes shoved down her throat because she could not breathe on her own. There were cables and monitors and wires; there was medical jargon and incessant beeping and soul-shattering alarms. It was a blur — surreal. I got one good gaze at her, snapped a quick photo, and watched her fade into the distance as she was urgently whisked away in hopes to attain stability. She was out of sight just as quickly as she burst onto the scene and I stood there all alone once more. They were the most terrifyingly chaotic and beautiful moments of my life. It’s unnerving to think back on how my daughter’s health and well-being fluctuated from minute to minute in her fragile, little world. Reality had set in rather quickly for us and the weight of it all was overwhelmingly daunting. We never quite knew what the events of any given day would consist of. Every time we walked through the doors of the hospital it was a roll of the dice and as if that alone was not stressful enough, we were lamentably amidst the ever growing threat of the coronavirus pandemic. We had an extremely premature baby with the most fragile set of lungs born into a world where a novel, deadly lung disease had taken us all hostage. It was a recipe for disaster and we became no strangers to those utterly disastrous days. I recall one particular day early on most clearly of all. Shamefully and regrettably, I must admit, it was the only moment in the 133 day affair that I had marginally lost my faith. It had appeared as if we were gearing up for a decent day when suddenly the monitors in the room began frantically beeping and flashing uncontrollably. This was not uncommon, but slowly the atmosphere in the room started to become unsettled — we all felt it. The room swiftly filled with doctors and nurses. They were taking life-saving action, but conditions were not improving. They tried this and tried that, but nothing seemed to help. I instinctively knew her fight had now reached nothing less than that of a primal desire to survive — and she was nothing if not a survivor. We had started that morning with a decent report from the doctor’s on the status of her still-developing lungs — we were allegedly moving in the right direction. But suddenly and without a fraction of warning, both sides had given way to collapse and a team of medical professionals were manually pumping oxygen into her deflated lungs as a last ditch effort to keep the shade of purple she was rapidly turning from getting any darker. We were scared. We saw the same fear overcome her tiny little face for the first time … it came to life in her eyes and shot out in a burst of tiny daggers through our souls leaving permanent scars. The staff, however, was calm, cool, and collected. They carried out their mission without missing a beat. I just stood in the background with an awful case of conscious paralysis. I paced the hallway when it got to be too much. I could feel her struggle. I could not keep my eyes from periodically scanning over to the ever unstable and plummeting numbers displayed on those screens above her. At one point they recorded a 19 percent blood oxygen level. I could not have felt more helpless and lost; wondering how we all got here. Questioning why this is happening to us. But she continued to fight and although I was amidst my own crisis of faith, we all continued to believe in her strength. I just knew we had to make it through that day; we had to get through this journey together. Finally, after seemingly exhaustless hours of uncertainty, she started to pull through and we all finally took that deep and sought after sigh of relief. So despite days like these, we carried on. By day we sat by her side; by night we sat home and waited for the sun to re-emerge from its slumber. We tried to tame our racing thoughts and did our best to sleep. We awoke in the middle of the night to nauseating anxiety. Our hearts skipped a beat every time the phone rang. We physically lost touch with our support system. Due to the coronavirus pandemic and its complex uncertainties, we had no choice but to isolate ourselves from family and friends. Our village had been forcibly transformed into a virtual reality and her nurses became our stand-in family. Throughout the entire ordeal, we became the opposition to a plethora of immense challenges. To kick things off, her lungs were severely under-developed and she was essentially diagnosed with chronic lung disease before even exiting the womb. Next, we faced a condition called Patent Ductus Arteriosus (PDA). This is basically an opening between two blood vessels in the heart. In utero, it is a normal part of fetal blood flow and it should naturally close after birth. In my daughter’s case, it did not due to the severe nature of her prematurity. The main concern of this opening was the passage of too much blood into her lungs which caused excess fluid build up. As one could imagine, that made it much more difficult for my baby girl to breathe without becoming overly exhausted, even with the support of a ventilator. We were up against a condition known as Retinopathy of Prematurity which presented an immediate threat of blindness. She required a specialized laser surgery which involved a transfer to a new hospital. We uprooted our lives for over two weeks and accompanied her on the pilgrimage to an entirely foreign environment for the procedure. We overcame the period of time her kidneys shut down and the only hope for recovery was through a rigid steroid regimen that threw her blood pressure completely out of whack. She powered through brain bleeds which had the ability to cause long-term neurological damage. This list goes on. So did we. No matter how bad the news or dire the situation, we stopped any negative energy from coming through the door of her intensive care unit. We did not allow discussions with the doctors to occur anywhere near her, unless it was of a positive nature. We left our fears and doubts and uncertainties in the parking lot. We read to her. We talked to her. We cheered her on. We laughed and joked. We celebrated the milestones. We believed in the power of positivity. We embodied that whole vibe in hopes to invigorate her courageous little spirit. I genuinely believe it made a world of difference. After 133 days in intensive care and after beginning her life in such an intense battle for survival, we finally reached the coveted day of discharge. My daughter had defied the odds and earned herself the ability to come home on only a few medications and an oxygen concentrator. The oxygen was relatively quickly discontinued after a couple months and she now breathes completely on her own. She is also entirely medication free as of recently and thrives as a strong and healthy 1-year-old; we celebrated her first birthday surrounded by all our family and friends at a local park. We could not be more proud of her accomplishments. She fought and continues to fight for this beautiful experience of life – preordained to pursue and fulfill her dreams. She inspires me to wake up and fight alongside her. She teaches me the authentic meaning of courage. She embodies bravery. She effectuates a fiery brightness to the coldest, darkest aspects of my world. She makes me better; complete. She is my daughter. She is mighty. Follow this author at

    Community Voices

    Work life balance, when your work is your life.

    <p>Work life balance, when your work is your life.</p>
    Maria Dillon

    The Impact of COVID Beyond the Virus in New Zealand

    When word of COVID first started filtering through, I had a holiday planned in Australia with my lovely sister. We paused momentarily, and thought about the fast spreading virus in China that was just beginning to have an impact in Italy. It was awful, it was scary, and it wasn’t here. It was an “over there” issue that we didn’t need to be concerned about. So early in 2020, we packed our bags, got up horribly early, checked ourselves through security at the airport, and boarded a plane to Australia. All so very normal and mundane; it never occurred to me that air travel was soon to be decimated by a pandemic, and life as we knew it would change forever. When COVID first landed in New Zealand a few months later, I felt the fear, and ended up hiding out at home a few weeks before the country went into lockdown. I have chronic lung disease, and a respiratory pandemic is the thing of nightmares for me. As history will show, the team of 5 million in New Zealand got in behind lockdown restrictions and we managed to stamp out the alpha variant, and went on to live relatively normal lives, behind closed borders. Stamping out alpha gave us the gift of time for vaccines to be developed, and a vaccine rollout plan to be established. I think we became a little immune to the impact of the pandemic in other countries; we weren’t feeling its bite in our families and friends, nor were we seeing exhausted doctors and nurses fighting a seemingly losing battle to keep people alive. When delta arrived, as much as we all tried to sing from the same hymn book, we were becoming more discordant. The murmurings of dissent grew louder, as it became apparent there were people who would choose not to be vaccinated. Their body, their choice. With the spread of delta as a strong incentive, vaccination rates climbed steadily, and that 90 percent target was looking more and more possible. The murmurings grew louder still as talk of mandates came in, and people who chose not to be vaccinated had another choice with “no jab, no job.” And now, here we are: sitting on the precipice where vaccine passports are about to take effect, giving the vaccinated an echo back of our “normal” lives, provided we leave our unvaccinated friends and family at home. Those who choose not to be vaccinated are being pushed into a smaller box, with their “new normal” more restricted and isolated, where freedom of choice is becoming a punishment. I feel for them, the soon to be segregated 10 percent who choose not to be vaccinated. I am still afraid of the virus and worry how my lungs would cope: I’m ready for it though, no more lockdowns, let it spread. I am putting a lot of faith behind our very-nearly 90 percent vaccination levels. I’m more afraid of the impact that segregating a minority of people exercising their right of freedom of choice will have on our nation. Its impact is being felt already in families, between friends and in neighborhoods, where once solid bonds are beginning to feel shaky and unsure. It feels as though the impact of freedom of choice could change us in a more granular and permanent way than the COVID virus ever could. This brave new world we are living in is going to rely on a lot of grace and hope and respect, to enable us to cross the COVID divide. Am I up for it? Can I think about that?

    AK Yu

    A Research-Based Look at Chronic Health Problems Associated With COVID

    The Insidious Hit and Run Imagine that you’re young, healthy and headed back to school. Crisp autumn weather gains ground against the retreating heat of summer. The turn of the seasons ushers in the excitement of a fresh chapter ahead: a tabula rasa of undiscovered potential, hinting at a promising future of achievement, fulfillment and delight. You’re fired up for what’s in store. For regardless of whatever is happening in the world out there, your rich reservoir of inner resolve has proven reliable through any adversity. You’ve got your eye on the prize: top degree program, stable career, beautiful family. One month passes. Suddenly, your laser-sharp focus is derailed by a sore throat. It’s quickly swallowed by congestion, which turns into a fever, which turns into body aches, which turns into debilitating fatigue. “Damnit,” you think. “Now is not the time, with exam week around the corner!” You do your best to study through the weekend; but the material doesn’t stick in your head like it normally would. You end up needing to spend most of the time in bed instead. “This is just one of those nasty colds,” you tell yourself. “I’m sure I’ll bounce back in a few days.” Annoyed but undaunted, you drag yourself to class the next week and manage to attain acceptable grades. The worst of your symptoms fade away, and you find yourself back at the top of your game by the time the next set of exams roll around. Or so it appears. On paper, you achieve top grades and the semester concludes well. But your inner state tells a different story. In fact, your mind is barely functioning and your body is ready to collapse with exhaustion. A blanket of darkness descends upon you, crumpling your spirit under the weight of uncertainty and fear. When will this sickness ever end? Months later, it would become clear that this was just the beginning: the viral prodrome that would portend the troublesome future to come. From Picture-Perfect Health, to Chronic Illness Nightmare This is the story of how my autoimmune illness, encephalitis, began. But it could just as easily be the story of the coronavirus (COVID-19) in a fit, bright, dynamic student in the upcoming school year. Despite my healthy lifestyle, my immune system took a sharp turn from its normal 21 year course into the territory of chronic dysregulation. The flu-like symptoms gradually worked themselves out, but my memory problems persisted. This started in my fifth semester of university and remains a difficulty to this day, six years on. I cannot emphasize enough: this is not your garden variety “brain fog.” You know, the one where you might have gotten too little sleep, treated yourself to a cheat day at the bakery, taken certain medications or let emotional stress run away on you. Over time, my symptoms deepened to include significant verbal fluency issues, executive functioning problems, slowed processing speed, impaired reasoning and attention deficits. This is a level of cognitive dysfunction that led to me going from a high-functioning, award-winning scholarship student, to a university dropout who once needed five days to clean her barely disheveled bedroom. What?! That sounds ludicrous, yes. Even my first instinct right now (in an improved state) is to think that must be exaggeration. But I kid you not. Think it through for a moment. Laziness or procrastination aside, what kind of cognitive state would you need to be in to have to devote an entire day of your life—let alone five—to the sole purpose of cleaning a bedroom, one that should take a normal person less than 30 minutes to tidy? Consider your (in)ability to maintain goal-directed behavior, create a basic set of mental instructions for your body to follow through, categorize objects in your head and initiate basic physical actions that most humans can put on autopilot (moving your arms, grasping objects). Now extrapolate that level of mental capacity to what it must have been like to accomplish the normal activities of human existence—learning, planning, cooking, grocery shopping, working. Trust me, this level of dysfunction is not something you want to experience firsthand. You go through a deep level of excruciating agony that can easily strip you of your sense of humanity as you lose basic control of your mind and actions. On top of that, add the mental anguish of seeing multiple doctors that don’t know how to help you, continual deterioration and the unknown of if and when you’ll ever be functional again. All of this is to say: there’s an accelerating virus out there—one that may seem relatively benign—that can cause the same devastating, long-term impacts as what I’ve just described. COVID-19 has been shown to cause encephalitis, as well as dementia-like symptoms and psychosis, in those in their 20s, 30s and 40s. And I’ve just illustrated how this could derail the course of your entire life. Normally, there’s no point in living with this fear. There’s not much you can do to avoid developing autoimmune encephalitis, and improved physician awareness and treatments are slowly leading to better patient outcomes. It’s estimated that at least 500,000 people worldwide are diagnosed with this disease of brain inflammation each year, many of which were otherwise healthy individuals. There’s just something that causes their immune system to go amuck. It could be a wide variety of infectious triggers (viral, bacterial) or the presence of an idiopathic teratoma (a type of tumor), but in most cases there is no discernible cause. However, these are highly abnormal times. We’re in the midst of a serious pandemic. And it is leaving devastating, long-term effects on a nontrivial number of average, everyday people. Before you dismiss the threats of the coronavirus because you consider yourself healthy, young, strong or somehow immune to severe sickness, please educate yourself about the risks of actually contracting COVID-19 or spreading it to someone in your circle. Coronavirus “Recovery” Doesn’t Mean What Most People Think It Means There’s more to the picture than confirmed cases, “recoveries” and deaths. COVID-19 statistics fail to capture the prolonged convalescence, ongoing gastrointestinal issues, debilitating fatigue, sustained organ damage and other worrisome sequelae that some survivors battle, for greater than the two week recovery timeline commonly suggested. “Fine. Maybe I’m one of those unlucky ones, or have to spend some time in the hospital, or miss a month of work; but I’m extremely unlikely to die” you might say. Oh, if only that were the end of the story. A crude estimate in the British Medical Journal suggests that one in 10 people who contract the coronavirus sustain significant symptoms three months into the illness, left with the uncertainty of whether they will regain their previous level of function. Evidence is mounting to suggest that many will endure years of major burden and healthcare expenditures. Reports of lung scarring (according to the National Center for Biotechnology Information, BBC News, New Scientist), kidney issues (Hopkins Medicine, AJMC, PBS), heart damage (The Harvard Gazette, Kaiser Health News, Penn Medicine), neurological disturbances (The Lancet, BBC News, MedPage Today) and other serious, ongoing health complications—across all ages and including those without underlying health issues—are being described with increasing incidence. It has become clear that no demographic is immune. We’re all susceptible to the possibility of several months (or years) of rehabilitation, decreased functioning, chronic medication, or monitoring. Skim this article from Vox on long-term symptoms, one from The Atlantic, and this one from BBC News if you’re not unnerved yet. Even still, you might be tempted to think, “how can we really know the long-term trajectory, if this virus has only been around for half a year?” Well, we don’t. Not with absolute certainty. But organs aren’t invincible, renewable resources that can be depended on to miraculously recuperate from internal assault. Bodies can only handle so much before permanent damage occurs. Plus, the impacts of other viruses provide precedent. The coronavirus responsible for the 2003 SARS outbreak left some patients with chronic lung disease, kidney disease, bone consequences and psychiatric illness years later (Jama Internal Medicine, Nature, American Lung Association). The coronavirus responsible for MERS, first reported in 2012, is known to cause long-term respiratory complications (Open Forum Infectious Diseases). Post-Ebola syndrome—involving symptoms that include headache, joint and muscle pain, extreme fatigue, menstrual cessation, clouded vision, hair loss and deafness—has in some studies been estimated to affect > 90 percent of those who survived the 2014 Ebola virus (BioMed Research International). Myalgic encephalomyelitis (sometimes called chronic fatigue syndrome) causes bed-confining exhaustion, cognitive problems and musculoskeletal weakness, rendering many patients struggling with quality of life (CDC). It’s often preceded by a variety of viral triggers (The Lancet). While plenty of COVID-19 unknowns remain, and research remains in its infancy, our current knowledge of past and present viruses provide ample cause for present-day concern. Everyone should be taking serious steps to avoid contracting and spreading the virus. There’s only so much that cutting-edge research and world-class physicians can do should you struggle with a complication arising from COVID-19. My Chronic Illness Nightmare Doesn’t Need to Become Your Coronavirus Reality Maybe you remain a skeptic. Or maybe the evidence and data points above are too abstract to internalize in a personal way. Let’s get back to my story of autoimmune encephalitis and its enduring neuropsychiatric symptoms. With a bright future ahead of me, no underlying health issues and the onset of a mysterious virus, I found myself suddenly sidelined from what would turn out to be most of my 20s. Thankfully, I’m better now—sort of. It took me five years to finally find stability at my baseline level of functioning; currently I’m in recovery from an encephalitis relapse. But at least I don’t require anywhere close to five days to clean my bedroom anymore. Still, I’m left to wonder where I would be had I finished university and been able to establish a stable career. Instead, I lost prime years of my life laying sideways in bed. I went from being independent and self-reliant, to needing external direction to complete basic daily activities. I endured the awkwardness of needing to drop out of my competitive degree program a second time, after miscalculating the stability of my health and begging for readmission months after I dropped out the first time. Thankfully, I’ve had my mom support me through my darkest times. But I’m also embarrassed I’ve needed to rely on her and my dad to pay thousands of dollars in medical bills. The sad part is that variations of this story are shared by millions of chronic illness patients in the U.S. alone. My personal lowlights are not a freak anomaly—they’re actually pretty standard in the encephalitis community. And as I’ve mentioned earlier, evidence is piling up that serious neurological manifestations, including encephalitis, are occurring in a scattered subset of COVID-19 patients. The CoroNerve Studies Group, comprised of researchers throughout the UK, is actively collecting case reports of COVID-19 patients with neurological symptoms. They’ve recently published an article in the Lancet Psychiatry, with a 125 person dataset that reveals 75 percent experienced an ischaemic stroke, and 31 percent exhibited an altered mental status. One author, Dr. Benedict Michael, states, “whilst an altered mental state was being reported by some clinicians, we were surprised to identify quite so many cases, particularly in younger patients, and by the breadth of clinical syndromes ranging from brain inflammation (encephalitis) through to psychosis and catatonia.” Similarly concerning findings have been reported in the New England Journal of Medicine. And with concerns voiced by scores of treating physicians in centers around the world, more groups are coordinating global efforts to formally characterize COVID-19’s neurological impacts (Daily Mail, Neurocrit Care). Please take it from someone who’s been through the wringer, with these types of debilitating neurological symptoms, for years on end: don’t subject yourself or others to unnecessary COVID-19 exposure. Throwing caution to the wind isn’t worth it when the consequences include lasting pain and suffering either to yourself or someone in your community. Will You Mask Up Against Coronavirus, Please? “Let us know if there is anything we can do to help.” This is a common refrain my mom heard from friends, family, neighbors and colleagues when she told them of my encephalitis hospitalization. You’ve probably heard or said it in your encounters with illness, too. Well, in this time where teamwork within and across communities is needed more than ever, mask up! Keep your physical distance! Wash your hands! Don’t be the person who offers empty pleasantries to your social circle, then sidesteps social courtesy at the hint of personal inconvenience. This time ’round, with COVID-19 spreading rapidly, your personal choices are the difference between life, death or contributing to years of someone struggling with chronic illness. The coronavirus is not just impacting the elderly, immunocompromised or those with underlying health conditions. Dismiss it and you’re spinning a dangerous roulette wheel, with little assurance of keeping the healthy people you love out of harm’s way. Imagine watching your brother, who was always at the gym, barely able to make it up his flight of apartment stairs. Or your smart kid drop out of school, losing their spot in a prestigious degree program they worked so hard to get into. Or your young partner gives up their stable job because they can no longer access their keen intellect. Especially in a scenario where these outcomes are largely preventable—like they are now—you’d probably be indignant. The reality is that the risk of disastrous, life-altering consequences escalates each day we ignore the insidious nature of COVID-19. So respect your body, and respect others. Wash your hands, watch your distance and wear a mask. Especially the last one. Unless a health condition prevents you from being able to do so, please wear a mask! Even if you’re asymptomatic, you can still spread the virus (Science Magazine). Short of strict self-quarantine, wearing a mask has proven to be the most effective precaution we know in reducing coronavirus transmission (UCSF). A recent analysis found that “in countries with cultural norms or government policies supporting public mask-wearing, per-capita coronavirus mortality increased on average by just 8.0 percent each week, as compared with 54 percent each week in remaining countries.” Think of the tens of thousands more that could be spared from developing chronic health problems. To conclude, I hope you’ll decide to play the long game with me—not the short one. Like it or not, we’re fighting the coronavirus together. Follow this journey on Where Are My Pillows

    Community Voices
    Community Voices

    We’re not disabled, rather well-abled! ❤️ 🙌

    <p>We’re not disabled, rather well-abled! ❤️ 🙌</p>
    1 person is talking about this
    Community Voices

    Who feels like nothing ever goes right ?

    After years of dealing with a daughter’s mental illness / drug use , was diagnosed with a chronic lung disease and smoldering multiple myeloma. These diagnoses threw me into MDD with PTSD. Have been on numerous antidepressants , and last summer tried TMS which helped minimally. So terrified of covid which is making me so much more depressed. Who can relate ? I appreciate any support that is offered. I feel like bad things keep happening, despite all my effort.

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    Community Voices
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