Real-world evidence (RWE) captures health data from outside controlled clinical trials, such as wearable devices, patient forums, electronic health records, and symptom tracking apps. It reflects the daily realities of individuals managing chronic conditions, navigating medications, and seeking answers when the system fails to provide clarity.

As Yael Elish, one of the founders of the mega crowdsourcing transportation platform WAZE and now CEO and Founder of the patient RWE platform StuffThatWorks, has said, “Patients will never have a seat at the table until their data is considered part of the navigational guide for new medicines, devices, and indications of use.”

She’s right, but perhaps we must push ourselves to a new level of acknowledging why we are pursuing new approaches to care. This is not just about offering patients a seat at the allegorical table. It’s about acknowledging that the table of discovery and development exists for their benefit. The science, systems, and research all exist to serve their needs. Their voices and their lived experiences must inform the path forward.

A Silent Majority Speaks: The Data We Ignore

A recent survey conducted by StuffThatWorks, which gathered insights from more than 15,000 patients across 145 medical conditions, revealed a staggering disconnect. 92% of patients expressed a willingness to participate in clinical trials. Yet, 84% said they had never been asked, never invited to the table of health innovation.

This isn’t a communications oversight—it’s a justice issue. The system is failing those it claims to serve. Patients are ready to contribute. Some are out of options and want concrete action steps. They are waiting to be seen, heard, and engaged. Their personal care and experiential data they offer doesn’t just enrich our understanding—it recalibrates it.

“The Pharma Industry’s efforts to include patient voices have been a step in the right direction; however, they remain on a very small scale today,” notes Caroline Redeker, chief strategy officer at Advanced Clinical, a leading clinical research organization. “Interacting with a minimal number of patients without scale does not accurately represent the full patient population with the condition.  Using available static data (claims, EMR) detached from the patient covers the ‘what’ of patients – how many, where, with claims or treatments of a condition, and mostly in the US.”  

Redeker adds: “The more important factors in trial design include the ‘why,’ including most bothersome symptoms, effectiveness of treatments, regional differences, comorbidity considerations, and other valuable information to accurately design the right trial.  The ‘why’ information can only come directly from the patients.  The future will bring patients and their organized data to the table and include patient insights from all over the globe.”

Real-World Realities: Lessons from Ehlers-Danlos Syndrome

Consider Ehlers-Danlos Syndrome (EDS), a connective tissue disorder with 13 recognized subtypes, ranging from the more common hypermobile form to the rare, life-threatening vascular subtype. Each type carries a distinct constellation of symptoms and risks. Some people face chronic dislocations and mobility challenges, while others live with the daily fear of spontaneous organ rupture.

A single disease name masks and encompasses a spectrum of experiences. Standard clinical trial models often can’t keep up with that complexity. But thousands of patients with EDS are documenting their treatment responses, flares, and management strategies across RWE platforms such as StuffThatWorks—building a picture of this disease that’s as varied, inclusive and individualized as the people living with it.

“The StuffThatWorks survey expands the usual definition of real-world data to include this novel direct patient-inputted database,” says George Sands, MD, FAAN, FAHA, FACC, a former senior director at Pfizer and noted advocate for collaborating with patient communities  “Patients and patient advocacy groups want to partner with sponsors, whether pharma or academia, and to be fully represented in research endeavors. This is very different from sponsors looking to recruit and retain research participants more fully. This is about collaborating.” 

Dr. Sands adds, “Additionally, it is important to have all different patient populations, including people of color, so their data is included in the trials and can be used for clinical care. Otherwise, clinicians have to extrapolate based on those included in the trials; it doesn’t always work exactly.” 

That kind of data, born of day-to-day life, isn’t just complementary to clinical trials. It completes a fuller picture essential for developing effective treatments. Without it, we risk designing therapies that help in theory but fail in practice.

From Inside-Out to Outside-In

Much of medicine’s traditional approach to research is inside-out, starting with what companies aim to prove and working outward through the trial process. That’s not inherently wrong—it is how rigorous science is structured—but that is not enough.

We must also embrace outside-in realities as part of the innovation journey, where patients’ lived experiences inform what we explore, how we measure success, and who we prioritize.

Craig Lipset, founder of Clinical Innovation Partners, and co-chair of the unifying NGO/research industry Decentralized Trials & Research Alliance, and former Head of Clinical Innovation at Pfizer, has long championed a rebalancing of power in clinical trials.

“To earn and maintain trust, research participation must become a symbiotic relationship powered by a bidirectional flow of data and learnings, says Lipset. As patients share insight into study design, bring real-world data into trials, and share experience that shapes new endpoints, sponsors must commit to ensuring that study data and results are flowing back.”

That vision is becoming increasingly possible. With technologies that enable decentralized trials, remote monitoring, and electronic patient-reported outcomes, we can now collect real-world data at scale. However, that only matters if we respect what the data tells us and are willing to let patient experiences guide the research agenda. We give lip service to the importance of patient voice in biopharma research and marketing, but do we see them as “customers” of innovation?

The Science of Listening

Real-world evidence is the patient’s language—a narrative built not in labs but in lived experience. It’s not peripheral to science—it is science when equity is the goal. When patients share their stories, whether on online platforms, through wearables, or in digital symptom trackers, they are offering far more than an anecdote. They are offering insight. They contribute to the science of what works, for whom, and under what conditions.

And when we listen, we don’t just become better researchers. We become better healers.

We stand at a pivotal moment. Innovation can either deepen the divide between patients and science or bridge it. Real-world evidence is the support structure for that bridge. It offers us the opportunity to democratize discovery and reimagine research collectively.

Reflects StuffThatWorks Elish, “The current methods of involving patients in the clinical and health spaces are doomed to failure.  Patients’ voice will be heard ONLY when turned into organized data, at scale.  Because no one can argue or ignore organized data at scale. Once that’s accomplished, the integration of patient voice will proliferate and become easily accessible to everyone in multiple forms, including a simple AI-based chat question.  We are doing that at StuffThatWorks; it’s core to our mission and vision.” 

Ultimately, the patient wants to be invited to the table—but not as a token guest. Without them, there is no table worth setting. The patient is not a peripheral player in this system—they are the system’s purpose. They are not guests in the system. They may not be the core customer of the health system, a universe that centers around its economic viability. Still, in the world of health system kinetics, where we examine the relationship and priority of the sector pieces, they are the reason we unite to invent solutions to confront disease, despair and death.  And the future of medicine depends on how well we recognize that truth.

The future of medicine hinges on one choice—do we continue treating patients as passive subjects, or as co-creators of the care that might save their lives? That’s not philosophy. That’s leadership.

Interested in this topic – here is more to explore:

Aman Gupta: Patient Inclusivity: The Missing Piece In Pharma’s Global Innovation Strategy

The Need for High Quality, Reliable Information that is Data-Driven – A Conversation with Yael Elish

Gil Bashe: Real-World Evidence Unlocks Consumer Voice to Improve Care

The post How Real-World Evidence Proves the Power of Patient Engagement appeared first on Medika Life.

As communication leaders and health executives, we must confront an uncomfortable truth: A significant segment of the American public harbors deep-seated resentment and frustration toward us. Some view Thompson’s murder with a sense of bizarre satisfaction, a stark indicator of how broken the relationship is between those who seek healing and the entities that are pledged to heal.

Despite its role in driving unmatched technological and scientific advancements and its world-class roster of skilled and dedicated professionals, the American health ecosystem is increasingly frustrating for patients who are constantly challenged to access and pay for care. A 2022 KFF survey revealed that 41 percent of Americans carry some form of healthcare debt. This statistic paints a grim picture of household pocketbooks emptied because of poor coverage and high costs.

That’s only the tip of the iceberg. Even those with private and employer-sponsored insurance face a labyrinth of frustrations. High premiums strain household budgets, pushing some into medical poverty. Costly co-payments discourage those who need it from seeking preventive care. Confusing coverage rulings, such as step-through therapy or non-medical switching, are deeply frustrating and leave many who need medications in limbo. Seemingly arbitrary denials of care, which are devastating to cope with when fighting serious illness, provide life’s most stressful moments.

The outcome? There’s a growing body of consumers who feel they’ve been abandoned by a system meant to protect them, a system that they pay a significant amount of every paycheck to support, that will not support them when needed. The contract, in their experience, has been broken. When coverage denials arise and bills pile up, people with illnesses often find themselves at the mercy of collection agencies, adding frightening financial insult to physical injury and illness.

A public cry for systemic change

The view of the shooter as a folk hero reflects the public’s deep frustration with a system that makes managing care, accessing services and understanding payment obligations needlessly complex. This is leading to a significant shift in public opinion; a recent Gallup poll indicates a substantial upswing in support for government-insured universal health coverage, which suggests that Americans have an appetite for a radical overhaul of our health system. The industry must recognize that public outcry is kindling fires that fuel changes in public policy.

In the health industry, we often claim that the patient is at the center of care; that naïve Band-Aid should be ripped off. The public reaction to Thompson’s death provides us with an essential opportunity to recognize that we have lost the trust of many of the people we supposedly serve. It must be a catalyst for health companies—innovators and insurers—to reassess their approach to patient care and public trust.

Profitability and service to the patient aren’t two separate outcomes. Investing in interventional care and providing that care are also inextricably intertwined. There are several key recommendations the industry should consider at this moment:

Prioritize transparency: Simplify policy language and coverage explanations, which currently make it difficult for patients to understand their insurance and impossible to make decisions about their care. They feel the ground is shifting under their feet, so make it clear what is covered and why specific treatments might be denied.

Enhance the customer experience: Invest in solid support systems that guide patients through the complexities of their care options. How can apparel chains like Nordstrom have better customer service than the health industry? Shouldn’t our bodies be entitled to a level of customer service that is at least the equivalent to that of the companies that clothe us? Insurance companies must recognize that customer service is one of the most important parts of their business and not an afterthought.

Embrace preventive care: Our system prioritizes sick care over healthcare. To promote better health—while helping to keep insurance company and patient costs lower—it’s time to shift focus from stressful reactive treatment to supporting proactive health management. This can improve patient outcomes, keep people from suffering from progressive illnesses and reduce long-term costs.

Advocate for systemic reform: Health is not a partisan issue, and the industry must work proactively with patients and policymakers to address the root causes of health inequality and inaccessibility. We can make social impact an integral part of our business models and channel a percentage of profit to address health equity challenges that cost the most vulnerable right now and will cost the industry and taxpayers significantly further down the road.

Humanize the industry: Communications is part of the cure, and health companies, particularly insurance companies, can and must do better when sharing information and narratives with patients. We must share stories—within HIPPA guidelines—of how lives can be improved and saved, and we must do so regularly, not only when the industry’s reputation is threatened. Take the time to speak to patients, communicate how things work and build trust.

Communication as a bridge to trust

As communication professionals, we have a crucial role in this transformation. Our task must not simply be about defending reputations. We are responsible for facilitating a dialogue between health providers and the public they serve.

To do this, we must craft narratives that emphasize the human element of healthcare and facilitate forums for patients to voice their concerns and to be heard to foster fruitful discussion. Our communications expertise should not simply be leveraged to highlight initiatives that demonstrate a company’s commitment to putting patients first; it must be employed to educate the public on how to navigate the complexities of health delivery, to advocate for simplification of communications and to executive information campaigns that help patients to access the care they must have.

A new vision for the American health system

Brian Thompson’s murder is a tragedy that should never have occurred. There’s no justification for violence. At the same time, we must not let this moment pass without reflection and action.

It’s time for the health industry to recommit to its core mission: to prevent illness and to heal. This commitment must be more than a PR strategy. It must be the driving force behind every policy, every customer interaction and every decision. By placing people at the center of our efforts, we demonstrate that the US health system’s primary interest is in the well-being of those it serves.

The path ahead is challenging; we must walk it together—industry leaders, health providers, life science innovators, policymakers and patients alike. As we move forward, we in the industry must note that healing extends beyond the physical; it encompasses the restoration of faith in a system that has the great potential to protect and nurture all Americans, regardless of their location and bank account size—one that inspires confidence rather than despair and rage.

It’s time for the industry to lead by example, to show through deeds that the health and trust of the American people are its most valuable assets. Only through collective effort and a shared vision centered on ensuring “medicine is for the people” can we achieve that long-awaited transformation. Thompson’s tragic death—and his family’s enduring pain—must be a catalyst for that transformation. It’s not about saving face; it’s about saving lives and restoring the soul of the American health system.

The post A Shock to the U.S. Health Industry appeared first on Medika Life.

The McCormick Conference Center has enthusiastic attendees, filling session rooms and the exhibit hall.  But the meeting’s focus and content – along with the recognition that the pandemic and economy require new thinking and approaches to health information and health-tech innovation.  What HIMSS lacks in meeting SWAG, it more than makes up for in nuts-and-bolts content on integrating bold ideas and new inventions into the healthcare system.  That’s its differentiator in a sector that seems to be adding more and more gatherings.

SESSION ROOMS ARE FILLED – WHY? ATTENDEES SEEK TO LEARN AND APPLY!

How does HIMSS plan its content sessions – which are peer-review selected – through the tireless work of its staff and volunteers who pour over countless (and largely excellent) submissions to drill down to the hundreds that reach the program.  Despite the number of concurrent sessions, the rooms are packed, reinforcing why people come to HIMSS23 – to listen and learn!

PROBLEMS AND SOLUTIONS!

For years, people in the health sector have talked about its growing fragmentation.  As fast as companies invent new information systems and technologies, new problems arise with integration and security.  The puzzle pieces are proliferating but have yet to bring the ecosystem closer. Health professional burnout has been the constant refrain from physicians and the COVID staff drop-out rate has been as alarming as the alert bells pinging at nursing stations.

The tone and content at HIMSS23 reflected the need to stop concentrating on the problems and new ideas and center around solutions.  Keynotes such as Tom Lawry, a long-time Microsoft AI leader and now a “recovering alum,” and John Whyte, MD, chief medical officer of WebMD, led and moderated sessions that shifted to the practical use of information in the care setting. Not new ideas but how to better leverage and apply tools to improve workflow and patient care.

The meeting was also more global in perspective.  For example, Whyte’s session on the Quest for the Perfect Healthcare System – How Do We Get There? Wisely compared the UK’s favored National Health System to the “highly remunerated USA system and everything in between.” There is a hunger to use HIMSS as a pathway to better (best is far off) practices. At the same time, Lawry brought leading minds in AI together from health systems that employ the tool to reach patients most at risk and shift their attention from sick care to deploying preventive health care.

THE HIMSS EXHIBIT FLOOR FOCUSES ON PRACTICAL SOLUTIONS

The exhibit floor has been packed wall-to-wall with booths that are as educational as the sessions themselves.  Many of the breaking ideas in the news – some that justifiably frighten society, such as AI and ChatGPT – showed their more practical, life-saving side.  While health and home and wearables that collect and transmit personal information become the new doctor’s black bag, some companies exhibiting are seeking to resolve problems that should keep us up at night, such as cybersecurity and data protection.

Here are some of the hundreds of companies exhibiting that caught my eye. Others should explore what others in the sectors are doing to make new ideas and inventions into practical (and necessary) tools to leverage current systems.

FORGET THE AI AND CHATGPT BUZZ – COMPANIES ARE DELIVERING SOLUTIONS NOW

Health at home is less expensive and preferred.  But can it work with people with more serious medical needs?  ATLASense provides ICU-level monitoring in the home; it is wireless and simulates the predictive capabilities of an attentive onsite nurse. Using 15 sensors and measuring 50 biomarkers, it’s a small, wearable medical device that is reusable. The data flow to health professionals overseeing care offers a pathway to send people from acute care to a place that supports healing.  

Patients must be part of the care conversation.  That has long been the mantra of the patent community and has recently been acknowledged by drug development and payer systems.  Belong Life is among the world’s more extensive patient navigation and social networks for cancer and multiple sclerosis (MS) patients. The platform is used by nearly 1 in 10 cancer patients and 1 in 5 MS patients.

What’s new is its AI Mentor and ChatGPT patient system. The company – driven by compassion and confidentiality – has a model that makes a virtual community practical for people with these serious health concerns. With this new AI effort, Contract Research Organizations and their pharma sponsors should take note of a pathway to better understand what people need and want.

The Internet of Medical Things (IoMT) describes the network of physical objects — “medical things”— embedded with sensors, software and other technologies.  Today, devices are found within 75% of connected assets in hospital systems.  These technologies are a boost to patient convenience and provider care.  And they pose a great cybersecurity danger – a real medical risk to patients.  Hospitals are notoriously vulnerable to hacking. 

IoMT is an easy target for cyber attackers and is among the more worrisome unaddressed cybersecurity risks to medical networks.  Cylera is becoming a global go-to partner to guard against these clear and present dangers using forms of AI and to create a digital twin that assesses IoMT devices to remediate discovered risks.

Health systems are experiencing a challenging financial year – even shuttering doors in remote areas where care is desperately needed. Predictions are that only “must-have” technologies will be considered going forward. Given this backdrop, HIMSS23 conversations focused on technologies that automate existing manual processes to reduce costs.  

This is especially important in revenue cycle management, where providers experience staff shortages and shrinking margins. FinThrive shows health system CIOs the pathways to invest in intelligent, integrated technologies that automate revenue cycle operations. The company connects the revenue cycle teams through a SaaS platform to make collaborative decisions.

Hospital at home is the fastest-growing US care pathway. Keeping people at home after discharge is the desired outcome.  Putting that into practice is the challenge.  Honeywell is taking a practical approach to how AI can move health systems from patient vitals data collection to smarter, faster clinical decision-making. Here is a real-time monitoring system that captures patients’ vital signs within a hospital and remotely. The “Real-Time Health System” (RTHS) uses a wireless QR code skin patch for real-time monitoring. The patch connects to an intelligent app and caregivers receive real-time alerts of significant patient status changes.  Along with propping up pillows and tracking med times, home caregivers become partners in care delivery and people can heal at home safely.

Among the more challenging health intersections is between providers and payers. The tussle for reimbursement requests is friction, repetitive work and outdated workflow. MRO is improving the complex relationship between providers and payers through more thoughtful patient information and clinical data exchange.  Streamlining back-end workflows between providers and payers is a data handshake between financial decision-makers to improve interoperability and intelligent solutions to reduce provider-payer friction.

The real-time sharing of patient insights is a constant HIMSS23 call to action.  The system collects volumes of information.  But “after the fact” analysis means the barn gate on a patient’s care closes by the time the data are assessed.  Effective data-driven care coordination is mission-critical for providers and health plans as they shift to value-based programs. PointClickCare seeks to facilitate better care by tapping one of the most underutilized and required assets – collaboration. 

In connecting data from more than 27,000 long-term and post-acute care providers, more than 2,800 hospitals and 2,000 ambulatory clinics, every major health plan across the US, and some 75 state and government agencies, this is an example of how information can piece together the fragmented health ecosystem.

Interoperability remains a distant desire. SEQSTER, a pioneer in patient-centric healthcare data technology and patient management, announced its partnership with CLEAR, the secure identity platform to provide patients with Individual Access Services.  Announced during HIMSS23, the platform enables consumers to confirm their identities, access medical records and safely share them with various clinical trial research organizations within the SEQSTER Operating System for healthcare.

Health information for consumers and providers remains key to people’s health and wellbeing. Front and center on the exhibit floor is WebMD. The company used HIMSS23 to launch WebMD Ignite offering a comprehensive suite of healthcare solutions to kickstart healthcare organizations’ efforts to improve engagement and fuel growth through every stage of the healthcare journey, from discovery to recovery.  The solutions are the culmination of curated acquisitions from leading healthcare companies within the WebMD Health Network – including WebMD Provider Services, Krames, Mercury Healthcare, and The Wellness Network. 

THE POWER OF NOW

The combination of COVID, recognizing that the system is awash in data and spiraling health costs, and looming cyber risks that make health data vulnerable, is shifting business and medical leaders to advocate for immediate solutions.

HIMSS23 continues to be the meeting ground for government officials, mega-companies, and start-ups to see each other more as collaborative partners than competitors in the system’s improvement.  What was historically the playground of ideas and inventions has transformed into the roll-up-the-sleeves community. The conversations have been less about the system’s shortfalls and more about fixes that improve access, reimbursement and keeping people out of the hospital or getting them home faster. 

One thing that hasn’t changed is the refrain that the consumer is the customer.  That’s not the case.  The system itself remains the primary focus of the industry.  The outcome of a viable, more accessible health system that uses the information to perform cost-effectively will benefit the ecosystem – including the people that seek healing.

The post #HIMSS23 Brings Renewed Energy to the Global Health Information Table appeared first on Medika Life.

Every step of the patient journey can have a profound impact on the way in which your patients experience their time in your care, from their check-in to the day of their discharge.

A 2016 report found that hospitals that provide a superior patient experience generate a 50% higher financial performance than average providers[1].

We see every day that higher patient experience ratings are consistently linked to higher hospital profitability. What’s more, your customers are more loyal and your hospital reputation is enhanced, with an increase in referrals.

The patient experience is often overlooked in healthcare.

We developed four holistic assessments which evaluate what is actually happening in your hospital in the following key areas. When looking at your hospital’s patient experience, you could conduct something very similar.

People: Beginning at 4 am until the end of the day, carry out a deep-dive assessment of your patients’ experiences and staff procedures.

Technology: Take a comprehensive review of the current state of technology at your hospital is undertaken. This includes telehealth and telemedicine which are becoming increasingly vital for patients in rural areas to enable them to access care.

Processes: Map out how you will evaluate individual staff roles, treatment procedures, and department practices

Data: Conduct an analysis of disparate, complex data that is carried out to identify the gaps in critical data collection and opportunities for improvement.

These assessments cover the OR, the ER, surgical services, supply chain management, and patient flow, involving your staff and patients at every stage to gain invaluable insight into your patients’ perspectives.

But the patient experience doesn’t end when they leave your hospital.

Continuum of Care Strategies for Hospital Operational Performance

With changes to regulations and reimbursement plans, quality patient care requires strong collaboration across all care settings. A key element of achieving a superior patient experience and improved profitability is an integrated continuum of care strategy.

HIMSS defines Continuum of Care as:
‘A concept involving a system that guides and tracks patients over time through a comprehensive array of health services spanning all levels and intensity of care.’

That can extend from birth to the end of life. HIMSS breaks the care continuum down into seven categories, including wellness, acute hospital care and ambulatory care. As the US population ages, continuum of care will become more critical to ensure no patients are overlooked.

This new reality is a challenge for healthcare organizations as what begins in your hospital no longer ends there. In many cases, pre-hospital care such as blood pressure management is also a critical part of the continuum.

As hospital margins are squeezed, the patient experience and continuum care will become critical strategies to improve your profitability.

The post How To Ensure a Superior Patient Experience and Continuum of Care appeared first on Medika Life.

“Do you think my surgery was a success?” the elderly gentleman asked me.

I was taken aback by the question. By all rights, this now 90-year-old man should have been dead. I considered his survival one of my greatest successes, and I told him so. He was not convinced.

It had been the middle of the night when the phone rang. The ER attending from an outlying hospital was in a panic. He rushed through the story: an 89-year-old man had come into the little rural ER complaining of abdominal pain, and collapsed. It turned out he had ruptured his abdominal aortic aneurysm, and his heart was pumping blood into his abdomen. The patient’s blood pressure was hardly detectable, and he was unresponsive. The ER doctor on duty wanted me to race out there and fix the problem. Unfortunately, that was not realistic because the hospital, which only had two ORs, lacked the equipment and resources to deal with such a dramatic problem.

I told the ER attending to put the man into an ambulance and send him to the main hospital. Then I gave serious consideration to going back to sleep. The patient was 89 years old, had suffered a high mortality event, and was nearly dead already. The chances of him still being alive when he arrived at the main hospital seemed minuscule. I felt guilty calling in the OR staff and anesthesiologist knowing I would most likely send them home when I pronounced the guy DOA.

But when the ambulance arrived, though the patient had only a tenuous connection to life, he wasn’t dead. We took him directly from the ambulance bay to the OR, transferred him onto the operating table, and, without ceremony or anesthesia, started the operation, and got control of the bleeding aneurysm. The patient was still (miraculously) alive, so I proceeded to repair the aneurysm while the anesthesiologist placed lines, gave blood, and resuscitated the man. Surprisingly, he survived the operation and continued to improve in the ICU.

After eight days in the hospital, I discharged him to a nursing home. I saw him back for a couple of post-operative visits as he continued to improve, and then returned him to the care of his primary physician.

It was a year later when I saw him again in the hospital regarding a question about his aneurysm repair. I reviewed his scan and reassured the patient that all was well. He did not seem to agree with my assessment. I asked him if there was something else bothering him.

He responded with a question: “Do you think my surgery was a success?”

I did think his surgery was a success — I considered his survival to be one of my great successes. I had bragged about it on many occasions.

“Yes, I think your surgery was a success,” I said.

“I don’t think it was,” he replied.

“Why is that?” I inquired.

“I’m still in that home you put me in.”

He had been living in a nursing home since leaving the hospital. It looked like that was where he was going to stay. And, because he would never leave the nursing home, he did not consider his operation a success. His inability to return to independent living meant that, for him, the operation had failed. He would, it seemed, have preferred to die from the ruptured aneurysm than to live in a nursing home.

I had not discussed this man’s goals for surgery with him beforehand. Of course, I had not done so because he was unresponsive and, with no indication that he did not want me to try, I proceeded to provide him with the best care I could. That meant fixing his aneurysm and saving his life. But now he was telling me that he would have preferred I let him go.

It is always hard for a surgeon when an operation does not turn out well but in my mind, this operation had been an unexpected success — because my metric for success was that the patient was still alive. But the patient’s metric was more nuanced. For him, being alive wasn’t enough. He needed to be able to live his life in a meaningful way, and only he could define what that meant. For him, living in a long-term care facility was not satisfactory. He saw the operation as a failure because the excision of his aneurysm had also excised his independence.

The lesson I took away from this encounter was that I need to view the success of what I do from the viewpoint of the patient. As physicians, we often assume that we know what is best. In this case, I made a decision based on my understanding of the standard of care. To be fair, I did wonder what the man would have wanted, but at the time, there had been no way to ask him. That said, the experience has made me more circumspect in making medical decisions in complex situations. I now ask patients what their goals are. I present surgical and medical options and make sure the patient understands — and then I ask them more questions.

“What are you hoping will happen?”

“What outcome would be satisfactory to you?”

“What can I do to help make that happen?”

What I have learned is that the patient, not the doctor, defines the success or failure of medical treatment. To achieve success, I need to know the patient’s hopes, dreams, goals, and fears. And the only way to learn those things is to ask. We need to explicitly ask patients what they want, what they fear, and how they would define a satisfactory outcome. If we don’t take the time to find out what kind of outcome is meaningful to the patient, the best care in the world may be ineffective.

The post I Thought I Saved My Patient’s Life. He Didn’t Agree. appeared first on Medika Life.

I met Ashley yesterday while hiding in the hallway just outside our room. I had been fighting with August for at least 20 minutes to keep his pulse ox on his toe and oxygen connected to his trach. I was at my limit. I had been crying and needed to step away for a moment. You know the headspace you get when trying to console a newborn at 3 a.m. for the 20th time? That’s where I was. Except I was fighting with a three-year-old cancer and stroke survivor. I was exhausted and defeated. He was relentless.

Ashley was sitting on the ground in the doorway of the room next to us, encouraging her son, Pierce, to take steps in the hallway.

Meeting parents on the oncology floor is an exceptionally weird experience. It feels a little like a college dorm in some ways. Everyone is shuffling around in their sweats and pajamas, bags under their eyes, and usually mumbling something that sounds like, “more coffee.” The whole vibe is strangely familiar but in a backward, twisted kind of way. More like a dorm in The Upside Down from Stranger Things or the nightmare version of déjà vu.

But, Ashley and I exchanged smiles that made space for us to exchange pleasantries.

“How long have you guys been here?” I asked, making small talk.

“About six and a half weeks. You?” she replied.

“Only a week or so this time, but we spent many nights here on this floor a few years ago,” I explained.

I know the darkness that her shirt referenced. I’ve slept in it. I’ve tried to manifest positive outcomes with my tarot cards in it. I’ve been consumed by it. Nearly three years ago, the life that I had poured myself into creating most of my adulthood was obliterated within a few hours. Thankfully, that memory is burning into my mind more like a dream these days than a threat, but I still recognize it when I see it.

“He’s so sweet. How old is he?” I asked.

“He just turned two at the new year. He was diagnosed just a few days before his birthday.”

“Do you mind me asking about his diagnosis?” I asked, nodding to Pierce.

“He has stage four liver cancer. But it has metastasized to his lungs,” she said.

“I am so sorry. Can I give you a hug?” I asked. I could see her vulnerabilities flickering in that moment.

“Yes!” she replied without hesitating. We became instant friends.

As we got to know more about each other, it occurred to me that this was still their first stay in the hospital since finding out the news. The first six weeks. The first six weeks of this new life that only a few people come to know. Where were we during the first six weeks? They are a blur now, but there are things I won’t forget in that time. Those early days stay with you even if you can’t remember them in detail.

I do remember the layout of the room in the trauma ICU. I remember the consultation room we were taken to learn about August’s prognosis. That was the room in the back corner of the floor so no one could hear me scream, at least not clearly. I remember the couch I laid on during his surgery, where my sister rubbed my back and ran her fingers through my hair as I lay curled in a trance.

I remember the neuro recovery room we stayed in after he was stabilized from surgery. I remember meeting August’s oncologist for the first time and being told “he already knew who we were” and that he had been following this case from the moment he was admitted. I remember asking him if trying to continue breastfeeding would give my son a better chance at beating the odds ahead of him.

Ashley is just starting this journey with her son, but I could see the burning flame inside of her. She is still in those first six weeks. Her soul has been lit on fire. She is a mom fighting for her son and demonstrating to him at the same time his capacity to fight as well. She is evolving, in real-time, into a force that will power her family for the long journey ahead. I see myself in her. I was in her shoes nearly three years ago and still am stoking that fire.

You don’t have children and expect them to traverse an obstacle like cancer. You expect scrapes, bruises, maybe broken bones. At baby showers, you joke about “all the trouble your little boy will get into,” but you aren’t suggesting they fight for their life. You expect bullies and heartbreak and lessons in trust. You don’t expect what comes with a cancer diagnosis, like chemo and radiation. Those kinds of things aren’t for children.

Our day eventually blurred into night, which you don’t notice the same way when you’re in the hospital. I swear that time moves differently here. Somewhere in between Twitter searches for updates on the impending world war, the late-winter ice storm, and respiratory treatments, I fell asleep. I woke to muted voices casting shadows on the wall. It was 3 a.m. but something was going on.

I stepped out of our door to see the clinically bright lights on in my new friend’s room. The door was wide open and a team of hospital staff was in the hallway. Somehow, I got a text from Ashley.

“I’m sorry if I’m keeping you up,” she said.

How on Earth did she have the ability to text me while her son was the center of everything in that moment? I should be the least of her worries.

Stunned, I replied, “Omg, no worries at all. Is everything okay? Do you need anything?”

“No, we are headed to the ICU,” she explained.

“I am so sorry, Ashley,” I replied. I know better now than to say anything more in these moments.

“I’m so worn out. How did you do it?” she asked.

I typed out so many responses to that question. This time, for these circumstances, she needed validation and a reminder of self-care before anything. She needed to know she is not alone. She’s allowed to feel scared, tired, and sad. And she’s allowed to take care of herself.

I said, “It is exhausting. You need rest. Will you be able to get some?”

What I didn’t say – but wanted to tell her – is that truthfully, I didn’t “do it.” I did what I had to do to support August and our family, but any sense of accomplishment about what we experienced feels inauthentic; for me at least. The primary accomplishment belongs to August.

The only genuine answer I could give is that I just survived; alongside my son. That was all I could do. And that is enough.

And she will do it too.

The post A Vignette of Life as a Pediatric Cancer Mom appeared first on Medika Life.

If you listen to the nation’s largest Alzheimer’s disease advocacy organizations, you might think everyone living with Alzheimer’s wants unfettered access to Aduhelm, a controversial new treatment.

But you’d be wrong.

Opinions about Aduhelm (also known as aducanumab) in the dementia community are diverse, ranging from “we want the government to cover this drug” to “we’re concerned about this medication and think it should be studied further.”

The Alzheimer’s Association and UsAgainstAlzheimer’s, the most influential advocacy organizations in the field, are in the former camp.

Both are pushing for Medicare to cover Aduhelm’s $28,000 annual cost and fiercely oppose the Centers for Medicare & Medicaid Services’ January proposal to restrict coverage only to people enrolled in clinical trials. Nearly 10,000 comments were received on that proposal, and a final decision is expected in April.

“With respect, we have no more time for debate or delay,” the Alzheimer’s Association national Early-Stage Advisory Group wrote in a Feb. 10 comment. “Every passing day without access to potential treatments subjects us to a future of irreversible decline.” For its part, UsAgainstAlzheimer’s called CMS’ proposal “anti-patient.”

Yet the scientific evidence behind Aduhelm is inconclusive, its efficacy in preventing the progression of Alzheimer’s remains unproved, and there are concerns about its safety. The FDA granted accelerated approval to the medication last June but ordered the drugmaker, Biogen, to conduct a new clinical trial to verify its benefit. And the agency’s decision came despite a 10-0 recommendation against doing so from its scientific advisory committee. (One committee member abstained, citing uncertainty.)

Other organizations representing people living with dementia are more cautious, calling for more research about Aduhelm’s effectiveness and potential side effects. More than 40% of people who take the medication have swelling or bleeding in the brain — complications that need to be carefully monitored.

The Dementia Action Alliance, which supports people living with dementia, is among them. In a statement forwarded to me by CEO Karen Love, the organization said, “DAA strongly supports CMS’s decision to limit access to aducanumab to people enrolled in qualifying clinical trials in order to better study aducanumab’s efficacy and adverse effects.”

Meanwhile, Dementia Alliance International — the world’s largest organization run by and for people with dementia, with more than 5,000 members — has not taken a position on Aduhelm. “We felt that coming out with a statement on one side or another would split our organization,” said Diana Blackwelder, its treasurer, who lives in Washington, D.C.

Blackwelder, 60, who was diagnosed with early-onset Alzheimer’s in 2017, told me, “To say that millions of people afflicted with a disease are all up in arms against CMS’s proposal is just wrong. We’re all individuals, not a collective.”

“I understand the need for hope,” she said, expressing a personal opinion, “but people living with dementia need to be protected as well. This drug has very serious, frequent side effects. My concern is that whatever CMS decides, they at least put in some guardrails so that people taking this drug get proper workups and monitoring.”

The debate over Medicare’s decision on Aduhelm is crucial, since most people with Alzheimer’s are older or seriously disabled and covered by the government health program.

To learn more, I talked to several people living with dementia. Here’s some of what they told me:

Jay Reinstein, 60, is married and lives in Raleigh, North Carolina. He was diagnosed with early-onset Alzheimer’s disease three years ago and formerly served on the national board of directors of the Alzheimer’s Association.

“I understand [Aduhelm] is controversial, but to me it’s a risk I’m willing to take because there’s nothing else out there,” Reinstein said, noting that people he’s met through support groups have progressed in their disease very quickly. “Even if it’s a 10% chance of slowing [Alzheimer’s] down by six months, I am still willing to take it. While I am progressing slowly, I want more time.”

Laurie Scherrer of Albertville, Alabama, was diagnosed with early-onset Alzheimer’s and frontotemporal dementia in 2013, at age 55.

Early on, she was prescribed Aricept (donepezil), one of a handful of medications that address Alzheimer’s symptoms. “I became totally confused and disoriented, I couldn’t think, I couldn’t concentrate,” she told me. After stopping the medication, those symptoms went away.

“I am not for CMS approving this drug, and I wouldn’t take it,” Scherrer said. At discussion groups on Aduhelm hosted by the Dementia Action Alliance (Scherrer is on the board), only two of 50 participants wanted the drug to be made widely available. The reason, she said: “They don’t think there are enough benefits to counteract the possible harms.”

Rebecca Chopp, 69, of Broomfield, Colorado, was diagnosed with early-onset Alzheimer’s in March 2019. She’s a former chancellor of the University of Denver.

Chopp is a member of a newly formed group of five people with dementia who meet regularly, “support one another,” and want to “tell the story of Alzheimer’s from our perspective,” she said.

Two people in the group have taken Aduhelm, and both report that it has improved their well-being. “I believe in science, and I am very respectful of the large number of scientists who feel that [Aduhelm] should not have been approved,” she told me. “But I’m equally compassionate toward those who are desperate and who feel this [drug] might help them.”

Chopp opposes CMS’ decision because “Aduhelm has been FDA-approved and I think it should be funded for those who choose to take it.”

Joanna Fix, 53, of Colorado Springs was diagnosed with early-onset Alzheimer’s disease in October 2016. She, too, developed serious complications after taking Aricept and another dementia medication, Namenda (memantine).

“I would love it if tomorrow somebody said, ‘Here’s something that can cure you,’ but I don’t think we’re at that point with Aduhelm,” Fix told me. “We haven’t been looking at this [drug] long enough. It feels like this is just throwing something at the disease because there’s nothing else to do.”

“Please, please take it from someone living with this disease: There is more to life than taking a magic pill,” Fix continued. “All I care about is my quality of life. My marriage. Educating and helping other people living with dementia. And what I can still do day to day.”

Phil Gutis, 60, of Solebury, Pennsylvania, has participated in clinical trials and taken Aduhelm for 5½ years after being diagnosed with early-onset Alzheimer’s in 2016.

He’s convinced the medication has helped him. “I don’t know how to describe it other than to say my head feels so much clearer now,” he told me. “I feel much more capable of doing things now. It’s not like I’ve gained my memories back, but I certainly haven’t deteriorated.”

Gutis thinks CMS’ proposed restrictions on Aduhelm are misguided. “When the FDA approved it, there was this sense of excitement — oh, we’re getting somewhere. With the CMS decision, I feel we are setting the field back again. It’s this constant feeling that progress is being made and then — whack.”

Christine Thelker, 62, is a widow who lives alone in Vernon, British Columbia. She was diagnosed with vascular dementia seven years ago and is a board member for Dementia Advocacy Canada, which supports restrictions on Aduhelm’s availability.

“Most of us who live with dementia understand a cure is not likely: There are too many different types of dementia, and it’s just too complicated,” Thelker told me. “To think we’re just going to take a pill and be better is not realistic. Don’t give us false hope.”

What people with Alzheimer’s and other types of dementia need, instead, is “various types of rehabilitation and assistance that can improve our quality of life and help us maintain a sense of hope and purpose,” Thelker said.

Jim Taylor of New York City and Sherman, Connecticut, is a caregiver for his wife, Geri Taylor, 78, who has moderate Alzheimer’s. She joined a clinical trial for Aduhelm in 2015 and has been on the drug since, with the exception of about 12 months when Biogen temporarily stopped the clinical trial. “In that period, her short-term memory and communications skills noticeably declined,” Jim Taylor said.

“We’re convinced the medication is a good thing, though we know it’s not helpful for everybody,” Taylor continued. “It really boosts [Geri’s] spirits to think she’s part of research and doing everything she can.

“If it’s helpful for some and it can be monitored so that any side effects are caught in a timely way, then I think [Aduhelm] should be available. That decision should be left up to the person with the disease and their care partner.”

[Also related to this story, please see: “Were the Billions Invested in Alzheimer’s Research Worthwhile?” by Medika Life editor-in-editor Gil Bashe.]

The post Patients Divided Over Alzheimer’s Drug: Is It a ‘Risk I’m Willing to Take’ or Just a ‘Magic Pill’? appeared first on Medika Life.

This most recent, alarming case, outlined in a major newspaper article, was of a young woman who sought medical care and an accurate diagnosis from 10 physicians over three years. All of them attributed her symptoms to various non-life-threatening disorders that didn’t require a sufficient degree of care.

Most physicians told her it was stress and she should modify her lifestyle. One physician suggested she needed to lose weight, which was the cause of her many symptoms.

Finally, in excruciating pain, she went to a hospital emergency room. The diagnosis and treatment? Ovarian cancer and the removal of a tumor weighing over four lbs. was extracted from her stomach. How did they miss this, and why was she told it was stress, weight, and lifestyle? Obviously, she is not alone in this failure to listen and diagnose a deadly illness.

Aren’t there tests for ovarian cancer? I recall over 20 years ago being asked to write an article for an oncologist at a prestigious hospital (it would be published under his name) for CA-125. I have no idea if he had it published. But the problem is not limited to cancer or ovarian cancer, specifically.

We know that heart attacks in women are a major concern in healthcare. The reason? Women’s symptoms aren’t classic as they are in men. When women reveal their physical distress, it may be viewed as the oh, so biased diagnosis of anxiety.

It’s the same old song; gender bias in medicine. And it has been receiving more attention as physicians publish opinion articles. The “good little girl syndrome” is at work once again. In medicine, it’s exhibited when women feel intimidated in a power situation where they aren’t on equal footing.

The topic isn’t how to deal with medical anxiety but how to appropriately handle medical situations that may entail life and death questions. No longer should we be viewing medical personnel, as Alec Baldwin said in the film, “Malice.”

When questioned in the film about his role as a surgeon in the operating room, Baldwin says, “I am God” in the operating room. Currently, the god aspect of medicine has been addressed and, hopefully, changing with new medical personnel. Bringing attention to this dangerous self-concept should also emphasize attention to diagnosis and inherent bias.

A reversal of communication problems also can be seen when parents with sick children are believed when they should be viewed askance. In some instances, these individuals depend on deceiving medical personnel in diagnosis. When destructive, possibly psychopathic caregivers are in charge, the result may be to circumvent child advocacy, as in the case of Munchausen’s Syndrome by Proxy (MSP).

A recent case made national headlines when a young seven-year-old girl was viewed as suffering from a mysterious, untreatable, and deadly ailment. One of the things she wished for came from the Make a Wish Foundation that granted it.

The little girl’s tragic journey began when she was two-year-old, and her mother took her for treatment. Here, the mother was believed each time, and repeated surgeries were performed. Ultimately, the mother signed her daughter into hospice and requested a DNR form.

Hundreds of thousands of dollars in donations from various charities and Medicare for medical treatments were provided to the mother. According to the symptoms of MSP, the goal is for the guardian/parent to receive attention and be lauded for their continued care for the child. I wrote on MSP in an article for Postgraduate Medicine. The article resulted in my decade of TV appearances.

Although usually limited to children, MSP is also found in men seeking medical care for their wives. The research, however, thus far concentrates on women since they are the main care providers for children and children appear to be the prevalent victims.

Often, the caregiver has a medical background of some type or is knowledgeable about medical procedures and diagnoses. Rather than seek care at one hospital, they may circulate to several, knowing there would be no medical records shared by all of them. The loophole creates an opportunity for deceit and death.

Fortunately, someone blew the whistle as this mother proceeded to take another daughter for “treatment” of a curious ailment. An investigation by a county sheriff’s office led to the mother’s arrest after the death of the first child. Caught, the mother entered a guilty plea resulting in her being sentenced to 16 years in jail. The child’s step-father sued one of the hospitals that provided care for the girl and did receive an award.

Licensing authorities for many professions, including medicine, mental health, barbers, hairdressers, and others, require continuing education to aid in reporting abuse of adults, children, and the elderly and making accurate diagnoses. Training to address bias is also mandatory, but not everywhere.

If I were to suggest a film on caregiving and legal abuse, I’d recommend “I Care a Lot.” It is not a comedy.

The post “Deaf” Physicians’ Failure to Listen to Seriously Ill Patients appeared first on Medika Life.

On my back, I lay and lean into this sleepy wisdom — we all have pain — every single one of us humans.

It may be heart-sting or a bruised ego or a bruised body. We all have pain.

I turn 43 years old this summer. For years my back would hurt so bad people could read on my face something was wrong. They’d say, “Aimée, are you okay?” I’d rub my lower back, which felt on fire with pain, and say, “Yes, I’m fine. My back’s just a little sore.” It hurt so much I needed to sit down. Standing hurt. I didn’t know what to say or how to explain this.

I was supposed to be fine. A genetic specimen of good health. 

My dad has a genetic disease called Gaucher. It can cause weakening of bones, intense pain, and myriad other problems.

My knees feel raw and tender as I lay still, wondering when and if sleep will overtake the nagging feeling of persistent pain cues from my body to my brain. At 10:00 pm I took some cannabis tincture. It’s 2:16 am. I hurt. 

I know I’m not the only one.

Yesterday when I typed, my stiff fingers ached. My back started to scream. My wrists firmly demanded, “Be careful. Be gentle with us.” 

I tried to listen. I tried to gain ease knowing I’m not the only one. We all have pain. 

In the world of Gaucher, many carriers have been asking if we could have pain associated with being gene carriers. For decades the answer was a definitive “No.” 

Why are so many carriers expressing symptoms of pain if that’s true?

There are new tests with more precision to identify carriers. In the late 1970s, they thought the carrier test was reliable. 

After the past year, in which I finally shared my pain with my family and friends, my mom began to wonder if there might be a connection between my pain and my being a Gaucher gene carrier. She researched and forwarded the information to me to share with my doctor. For example: 

There are more than 400 genetic mutations known to cause Gaucher disease. Not all of these were known decades ago, nor do all screening tests today cover every single one of them. In rare cases, it is possible for genetic screening to miss a mutation. An enzyme test called a beta-glucosidase leukocyte (BGL) test will almost certainly show if you have Gaucher disease. Find out about testing for Gaucher disease.

In the late 1970s, my mom got a test to see if she was a Gaucher gene carrier before my parents conceived me. They didn’t want to pass on the disease. They thought they were free and clear when her test was negative. They thought I wouldn’t have pain. 

We all have pain. 

My hip still stings this morning. My ankles, knees, and wrists are nagging, “We hurt. Go easy. Be gentle. Please.”

Yesterday I heard my husband in the kitchen, loading the dishwasher. He sounded annoyed. How do I know? 20 years together. The clanking of dishes. I just know.

I’d told him I’d been flaring and exhausted for days. I don’t think I’ve conveyed what that means very well. Or maybe I don’t give him enough credit. Maybe I feel guilty and ashamed and misinterpret the clanking of the dishes. 

It takes all my energy to get out of bed. Running a load of dishes feels like running a marathon. 

Yesterday, I felt guilty, so I got up to run a load of laundry. I opened the garage door and heard the machine already whirling. I checked the dryer. Empty. I picked up my clean clothes off the back of the dining room chairs and hung them up. I didn’t touch the kid’s clean laundry; I handed David a pile of his clean shirts and pants. I knew I couldn’t do it all. Or rather that the pain would start screaming if I did too much.

Determined to do something useful, I grabbed plastic bags and headed into the sunny June day to pick up the dog poop in our backyard. 

The sun heated my back and shoulders. It felt like a gentle massage. Heat therapy. I am thankful for our pets. They are my pet therapy. I wandered the yard and repeated the stooping motion to pick up Nugget’s small poop piles (Chihuahua and Jack Russel Terrier mix) and Juno’s huge poop mounds (Chow, Staffordshire Terrier, Weimaraner, Akita, Rottweiler). 

Near the Red Haven Peach Tree were scattered fallen peaches that never got the chance to ripen. I picked up the peaches to add to the bag. The tree is diseased or has a pest problem. Or both. The tree’s buds swell and bloom. Peaches set and begin to grow. But, about a month into their growth, the fruit begins to ooze clear gooey sap from their flesh and out of their skin. I wonder if peaches feel pain. We all have pain. 

I tied up the bag of dog poop and tossed it in our outdoor trash can. I washed my hands. Washed the faucet. Washed my hands; realized a little bit of my OCD was creeping back in.

We all have pain.

I know this will shock you, but I’m not perfect. Caffeine and sugar likely contribute to my pain flares. I drank coffee yesterday and had a Payday candy bar and a bag of chewy Sprees. I quit eating processed sugar like that over a year ago, but last night I indulged.

My pain hadn’t abated and I wanted a sugar high. The hug of candy. I told my husband. He doesn’t usually indulge me with my candy cravings. I don’t usually ask for candy anymore. He went to the gas station and bought me some.

Earlier in the day, my intuition told me I needed to drink cold water, so I asked him to go get me ice. He grabbed a huge gas station cup of ice and brought it to me. I added electrolytes and sipped the icy water. I felt a wave of relief wash through my brain, my body. I thanked myself for leaning into my intuition. I was thankful I asked my husband and my husband went to get the ice. Lately, even driving anywhere feels like a monumental task. 

I didn’t chastise myself for this. 

I asked for help. 

I was honest with myself and my husband. 

I was gentle.

I’ve felt pain since I was a child. I don’t remember exactly when I realized my body talked to me through pain signals. I do remember being a teenager and feeling intense pain. I told myself I shouldn’t feel pain. That I was young and healthy. That I should tough it out. My dad was the one in real pain. Not me. I tensed up and barreled on — exacerbating the pain, I’m sure.

The scent of BenGay triggers memories of my dad in excruciating pain, rubbing the minty cooling ointment onto his skin, his tender screaming pains, searching for some relief. 

My pain isn’t the same as my dad’s. Over a year ago, a doctor finally confirmed I am flare-y. I show symptoms of someone in chronic pain. She sent me to a rheumatologist. After a slew of tests, nothing was found, except I might have some arthritis in my hands. I failed (passed?) the fibromyalgia pain points test (though I’ve read this information from Mayo Clinic that this is no longer the best or only way to diagnose fibromyalgia). 

My PCP advised me to accept my pain and to focus on treating my symptoms. She told me that research hasn’t caught up to autoimmune disorders that cause chronic pain.

She told me she believed me.

You see, for years I thought I might be crazy. I might be making this up. It might all be in my head. I might be over-reacting to my aches and pains.

When I was diagnosed with OCD, I was informed that Cymbalta helps with the treatment of faulty pain processors (what happens with fibromyalgia) and OCD symptoms. It has helped alleviate my symptoms of both OCD and pain. I think it’s more effective for OCD, anxiety, and depression, but it also puts a dent in the pain. For that, I am thankful. 

We all have pain.

Getting the genetic tests ordered has taken several weeks. On June 17, I go to see my doctor to pick up a prescription to bring to a special lab. That’s when we’ll start looking at whether or not my pain is related to being a Gaucher gene carrier or if further tests are required to see if I have a version of Gaucher disease. This could only happen if the 1970s test my mom took was incorrect and she is a gene carrier. 

My feelings are mixed. Most people might think I want a result that clears Gaucher from having anything to do with my pain. 

In my family history, there’s osteoporosis, arthritis, mysterious chronic pain. It’s not exactly shocking I live with pain when I think about my family’s health history.

Part of me wants the test to say, “Yes! Gaucher is the reason for your pain. Here are some treatments to try.” 

Because then there’s an answer instead of a mystery.

I can’t get comfortable as I type this, laying on my back, in bed, thumb-typing on my phone. My hips are stiff and sore. My shoulders and neck ache. My husband came in to check on me. He squeezed my leg and asked how I was doing. I tried not to cringe. All my pain receptors seem to be on overdrive. 

“I’m still flare-y,” I said. 

He nodded and let me get back to thumb typing.

Now I’ll make some coffee — espresso and oat milk. I’ll add some cannabis tincture. I’ll wonder when this flare will pass. My aunts come to visit us from out of town in a few days. Will I still feel like this?

I’m done tensing and barreling through pain and crying behind closed doors. If I feel like this, I’ll be honest with them, with myself.

When I finally drifted off to sleep last night, it was with this wisdom I knew I’d share with you in the morning: 

We all have pain. It helps when we are gentle with ourselves.

Go gently into the world, friends. 

It took me decades to realize the inherent strength and wisdom in gentleness. To talk with my physical, emotional, and psychological pain with kind honesty.

We all have pain. 

This approach of interacting with pain in a gentle manner feels like a balm, a massage for my deep wounds and aches — physical, emotional, and psychological. 

I invite you to try the same approach.

The post We All Have Pain appeared first on Medika Life.

Disclaimer: All information and resources in this article are based on my personal research and opinions unless otherwise noted. I wish to contribute to the VBAC conversation from a patient point of view; I am not a doctor. My educational background is in English-Creative Writing. Please consult health care professionals before making decisions about your health. 

When I tell friends that Ceci , our second child, was my VBAC baby, I usually find a confused expression on their face or they ask me point-blank, “What is that?” to which I answer, “Vaginal Birth After Caesarian Section” in an even tone. I’ve had practice saying “vaginal” now for eleven years. At first, it felt a little embarrassing or like I was supplying information the questioner wasn’t prepared for. Then, I got over it. It’s part of being a positive force in the world of women’s health and it’s why I write articles about subjects I wish were discussed more, like maternal incontinence. 

If you’re reading this, I’m guessing you’ve either had a VBAC, are considering having a VBAC, or know someone who has had one. Now that I have thirteen plus years spaced between my traumatic and unplanned C-Section and my emotionally healing VBAC I feel I can finally share my experience with people who are interested in possibly pursuing this option. Let’s dive into my backstory and then I’ll give some details about what you can do to further research your options if VBAC is something you’re considering. 

My VBAC Story Starts With a Traumatic C-Section Story

Close to Christmas, I went into labor. I was terrified and denied I was in labor until my water broke many hours after labor started. At that point, David helped me waddle into the car and go to the hospital. I was at almost 8cm (out of 10cm) dilated and our son’s head was stuck in the brow position, meaning he was looking skyward instead of chin tucked in. My doctor was on vacation and a very pregnant doctor came in to introduce herself and break the news that we should consider a C-Section. Otherwise, we risked breaking our baby’s neck during vaginal birth. 

Neck Breaking. That’s all she had to say. We agreed and looking back, I do believe this was the right decision. After our son was born, I second-guessed myself, but the fact of the matter is either way he’d have been born, there would’ve been trauma to both my body and his. 

When we got to the hospital, I was in so much pain that I screamed for drugs. I let loose like they do on TV. And, the nurses shushed me for making such a scene. I got doses of pain medication and my thinking became blurry as the pain receded. David got suited up in scrubs and they wheeled me to the OR. I was not restrained. An anesthetist hooked me up to an epidural and rubbed a piece of ice across my huge belly. “Can you feel that?” he asked. “I’m not sure,” I replied, “Can you do it again?” At least that’s how I remember it. But, he shushed me as the nurses had. “If you don’t know, then you didn’t feel it.” 

The thing was, I did feel the ice. And, my drug-blurred brain wasn’t doing me any favors. The doctor started making the incision. I could feel the scalpel cutting into my flesh. I imagined people enduring torture and told myself if they could do it, so could I. It felt like forever before my brain caught up and sent me the signal that we were in an OR, this wasn’t torture to be endured, and I should speak up. I don’t remember what I said but I do remember reaching under the curtain trying to grab the scalpel and make it stop. 

David saw what was happening and got the doctor’s attention. She was shocked and sternly told the anesthetist to fix his mistake. As he upped the dose, it worked, but I was in another world, one of PTSD, terror, torture, and knowing I was about to have to take care of a baby who caused this pain, followed by guilt because it wasn’t our baby who caused the pain. And, was it my fault for taking medication during pregnancy, for going to the hospital too late in labor? My brain spun as the doctor made precise incisions. My scar is barely there — she did an excellent job. 

And, then it was time for our son to be born out of this slice in my abdomen that I couldn’t see. The doctor tugged to free him and he stayed firmly inside me. Another tug. And, the third, he was free. She’d had to dig her heels into the ground and pull with all her strength. She seemed to also be suffering a case of trauma — after all, she too was pregnant. 

Our son scored well enough on the Apgar test and they wheeled him off and David left and I was all alone in a room full of steel — wounded, weak, and scared. 

Many months later, the doctor who delivered Jaden and I found ourselves at a restaurant unexpectedly attending the same dinner party and discussing our deliveries. Mine had traumatized her as I’d thought. She ended up also having to have a C-Section. It was cathartic to have this unexpected conversation.

Recovery took weeks, months, years. There was emotional trauma beyond the physical toll of the unplanned C-Section. I share this backstory with you to illustrate why it was that I was so adamant about birthing our second child by VBAC. I didn’t want to endure unnecessary suffering and pain and didn’t want to put our baby through any trauma either.

It Wasn’t Easy Finding a VBAC Doctor, But it Was Worth It

Jaden was born in late December of 2007. David was ready to talk about having another child long before I was prepared for entertaining the thought of it. I needed to first find a way to heal. 

After the C-Section, I’d been unable to breastfeed. In my mind, this meant I failed at the most basic task of mothering. I no longer believe that and wish there wasn’t so much judgment of parent’s choices around breastfeeding. I also began having intrusive thoughts, which is part of Postpartum OCD (PPOCD) but was something I didn’t know about then and is only really coming into the postpartum discussion more prominently in the 2020s. Aymes Sarah has written a book about this subject, which is forthcoming. It took many years for me to finally obtain an OCD diagnosis to go with my Generalized Anxiety Disorder and Depression diagnoses. Medication, therapy, writing, and other modes of healing have helped me navigate the mental illness aspects of my life.

I knew I wanted another child as much as David did, but I was terrified of going through C-Section trauma again. Very few doctors had the insurance to practice VBACs where we lived (Oklahoma, US) in 2010:

“From 2005 to 2015, the main malpractice insurance company in Oklahoma, PLICO (Physician’s Insurance Company of Oklahoma), refused to cover care-providers who allowed their patients to have a trial of labor after a previous cesarean.” — Bethanie Verduzco, Tulsa Kids

The restrictions were lifted in Oklahoma in 2015, allowing many more doctors to offer VBAC services. From what I understand, this varies from state to state and country to country. Finding a local resource group is a good place to start if you are interested in pursuing a VBAC. 

Some VBAC Basics

I don’t remember how I even learned about VBACs, to be honest. I’d guess it was either from a local mom’s group or from a source like Babycenter. I do remember that I was led to the online resources that ICAN (International Cesarean Awareness Network) provides. ICAN describes its mission:

The International Cesarean Awareness Network is a non-profit organization whose mission is to improve maternal-child health by reducing preventable cesareans through education, supporting cesarean recovery, and advocating for vaginal birth after cesarean (VBAC). — ICAN

All the warnings against VBAC mentioned the risk of uterine rupture:

“A possible rupture: A rupture of the cesarean scar on the abdomen or the uterus itself is rare. If a rupture does occur, most often there are no significant complications for you or your baby. Very rarely, however, a rupture can result in serious harm to both you and your baby. Your obstetrician will inform you if you are at a high risk for a rupture. If you are at risk, it is not recommended that you have a VBAC delivery.” — Brighamandwomens.org

The Brigham and Women’s Hospital has very good basic information on the risks and benefits of VBAC. One of the reasons I wanted a VBAC was the shorter recovery period. I still deal with emotional trauma in my C-Section scarring area, though it is much diminished now. And, they were right — my vaginal birth recovery was a breeze compared to the recovery from a C-Section, which is, after all, abdominal surgery. 

Once you have decided that you want to pursue a VBAC, you will need to do some homework:

• Find doctors who perform VBACs in your town with a high rate of success. You can call and request the success rate. 
• Figure out which of these doctors accept your insurance.
• Call insurance to confirm that they’d cover a VBAC birth.

Catharsis Through Delivery

I don’t remember how I found the details for Dr. John R. Thompson, but I do remember finding that his rate of success with VBACs was very high. Because I desperately wanted a successful VBAC, I decided to go with Dr. Thompson and take all of his advice. He had a proven record. He did some things differently than other VBAC doctors, namely that he induced a week early, which is generally recommended against because it slightly increases the chance of uterine rupture. His argument was having a smaller birth weight baby would increase the rate of success.

The delivery went smoothly. We arrived early in the morning and began the Pitocin drip. I wasn’t expecting the pain that came with inducing so early in labor. I asked for an epidural when I was only 2cm (out of 10cm) dilated. It was very difficult to deal with labor pain while hooked to an IV and being told to lay on my back in bed. This part was not ideal but I accepted it for what it was.

Dr. Thompson early in my pregnancy said he didn’t understand why women choose natural childbirth when the pain is unnecessary. Although I didn’t agree, I held firm in following his advice, which was to avoid any brain-altering pain interventions and use the epidural. I was clear-headed during the entire labor and delivery and for that I’m very grateful. I’m also grateful I had the epidural since labor was especially painful and movement was so constricted.

When it came time to push, it was difficult to feel what I was doing, which is one of the downfalls of epidural use. Dr. Thompson told me I needed to push or we’d be looking at a C-Section. That, along with an episiotomy, and Dr. Thompson guiding my hand to hold Ceci’s head as she crowned moved things along.

I hadn’t considered holding my baby’s head as I birthed her as an option. Dr. Thompson’s gesture of inviting me to do so was a kindness I will never forget. My body and my baby were able to achieve a successful VBAC. It was an extremely healing experience for me, from the research, reading and self-advocating to the labor and delivery to the postpartum period, in which I successfully nursed for 10 months. At the 10 month mark, intrusive thoughts began creeping in and I made the difficult decision to go back on medication and stop breastfeeding.

Emotional Healing Through VBAC

The pregnancy with our daughter was much easier than the one with our son. I felt supported and excited. I craved healing through this VBAC experience. Intuitively, I felt this would help heal the psychological trauma that I’d undergone with the unplanned C-Section. 

I believe it was through ICAN that I discovered a book called Cesarean Voices edited by Martha Basham. I do not recommend this book for women planning C-Section birth or women who have had non-traumatic C-Section births because this book is entirely about traumatic C-Sections. For me, reading the stories of other women who’d had traumatic C-Section birth experiences helped me feel not alone and was a catalyst toward my own healing. The book description on the ICAN website states:

“In a culture where cesarean section is viewed as simply another way to have a baby, we seldom hear the voices of women whose experiences have not been so easy. This groundbreaking book answers the question “What’s so bad about a cesarean?” in a raw, honest, heart-shattering way. If you care for or about women and babies, hear these voices.” — ICAN

I also accepted help after Ceci was born. A breastfeeding friend stayed with us for a week and helped me get the hang of it while also normalizing it for the rest of our family. My mom and mother-in-law and other family members provided support. Where I had felt alone and hurt after having Jaden, I felt supported in my healing after having Ceci. 

The Choice Is Yours Whether to Have a VBAC or CBAC

One of the most healing things about having had a VBAC is that moms who are interested in also having a VBAC reach out to me because I’ve been so open about mine. I’ve had coffee shop chats, in-person chats, and online message chats about my positive experience. I’ve gotten to hear when other moms have successful VBACs. Oftentimes, moms didn’t know VBAC was an option until I mentioned it. 

Not all moms are candidates for VBACs and this is a personal choice. There’s not a right or wrong answer and I hope there is no judgment for the choices moms make. We are under a lot of pressure to make 100% “right” choices. That’s impossible. We do the best we can with the information we have. ICAN has resources for moms who have CBACs (Cesarean after Cesarean Birth) to help with resources and healing. Although their mission is to decrease the number of unnecessary C-Sections they understand that sometimes C-Sections are the best option.

Whatever you choose, I suggest reaching out to other women who have gone ahead of you with what you are doing. It helps to have the support of knowing you are not alone and of hearing about successful outcomes. 

Further Resources

VBAC (Vaginal Birth After Cesarean)
www.childbirthconnection.org

VBACs in Oklahoma: What you need to know – TulsaKids Magazine
www.tulsakids.com

Vaginal Birth After Cesarean (VBAC) – Brigham and Women’s Hospital
www.brighamandwomens.org

Vaginal Birth After Cesarean Delivery (VBAC)
www.acog.org

VBAC Education Project | International Cesarean Awareness Network
ican-online.org

The post I Had an Emotionally Healing Vaginal Birth After my C Section.  Why VBAC May Be Right For You, Too appeared first on Medika Life.