Symptom Spotlight – “Ascites”*

Today’s Spotlight Symptom is:  “Ascites”

Many mesh-injured women and men suffer from this condition, yet it seems to be one of those symptoms that many doctors write off as “idiopathic” when seen in mesh-injured patients. Please refer to yesterday’s blog post to understand how doctors use the term “idiopathic” in a clinical setting.

Click here to learn how to Pronounce Ascites

Definition of Ascites: Ascites is the accumulation of fluid (usually serous fluid which is a pale yellow and clear fluid) that accumulates in the abdominal (peritoneal) cavity. The abdominal cavity is located below the chest cavity, separated from it by the diaphragm. Ascitic fluid can have many sources such as liver disease, cancers, congestive heart failure, or kidney failure. (SOURCE: http://www.medicinenet.com)

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Below are actual pictures of Ascites in mesh-injured patients. These four women have shared these intimate photos in hopes that their injuries will help YOU, the reader, or another injured person you may know.

THANK YOU TO THESE MESH WARRIORS!

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“While a tense abdomen filled with fluid is easy to recognize, initially, the amount of ascites fluid may be small and difficult to detect. As the amount of fluid increases, the patient may complain of a fullness or heaviness in the abdomen. It is often the signs of the underlying disease that initially brings the patient to seek medical care.” (SOURCE: emedicinehealth.com)

As I explained in yesterday’s blog, when a patient goes to the doctor with a symptom that doesn’t present in the most common medical context, many doctors do not pursue further understanding about why a common symptom is presenting in an uncommon way.

For example, the most common cause of Ascites is cirrhosis of the liver. So, say a mesh-injured woman presents to her physician with Ascites, but has no history of liver disease or alcoholism, and no cirrhosis of the liver. What happens next; or more appropriately, what should happen next?

The process of diagnosing the underlying cause of any symptom is performed by using the method of differential diagnosis. In the case of Ascites, one other possible explanation for the symptom is:

“Those who have spontaneous bacterial peritonitis (an infection of the peritoneum) develop abdominal pain and fever.” (SOURCE: http://www.emedicinehealth.com/ascites/page3_em.htm)

It is now well known that mesh can cause life-threatening and recurrent infection. So it seems to me that further investigation would be crucial to any patient with mesh who presents with Ascites.

Differential Diagnosis – the determination of which of two or more diseases with similar symptoms is the one from which the patient is suffering, by a systematic comparison and contrasting of the clinical findings.

Physicians are taught to follow these procedures to continue to rule out every cause, until a fotolia_5910589_XSshort list of possible causes remain. Ruling out underlying causes of any symptom(s) is carried out through a sequence of examinations and diagnostic testing.

With this symptom in particular, I am hearing from many women who are sent away by their doctors with some variation of an excuse, claiming ignorance, or at best, simply treating the condition with pharmaceuticals while refusing to perform simple diagnostic procedures and testing that could provide that doctor with more information and eventually to a better form of treatment, or cure ,and the underlying cause of the symptom.

So, when a mesh-injured patient presents with Ascites, and the physician has ruled out the most common cause of this symptom (cirrhosis of the liver), then his training requires that he begin to rule out additional possible causes.

In graph form, the process of ruling out causes for Ascites might look something like this:

ascites

 

Doctors are trained to use the above method with every symptom or illness. It is part of their daily scope of work, so why do I so often hear from women that they go to the ER, to their family physicians, to their OB/Gyns, and to their Urogynecologists with this disturbing symptom only to be told something like this, “I don’t know what this is,” or “I’ve never seen this before.”? The above process for differential diagnosis is relatively simple. Even the diagnostic testing is relatively simple, as noted above.

To find out more about testing used in the diagnosis of suspected Ascites, refer to the below pictures, and click on these links to learn more.

Abdominal Ultrasound

abdominal ultrasound

Diagnostic Paracentesis

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Computed Tomography (CT Scan)

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These women describe to their physicians that this symptom is not simply uncomfortable, but it’s PAINFUL. They describe shortness of breath, difficulty breathing, naseau and vomiting, and the obvious limitations in lifestyle and decreased quality of life – not being able to fit into clothing, not being able to lie on their stomachs, pain when sitting, etc. Imagine all the uncomfortable symptoms of being nine months pregnant, except this situation doesn’t end in the birth of a beautiful new family member.

I find it maddening, sickening, detestable, and downright cruel that so many doctors refuse to treat mesh-injured men and women, especially when these patients present with odd or “out of the box” symptoms.

I encourage you to print and use the above graph if you suspect you have this symptom. Bring it to your doctor. Earlier this week, I spoke with a woman who went to her Ob/Gyn with this symptom, and he simply told her there was nothing he could do to help her. What?! She even asked for some of the testing in the above graph, but still the physician refused to help her.

The question we should be asking is “Why?” The action we should be taking is to educate ourselves about our own bodies and what our bodies are trying to communicate to us through symptoms. Our physicians must understand that we know they are refusing treatment, and we know that it’s wrong to do so.

Stay tuned for tomorrow’s “Spotlight Symptom.” I hope this information will help you when you visit your doctor, seeking treatment and a better quality of life.

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*I am not a doctor. This information is for educational purposes, and is based on my own experiences. Seek medical attention for this or any other symptom.

 

 

 

Sunday Reflections from Another Patient

Hello Warriors;

I have the great pleasure to share the thoughts of my friend, who is also a patient, and patient advocate.

Screen Shot 2016-04-10 at 8.21.52 AMMrs. Linda Radach and I met at the USA Patient Advocate Network workshop in D.C. last year, underwritten by the National Center for Health Research and the Patient-Centered Outcomes Research Institute (PCORI). Screen Shot 2016-04-10 at 8.21.37 AM

You know when you have the feeling that you’ve known someone forever, but you’ve only just met? That is the way I feel about Linda. Our friendship took mere hours to bloom, partly, I suspect, because she is a type of fertilizer for the soul.

Linda was injured by a failed hip implant, and she has suffered greatly as a result. Still, though her spirit is weary at times, she leans upon her faith in Christ and the Lord of the Bible for wisdom and strength. She has allowed me to share her faith and source of healing in a poem she wrote, Captured Free.

Scripture inspires her life and her writings. She has offered a collection of her thoughts and expressions of her pain in scripture here: Healing Worship – Lenten Study Notes. As a true believer, she runs further into the wisdom of God, so freely given to all, even in her suffering. I hope her words bring you comfort and serve as a salve for your aching soul. I know the many conversations we’ve had were powerful for me and healed some of the broken pieces in my soul. In the realm of human suffering, we are all alike. We all experience it in different ways, but suffering can bring those who sing, in spite of their trials, together – to make a beautiful noise to the Lord who hears our cries.

Here is a beautiful song to listen to, as you read Linda’s words and meditate on them.

Lord, Hear My Prayer

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“Captured Free”

 

Songbird sits, quiet and still

No warble or whistle, no song or trill

Once free to fly, with songs soaring high

On the perch where she sits

Her soul wooden and dry

 

The view from her cage – dark and drear

No light or shadow, only shades of fear

Dreams shattered

Heart tattered

Pain has silenced her praise

 

There must be a way to regain her song

But night after night the silence grows long

Freedom and joy – mere memories now

Still, faint though it be, hope wonders how

A melody stirs in the darkness

 

Slowly light dawns upon the small locked cage

Revealing the way known to the wise and the sage

In this new morning she would take a chance

To free her soul and rejoin the dance

Humming the melody of the darkness

 

Imperceptible at first, the cage doors released

Giving flight to her wings as imprisonment ceased.

Tearful, yet growing stronger, her song she raised

Offering up a sacrifice of praise

Giving thanks for the limitations of her life in the cage.

 

By Linda J. L. Radach

November, 2012

 

Look for these beautiful songbirds, and remember the Lord’s word.

He cares for you.

“Indeed, the very hairs of your head are all numbered. Don’t be afraid; you are worth more than many sparrows”. – Luke 12:7

“Even the sparrow has found a home, and the swallow a nest for herself, where she may have her young— a place near your altar, Lord Almighty, my King and my God.” – Psalm 84:3

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NCHR’s Patient Advocacy Workshop: What I Learned

Hello Warriors;

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A snapshot I took of a beautiful vigil held at the Rochambeau Statue in Lafayette Square in D.C. after the Paris attacks.

This past week/weekend, amidst the worldwide panic and sorrow over the terrorist attacks in Paris, I attended the National Center for Health Research’s second Patient Advocacy Workshop in Washington, D.C. It was strange to be there under such uncertain circumstances. I couldn’t help but worry about if one of our nation’s capitol cities, even D.C., could be next. Thankfully, that was not the case, and all of us returned to our homes safely, despite concerns at the three D.C. airports: Several People Removed from Spirit Airlines on flight departing BWI.

 

 

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Fellow Patient Advocates at the NCHR Workshop

I felt at home, as I was surrounded by 30 or so patient advocates; individuals just like me, who advocate for a loved one, or by their own injuries, effort daily to raise the public’s awareness about the breadth and depth of medical harm. Many of these folks touched my heart. Like all of us, they each struggle to comprehend how so much harm has befallen so many and has come from the very institutions meant to promote good health and protect and preserve health as stakeholders in the health of our nation.

 

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If you are mesh injured, and you don’t think this post is for you, keep reading.

Patients and advocates came from all corners of the nation for this conference: Hawaii, Pennsylvania, California to Tennessee; and everywhere in between, including Texas! Each attendee was invited for differing healthcare concerns, but we were all there for the same purpose: To unite as advocates who are committed to bringing real-world patient voices to industry and government.

After breakfast Friday morning, we began with a test to gauge our current knowledge base and understanding of the FDA and its regulatory practices. We took a follow-up test at the end of the program to gauge what we learned from our training sessions. I don’t have my results yet, but I promise to share them once I do!

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Diana Zuckerman, Ph.D. and President of the National Center for Health Research AND the Cancer Prevention and Treatment Fund

Our training began in earnest as we learned the ins-and-outs of the FDA and its regulatory policies from our host and the founder of the National Center for Health Research and the Cancer Prevention and Treatment Fund, Diana Zuckerman, Ph.D. Dr. Zuckerman has a lengthy career as a scientist and researcher, as a faculty member at Vassar and Yale, and as a researcher at Harvard. Her work on Capitol Hill has ranged from Congressional staffer to AAAS Congressional Science Fellow and former senior policy advisor to First Lady Hillary Rodham Clinton. She has spoken dozens of times before Congress, federal agencies, state legislative committees, and even the Canadian Parliament! Formally trained in epidemiology and public health at the Yale College of Medicine, her work at NCHR now focuses on creating a stronger FDA. She serves on the federal Medicare Coverage Advisory Committee and on the board of directors at The Reagan-Udall Foundation and the Alliance for a Stronger FDA.

We then took time to introduce ourselves, our areas of interest, and what we hoped to gain from our attendance and training. Those moments were some of my favorites. That time gave me hope, because there are so many individuals who have made great strides in their advocacy. It reminded me that the possibilities for our mesh-injured community are endless. It renewed my hope in our shared cause. As is most often the case, it is the individual human being who has the capacity to make the most significant changes for good. I am reminded of the famed quote by author, seeker, academic, anthropologist and all-around troublemaker, Margaret Mead, who said,

“Never believe that a few caring people can’t change the world, for indeed, that’s all who ever have.”

I met more than a few caring people at the workshop.

I met a man who suffers from Ataxia; a congenital, degenerative neurological disorder that progressively affects coordination, speech, and swallowing. It must have required enormous effort each time he spoke, but I am forever changed by the confidence with which he uttered each word. Unafraid to ask for help, as he should be, he introduced himself and offered, “If you don’t understand what I say; ask me to repeat it.” What a powerful message, one from which we all can learn. Find out more about Ataxia from The National Ataxia Foundation, established in 1957, and dedicated to improving the lives of persons with Ataxia through support, education and research.

I met parents who have lost their young adult daughters to the often downplayed, lethal risks associated with hormone-based contraceptives. These parents have taken action; not because someone told them to, but because they want to honor their daughters’ legacies and raise awareness, with the hope that they will prevent others from experiencing the devastation of losing a child. Their heartbreak was so palpable that it was like another advocate in the room. Many people, from all walks of life, say that there is nothing in life so painful as the loss of one’s child.

Richard and Dianne Ammons honor the life and loss of their daughter, Annie, to YAZ, a drospirenone, hormonal contraceptive. They raise awareness through their Letters To Annie website. Other advocates Joe (www.birthcontrolsafety.org) and Dru (www.birthcontrolwisdom.com) honor their daughters’ legacies and raise awareness about deadly blood clots associated with the Nuva Ring hormonal contraceptive device.

I met a charter member of Washington Advocates for Patient Safety, who though injured by a metal-on-metal hip implant herself, still advocates for others, even as she continues to suffer daily. In fact, The Center for Medicare and Medicaid Services,  just yesterday, announced their Comprehensive Care for Joint Replacement Model (CJR), saying,

Hip and knee replacements are the most common inpatient surgery for Medicare beneficiaries and can require lengthy recovery and rehabilitation periods. In 2014, there were more than 400,000 procedures, costing more than $7 billion for the hospitalizations alone.”

I met a man, now disabled for life, who was implanted with a spinal medical device used off-label by his surgeon. With access to the best care in the world and a powerful family to boot, not even he could escape the long arm of medical harm. His story speaks to how overwhelming the issue of medical device harm has become. It does not discriminate. 

I met a U.S. veteran from Austin, TX who was exposed to Agent Orange during his service to our country and has suffered and survived prostate cancer as a result. He now facilitates a Prostate Cancer Support Group, a group that I imagine my husband’s grandfather, a fighter pilot in the Vietnam and Korean Wars, would have benefited from greatly. 

I met mothers whose children suffer from rare diseases, and for which it is so difficult to raise awareness (not so different from mesh injury in that regard). I met many women who suffer from rare heart disease, yet are stigmatized. We agreed that no one deserves to be judged by any health condition, especially the number one killer in the U.S. for both men and women: heart disease.

I met a woman from Essure Problems who was involved with the recent FDA public hearing addressing Bayer HealthCare’s Essure System for permanent female sterilization and the adverse reactions associated with the permanent contraceptive device. Somewhat shy and reserved, it was hard to imagine that she recently spoke to the FDA. I point out this fact, because it is proof-positive that anyone can be an agent of change. All that is necessary to become an influential patient advocate is that you care deeply about others, and that you’re willing to push through any fear that could hold you back or keep you silent.

IMG_1167Two representatives from the FDA gave a brief presentation to explain how patient advocates can become involved in patient-centered policy at the FDA.

We also heard from PCORI, the Patient Centered Outcomes Research Institute  and how, in just three short years, the newly-formed organization has funded many research projects with the aim of measuring outcomes which relate to the patient’s perspective and well being. We learned that, far too often, research in healthcare is designed to test and measure factors that may impact the patient, but may not always be designed to assess the benefit of any given outcome to the quality or quantity of patients’ lives.

Susan Molchan, MD, a decorated physician and scientist provided an eye-opening perspective. Having worked in private practice, as a staff psychiatrist for the National Institute of Mental Health (NIMH), and as a medical officer at the FDA, she is a walking library of experiences! She has returned to clinical work and writing in her areas of interest: healthy aging, health literacy, and conflicts of interest in medicine. She now serves as attending psychiatrist at the Walter Reed National Military Medical Center in Washington, D.C. She spoke to us in her capacity as a member of the board of directors for the National Physician’s Alliance, an organization which champions “The Unbranded Doctor,” and the core values of the medical profession that many would say have been lost: Service, Integrity, and Advocacy. I’m glad to know the NPA exists, for surely there are many physicians who care deeply about the core values of their chosen profession and realize that so much trust between patients and physicians has been broken. It’s a great resource for us, as patients and advocates, too.

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Desirée Walker, two time Breast Cancer Victor

We heard inspiring talks by longtime patient advocates like Desirée Walker, who having survived breast cancer twice, refers to herself as a “Cancer Victor.” Desirée works with the U.S. DOD-funded breast cancer research program and has made such an impact for good towards the search for a cure.

 

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Tim Horn, 20+ year survivor of HIV and HIV/AIDS patient advocate

Tim Horn, HIV Project Director at the Treatment Action Group, reminded us that the long journies of HIV/AIDS patients and advocates, who came before us, can serve as an example for all of us. Though the road is long, significant change can be brought about by our long-term commitment and the continued courage to speak out, even through setbacks and progress that seems to come far too slowly for those who are suffering and dying.

The lives of these patients and advocates and the stories they tell are just like ours.

We are most certainly not alone in our fight against the epidemic of preventable medical harm and the diseases, common to all, which require the FDA to get involved in service of America’s public health. We even share the hurt that all patients suffer under the guidance of a public health system that can be much too bureaucratic to mobilize in the face of infectious disease. We’re experiencing that very problem now, as the irresponsible use and administration of antibiotics continues to hasten antibiotic resistance.

In sharing these insights, my hope is that no person in our community would feel abandoned or alone. We can connect to others through our shared suffering, but once connected, we can live our lives alongside one another to create a “new normal” which can draw us out of the isolation and loneliness of chronic illness. Suffering is suffering. We all experience the common feelings of anger, loss, regret, sorrow. . . and hope. As Desirée says,

“He who has health has hope. And he who has hope has everything.”

Though many of us have lost a great deal of our health, and we grieve that loss; we can also choose hope, for we still have health.

Thank you to the staff members at NCHR and PCORI for allowing us to learn from one another and together, as individuals working in concert, help us to gather our voices so that each of us may be heard louder still.

And for those of you who actually read this far, here’s a funny for you. If it’s one thing I think we all agree on, it’s that humor is often the best medicine, and sometimes the only medicine for our broken bodies and hearts.

~ For my mother, whom I love with audacious action. ~

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A DOCTOR A DAY KEEPS THIS STUDY AWAY/Dr. Ty Erickson & Lisa Boozer, CRC, of Rosemark Women Care Specialists in Idaho

Hello Warriors;

As I write what is now the fourth blog, citing “a-doctor-a-day” who is participating and actively recruiting for a study that would implant NEW WOMEN with Coloplast’s Restorelle Direct Fix mesh product, I realize that my blog posts could come across as a “witch hunt” of sorts. This notion couldn’t be further from the truth.

I have a genuine and deep concern for the 900 women who would be participants in this study if it proceeds, and I am trying to engage physicians. I reference fact-based evidence, cite published scientific research, and offer these doctors information about the FDA warnings regarding mesh implant, especially for POP.

If you are a mesh-injured patient, you are keenly aware that many of your physicians ARE NOT AWARE of the FDA warnings but became aware when you, yourself, brought it to your physician’s attention.

My letter to the FDA regarding: Restorelle® Mesh Versus Native Tissue Repair for Prolapse

My letter to the FDA regarding: Restorelle® Mesh Versus Native Tissue Repair for Prolapse

View my letter to the FDA (left) and CLICK HERE TO READ MY BLOG ABOUT IT, citing specific reasons with third-party sourcing. You may want to use some of this information when you contact physicians recruiting for this study.

In addition to my posts here, I am calling and/or emailing EACH doctor/lead researcher personally. I IMPLORE YOU TO DO THE SAME.

I want our community to engage in a conversation with these folks to explain WHY THIS STUDY IS FLAWED IN DESIGN AND IS UNETHICAL.

I AM NOT MERELY “EXPOSING” DOCTORS OR TRYING TO HARM THE REPUTATIONS OF THESE FOLKS. I am trying to start a dialog, so that our community’s voices are heard, and so that these doctors know how large is our community of severely injured people.

To that end, today’s doctor to call/email is:

Dr. Ty Erickson and his colleague Ms. Lisa Boozer, CRC, of Rosemark Women Care Specialists.

Rosemark Women Care Specialists
Idaho Falls, Idaho, United States, 83404
Contact: Lisa Boozer, CRC    208-557-2981    lboozer@rosemark.net
Principal Investigator: Ty Erickson, MD, FACOG
Dr. Ty Erickson, a physician actively recruiting patients for the Coloplast Restorelle Direct Fix vs. Native Tissue Repair.

Dr. Ty Erickson, a physician actively recruiting patients for the Coloplast Restorelle Direct Fix vs. Native Tissue Repair at Rosemark Women Care Specialists in Idaho.

As a gentle reminder:

When/if you call, start by listening and asking the doctor/liaison questions. Try to open an honest dialogue about why you think the study has the potential to seriously harm women, and why this harm is PREVENTABLE, since there is already a population of implanted patients to study.

When you call, be as clinical and brief as possible. Our stories are SO PERSONAL and of SUCH DEVASTATION, that we can be tempted to rely on any ear to listen to the horror of our stories.

I am suggesting that you call these physicians in an effort to help the patient population who is being recruited. Lean into your community for social support for your own injuries and for coping with the significant loss of quality of life that you endure.

The goal is making these calls is to INFORM physicians about the PREVENTABLE harm this study will cause. 

Here are some questions you might start your conversation with:

  • You might first start by asking listening. Document his/her answers.
    • WHY, doctor, are you participating in this study?
    • HAVE you seen the research proving mesh is unsafe as a permanent implant?
    • ARE you aware of the adverse reactions of the patients you have formerly implanted? Would you follow up with them and ask how he/she is doing 3+ years after implant?
    • ASK – What’s in it for you doctor? Are you aware of the legal implications?
    • ASK – Are you being personally compensated for this study and in what ways?
    • ARE you aware of the liability you face In federal Bellwether trials, some physicians who’ve testified no longer practice. Are you aware that significant liabilities may be of great future burden to you and your practice?
    • EXPLAIN the reasons you do not want this study to proceed.
    • EXPLAIN to them that your intention is to inform, give he/she more resources and information to have the chance to CHOOSE to halt participation in this study.
    • BUT, if he/she will not take your call seriously (or take your call at all) you will take other actions, like contacting your state’s AG.
    • INFORM he/she that you will use your voice online to dissuade women from becoming patients of their practice.

Below is a list of physicians/facilities I have already contacted. If you have not yet contacted one or more of these physicians, please click on the link for contact information, and please contact them immediately.

If WE do not make our voices heard, who will? We are PLAN B, and there is NO PLAN A.

Dr. Babak Vakili & Jennifer Mann, BSN RN: Delaware’s Christiana Care Health System

Dr. Sherry Thomas/Agoura Hills California

Dr. Arturo Menchaca/Paris Community Hospital of Paris, IL

#TMWF – OUR BIG FAT GEEK GIVEAWAY!

stanford_medx_logo_V4_finalIt’s no surprise that patient data was a big topic at Stanford #MedX this year, especially since the Affordable Care Act (ACA) mandated implementation of the Electronic Medical Records (EMR) system, sometimes also called Electronic Health Records (EHR), and the deadline for implementation was in September for most healthcare entities.

THE BAD NEWS:

No one that I came into contact with at the conference posed a solution, even with the EMR mandate, for sharing information seamlessly between physicians and with patients, though most everyone agreed: the EMR is not the be-all, end-all solution.

Many states have laws which grant ownership of your personal health data to the doctor or institution. Conversely, many states have no laws at all about who owns your medical records. Check out the map below, and read this blog post for more info: Stanford #MedX #WrapUp 2015 – Three Truths, No Lie

  • If you live in a grey state, there are no legal grounds for facilities to keep your medical records from you.
  • If you live in a dark blue, green or yellow state; Do not fret. Just because your doctor or institution owns your data, doesn’t mean that YOU DON’T ALSO HAVE THE RIGHT TO OWN A COPY OF YOUR MEDICAL RECORDS.
  • If you live in New Hampshire, count your blessings, and call yourself lucky to be among the 1.3 million Americans under a state law that mandates your personal ownership of all medical records, specifically and outright – no questions asked.
Do you own your OWN medical data?

Do you own your OWN medical data?

THE GOOD NEWS!

I am excited to announce that #TMWF is donating ONE HUNDRED AND FIFTY (150) #TMWF Medical USB Bracelets to patients injured by mesh!

**** Woohoo! Yippee! ****

PLEASE COMPLETE THE FORM AT THE END OF THIS POST TO RECEIVE YOUR FREE TMWF USB MEDICAL RECORDS BRACELET. 
We will be shipping over the next two weeks! *Due to the limited quantity, we will donate on a first-come, first-served basis. Limit one bracelet per household please. 

↓ Look how pretty! ↓

Your_8GIG_Medical_USB_Bracelet

“Necessity is the mother of invention.” ~ Plato

How do we, as patients, solve our own problems in the face of an incompetent healthcare system? WE ADAPT AND SOLVE.

Waaaayyyy back when – in 2011 

Binders - Much too binding!

Binders – Much too binding! 

I began carrying my mother’s medical records in 3-ring binders. I quickly learned that interoperability and sharing between doctors was practically non-existent. As the records grew, so did those binders, and the solution quickly became unsustainable, as I lugged huge binders around from doctor to doctor, hospital to hospital.

So I adapted.

I began scanning in documents and images, recordings and notes – keeping all records on my computer to access at a moment’s notice if a doctor needed information that had not been shared by another provider on my mom’s care team. Housing the data on my computer was a great back-up plan, but during the standard 15-minute doctor’s visit, I was unable to access and, more importantly, TRANSFER information to the doctor as quickly as was needed.

So, I adapted again – circa 2012.

Plastic & thin metal casing made for an unreliable USB stick.

Plastic & thin metal casing made for an unreliable USB stick.

I began carrying an encrypted USB stick on my keychain including all Mom’s medical data, with the back-up on my computer and paper print-outs in my binder filing system. All that together was a great solution for a while, but the plastic and thin-metal casings on my inexpensive USBs simply did not hold up to the wear and tear of nearly constant usage and travel. The USBs wore out quickly, and I was in constant fear that the data was in danger of becoming corrupted.

So I adapted again – circa 2013.

Aha! This USB works! Sturdy & Stylish. Nearly two years old, and still going strong!

Aha! This USB works! Sturdy, stylish & still going strong after 2 years of wear!

I decided I needed to literally wear my mother’s medical records somehow. At first I made my own sort-of prototype, bracelet-USB-thingy-ma-bob, and while it worked, my prototype didn’t hold up too well. I began searching for a reliable, wearable USB, which was a challenge, but I found what has been the best answer yet: my sturdy & stylish, stainless steel & leather 8 Gig USB bracelet. I wear it daily, and it has held up for just shy of two years now. I have secured it with encryption software, so in case of loss or theft, the USB is useless to anyone else, and my mother’s personal information is still safe.

Now I wear two bracelets – one for Mom and one with my own data.

The #TMWF Yes M.A.M. Market Medical USB Bracelet - in black

The #TMWF Yes M.A.M. Market Medical USB Bracelet – in black

If we’ve run out of freebie bracelets before you have the chance to sign-up, you can buy the bracelet that I use from #TMWF’s Yes M.A.M Market. The bracelet from the market is a slightly different design (black, with different double-strand design instead of a wrap-around design) but it is just as stylish, sturdy, and useful!

*A word of advice – Some doctors have received my medical USB with great enthusiasm and gratitude. Other doctors have told me it’s illegal or against policy for me to share information with them via the USB. In all cases when I was told that, it was untrue. If your doctor is resistant to receiving information you provide him/her via the #TMWF Medical USB Bracelet, or in any other form, I suggest trying the following steps to ADAPT and SOLVE.

  • Offer suggestions
    • “Doctor, if you can’t download the information from my USB to any computer in your office, I’d like to email the information to you. What is your email address?”
    • “Is there an assistant with whom I can work to transfer the information from this USB to your office computer(s)?”
    • Bring hard-copy, paper print-outs of the most important information on your USB to each appointment. Insist that the paperwork be added to your medical record.
    • Upon leaving, ask for a copy of the doctor’s notes that day and/or a copy of any imaging or lab test results. If they say no at first, push the issue a bit. After all, it’s data from YOUR body.
    • If you don’t have a scanner at home or work that you can use; take your paperwork, images, and lab results to a FedEx-Kinko’s or similar business that can scan your records and place them on your USB. Of course, using these services will require payment, but you may find a helpful employee or sympathetic manager who is willing to lower the cost.
    • Ask for help along each step of the way. Tell the doctor/hospital or business that these scans are necessary for you to keep life-saving medical records up-to-date and/or that you are on a fixed income or Medicaid/Medicare. It never hurts to ask!

ORDER YOUR BRACELET BY COMPLETING THE BELOW FORM

#TMWF/TMW will NEVER share your information with anyone for any reason.

A Tribute to Ms. Linda Batiste: Mother, Grandmother, Nurse, and Mesh Pioneer

Linda_Elizabeth_Batiste IMG952180To Our Mesh Family and Mesh Warriors:

Please share this post with your family, friends, and community.

My friend, and MESH PIONEER, Linda Batiste has passed away. She went to be with her Savior Saturday morning.

If you are well enough, and close enough to attend her memorial, it would be a generous support of her, her family, and our mesh community.

Ms. Linda Elizabeth Batiste passed away on Saturday, August 8, 2015.

She would have been 66 on October 29.

Viewing and Family Reception – 10:00 a.m.
Memorial Service – 12:00 Noon
Chamberland Funeral Home
333 West Ave. D
Garland, Texas 75040

Graveside Service to Follow:
Lincoln Memorial Park
8100 Fireside Dr.
Dallas, Texas 75217

Ms. Batiste was a woman with a sturdy, loving character, who always maintained her faith and believed with all her heart that God’s will for her life was for her good and His glory.

She was a mother, grandmother, great-grandmother and friend to many. She is survived by her son James Clinton, her daughter Lydia Elmore, grandchildren James Carheel, Carrie Phillips, Sara Gaston, Tasha Clinton, Joshua Clinton, Linda Elmore, Terrance Jefferson, James Elmore, Naddeah Clinton, and Anthony Elmore, and host of great-grandchildren.

Ms. Batiste was a pioneer for all women suffering from mesh-related complications. Enduring pain and while walking with a cane, Ms. Batiste attended almost every day of her landmark trial against Johnson and Johnson last March and April. Though she lost the battle for her life; she died knowing that she had won the war. Johnson and Johnson has appealed her verdict, but 12 jurors in a Dallas courtroom granted justice to her family and her.

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Grandson, Joshua Clinton; Ms. Linda Batiste; and Aaron Horton – at an event to honor Ms. Batiste after her trial concluded.

Her favorite flower was The Sunflower, and her favorite color was purple. The 23rd Psalm was her favorite scripture, and she recited it often.

Please send words of encouragement or other sentiments to:

Chamberlain Funeral Home

On Behalf of Ms. Linda Batiste

333 West. Ave. D

Garland, Texas 75040

The family is in need of donations for food during this time and a headstone. Please click on the link below to donate for these purposes. The link has a tracking number, and 100% of the proceeds will go to James Clinton (her eldest son), her grandchildren and her great grandchildren. You must be logged in to the site to donate, though you may do so anonymously.

https://themeshwarriorfoundation.nationbuilder.com/linda_batiste

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2-day shipping for Mother’s Day! 20% OFF @ TMWF

Hello all;

It’s not too late. If you order today, you can still receive 20% OFF any color of our #TMWF Mesh Awareness Bracelets!

Click to order from the Yes M.A.M. Market!

These are handmade – leather, stainless steel, and glass. The bracelets are a beautiful accessory, and are also a great conversational piece for those who are mesh injured.

With interchangeable glass buttons, one bracelet becomes two!

Order one for someone you love today! 100% of proceeds benefit #TMWF, the only non-profit serving the mesh-injured and their family members!

#TMWF's Mesh Injury Awareness Bracelet

#TMWF’s Mesh Injury Awareness Bracelet

#HatsOff to my fellow WeGo Writers! 5 Blogs I Missed! #HAWMC

Our wedding invitation from 11 years ago! Yep, I did that - scarlet red! It was BEAUTIFUL!

Our wedding invitation from 11 years ago! Yep, I did that – scarlet red! It was BEAUTIFUL!

Tomorrow is my wedding anniversary (11 years!), so I am finishing up my WeGo Health Activist Writer’s Month Challenge (#HAWMC) today! I am thrilled that I was able to participate and so grateful for a big ‘ol wild internet, full of people, like me, who want to make a difference in this life by writing and speaking up in support of a cause, condition, disease, or in support of a better way of journeying towards personal health and a more caring, empathetic, knowledgable and healthy world for all of us.

#HatsOff to my fellow writers for a meaningful month of writing and for crossing the finish line!

For my last entry, I am going to recap by writing an omnibus blog including the prompts I missed. I am proud of my commitment to stick it out for the long haul, but I did miss some days of writing!

Here’s my way of making up my homework! 🙂


April 10th Prompt – Comfort Food

We’re not all 5 star chefs, but we all need to eat! Tell your readers how to make your favorite dish. Does the recipe hold a good memory for you? Is it the act of cooking itself that brings you joy, or the people that come together to eat it? #HAWMC

My family loves to cook. My father’s side of the family has taught me how to cook and the joys of sharing a kitchen and table with those I love. My grandmother taught me that every single meal is a celebration. Breakfast, lunch, dinner – finger sandwiches or foie gras, she’d set the table with the entire inventory of proper utensils, beautiful placemats, beautiful dishes, cloth napkins, serving dishes and their attendant details – serving utensils, trivets, and decorative displays. I lost my Grandma Honey my senior year of high school. I miss her often and know she would have adored mine and my sister’s families. I imagine her cooking for the hoard of us and loving every minute of it. My dad picked up her love of and talent for cooking, and between both of them, I learned all I’d ever need to know to be a home chef. Since my dad ended up owning restaurants as his career (That’s how much the Johnson family loves food!), I learned classical styles of cooking and restaurant-quality fundamentals of cleanliness and kitchen protocol. I am so grateful for my grandmother and my father’s teachings. I did not know until middle age that I had skills that many people pay to learn – knife skills; order of operations; which pans to use for what; basic techniques like how to sautèe; how to make a roux; how to tell when a steak is cooked to medium, medium-rare or well-done; how to caramelize onions; and the difference between a fine chop, dice and a julienne. I knew these terms in elementary school. Amazing actually now that I think about it.

My dad's biscuits and gravy! Gravy is best made in a seasoned cast iron skillet! This skillet has been handed down through our family to me! Yay me!

My dad’s biscuits and gravy! Gravy is best made in a seasoned cast iron skillet! This skillet has been handed down through our family to me! Yay me!

In my family we have a funny way of talking about our all-time favorite comfort foods. We call it the “death row meal.” I know it’s kind of morbid, but morbid things are sometimes pretty funny. Anyway, we ask one another frequently, “If you were on death row, and you had to choose your very last meal, what would it be?” Some of my family members say extravagant things like steak or lobster, accompanied by a fine, red wine.

Proof of proud redneck status and life long love of GRAVY!

Proof of proud redneck status and life long love of GRAVY!

Nope, not me.

I’m pretty down home. My death row meal is my dad’s breakfast. Like any good Texan, one of the first “complex” dishes I learned to make was cream gravy for biscuits. Yep, seems pretty trite, but that’s my death row meal. My dad’s homemade biscuits with cream gravy, fried potatoes, scrambled eggs topped with cheddar cheese (or Migas – a Mexican dish with eggs) and bacon, yes, bacon. That is how red this neck is. 🙂

April 14/ “I feel best when…”

Write about moments you feel like you can take on the world. Where, when, and how often does this happen?
 #HAWMC

Wow. The last year has been learning about how to manage that “taking on the World” thing. We all have limits. Hashimoto’s Thyroiditis has taught me to ask for help in taking on the world! 🙂 I feel we can take on the world when we’re surrounded with those who love us and want us to succeed. I feel I can take on the world when I’m in a cooperative environment of good folks who have the same goals. I feel like I can take on the world when people put aside their own egos in order to help others and be part of a successful team that helps others. I feel I can take on the world when I get a phone call from someone in our community who has benefitted from the work of the foundation I built, The Mesh Warrior Foundation for the injured, www.tmwfoundation.org. I feel I can take on the world when people “get it,” when someone understands the work I’m doing and why I am trying to help at such a feverish pace. I feel I can take on the world when someone says, “Thank you.” All that said, I’ve learned that it’s wise to ask for others to help, for no one can take on the world alone!

TMW_line_art_color_logo

April 15/Get Excited!

What revs up your internal engine? When you see, hear, feel this it gets you excited and ready to face what comes next. Tell us what it is! #HAWMC
Health Activists Need a LION'S HEART!

Health Activists Need a LION’S HEART!

We also have to develop Alligator Skin!

We also have to develop Alligator Skin!

When I see, hear or feel AT ALL, I get excited and ready to face what comes next. I’ve learned that the trick to being a good Health Activist is growing Alligator Skin but keeping a Lion’s Heart. This world is brutal sometimes, and as we all know, it doesn’t stop for anyone – sick or healthy. I’ve had to learn to take the hits (that keep on coming) by growing a thick skin, knowing who I am, and retaining a tender heart that will take on anguish in order to continue to bravely press forward without fear of doing good. When I feel that I’ve hit the mark, keeping a tough skin, but remaining tender despite a brutal emotional beating by life, that’s when I’m most invigorated!

April 16/Life Goal

What’s one thing that your 10-year-old self thought you would do? Can you still do it? How would you approach it to make it happen? #HAWMC

My life goal is pretty simple. It took me a while to learn how to articulate it, but at 10 years old, 20, and 30, it’s always been the same, and it’s fairly simple at its root.

never-waste-your-time-dream-hampton-quotes-sayings-picturesI do not want to waste my life. I want to be useful.

In my 20s, I was terrified that I would waste my life on meaningless things – activities, passing the time with indulgences, forgetting what is important in life. I wanted to find a way to do good with my life, and I wasn’t sure how to go about the task.

As a child, my life was very dynamic, and I always felt a sense of purpose. I started working at my father’s business when I was 14, and I had a rich life of work and play. I held leadership positions on my sports teams; I had plenty of friends; I excelled in school and enjoyed learning; I became a Christian when I was 13. All of that gave me a sense of purpose. College was a time of great personal gains – discovering the joys of life; meeting different types of people; living in a different city; and, of course, a rich inner world of constant learning. Some classes were exhilarating; some were crazy hard; some were dull, but I finished with good grades and a diploma! Whoop! I cherish my college education.

In my 20s, I thought my vocation would define me. I had a hard time breaking out of the monotony of my job. After the intensity of my senior-year college classes, I had a hard time with a “corporate” or “9 to five” type job, which, surprisingly, required little thinking. I had a hard time NOT identifying my entire being with what I did for a living. This, coupled together with some hard life lessons, ensured my 20s were a difficult time of soul searching; trial and error; mistakes and missteps. As I matured, I realized that a vocation is simply a way to EXPRESS life goals, a means to use my skills to earn money, not something to define my whole being. With that realization, I became involved in volunteering in many capacities, and by my late 20s, I had learned to lead small groups of women; I had mentored young adults; my husband and I had mentored newlyweds and folks who’d been married longer than us but needed counseling. I thrived in this environment. I felt useful. I learned what made me tick, how I’m wired. I am Myers Briggs ENFP; I’m the quintessential Aquarian; I’m more of a right brainer than a lefty. Now in my 40s, I’m hitting my stride. I know myself. I know my life goals, and I know I am not wasting my life, and that I am useful – useful to my husband, my family, to those in need, to my mesh-injured community and family of chance, to myself and to my God. That is my life’s goal and really all I’ve ever wanted.

April 17/Health Tagline

Give yourself, or your patient experience a tagline. Grab attention with your slogan. Make sure it’s catchy!
#HAWMC

Oh holy moly. . . taglines. I have lived my life with taglines, deadlines, cutlines, ad lines and bylines. A career of almost twenty years in the disciplines of marketing and advertising has taught me about all sorts of lines. I actually always loved writing lines of copy, when I could. Though I was most often in a management role, managing others who wrote copy, it is still one of my very favorite parts of the creative process. Creating a tagline is not just about a pithy statement; it is one of the most important ways to develop the voice of a community or in the business world, a brand. When I created The Mesh Warrior Foundation for the injured, I knew that our community needed a voice – a singular message. There are so many people helping and fighting for those who are mesh injured, but when I began to learn about my mother’s injury and about the community that I was becoming a part of, I sensed a lack of voice. None of us had yet figured out how to explain mesh injury with simplicity and humanity, for it’s a complex injury, illness and it’s also a political injury. It’s controversial by nature because the injury is due to a failed medical device called #transvaginal polypropylene mesh. Many of the profoundly injured are involved in litigation, which makes EVERYTHING so much more difficult.

With Twitter’s advent of the hashtag phrase, taglines have become a ubiquitous part of everyday life on the internet, whether people know it or not. Phrases not already in use are hard to come by, and sometimes, it’s best to use an already-in-use tagline (if not copyright protected) because it can draw people from any walk of life, even those, maybe even especially those, not familiar with #polypropylene mesh injury. This injury can happen to anyone and has. The wider net we cast, the better.

The phrases, in the form of a tagline, I’ve most often used to define our community’s plight is #NotOneMore, because the harm caused by transvaginal mesh is 100% preventable. It is medical error, greed and arrogance at its worst. Educating those who’ve not YET been injured is just as important as aiding those already injured. This grass-roots video that our community made is a good example of our tagline and hashtag phrase, #NotOneMore.

Reflections of a founder, health advocate and patient

Reflections of a founder, health advocate and patient

This is a day to reflect. The WEGO Health family is reflecting on the inspiring and tireless work Health Activists do every day while we, in turn, reflect on our personal journey.

wego_healthWeGo Health asks, “What are your thoughts and hopes for the future?”

As the founder of The Mesh Warrior Foundation (www.tmwfoundation.org), my thoughts and hopes for the future have become much more concrete and practical.

Last week, a mesh-injured woman cried out to cyberspace and left the Twittersphere to us, to wonder whether she’d wake up from a suicide attempt.

MY DREAM FOR THE NEAR FUTURE IS TO HAVE THE FUNDS TO CREATE A HOTLINE OF MESH-INJURED WOMEN WHO CAN BE THERE FOR HER AND THOUSANDS MORE LIKE HER.

The past few weeks, I’ve been hard at work to plan a fundraiser so the foundation can send a group of injured women to West Virginia in relative comfort in support of the woman who will undergo the next bellwether trial.

MY HOPE IS FOR DONATIONS TO ALLOW THESE WOMEN TO SEE A COURTROOM THAT MAY OFFER JUSTICE TO A WOMAN, AND IN SOME SMALL WAY TO EVERY WOMAN WATCHING, MOST OF WHOM WILL NEVER SEE THEIR OWN COURT DATES.

In the previous month, I’ve been developing a tee shirt for the foundation with my long-term friend partner in all things creative, Scott Springer of Skona Advertising in San Francisco – a tee shirt that women will be proud to wear that will make their “invisible injury” visible to others and help to give them a voice.

MY HOPE IS FOR ENOUGH MONEY TO BUY THE SHIRTS SO THAT I CAN SELL THEM TO HELP WITH THE FOUNDATION’S EXPENSES.

I’ve not been able to attend a trial in support of a mesh-injured woman since last year when I got to know the lovely, Ms. Batiste over her three week trial against Johnson & Johnson.

thyroid changeMY THOUGHTS ARE ABOUT HER. WHEN CAN I SEE HER AGAIN? I’M TIRED OF BEING SICK FROM HASHIMOTO’S THYROIDITIS. I WANT TO DO AND BE MORE FOR MY COMMUNITY. I WANT MY BEAUTIFUL HAIR TO STOP FALLING OUT.

My hopes and thoughts for the future are about IMMEDIATE relief and recognition for the women and men in this country, in your community who are suffering greatly.

MY HOPES FOR THE FUTURE ARE THAT MESH WILL BE REMOVED FROM THE MARKET AND THAT THE DOCTORS WILL STOP LISTENING TO THE MANUFACTURERS AND INSTEAD LISTEN TO THAT INNER VOICE THAT SAYS, “PETROCHEMICAL WASTE IN THE FORM OF A PERMANENT PLASTIC IMPLANT IS NOT COMPATIBLE WITH LIFE.”

My hopes and dreams are now inextricably linked with my own mother’s hopes and dreams.

I HOPE MY MOTHER CAN GET OUT OF BED TODAY. I HOPE I CAN SEE HER AGAIN SOON. I HOPE HER INJURY DOES NOT TAKE HER FROM ME TOO SOON. SHE’S ONLY 60 YEARS OLD.

Maybe Ms. Washington will help us.

Maybe Ms. Washington will help us.

My hopes and dreams for the future are practical, direct and achievable, so why won’t people listen? Have we not learned ANYTHING from the lessons of history?

I HOPE THAT TODAY, SOMEONE IMPORTANT ENOUGH WILL LISTEN TO ME, WILL TAKE THIS INJURY SERIOUSLY AND WILL HELP US STOP THE PREVENTABLE HARM, STOP THE MEDICAL HOLOCAUST.  #HAWMC

TO DONATE TO #TMWF, visit: https://themeshwarriorfoundation.nationbuilder.com/donate

Herta Oberhauser, who was a physician at the Ravenbrueck concentration camp, is sentenced at the Doctors Trial in Nuremberg. Oberhauser was found guilty of performing medical experiments on camp inmates and was sentenced to 20 years in prison. Nuremberg, Germany, August 20, 1947. — National Archives and Records Administration, College Park, Md.

Herta Oberhauser, who was a physician at the Ravenbrueck concentration camp, is sentenced at the Doctors Trial in Nuremberg. Oberhauser was found guilty of performing medical experiments on camp inmates and was sentenced to 20 years in prison. Nuremberg, Germany, August 20, 1947.
— National Archives and Records Administration, College Park, Md.