SUNDAY REFLECTIONS: When That Rough God Goes Riding

Harper Lee was once asked why she never wrote another book after To Kill A Mockingbird. She said, “I have already said everything I wanted to say.” Poignant, no doubt.

In this same way, another writer and musician said almost everything I’ve ever wanted to say to the pharmaceutical companies, their executives, their lawyers, their consciences (if any of them even has one, that he must be ignoring). . .

In. One. B-side. Song.

Best listened to with headphones, and the words in front of you, not the video, IMHO.

From Van Morrison’s 1997’s album, The Healing Game . . .

“Rough God”

Van Morrison

Oh the mud splattered victims
Have to pay out all along the ancient highway
Torn between half truth and victimisation
Fighting back with counter attacks

It’s when that rough God goes riding
When the rough God goes gliding
And that rough God goes riding
Riding on in

I was flabbergasted by the headlines
People in glasshouses throwing stones
Gaping wounds that will never heal
Now they’re moaning like a dog in a manger

It’s when that rough God goes riding
And that rough God goes gliding
There’ll be nobody hiding
When that rough God goes riding on in

And it’s a matter of survival
When you’re born with your back against the wall
Won’t somebody hand me a Bible
Won’t you give me that number to call

When that rough God goes riding
And then that rough God goes gliding
They’ll be nobody hiding
When that rough God goes riding on in
Riding on in

When that rough God goes riding
When that rough God goes gliding
There’ll be nobody hiding
When that rough God goes riding on in
Riding on in

There’ll be no more heroes
They’ll be reduced to zero
When that rough God goes riding
Riding on in
Riding on in
Riding on in
Riding on in

 

 

 

 

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

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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.

 

 

 

MESH INJURY – “Spotlight Symptoms”

Hello Warriors;

Today, I’m starting a blog series called, “MESH INJURY – Spotlight Symptoms.”*

TVMI encounter an alarmingly typical and recurrent problem when advocating for and with mesh-injured patients. It goes something like this:

  1. Mesh-injured patient develops a disturbing symptom.
  2. Mesh-injured patient visits his/her PCP or a specialist to seek diagnosis and treatment.
  3. Physician performs a physical exam, and says something like, “I don’t know what that is,” or I’ve never seen anything like this [symptom].”
  4. Patient is confused and bewildered and asks if there are tests that could be done or another doctor or specialist who would know more about the symptom.
  5. Physician says, “No,” and doesn’t perform any diagnostics to find out the underlying cause of the symptom (environmental cause, disease process, injury, or infectious pathogen).
  6. Physician prescribes medicine to mask or alleviate symptom(s) (e.g. topical creams for rashes, antibiotics for a suspected infection, maybe some other pharmaceutical to control pain or discomfort, or even an invasive or non-invasive form of treatment).
  7. Patient goes home still symptomatic, with no diagnosis, and with one or more pharmaceutical or other treatments to consider, which may or may not work, since the UNDERLYING CAUSE or UNDERLYING PATHOLOGY, which caused the symptom to manifest, was never studied in depth by the treating physician.
  8. Patient goes home and follows pharmaceutical regimen or advice for treatment.
  9. Pharmaceuticals and treatments do not alleviate symptom(s). Symptom(s) continue.
  10. Patient is left untreated and without a next step.

Paternalistic-vs-Patient-CenteredOftentimes a physician will refer to a symptom as “idiopathic,” which in layman’s terms simply means, “Who knows where it came from?” There is a responsible use of this term, but I see it used irresponsibly too often.

Some diseases are generally agreed to be “of idiopathic origin,” because no one in science can definitively identify an underlying cause. In this case, “idiopathic” is often part of the name of the disease or syndrome itself. Some examples are:

  • Idiopathic Thrombocytopenic Purpura (sometimes called Acute or Chronic ITP) is a bleeding disorder, in which a patient has abnormally low blood platelets, and thus their blood does not properly clot.
  • Idiopathic Hemochromatosis – is another bleeding disorder, in which an abnormal and dangerous amount of iron accumulates in the body’s tissues or organs, including the liver and lungs.

Both disorders are life threatening if left untreated. These disorders present with SYMPTOMS, and when doctors invest in diagnostic procedures, these diagnostic procedures, coupled with symptoms, lead them to a diagnosis, which then leads to a treatment or even a cure.

A serious problem arises when physicians use the word “idiopathic” irresponsibly. In all cases, any particular symptom or cluster of symptoms do originate from some cause, from something, from somewhere, and any doctor who does not search for the underlying cause of a symptom is negligent. “I don’t know,” would be a more accurate physician response in this situation, however; “idiopathic” sounds so much more, you know, medical and stuff. Odd or uncommon symptoms can often co-occur, simultaneously with other more salient symptoms, and when viewed together as a whole, the underlying disease process in these cases, can be more obvious, leading to a higher chance of diagnosis, or a more rapid diagnosis, which then leads to the correct treatment, to the best of the physician’s actual knowledge.

Puzzled male shrugging wearing lab coat

But, what if a patient presents with an idiopathic symptom that does not have a common accompanying symptom or cluster of symptoms that is easily recognizable to an average physician? In my personal experience, this situation is when physicians can get a bit lazy with the use of  the term”idiopathic.”

“Of idiopathic origin” is so much more dignified on a patient’s chart than:

“I have no friggin’ idea, but it’s not my problem, so I gave the patient some samples.”

So, has your physician ever told you, “I’ve never seen that symptom,” or “Your symptom seems to be idiopathic and will most likely resolve on its own.”?

If so, I’d love to hear from you.

Have you had the experience I describe above?device-transvaginal-mesh-edit

If you have, what was the symptom?

Did you ever get to the bottom of it?

Did the physician suggest diagnostic testing, or did you ask for such if he/she did not?

Did you find your doctors to be helpful in assisting you as you continued to pursue a cause, or did you find that your doctor quietly excused himself from your care, and left you to find some other doctor who might help?

Tuesday we’ll talk about the first of many symptoms which are commonly seen in mesh-injured patients, but for which doctors often say there is no explanation or that physician seems to have no drive to find an explanation.

With this series of blogs, I hope to highlight some very common symptoms, for which mesh-injured patients are turned away, left with no medical solution to pursue. Let’s use our collective knowledge as a community to help one another and to help those who don’t understand the realities of ongoing mesh injury.

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*I am not a doctor. This information is for education purposes only and is based on my personal experiences. If you have a symptom, please find a doctor who will help you identify and treat your symptoms.

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

bird-poster

April Fools

Hello Warriors;

I haven’t written to you in some time. Suffice it to say that the daily demands of life are sometimes overwhelming.

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Anyway, I have missed you, and I’d like to take the liberty, this April Fool’s Day, to remind people about who the real FOOLS are. MESH IS NO JOKE – not the commercials, not the litigation, and certainly not the deeply personal injuries. You all know that, but it’s my hope that our community’s message still presses into new audiences, into the mainstream discussion among media, and around the proverbial water cooler at work. Any person with even the faintest bit of familiarity about the realities and mind-blowing chain of harm in the conception, manufacture, and implant of mesh knows the physical damage that mesh causes, and the destruction and havoc it wreaks upon the physical body.

But what about ALL THE REST. The SO MUCH MORE. The WHEN WILL IT STOP PART?

What about the reality that still exists when the commercial ends, after the trial or settlement, after all the surgeries than can be done have been done, and all the doctors who can be consulted, have been consulted? Does the general public really understand what’s left of us after all of that unspeakable harm?

I think not.

MeshEndsNowInjury by mesh is a physically and sexually violent assault. And, it’s an assault that reoccurs, for some women and men; it’s a daily assault, the experience of being reinjured time and again. As with any assault, the injury is not limited to a physical injury.

Mesh is a violent tormentor. It assaults the emotions, the intellect, the heart, the soul, and marches right on to damage families, friendships, jobs, hobbies, and pretty much anything of value in life. It’s damned ruthless and relentless.

Mesh is a cruel teacher. In our daily living and experiences with mesh, we learn who to trust, and who not to trust. Through a mesh-colored-lens, the true character of the people in our lives is revealed. Those we thought to be stalwarts of strength crumble; those we thought to be our closest comforters, suddenly vanish; those we thought were “in our corner” have turned against us; those whom we, ourselves, have helped through life’s harsh realities, are somehow unable or unwilling to reciprocate when the roles are reversed, and this time, we have drawn the short straw.

This experience is paradoxical and surreal.

We also discover those we thought watched us struggle in silence now appear as angels of help and hope. Those we thought to be meek are now our greatest advocates. Those we would not have met, but for this mesh, and the family of chance borne from our shared experience in its grips, have become our most trusted confidants. And in some ways, our family of chance has now become our family of choice.

Mesh is a crucible. By severe test and trial, unlikely heroes emerge, as do inconceivable villains. This improbable combination of elements and characters has become a white hot furnace, from which only the purest substance of the soul emerges. A soul, refined and laid bare by force, leaves only a remnant of its most fundamental quality.

From the crucible that is Mesh Hell can come all kinds of souls. Which words you choose to describe the phenomenon matters not. Anyway you slice it, you’ll find three

An Overwhelming Beauty. . . a soul who rises or has been risen above the hate somehow;

A Tepid Vapidity. . . a soul who’s lost its way in this life, or

A Destructive Odiom, a soul who can’t resist the siren call temporary relief that a vengeful mindset can provide. So shiny is the lure, we forget its hidden hook.

None of us had a choice as to how mesh harmed us and our loved ones, but we each do have the choice to emerge from this pile of ashes as a BEAUTY, though wounded; as VAPID AND NUMB; or seeking to repay evil for evil, falling so far that we, ourselves, have become MALICIOUS.

What will be left of us after the commercials and the trials are long forgotten? What will we have become? It is a difficult question to consider. It is an extremely painful question to consider at all.

We have every reason to be angry to our very core; to lash out in our pain. We have every reason to seek recompense, restitution and AN APOLOGY; every reason to expect those people to pay up, shut up, and go away. We have every rightful reason to hold disdain for these oppressors; the fat-cats who wouldn’t let their wives or daughters go near a mesh product, while they stand in court and so eloquently sing praises to the most holy mesh or stand in a surgery room and implant this ruinous tupperware into another human being, despite knowing there is even the slightest chance of harm. We and our loved ones are permanently injured. We have the right and the choice to be permanently bitter, furious, and set our minds on revenge for the rest of our lives. Who would blame us? Who could? No one.

BUT

There is a different option.

What if we chose – no what if we determined to set our thoughts and actions towards living our lives with joy despite the pain, chose to recognize the beautiful, chose to accept whatever grace, help, and mercy comes our way. What if we chose to be grateful that it isn’t worse; grateful to have had mesh removal; grateful even to have the knowledge that this implant is what has harmed our loved ones and our families? What if we chose to be beacons of hope, and a representation of the indomitable human spirit? What if we chose to joyfully seek occasion to meet others when at all possible, and share our stories to save someone else from harm? What if we became a generation of betrayed and harmed families who refuse to be forgotten; who refuse to go quietly into the night, who refuse to allow our voices to be silenced amidst the clanging noise of the lies, the money, the greed, the inhumane that surrounds us.

And what if we did all these things just to spite them, by reminding them that we are still here.

We are not going anywhere.

We wake up each morning with a clear conscience instead of a Mercedes.

What if our captors are the reason some of us will become great heroes and helpers; the voices that will stop the harm of future generations. What if our joy becomes the bane of their existence, while their baleful existence becomes the instrument of their own demise?

Who would be the fools then?

 

It really isn’t so unrealistic, unattainable, or impossible – not if we all believe, with an unshakeable knowing that we are here on this planet, not to be ravished, destroyed, and wasted; but to be uplifted and to exemplify the best of humanity, the best of human souls. What if we are the next GREATEST GENERATION, right now? The Greatest Generation didn’t know they would be remembered as such. They simply chose with their wills, with their hearts, and with their minds – they chose to do the right thing, and under tremendous adversity. We remember them for their qualities or fortitude, courage, bravery, persistence, sacrifice, frugality, self respect; love of country and family ; and a deep sense of pride in doing right. We cherish and revere them, and we wish there were more people like them. We mourn that so few remain. We mourn that our values are dying out with every death of one great soul, counted among America’s Greatest Generation.

What if we ARE the people like them. Mesh might be a new kind of evil to enter into the history of the world, but adversity and triumph over evil are as old as time itself.

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The Meaning of Christmas

“The Meaning of Christmas”

Brennan Manning, Reflections for Ragamuffins (1998)

In 1980, the day before Christmas, Richard Ballenger’s mother in Anderson, South Carolina, was busy wrapping packages and asked her young son to shine her shoes. Soon, with the proud smile that only a seven-year-old can muster, he presented the shoes for inspection. His mother was so pleased that she gave him a quarter.

On Christmas morning as she put on the shoes to go to church, she noticed a lump in one shoe. She took it off and found a quarter wrapped in paper. Written on the paper in a child’s scrawl were the words,

“I done it for love.”

When the final curtain falls, each of us will be the sum of our choices throughout life, the sum of the appointments we kept and the appointments we didn’t keep. The glory of the shipwrecked will be that they habitually failed to turn up for duty. In their defense they claim they were detained by a baby in swaddling clothes. When interrogated as to why they hung out at the stable, they answer,

“We done it for love.”

In their integrity the shipwrecked preserve the meaning of Christmas in its pristine purity–the birthday of the Savior and the eruption of the messianic era into history.

This Christmas, may you belong to their number.

“We love because he first loved us.” 1 John 4:19

“The Meaning of Christmas”

Brennan Manning

Reflections for Ragamuffins (1998), Page 359

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Do you know how to RECEIVE THANKS?

Hello Warriors;

A short update today, Thanksgiving Day.

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Most of us will think about ways to give thanks today; after all, that is what Thanksgiving Day is all about.

But. . . . consider how you RECEIVE thanks.

When someone tells you:

“You look great!”

“I’m so happy you’re here!”

“The turkey is amazing!”

“Your house is beautiful!”

“Thank you for hosting Thanksgiving!”

“You make THE BEST pies!”

How do you respond? Do you RECEIVE a compliment well?

If you don’t; practice today. I once heard it said that,

“You know you’ve become a woman when you’ve learned to accept a compliment.”

NO IFs, ANDs or BUTs!

No justifications. . .

“Well, I just threw things together,” or “The turkey didn’t turn out like I’d planned,” or “The house is such a mess – we need to redo the bathroom” or “FILL IN THE BLANK.”

RECEIVING THANKS is a part of gratitude and being thankful.

Own your awesomeness today! When someone says, “You make the best pies,” simply say “Thank you.” Even better, share your recipe.

Thanking someone or being thankful for something is only half the equation. Show anyone who compliments you, your “thanksgiving” by accepting the compliment and taking it to heart with a smile. Your loved ones will feel gratitude because you acknowledged their effort, and you will know that you are cherished and people are grateful for you.

Happy Thanksgiving to you all!

With love,

Aaron

 

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” – Dr. Steven Kleeman/Cincinnati, OH and “A Dose of Hope”

Hello Warriors!

Steven Kleeman, MD practices in Cincinnati, and West Chester, OH at Bethesda North Hospital, Good Samaritan Hospital & TriHealth Hospital, Evendale

Steven Kleeman, MD practices in Cincinnati, and West Chester, OH

Here’s your “Doctor a Day.”

READ ON FOR “A Dose of Hope!”

If you live in or around the Cincinnati area, please be aware that this doctor is recruiting new patients for a prospective cohort study which would include the implant of NEW WOMEN with Coloplast’s Restorelle Direct Fix for repair of POP. Here is the study: Restorelle® Mesh Versus Native Tissue Repair for Prolapse

Please share with any friends and/or family members who live in the area, and please take action, yourself, by calling or emailing the doctor to share with him why you think this study is dangerous, or whatever your personal thoughts may be. We may never know who we’ve helped with a single phone call or email.

Dr. Steven Kleeman practices at at Bethesda North Hospital,
Good Samaritan Hospital, and TriHealth Hospital, Evendale.

Good Samaritan Hospital

Contact: Vivian Ghodsi, RN, CCRC    513-463-4308    vivian_ghodsi@trihealth.com

Cincinnati, Ohio, United States, 45220 

Principal Investigator: Steven Kleeman, MD, FACOG 


A Dose of Hope

I am extraordinarily grateful and humbled to have been accepted and awarded a scholarship to participate in an important patient advocacy workshop next week in Washington, D.C.!

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

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

Diana Zuckerman, Ph.D., President of the National Center for Health Research and the Cancer Prevention and Treatment Fund is the workshop’s organizer. Not only does Ms. Zuckerman have a lengthy and impressive career in advocating for patient health and safety; she is also very knowledgeable about mesh and has been speaking out about its risks more than a decade! In fact, she participated in a briefing on Capitol Hill with Dr. Shlomo Raz/UCLA a few years ago.

I am BEYOND GRATEFUL for the scholarship and for this opportunity to learn from, not only Diana, but also her colleagues and the other, 30-or-so, attendees.

The workshop is a two-day learning seminar, and I’m preparing this weekend so I come with a fresh mind, ready to listen and learn. If you have any questions you’d like me to bring up at the workshop, please email me at: themeshwarrior[at]gmail[dot]com or comment on this post with your question.

Helping, Hoping for Healing . . . 

Aaron/The Mesh Warrior