There are many kinds of non-profit organizations. Sometimes we are asked about how The Mesh Warrior Foundation is classified specifically. It's a simple answer, though terminology can be confusing. According to Mollie Cullinane of the Cullinane Law Group,
"The terms of nonprofit entities can be so confusing … public charity … private foundation … private nonoperating foundations … private operating foundations … public charities that act as foundations. What are they, and how do you tell which is which?
The Internal Revenue Code distinguishes Section 501(c)(3) nonprofit organizations into various tax categories, including private foundations and public charities.
The term 'foundation' can be especially confusing, since a nonprofit organization can use the term in its name, even if it is not an official private foundation."
What is a Public Charity?
A public charity is a charitable organization that (a) has broad public support, (b) actively functions to support another public charity, or (c) is devoted exclusively to testing for public safety. Many public charities rely on contributions from the general public. Donations to public charities are fully tax deductible to the extent of the law.
The Mesh Warrior Foundation for the injured provides some of the above services, but not all. We are (c) "devoted (though not exclusively) to testing for public safety." This terminology is broad, as we do not perform "tests" per se, but we are vigilant in watching the scientific community and the manufacturers of mesh and their testing as it relates to our community of mesh-injured patients. We are ever-watchful to source Tier One Ethics* in research design and testing for public safety. We advocate and source sound science, with disclosures, to share with the mesh-injured community, specifically as it pertains to the marketing and use of medical devices, and more specifically polypropylene mesh. While we do not "rely on contributions from the general public," we do accept donations from the general public. Some examples of public charities are churches, universities, hospitals, and medical research groups.** (*Source: National Bioethics Advisory Council, Georgetown University; **www.irs.gov)
What is a Private Foundation?
A Private Foundation is a charitable organization that does not qualify as a public charity. Such foundations are usually nonprofits established with funds from a single source or specific sources, such as family money or money from other entities – instead of funding from the general public. This is the case for TMWF. We were established with family money, and our main sources of income are from entities, not individual persons. Click to view the TMWF SPONSORS | UNDERWRITERS | PARTNERS page. TMWF invests our funding for charitable purposes. We do not have endowments at this time.
According to Joanne Fritz, a nonprofit charitable organization expert, an endowment is:
"A fund that is made up of gifts and bequests that are subject to a requirement that the principal be maintained intact and invested to create a source of income for an organization. Donors may set up an endowment to fund a specific interest; and a nonprofit's governing body may set up an endowment. In any case, an endowment requires that the principal remain intact in perpetuity, or for a defined period of time, or until sufficient assets have been accumulated to achieve a designated purpose."
Sounds pretty great, but TMWF is just over a year old, and we're not quite there yet!
The IRS recognizes two types of private foundations: private nonoperating foundations and private operating foundations. The principal difference between a private nonoperating foundation and a private operating foundation is how each distributes its income:
- A private nonoperating foundation grants money to other charitable organizations. This is the more common type of private foundation. These foundations do not directly perform any charitable programs or services.
- A private operating foundation distributes funds to its own programs that exist for charitable purposes.
"Both types of private foundations are subject to restrictions and requirements. For example, they cannot do business with their major contributors; they are subject to excise taxes and can face penalties for self-dealing, making risky investments, and for failing to distribute adequate funds to charitable endeavors, among other regulations."
Why is the Word “Foundation” So Confusing?
"Not every organization that uses the word 'foundation' in its name is a private foundation, and the word 'foundation' has no legal meaning in and of itself," according to Mollie Cullinane, who also says, "To look further to discover an organization’s actual tax-category, review the organization’s IRS filings: public charities will file Form 990; private foundations file Form 990-PF."
We use our funds to create programs that exist for charitable purposes in support of our TMWF Mission to EDUCATE | ADVOCATE | and BUILD COMMUNITY for the mesh injured and their families.
As a private operating foundation, the IRS allows us to back-date tax-deductible donations to our date of incorporation (March 11, 2014). Our donors have until June 11, 2016 to file their tax deductions, upon our receipt of 501(c)(3) status, well before that date.
". . . only from the date it files its application, rather than the date that it was created or first became described in section 501(c)(3). The organization may obtain retroactive exemption, however, if it establishes that it qualifies for relief from the 27-month deadline."
Below are some of our programs that exist for charitable purposes in support of our mission:
- Education through published writings - We write for patient advocacy outlets including WeGo Health, Mesh News Desk, other charities, media outlets, and as a guest blogger for other entities.
"Color for a Cause" - We attend patient advocacy events, wearing turquoise blue, sometimes even on our lips, to create awareness and spark conversation so that we may educate others face-to-face when they ask, "Why are you wearing blue lipstick?!" We have also created mesh-injury awareness items sold online via our Yes M.A.M.Market. We sell these items to generate awareness and get people asking questions about mesh-related injury. 100% of the proceeds from the sale of these items go to the foundation.
- We chose the turquoise shade of blue because manufacturers used this color to market to doctors, when it was discovered that the clear mesh was eroding, causing pain, causing fistulas, roping and fraying. The manufacturers used a change of color to assure physicians that this "improved" mesh, blue in color, would be easier to place properly because its color could more easily be differentiated from human tissue. The manufacturers' theorized that coloring the mesh would make it easier to see upon placement, and it did. It also made it harder for physicians and manufactures alike to deny the mesh was eroding through organs; was becoming dislodged from its original placement; and that it was breaking off and migrating to other parts of the body. (Source: Batiste vs. Ethicon, 2014)
- Public Speaking - Our founder speaks to organizations who may benefit from our collective expertise. These organizations include women's groups, church groups, assisted living communities, other nonprofit entities, private gatherings, in short, any organization that believes their community will benefit from our growing knowledge base and resources.
Trial Attendance – We attend the trials of injured patients to advocate for them during a very delicate and difficult part of their journey with mesh. In our experience, patients have received our support in this way as a great encouragement and as a representation of the community at-large. We write about trials in an effort to educate mesh-injured women who may have an upcoming trial or who may simply benefit from knowing the details and inner-workings of the trial process. At each trial we’ve attended, we’ve had mesh-injured women and men who want to attend with us to show their support for the plaintiff. In this way, we find trial attendance advocates for the plaintiff standing trial and for the injured community as well. In the absence of media coverage, our attendance at trials and our subsequent writing also provides a greater understanding to the community as to how defective mesh products made it to the marketplace with no testing and very little oversight.
- Media Outreach - Many of you know that the mainstream media has not reported on the details of mesh injury. For reasons unknown to us, polypropylene mesh injury and the havoc it wreaks on millions of people has not been of particular importance to the media. TMWF often contacts mainstream media to educate them and ask them to "cover the issue" so that our voices are amplified and so that we may be of service to those individuals outside our core community who do not know of the dangers of mesh. In seeking out appropriate media (health, business, and trade reporters), we are able to educate the public at no cost to the foundation, other than the time spent contacting media, following up with media and providing interviews and facts for their stories. See or media outreach efforts and accomplishments here: IN THE NEWS.
- Conference Attendance - Because of the generosity of our donors, we have attended and will continue to attend Stanford Medicine X, our country's preeminent medical conference for patient advocacy. At Med X, we are able to join forces with other outstanding individual patient advocates and other patient advocacy organizations, including those that are for-profit and those which are nonprofit entities. As patient advocates, we share many of the same goals, and our voices are louder together. We learn from one another, and the conference gives us one-to-one access with doctors who have a heart to listen and change their relationships with patients, once they truly understand the healthcare system from the patient's point of view.
- Blogging and Social Media - The internet is a powerful tool when it comes to patient advocacy. So many individual patient advocates are doing great work in their spheres of influence. As a part of the active health-blogging community, we are able to write stories that educate and advocate for the mesh injured to those outside our core community, so that others understand the MESH MESS and how it happened. We write educational blogs for WeGo Health, a community of almost 19,000 active patient advocates and bloggers with an online presence and we participate and contribute to the Stanford Medicine X Online Community. The resources of social media enable us to communicate about current events, write research-oriented, patient profiles, and blogs simply for encouragement. We belong to a large community of internet health writers, and our relationships with them help to further the message and mission of TMWF. Our social media presence (via Twitter, Facebook, Google +, Tumbler, Instagram, Pinterest and through the TMWF Blog) helps us connect with other like-minded patient advocates and patient advocacy organizations whose goals are in line with those of TMWF.
Partnerships and Alliances - When we combine forces with others' advocacy efforts the message of both organizations are amplified and reach others. Some examples of our alliances are:
- Rachel Brummert, executive director of The Quinolone Vigilance Foundation whose MISSION is "to understand and reduce Quinolone Toxicity as a cause of human suffering in the world." (SOURCE: www.saferpills.org). Rachel and her team work to warn other about harmful antibiotics in the quinolone and fluoroquinolone class of antibiotics (Cipro, Levaquin, etc.). Our alliance with QVF allows us to educate their community about the harms of mesh, while they are able to educate our community about the dangers of certain antibiotics, which are used often for mesh-related infection.
- The Lown Institute - This nonprofit organization's mission is "Do as much as possible FOR the patient and as little as possible TO the patient." Click to read the Lown Institute Brochure. The organization addresses over treatment of patients by the healthcare industry, which is of special significance to the mesh-injured community, as many patients received this faulty medical device when another procedure, with much less risk, could have been performed, or in some cases; no procedure at all was necessary.
BUILDING COMMUNITYWe refer to our community at-large as our "Family of Chance." None of us would wish the life-changing, profound and devastating complications of mesh injury on ourselves, our loved ones, or any human being, but mesh injury has brought us together nonetheless.
Our goal in building community through TMWF has always been to create and foster face-to-face, lasting friendships rather than Facebook-to-Facebook online "friends."
Still, we understand that Facebook and other online platforms are a stepping stone to connecting injured persons who would like to have real-world friendships and support by others in this "Family of Chance." TMWF has experimented with a number of ways to build community, and we haven't quite found THE answer, but we continue to seek the best ways to connect mesh-injured people with others who are experiencing the same complications - similar issues with the healthcare community and doctors; similar symptoms; similar family dynamics; and great similarities in the loss of quality of life. We want those in our community to know "You are not alone."
- The Mesh Warrior Facebook Page - Our founder, Aaron Leigh Horton/The Mesh Warrior, maintains a public Facebook page for a very specific purpose. The population that uses Facebook is overwhelmingly comprised of women, specifically, and of both sexes - ages 30 and older. Virtually free, Facebook is unmistakably, an incredible online resource for reaching the injured and those who have not been injured yet or those who have an injured family member. Though we maintain a public Facebook page in support of TMWF, we no longer host a “closed, private or secret” page on Facebook, as we found that this method did not serving our mission well – to build community.
- TMW Foundation's Page (www.tmwfoundation.org) - Once we became aware of the limitations of Facebook, we sought out another platform for connecting the mesh-injured community. The TMWF website is built using a platform called NationBuilder, a software platform created for non-profits, by two-time cancer survivor and programmer, Jim Gilliam. View Jim's TED Talk to learn more about his story and inspiration for creating the NationBuilder software. He was seeking a way to provide non-profits with an affordable alternative to developing a website from scratch. He wanted those non-profit communities to have a way to connect to one another, around a common health condition or other issue. The TMWF website has been useful to connect our community in many ways, and we are grateful for Jim's vision, but because many members of our "Family of Chance" have a pending legal settlement or are involved in a legal proceeding or cause of action, we have found that the public nature of the forum has been a source of fear and confusion for some users in our community. Some feel it exposes them to possible harm, either by inadvertently being a resource for defense attorneys to mine, or by the way the NationBuilder platform's personal profile "Go-Fund-Me" type fundraiser function works. Unfortunately, NationBuilder does not have the ability to remove just the personal funding function/page, though each member can choose to make this part of his/her profile "private" by simply checking the box, "I do/do not want this page displayed on my public profile." With regards to the personal funding page, NationBuilder is a binary system. Either the community function (including the personal fundraiser page) is ON or it's OFF - globally, for each individual user, site-wide. So, for now, TMWF has turned the community function OFF, as we work with NationBuilder and/or search for another (more private) way to connect to one another.
- Voice-to-Voice and Face-to-Face - Our founder and board members have spoken with hundreds and hundreds, likely thousands of women and men by now, who need support, education, advocacy and community. Our founder makes her personal phone number public (214 [dash] 415 [dash] 0415) because our organization is committed to providing words of encouragement or pointing an injured person or family member towards resources and others who can help. The TMWF board members do the same. As a result, our board members have built friendships with many injured men and women, and we am thankful for their friendships and for their courage. Some have been willing to share their stories, so that others may understand the catastrophic injuries that mesh implant can cause. For those who participate in our "Family of Chance" and have shared their stories with the public, we are most grateful. It should be noted that we obtain WRITTEN AUTHORIZATION from each person who wishes to share his or her story via "The Mesh Warrior" Blog or via the TMWF website under Patient Profiles: THE FACES OF MESH. Stories are NEVER posted without written without consent, which we keep on file. Stories are written in partnership with injured patients, with the hope that others will be educated and warned because of another's courage to share their journey and experience with mesh. We also provide a SHARE YOUR STORY OPEN-SOURCED BLOG, for those who wish to share their stories via our site.
TMWF is a private operating foundation with a simple mission:
To Educate, Advocate and Build Community for the mesh-injured and their families.
WHAT WE ARE NOT: TMWF is not a 501(c)(3) organization YET, but that doesn't mean there are not laws and rules that govern our operation. There certainly are. Becoming a 501(c)(3) is a big step and, to do it the right way, takes careful evaluation of what we hope to accomplish through the foundation now and in the future. It's also not cheap, no matter what anyone says. The fee for filing is a sliding scale, based on an entity's projected operating budget and income. It is not a flat fee. Further, to prepare the documentation correctly and as to-the-letter-of-the-law as is humanly-possible, it is best to employ the help of a professional, which also costs money.
TMWF does have the intention of becoming a 501(c)(3) nonprofit entity, but we will do so in the proper time with the proper resources. See below for documentation of the legal operation of TMWF as a PRIVATE OPERATING FOUNDATION.
3/11/2014 - Texas Secretary of State issued Texas 202 Form (Officers noted here were officers when the non-profit entity was formed. Some officers have changed.) See current officers and board here: TMWF-WHO WE ARE.
4/7/2014 - IRS EIN (Employer Identification Number) Issuance - Whether for profit or not-for-profit, the IRS REQUIRES and automatically issues every entity making financial transactions an EIN to track taxes, including employment taxes, that must be paid by the organization.
*Note that under the Pension Protection Act of 2006, "Small nonprofits should file the Form 990-N if they had been exempt from filing the Form 990 because their annual gross receipts were $25,000 or less (the thresh hold has been since raised to $50,000). *SOURCE: Nonprofit Coordinating Committee of New York
IRS: Private Foundations
When Family Members Suffer – Watching a Loved One Hurt by Transvaginal Mesh
"Your Call to be a Mesh Warrior"
Jul 25th, 2013
by Aaron Leigh Horton
For many of us, family members of those implanted with transvaginal mesh, life is now largely about watching someone we love writhe in unendurable pain for days on end, staying up nights kissing foreheads, caressing locks of hair, whispering prayers or songs of comfort, locking eyes with a bottomless suffering we feel helpless to stop, trying to do or say anything that will MAKE. IT. STOP. for just a moment. The focus is and always should be on our injured loved ones but this, as we now know, is a family illness that reaches through them, sprouting tentacles into everyone they love, making its home in all of us.
“Mothers are the backbones of our families,” said one of the many women sometimes called “Mesh Angels” whose own body now fights against her every day as it tries to heal from what initially was described to her and thousands of others as a minimally-invasive, outpatient surgery. Her comment struck me as incredibly profound, since even through the blurred and shaky lens of chronic pain, she sees what happens to all of us, when an offender, especially one that came so neatly packaged inside the proverbial Trojan horse, steals our matriarchs so suddenly. The culprit has many names “Transvaginal Mesh,” “Pelvic Mesh,” “Synthetic or Polypropylene Mesh,” and though the product has been scientifically proven to be harmful and toxic to humans, it’s being sold this very second to patients all around the world, through trusting doctor-patient relationships. The mesh is often presented as the gold standard, state-of-the-art solution used to repair two common medical problems: POP (Pelvic Organ Prolapse) and SUI (Stress Urinary Incontinence).
The reality of the mesh’s impact has nothing to do with a reliable solution and certainly nothing of gold. Our mothers, aunts, sisters and grandmothers have been directly injured by surgeon’s knife and we- daughters, nieces, grandchildren, and husbands have been injured too- by the loss of our most precious family relationships, and we are all wondering, “How could this have happened?” The answer is lengthy, with many entities and systems, corporate decision makers, manufacturers, and yes, doctors, who share culpability. There is much we now know, about what was known, and when it was known with respect to the toxicity of mesh and its success rate against the more tried-and-true non-mesh methods used to address these medical conditions for decades.
My story is as the older of two daughters trying to cope with a new reality, a new family dynamic, one with Mom still at the center but in a different way. My mother had the mesh implanted in December 2009. The last “normal” memories I have of her are sometime in early March 2010, while on a family vacation. She was in pain the entire trip, but she fought through it courageously, as her surgeon kept telling her the pain was just post-surgical.
Mom, a retired head-of-the-class RN, knew the pain was different somehow and tried to explain that to her surgeon. The doctor simply wouldn’t listen, wouldn’t return calls, wouldn’t lend credence. The doctor didn’t have an answer and seemed to me to be afraid of finding one. Steadily, my mother declined as we tried to find out what had gone wrong. More than a year of multiple nerve blocks to try and locate the source of the pain, agonizing diagnostic tests, various specialists, and still no answers. Early on my sister and I attended one of these diagnostic tests, signifying our support and declaration to be part of the solution.
My mother has, sometimes what seems to me, a freakishly high tolerance for pain, partially genetic I guess but also, I figure, a result of years suffering through debilitating migraines. For whatever reason, she has what you might call a thick skin. I believed I was there during this test for moral support or as a chauffeur mostly, in the way I had been as a teenager during trips to the ER, when her migraines would rage so out-of-control, that only IV morphine could come close to taking off the stabbing, relentless, throbbing pain. But this time was quite different.
As the doctor performed the test, I saw a look in her eyes I’d never seen before: all-encompassing, far-reaching, out-of-her-mind terror, the kind you usually only see in a child’s eyes. I have never been to the place she visited that day. And I have never been to the place she has lived every day since.
That appointment, in early 2011, was the real start of the journey for me as a caregiver, as I asked myself, “Is the treatment worse than or equal to the pain of this condition? Where does that leave us? Who can help us now?”
Mom has always been the one who knows what to do. Normally I would have asked her those questions, and she and my step-dad would have had a very pragmatic plan for success, one I would have confidently followed to its end, expecting the results we all anticipated.
By March of 2011, my mother begged to be admitted to the hospital.
My step-dad presented her thrashing and crying inconsolably to their family doctor – out of ideas, completely devoid of another way to soothe. No amount of healthy eating, attempts at something like stretching or yoga, massages, breathing exercises, guided imagery, prayer, healing chants or other well-intentioned suggestions could reign in her pain. Even the meagerness of a steady regimen of oral, opiate-based medications against the adversary of this chronic condition was now apparent. IV narcotics were the only solution presented to us. She was kept in the cancer unit since the high doses of medication needed to keep her somewhat comfortable required observation by nurses experienced with the unrelenting pain of terminal patients. I spent most nights with Mom, keeping a blog to communicate with extended family and friends. Here is an excerpt from my blog that March:
March 23, 2011 11:12pm
“Earlier this evening we all agreed to seek out every last bit of hope from the good news of today. I asked Mom if she could just visualize basking in it, and she said she would.
After a very trying couple of days, we had a break through today. We finally met with Dr. X, a pelvic pain specialist. I think I’m beginning to develop a sort-of Pavlovian response to her, and upon hearing her name, I instinctively relax and associate her with good news and a prolonged sense of calm. Dr. X is thorough, patient, focused and reassuring in a sincere and confident way. I feel like we’re made of flesh and bone in her office. She has other patients with similar symptoms to what Mom is experiencing, so she speaks our language. She uses as many polysyllabic words as all the other doctors, but when she speaks, it just makes sense.
We left there with a comprehensive course of action and a plan that we will be following and testing for the next 8-10 weeks. It includes all the elements that we’ve been discussing as a family:
- Is the approach focused on diagnosing the cause of pain?
- Does the approach work together with pain-relieving medications while not relying on them as a long-term solution?
- Is the approach focused and systematic?
- Do we have a contingency plan if this approach is not producing results?
- Will Dr. X be willing and able to work together with the pain management/medications specialists?
The answer to all these questions is yes. That means we finally have a “treatment plan”. It’s simple really, but it’s the first time we have felt that a comprehensive, cohesive outlook is coming together.
In short, Dr. X’s theory is that Mom’s last nerve block sent her abdominal and pelvic muscles into spasm, and that this flare up in pain is coming from, not the nerves, but the muscles. She believes we can release the spasms with frequent physical therapy. She believes this is quite possibly a long-term solution that will provide significant pain relief. With all the customary caveats, she even shared that some of her patients have become pain-free with this regimen. Dr. X was very supportive of the other therapies we’ve been discussing, so we’re full steam ahead on those as well.
So Mom saw the physical therapist late this afternoon, and starting with next Tuesday, she’ll begin a weekly regimen of traveling on Tuesday and Wednesday for appointments with the physical therapist and also with the psychologist who specializes in treating the mental and emotional distress associated with chronic pain.
In a way, we’re back to where we started, but the difference is that as a family, we’re all in agreement with the courses of action we’re taking; we have doctors we trust as partners; and we have all of you who are now intimately aware of how to support Mom in healing so she’ll never feel totally alone in her pain or God forbid it, forgotten or lost in that dark place from which she can’t return.”
But that was more than two years ago now. After these therapies failed to alleviate the constant pain, our “treatment plan,” quickly faded, as did our family solidarity, into a silence of confusion, fear and sadness, everyone in their neutral corners, no one with answers. No one.
The experience with her roster of doctors left me confused about the bigger picture. How do you make the original urogynecological surgeon communicate with her pelvic pain specialist? How does the pelvic pain specialist maintain a comprehensive plan with the pain management specialist? Why isn’t our family physician at the center of this medical mystery, and most of all, “How is it that I am the only one asking these questions?” I’m no doctor or specialist, but this is logic, project management, common sense. Why aren’t any of these doctors interested in the cause of such an enigmatic syndrome? Why don’t they have a hunger to know more, or at the very least, a compassion that would drive them back to the curiosity of their med school years?
We had few facts:
- Mom is in miserable, insufferable pain.
- It’s inhumane to allow someone to remain in this condition.
- The original surgeon who implanted the mesh won’t talk to her/us and doesn’t know what to do.
- The pelvic pain specialist doesn’t know what else to do.
- Mom is too precious to lose.
- A life of indefinite treatment of symptoms with medication, without regard for cause, seems to be a fine solution for every doctor.
I have never doubted my mother’s pain. Never. But I know many sufferers are doubted by their own family members and by doctors, simply because their wounds seem invisible. My mother’s eyes have made those wounds visible to me. I can read her beautiful, Caribbean-sea-blue eyes as if they were translucent, and I have sorrowfully become all too familiar with what was once an unrecognizable plea for help, and which I can only now describe as a daily terror.
At the expense of seeming biased, my mom is brilliant. She is creative, educated, informed, a lovely person. As a former RN, she knew something quite extra-ordinary was wrong. I ask myself, and so too should you, why would a doctor not listen to someone like that? And if someone “like that” isn’t given real audience with her original surgeon, then what about the rest of us who aren’t well-versed medically, who don’t have a medical career to lend credibility to our pleadings?
Mom didn’t give up. She was a student of her own body. She instinctively knew of the recurrent infections lurking in the mesh and the different type of pain brought on by cysts in and around the mesh. Imaging tests revealed that she was right. I have to fight the temptation towards sarcasm at this moment, because I’m amazed that somehow my mother was able to be patient, patient advocate, nurse, doctor, diagnostician, and healer – all in her unthinkable condition.
With the imaging tests confirming her suspicions, she knew the mesh had to come out. Through the confusion, doubt by other trained professionals, misunderstandings by family and a lack of education about what I’ll call “the mesh syndrome,” she knew the mesh was the culprit. She called it “the alien” and insisted that it had to come out.
As women, we are taught to become students of our own bodies, understanding them through pregnancy and that surge of monthly hormones, self exams, etc. and with that knowledge, the phrase “a mother’s intuition” makes quite a bit of sense, doesn’t it?
Doctors know what they’ve been taught. But patients know what they have lived, and we all know that knowledge and experience are very different things. Neither is more important. Both are necessary. Collaboration, based on a shared desire to know the truth, is the highest ground. Some of the worst emotional and mental agony for my mother and for our whole family has been due to continued invalidation by doctors and the medical community. Not knowing the diagnosis for medical symptoms that present is not an excuse for lack of compassion, feigning ignorance or negligence. There are skills our loved ones have had no choice but to develop to endure the excruciating physical therapy; humiliating, soul-assaulting exams; degrading treatment by uncompassionate doctors; and yet another “this surgery will be the one that works” attitude from us who “just want you to get better.” It is a lot of pressure for anyone, and certainly for someone in debilitating pain EVERY. SINGLE. SECOND. As doctors, caregivers, family, and friends, we must accept that we have the same responsibility to learn new skills, not by necessity, but by choice.
Our loved ones have no choice. Mom sat through birthday dinners in thinly-veiled pain; cried alone after having to decline social engagements, grandkids’ soccer games, phone calls from cherished friends; and she sat feeling purposeless, unable to participate in vocations and hobbies that once called to her. My mom still wrapped Christmas presents, responded to texts, and asked about mine and my sister’s lives, all the while trying to make sense of her new reality life, a life of constant pain and tears, too many to count, and that most damning and worst of all emotions, guilt. Maybe she’d chosen the wrong surgeon. What if she had just endured the original pain and discomfort from organ prolapse? What if it was “all in her head?” What did she do to deserve this? And like many of the other raw, unanswered questions, the answer is nothing. Nothing. Nothing. Nothing.
It’s been just over two months since my mother had her explant (mesh removal), but as is often the case, the surgeon could not safely retrieve all of the mesh. We’re in a holding pattern for now, as she heals and tries to tease out post-surgical pain from the uninvited guest of chronic pain, which has been her constant companion for almost four years now. We’ve been down this road before. Do we dare hope this will be “the answer” or do we risk pessimism, so as not to be devastated for her and with her once again when the pain does not abate? Time will tell. For many women, including my mother, multiple revision surgeries are needed to remove mesh, reconstruct injured organs and eliminate infection.
This experience has taught me that a life that can be lived while heavily medicated- always trying to stay ahead of the pain- sometimes to avail, sometimes not. A life can be lived being made to feel like a street thug-drug addict because insurance denies payment for necessary narcotic medications, or family members can’t comprehend the pain level. A life can be lived with invisible scars and wounds that others can’t or won’t see. A life can be lived immersed in a lonely, internal, altered state of reality that friends and family are unable to share, understand, respond to or cope with adequately.
My challenge to YOU, husband; YOU, daughter; YOU, aunt; YOU, sister; YOU, friend is:
How will YOU choose to live life alongside your injured loved one? What gifts and talents do you already posses to understand, respond to, better cope with and support? Can you use your skills to help make the voices of victims heard? If you don’t have the skills, get them. And if you don’t know how, ask me. Ask someone you know. If you don’t, who will? We are their only hope some days and have the power to be part of their hope every day. I’ve heard it said that having the mesh feels like slowly dying from the inside out, rotting and disappearing. When our Mesh Angels can’t fight anymore, we must fight for them, be their Mesh Warriors.
ALWAYS, ALWAYS BELIEVE THE CRIES OF PAIN AND AGONY FROM YOUR LOVED ONE, NO MATTER HOW ODD THE COMPLAINT MAY SEEM TO YOU. AND NEVER, EVER, EVER GIVE UP HOPE that you will get it right, that we as a community will get it right, and that the family life we once had, can be made whole, but it will not come easily or without strife. Good things seldom do, and it could be argued that our matriarchs are the most good we can experience in life.
Written especially for my mother
As part of an ongoing series: Doctor Directory, Mesh News Desk will bring you interviews with the leading doctors involved with the current transvaginal mesh issue.
Meet your newest FRENEMY; looks like a friend; acts like an enemy: The ethiCON Artisyn® Y-shaped Mesh!
Are they serious? "ARTISYN?" Are we supposed to think of fresh-baked bread and hand-crafted furniture? I did an impromptu experiment and asked our little community, "What is the first word that comes to mind when you hear the word 'ARTISAN' with no context."
Family Feud style.... "Survey Says... BREAD!" Yes, fresh artisan-style bread was the number one answer, followed by various iterations of crafty, creative and handmade. This is no coincidence, my mesh-injured family of chance. Marketing teams spend ridiculous amounts of money on focus groups and research to delve into the psyche of their "core customer base" when inventing new product names. I have been involved in many-a-heated conference room discussion with more than one Ivy League-trained CEO arguing for hours about how to launch a new food dish or line of menu items and what to name each item. If that much thought goes into creating the name of a new hamburger or salad dish, how much more thought do you reckon goes into the naming of a singular, multi-billion dollar medical device, already fraught with problems?
I don't know about you, but I'm pretty darn flabbergasted at the arrogance of this company. Do they think we don't know what the word "artisan" means when spelled correctly? Do they REALLY think that conjuring and implanting images in our minds of the warm smell, freshly baked taste and the cozy feeling of safety evoked by freshly baked goods will CON us into thinking that their HORRIFIC mesh made en masse mechanically at factories is safe now? "Oh, well you didn't tell me THAT before - it's made in the style of an artisan. Totally safe. Let's do it!"
Thanks for ruining yet another previously-innocuous word for the whole world. Implicit in the word is the creation of such crafts in small quantities. The actual meaning of the non-registered and trademarked word, "ARTISAN" which no one can actually own the intellectual property of is below via dictionary.com:
artisan [ahr-tuh-zuh n]
Aaron Leigh Horton/The Mesh Warrior
Like many of you, I am many things to many people.
I am a wife; a mother to one angel baby; two step-kids & three fur babies; a daughter; a sister; an aunt; a grand-daughter; a god-daughter; and a friend. When Mesh came into my life, I faltered and failed in a lot of those roles. But as the daughter of a mesh-injured woman, I’m learning how to do things a bit differently now, and I’m gaining a new set of skills to be part of my mother’s and my family’s recovery. If you are mesh injured and find your that most treasured relationships just don’t work like they used to, you’re not alone.
There are many who can help. I’m just one of them.
Most importantly, I am a PATIENT ADVOCATE, for those injured by transvaginal mesh and for others who've been preventably harmed by our failing healthcare system.
But, I was also a waitress once. And then a few more times after that.
Another time I was a “Senior Account Supervisor.” Sounds mildly important, but not too threatening, huh?
Once I worked in a gift shop. I cleaned a lot of glass shelves.
I have been a food judge for the State Fair of Texas for going on 6 years now. I recently got promoted from Candies/Truffles to One-Pot Meals. I’m pretty stoked.
I was a Marathoner. Once. No really, like I ran one marathon. I have the shirt to prove it!
Love all types of animals, and I am one who unabashedly travels great distances with a piece of luggage containing a well-dressed, 15-pound “Porkie.” For car rides, my German Shepherd-Chow mix, Gabby, as well as sister, Juniper, the American Redbone Coonhound come along. The Chow mix is way more civilized and well behaved than the decked-out Yorkie or the purebred and rare Coonhound. They like to hike and camp with my husband and me.
Currently, I beg daily for household approval from our "Pack of 5," for a tiny pig. No “yes” from the husband on that one . . . yet, and the rest of the pack thinks "tiny pig" means "toy" or "snack." The Pack is not listening, and currently, I am out numbered!
Though life goes on, my greatest desire is to be of service as a patient advocate; to educate my community and yours; and hopefully, to be part of the reason that our collective voices will be loud enough to change healthcare so that patients are put before profits, and that patient outcomes - as defined by an improved quality of life - becomes the norm, not the exception.
FDA Releases Proposed Rule to Establish ‘Gluten-Free’ Labeling Compliance Requirements for Fermented, Hydrolyzed and Distilled Foods
Posted by Aaron Horton · November 17, 2015 11:36 AM
900 New Patients Being Recruited for FDA Study: Restorelle® Mesh Versus Native Tissue Repair for Prolapse
Posted by Aaron Horton · October 15, 2015 9:59 AM
Simply put, our foundation exists to EDUCATE, ADVOCATE, AND BUILD COMMUNITY for the mesh injured and their families.
In more specific terms, we are a collection of volunteers, injured patients and injured family members. We support all those who've been harmed by the dangerous medical device called medical polypropylene mesh (Polypropylene Plastic, Class #5). The device was never tested on live humans before coming to market.
Most injuries have come from using this plastic substance to repair three very common conditions: SUI, POP and/or Hernia (see below for details). There are many organic procedures that are as effective as synthetic polypropylene mesh and have been used successfully, for many years, before the advent of the very profitable medical mesh.
GLOSSARY OF BASIC TERMINOLOGY
STRESS URINARY INCONTINENCE or SUI (men and women):
Urinary incontinence is the unintentional loss of urine. Stress incontinence is prompted by a physical movement or activity — such as coughing, sneezing, running or heavy lifting — that puts pressure (stress) on your bladder. Stress incontinence is not related to psychological stress.
Stress incontinence is also different from urge incontinence, which is the unintentional loss of urine caused by the bladder muscle contracting, usually associated with a sense of urgency. Stress incontinence is much more common in women than men.
If you have stress incontinence, you may feel embarrassed, isolate yourself, or limit your work and social life, especially exercise and leisure activities. With treatment, you'll likely be able to manage stress incontinence and improve your overall well-being. Make sure to ask your doctor for all available options, surgical and nonsurgical.
PELVIC ORGAN PROLAPSE or POP (women):
When the muscles and ligaments supporting a woman's pelvic organs weaken, the pelvic organs can slip out of place (prolapse). Pelvic organ prolapse can worsen over time, and you may need surgery to fix it. There are different types of pelvic organ prolapse. Some women develop pelvic organ prolapse after childbirth, a hysterectomy or menopause. Read more about anterior prolapse (cystocele), posterior prolapse (rectocele), uterine prolapse, and small bowel prolapse (enterocele).
Uterine prolapse occurs when pelvic floor muscles and ligaments stretch and weaken, providing inadequate support for the uterus. The uterus then slips down into or protrudes out of the vagina.
Uterine prolapse can happen to women of any age, but it often affects postmenopausal women who've had one or more vaginal deliveries. Damage to supportive tissues during pregnancy and childbirth, effects of gravity, loss of estrogen, and repeated straining over the years all can weaken your pelvic floor and lead to uterine prolapse.
If you have mild uterine prolapse, treatment usually isn't needed. But if uterine prolapse makes you uncomfortable or disrupts your normal life, you might benefit from treatment.
A cystocele (SIS-to-seel) occurs when the supportive tissue between a woman's bladder and vaginal wall weakens and stretches, allowing the bladder to bulge into the vagina. A cystocele is also called a prolapsed bladder.
Straining the muscles that support your pelvic organs may lead to a cystocele. Such straining occurs during vaginal childbirth or with chronic constipation, violent coughing or heavy lifting. Cystoceles also tend to cause problems after menopause, when estrogen levels decrease.
For a mild or moderate cystocele, nonsurgical treatment is often effective. In more severe cases, surgery may be necessary to keep the vagina and other pelvic organs in their proper positions.
Rectocele (also called "Posterior Prolapse")
A posterior prolapse occurs when the thin wall of fibrous tissue (fascia) that separates the rectum from the vagina weakens, allowing the vaginal wall to bulge. Posterior prolapse is also called a rectocele (REK-toe-seel) because typically, though not always, it's the front wall of the rectum that bulges into the vagina.
Childbirth and other processes that put pressure on the fascia can lead to posterior prolapse. A small prolapse may cause no signs or symptoms. If a posterior prolapse is large, it may create a noticeable bulge of tissue through the vaginal opening. Though this bulge may be uncomfortable, it's rarely painful.
If needed, self-care measures and other nonsurgical options are often effective. In severe cases, you may need surgical repair.
Enterocele (also called "Apical Prolapse" or "Vaginal Vault Prolapse")
Small bowel prolapse, also called enterocele (EN-tur-o-seel), occurs when the small intestine (small bowel) descends into the lower pelvic cavity and pushes at the top part of the vagina, creating a bulge. The word "prolapse" means to slip or fall out of place.
In women who have had surgery to remove the uterus (hysterectomy), small bowel prolapse is also called apical prolapse or vaginal vault prolapse and may involve the bladder or rectum as well as the small bowel.
Childbirth, aging and other processes that put pressure on the pelvic floor may weaken the muscles and ligaments that support pelvic organs, making small bowel prolapse more likely to occur.
To manage small bowel prolapse, self-care measures and other nonsurgical options are often effective. In severe cases, you may need surgical repair.
HERNIA REPAIR (men & women):
A hiatal hernia occurs when part of your stomach pushes upward through your diaphragm. Your diaphragm normally has a small opening (hiatus) through which your food tube (esophagus) passes on its way to connect to your stomach. The stomach can push up through this opening and cause a hiatal hernia.
In most cases, a small hiatal hernia doesn't cause problems, and you may never know you have a hiatal hernia unless your doctor discovers it when checking for another condition. But a large hiatal hernia can allow food and acid to back up into your esophagus, leading to heartburn. Self-care measures or medications can usually relieve these symptoms, although a very large hiatal hernia sometimes requires surgery.
OTHER COMMON TYPES OF HERNIA: FEMORAL, UMBILICAL, INGUINAL
*Prolapse of a single pelvic organ or any combination of one or more pelvic organs is possible.
*Polypropylene Mesh is an FDA-Cleared (NOT FDA-APPROVED) device and is used in many surgeries. Ask your doctor before having any major surgery exactly what will be implanted, if anything, and ask for details on the implant's material makeup (plastic, copper, stainless steel, etc.).
*Source: Mayo Clinic
*This information is provided as an educational resource only and should not be construed as a replacement for professional medical advice. Consult your doctor.