“Writing is a Struggle against Silence.”

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A quote by highly-esteemed author, writer, novelist, Carlos Fuentes.

 

A “MUST READ” for Patients with Chronic Illness/Injury

Hello Warriors;

Over the course of nearly three years of writing this blog, I’ve written mostly about transvaginal mesh and hernia mesh implant.

Screen Shot 2016-05-06 at 7.18.52 AMAs I have become more embedded in the national community of patient advocates, through the National Center for Health Research’s USA Patient Network and other entities, I’ve also spoken about general health and wellness issues, including my own struggle with Hashimoto’s Thyroiditis.

Screen Shot 2016-05-06 at 6.39.43 AMMy struggle with this chronic auto-immune disorder has made me a more compassionate patient advocate, and a more educated patient. It’s also put me in the unfortunate category, sometimes referred to by doctors as, “the difficult patient,” a term mesh warriors know all too well.


 

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Dana Trentini, Hypothyroid Mom

 

I recently read a post, written by Dr. Cynthia Li over at Hypothyroid Mom’s blog/Facebook page.

Dr. Li was diagnosed with postpartum thyroiditis, an autoimmune condition similar to Hashimoto’s. So much of her post resonated with me. Two particular quotes struck me:

 

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Dr. Cynthia Li

“A researcher first explained a line of averages to me during a college internship. I worked in a microbiology lab investigating the effects of hyperbaric oxygen on certain bacteria. When I plotted the results, my data points fell into a rainbow arc on the page. A few dots landed in isolated corners. “What do they mean?” I asked. “Nothing important,” he said. “There are always some that don’t fit in. We focus on the rest.”

Doctors do the same with these stray dots. Toss them out.

I didn’t fit any criteria for disease. Doctors (I) sometimes refer to such patients (me) as ‘difficult patients.’”

She notes her endocrinologist told her, “Let’s see,” while tapping his fingers on the keyboard, “Your numbers are within the reference range.” Too many patients, even doctors who are patients, have experienced this type of arrogant dismissal. I know I have.

Dr. Li continues,

“At a follow-up appointment, a younger endocrinologist at the same university hospital covered for my regular doctor. After reviewing my case, he asked, “Why’d your doctor order the radioactive scan?” It was unnecessary, he said.

Surveys show doctors often recommend treatments they wouldn’t choose for themselves if faced with the same circumstances. Doctors base their recommendations on survival outcomes and disease end-points. (Data.) Patients base their choices on survival as well as quality of life, risks, and experiences of friends and family. (Real life.)”

Her passionately-truthful article is one every patient with a chronic illness or injury would benefit from, by reading.

I encourage you to follow Dr. Li’s progress on her Facebook Page, as she documents her journey in a forthcoming memoir about her struggle with thyroid disease, and the long road to regaining her quality of life.

My thyroid life and I thank you, Dr. Li, for giving us a peek behind the veil of the doctor-patient relationship, both from the patient and doctor’s perspective.

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

Hello Readers;
Vivian Ghodsi, the contact for the FDA’s 522 study of Coloplast’s Restorelle vaginal mesh implant for repair of POP, on behalf of Dr. Kleeman, posted a comment today. I invite you to email her directly with any questions you have about the Coloplast Restorelle Study and her participation in it.

HERE IS HER EMAIL ADDRESS: vivian_ghodsi@40trihealth.com AND THE PHONE NUMBER WHERE SHE CAN BE REACHED TO ANSWER QUESTIONS: 513-463-4308.

Her comment, and my response to her comment are posted below.
QUOTING MS. GHODSI:
“You have mislead your readers about Dr. Steven Kleeman in your Doctor-A-Day profile. It is correct that he is participating in the Restorelle Direct Fix clinical trial, sponsored by Coloplast. However, your statements have suggested that he is implanting mesh for the repair or prolapse. This is false information. There are two arms to the clinical trial, the native tissue (control arm) and the mesh (treatment arm). Dr. Kleeman is participating only in the native tissue (control arm) of the study, which involves no implantation of mesh. Please do your research before you post misleading information about physicians.”

MY RESPONSE:
“Ms. Ghodsi – I did not mislead my readers, and I performed thorough and accurate research. Does Dr. Kleeman currently implant mesh for repair of SUI or POP in his practice? Has he ever implanted mesh for repair of SUI or POP in his practice? In my post, I provided direct links to the publically available information on the FDA’s website. The information you cite is not publically available. Rather than suggesting that the post is misleading, you could simply inform my readers of Dr. Kleeman’s specific participation in the study. You could also inform the FDA that you would like this information included in their citation of the study. You could inform your clientele, or you could inform your study participants that others involved in the study will be receiving mesh. In this way, you would provide the public with facts that are not available to us. You could provide all of the specific information about yours and Dr. Kleeman’s involvement in the study ON YOUR OWN WEBSITE, thereby ensuring accurate information. In my opinion, the above actions are all much more productive steps you could take upon yourself to keep consistent with transparency in healthcare. Sincerely, Aaron Horton”

The Mesh Warrior ℠

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

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MAY THE 4TH BE WITH YOU!

SHARE THE MEME; SPREAD THE IDEA!

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TODAY IS “INTERNATIONAL MESH AWARENESS DAY”

HERE’S AN IDEA . . . 

SHARE AN IDEA, AND SAVE A LIFE!

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MESH AWARENESS DAY IS TOMORROW!

WHAT WILL YOU DO TO GET THE WORD OUT?

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Here are some past blog posts that you may want to share to educate others!

 

APRIL 25, 2016 – Teddy Has An Operation

APRIL 12, 2016 – Symptom Spotlight – “Ascites”*

OCTOBER 20, 2015 – A DOCTOR A DAY KEEPS THIS STUDY AWAY/Dr. Ty Erickson & Lisa Boozer, CRC, of Rosemark Women Care Specialists in Idaho

NOVEMBER 26, 2014 – The VAGINA INTERVIEWS – PART I / DR. DIONYSIOS VERONIKIS

NOVEMBER 26, 2014 – THE VAGINA INTERVIEWS: PART II: GREEK MYTHOLOGY and A MODERN DAY RENAISSANCE MAN – Dr. Dionysios Veronikis

JULY 15, 2013 – THE FACES OF MESH – “Aaron Leigh Horton – When Family Members Suffer”

 

 

Teddy Has An Operation

Sometimes absurd is synonymous with OBVIOUS. (For implanting physicians who read this: The sprinkles are the mesh, get it?)

Maybe this brilliant short film is something that senators, doctors, and the FDA can all understand, since they can’t, rather WON’T, understand one simple concept:

STOP MAIMING AND KILLING REAL, LIVE HUMANS. HUMANS ARE NOT TEDDY BEARS.

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

 

 

 

 

A Great Reminder for All of Us

aggression-487274_960_720Taken from Desiring God.org . . .

“But sinful anger does not bear redemptive fruit. Rather, it leaves us with a grey, burned-over barrenness of exasperated frustration. It produces a sour feeling in the pit of our gut. Sinful anger alienates us from God. It does not move us toward acts of faith and love and true justice, but rather toward acts of selfishness like sullen withdrawal, irritability, rudeness, obstinacy, and bitterness. Sinful anger is characterized by the self-oriented grief of self-pity, not godly grief over evil. And it produces the cancer of cynicism that eats away at faith, eroding our desire to pray.”      

~ Jon Bloom